Motherofachildwithaillness

Update

2012-02-09T07:34:00.000-08:00

We came back from Jack's Rochester appointment the other day. It was a frustrating appointment. At his last Cleveland appointment they said he has connective tissues disease. This of course is aside from his mitochondrial disease. We go to Cleveland next Wednesday to see a genetic specialist. Jacks doctor here wanted us to go see a doctor in Rochester as well. We went three years ago to see this same doctor. It was frustrating because they could only talk about what we were there for three years ago then . In many ways I felt it was a waste of my time. I pray next Wednesdays appointment in Cleveland is much better. I pray we get some true answers. It is frustrating because for years now that Jack has a confirmed diagnosis of Mitochondrial disease many doctor just use that as a answer to why he is having whatever problem. It is also frustrating because many in Syracuse have little experience with his disease. Then we go to Cleveland and they say yes he has confirmed mitochondrial disease but we believe it is secondary to something else. We also think he has connective tissues disease as well. My feeling is call it all what you want. What do we do? How can we take his pain away. What do we need to watch for?
As far as school it has been an extremely frustrating year. I feel just because Jack appears fairly normal they down play things. Please pray for Jack and our trip next Wednesday.

Christmas 2011

2011-12-27T08:19:00.000-08:00

Jack had a great Christmas. He got many gifts. He loves Christmas. He was very happy and said Happy birthday Jesus many times.

He had pneumonia after thanksgiving but he is doing much better. We go to Cleveland in February for an appointment with a genetic counselor. We will see if we get anymore answers. The doctors have new names for things every day. The doctor said at Jack's last appointment that he has connective tissues disease. Connective tissue disease is separate from the confirmed mitochondrial disease. Connective tissues disease falls under many diseases.

Jack's pain and tetany have been a daily struggle. Jack seems to deal with the pain well for the most part. He still falls frequently and has tremors but it depends on the day on the frequency. Jack is such a inspiration to me. I love my son.

Going to Cleveland

2011-10-19T08:04:00.000-07:00

Well I had to call in to my fairly new job for the first time today. Jack had a really bad night. This happens a lot but he was up so long that he was exhausted . I could not get him to get up. He was crying and pleading with me to let him sleep and he was sick to his stomach. Who knows if working out of the home will ever work for me. I will give it a little more time.

Jack has had a rough week in school this week. He got called fat in lunch. He did not want to participate in gym. When I talked to him about it he told me that he looks funny when doing the exercises. He said he cant do them like the other kids. He also said his legs hurt sometimes. He is in adaptive PE but I allowed them to migrate that in with his class so he could be with his peers. I don't know if that was the best idea. I just don't know sometimes if I make the best calls for Jack. It is so hard making the right decisions when your child has a disease that fluctuates from day to day.

We go this Friday to the Cleveland Clinic for Jack's check up. We are well over due. Pleas pray for us to have a safe trip. Please also pray that we get more answers and insights into Jack's disease. Thank you for all of you who pray for Jack. There is power in prayer.

Check Up

2011-09-16T14:45:00.001-07:00

We just came back from Jack's check up with his orthopedic surgeon. Jack's left hip does not sit in the socket correctly so he has been monitored since he was three for that. She also deals with his gate and some of his walking issues. The appointment went pretty well. Jack has had some periods of sharp pain in the hip that makes him cry. This has happened several times in the last four months. He describes it as his hip pulling out. His x-ray looked the same. The x-ray showed the hip the same. It was not better but it was not worse. She knows Jack pretty well. She wants to send him for an open MRI of the hip. He has had MRI's before for other areas and they sedate him for it. We are going to try an open MRI and no sedation. Please pray Jack does well with it. She is also referring him out for possible injections in his muscle. He is also going to get some new shoe inserts to help with his walking. Over all the appointment was good.

Jack has more appointments coming up this month. He also goes to Cleveland to see his specialist in October. Please keep him in your prayers.

School is getting ready to start

2011-09-05T07:56:00.000-07:00

Jack has had a pretty good summer. We went to the fair and I was very proud of him. He wore his cooling vest with out any problem. He even asked to put it on. We also bought him a transportation chair. That is what they call wheel chairs these days. He was very excited. He did well with it at the fair. He is getting better in dealing with the vest and when he needs to use a wheel chair.

I have a new career outside the house so that has been hard. It is hard not being with Jack and Noah every minute. Tomorrow his father has to go in my place and meet with the school. We are trying to avoid any first day of school issues like we had last year. We have to make sure the air conditioner is in place, transportation all set up and many other little details. Please pray all goes well.

Hot

2011-07-21T05:14:00.000-07:00

Well this has been a hot week. Today is going to be even hotter. It makes it very hard for Jack. Over heating is a major concern with his disease. He has a cooling vest but in this type of heat staying in the AC is the best option for him. He said last night before bed, "can we pray about the hot weather mommy". He also said "make sure I don't get sick or die tomorrow". People might think that is a bit dramatic but that is the seriousness of Jack's disease. He is also having sun and skin sensitivities. He burns extremely easy. He is also experiencing scaring issues. We have talked to his specialist here and it is not uncommon with Jack's disease to have these issues. It is something we are going to talk about with the specialist in Cleveland when we go in August. The specialist here gave us some fancy names and things to look up.

Last night really made me think. Jack is 7 years old and is starting to have real concerns for his health and safety. That is because we have been really trying to teach him about everything. He has to learn how to take care of himself and recognize warning signs in his body. People look at Jack and he appears pretty normal. It is easy in a school setting or when we are not present for someone to over look something with Jack and him be in a life threatening situation. We have had no choice but to start teaching him the seriousness of his disease. It is hard because I do not want to scare him. We have had no choice but to explain the steps and worst case scenarios of what can happen if proper care is not taken in all different types of situations.

I hear people complain all the time. I even find myself complaining about things. Last night it made me realize how hard it is for Jack. He is 7 and has to think about what can happen if someone doesn't notice or help him prevent something. He has to think about the weather. He cant always play the things the other children do. I watch him get picked last for games because he is the slowest or falls. He is the one that none want on their team because he is slow. He has so many daily struggles. Walk one day in his shoes and it would make us all appreciate our lives a bit more.

Jack takes each day at a time and is a very happy person. He has a great sense of humor and is very kind. He is starting to really have to deal with daily frustrations. He is starting to have to deal with the reality of his disease and how it effects his life. He struggles with that at times. He has fear and questions. He has frustrations and moments of disappointment. Regardless, he gets up the next day with a smile on his face and he tries very hard to have a good day.

Jack is not feeling well

2011-07-05T16:48:00.001-07:00

Jack has not been feeling well. His stomach issues seem to be on the rise. He had a real bad night and not the best day. He over all has been having stomach issues more, but the last 24 hours have been worse. I am not sure if he has a little bug or if it is his disease. Regardless it can end up being serious for him. Please keep him in your prayers. I will keep his blog update. Thanks in advance for your prayers :)

Jack is done with 1st Grade :)

2011-06-22T09:52:00.000-07:00

Jack's last day of first grade is tomorrow. We had a very shaky start to the year. I will say his room teacher's ended up being excellent. They were very much on point with his overheating. He did miss a lot of school in the middle of the year due to illness or pain. I did in the beginning of the year and the end have to keep him home due to the heat. They put an AC unit in the classroom FINALLY, but it broke. Then after it was fixed it did not cool very well. That is something I will contact the CPSE chairperson about for next year.

It is so irritating dealing with schools and some doctors for Jack. I am sick of the answer being he has mitochondrial disease. It is like because there is no cure and no prognosis we just have to deal with things. Then because he looks normal people/school many times does not see how serious certain situations can potentially be.

We have an appointment with his specialist here in Syracuse tomorrow. We have an appointment in Cleveland in August. Please continue to keep Jack in your prayers. Pain management is his main issue at this time.

Jack's Birthday

2011-05-21T06:52:00.000-07:00

Jack's Birthday party is today. He is turning 7 on Tuesday. We want to thank everyone that prays for Jack. We also ask that you continue to pray for him. He battles with his disease every day. We believe there is power in prayer. We know the prayer's of everyone has helped get him through all the rough times :)

check out his main new blog
www.loveforjackmclean.blogspot.com

New Blog address

2011-04-05T06:27:00.000-07:00

We now have two blogs going....I will update on the new one and copy and past on this one....I had trouble getting in this one for months. I figured it out after I started the new one :) The new address is http:/loveforjackmclean.blogspot.com/

Update

2011-01-11T09:53:00.000-08:00

Jack had an appointment last week with a pain management doctor. The appointment went pretty good. We have started a pain medication at night. I have been very leery for years due to his age of putting him on pain medication. I will say it was a hard decision. He can have it three times a day and I agreed to only one time a day. I am giving it to Jack at bedtime with a couple other medication he takes. I thought this would be the best time since he wakes up with pain and tetany mainly in the middle of the night. He has been on it since Friday. It seems to be going OK. He has still complained of pain but has not woken up at night with any pain since friday. He has had one tetany episode at night. That is painful and wakes him up.
The new thing since giving the pain meds is the last three mornings he has complained of pain. He usually doesn't complain on pain in the morning. It is usually later afternoon, evening, or middle of the night. This is something new. I will keep monitoring him closely. We go back next Thursday to follow up with the pain medicine doctor. He is also getting a unit for home that he will hook up to when he has pain that will send electric currents to the muscle to help with the pain. This is all very new but I feel worth trying. There is no cure or prognosis for Jack. He will most likely have to deal with pain all his life. The specialist in Cleveland thought it be a good idea to get Jack started with a pain management doctor now. Keep praying for Jack. It is through the power of prayer that Jack is as strong as he is. We strongly believe that all the prayers for Jack help him.

Getting ready for Christmas

2010-12-17T08:36:00.001-08:00

Jack had a few doctor appointments recently. They all went fairly well. We saw the specialist here yesterday. It gets a bit frustrating. There is no cure or prognosis for Jack. That means that we watch all the major areas with issues in his body and do what we can. They do not really fully get what is going on with his weight. They are sending him to a pain center to start to manage his pain. The doctors feel since this is something he will have to deal with throughout his life that it would be a good thing to start it now.
We go to Cleveland in April. We are still waiting to hear something about aqua therapy. He is currently on a waiting list and has been. That is very frustrating as well.

Jack has had a cold. His asthma has been acting up. Thank God, he seems to be getting better. His leg pain has been on the rise. He has been dealing with it pretty well.

He is focused on Christmas at this time. He has had a lot of questions. He has been asking a lot about Santa and Jesus. He has also been asking a lot of questions about death and heaven. I think this is a common age for these questions. His brother was around the same age when he asked these same things. He is very excited and counting down the days till Christmas. He is such a joy to be around.

Update

2010-11-24T06:21:00.000-08:00

Jack is still having a hard time in school. He has been real sick with his disease. It makes the mornings real hard for him. He wakes up a lot at night so having to get up at a certain time in the morning is hard. His stomach issues have still been real bad and that has not helped in the morning either. Once he gets to school he seems to be doing better then he was. He is saying that he likes school most days now. This is a big change because for the first couple of months he was saying he hated school. He still has his days that he hates it but it is getting better.

He is having the hardest time he has ever had dealing with his disease. For the first time in his little life he is seeing how his disease effects his every day life. He is getting irritated. He has had two break downs. He has just cried and yelled saying "I don't want this stupid disease...I don't want it...I don't want it". It has been so hard to keep it together in those times. I tell him that he is strong and that God is using him to be a light to other people. I try to show him the good that can come out of all his pain.

He still is very happy and joking almost all the time. It is only regarding school, pain, medication, and some rough tired mornings that he has had some issues. Jack deals with changing issues every day. He does well dealing with his disease for the most part. He is just getting older and really starting to see for himself the limits on his body. He is seeing how being ill and in pain effect his every day life. He is only six years old and he fights this every day with a smile on his face 90% of the time. It is a life full of pain, illness, and obstacles. He does it with such a great spirit.

Please keep Jack in your prayers. He is still struggling with many issues. He is getting a cold. The cold is kicking up his asthma. He has a couple doctor appointments this month. We are still trying to get some answers regarding his weight gain. We just try and deal with one of his issues at a time. Some days there are so many things that arise it seems overwhelming. Jack keeps moving and smiling so how can I do any different.

Struggling

2010-10-18T12:40:00.000-07:00

Jack is really struggling at this time. His pain, stomach issues, asthma and frustration are really up at this time.

School this year has been really hard. The past two weeks he has cried every day before going to school. He says he hates school. He has the best teachers he has ever had. I have been in constant contact with them. I drive Jack and pick him up from school as he has asked. We have tried to get to the bottom of what has been bothering him. He is not being picked on. Well, he says he is not. When trying to get to the bottom of everything it seems that it is his frustration that is the main problem. He says even on a morning when I start out feeling okay I get really tired early at school. He is getting frustrated if he makes mistakes or messes up. He is noticing that certain tasks are difficult. He got frustrated because he cut the ear off a scarecrow he was cutting. It was no good. He wanted it thrown in the garbage. He saw the mistake as it not being good or like everyone else's. No matter how much we seem to talk to him about being different and that being OK and good, but he still is frustrated. He felt he was tired and was having a hard time so that is why he messed up on the scarecrow. He said to me that when he gets tired he makes mistakes. He said everyday I don't feel good and my stomach hurts. I smell things and have to throw up. He said then my arms and legs hurt. I have tried to explain to him that it is his disease that is causing it. I have tried to explain that being different is OK. I have explained that it is normal to get frustrated with not feeling well. I have told him that he is strong and I am proud of him.

It is still hard to send him off and know he does not want to go. It is so hard because I know his disease is acting up. He has trouble at night, waking up with pain. Even in the evenings or weekends he is having stomach issues. I am aware that those things are real. At the same time if I kept him home every time he did not feel well he would never go to school. It is so hard to send him off and wake him for school when he has been up at night. We take it day by day and that is all we can do. It is frustrating when he is going through a period where everyday is pretty bad. I hate when we go through periods of many issues at once.

He also is upset and noticing his weight. He has asked me several times how to get skinny. We are trying with his food and watching his sugar. It seems like no matter what the weight keeps coming. He is growing as well. He had his MRI. We are now waiting on the results. We are due to go back to Cleveland but I must reschedule the appointment. He sees his specialist here in December.

Keep Jack in your prayers. He is really starting to put together the realization of his issues and illness and how it effects him every day. It is seeming to be a lot on a 6yr old. Every smile on his face I see is a inspiration.

School days and Update

2010-09-13T06:59:00.000-07:00

Well Jack started school last week. He is in first grade. The school year got off to a really Rockie start for us. He was suppose to be in a class with an aid. The first day off school I get there to find there was no aid in his class due to cut backs. How is a teacher suppose to take care of 17 other children plus Jack. What does she do when he needs assistant with toileting? What does she do when his stomach issues act up and he vomits? There is a laundry lists of what ifs. It was the first day and her response about a communication book back and forth was very poor. Needless to say I called the chairperson and talked with the principle. Jack has a CONFIRMED diagnosis. He has a disease with no cure or prognosis. He is very vulnerable. He may have a great day but that doesn't mean a great night. He may have a bad morning and that doesn't mean a bad rest of day. It is a daily waver of how he is doing. What of his many muscular areas and pain may act up. One teacher can not monitor this and be on point. It seemed at first because Jack has no learning disabilities that the school was all about education over Jacks safety. They did however by the second day change him to a class with a aid and two teachers. As a parent I am very happy. This team of teachers is appearing at this time to be great. God worked fast and answered this nervous mothers prayers. I am so glad I did not have to call Jacks lawyers or the umdf. I am glad that at this time they seem to be working well with me.
Jack was happy about the change. He however has been having major anxiety about school. I have finally got to the bottom of some of his issues. The School made his bus tag wrong and he new it. That is why he did not want to ride the bus. He has been having major anxiety and his stomach has been bothering him aside from the disease.
Please keep Jack in your prayers. He is just having major issues with school. He is having a hard time and is very frustrated. He also has a lot of appointments coming up. He has a MRI under sedation coming up. That is a big deal with Jack. We appreciate all the prayers we can get.

Update

2010-06-14T10:55:00.000-07:00

Jack has been doing OK lately. He is ending his school year very soon. It was a good year over all for him. He did have a lot to adapt to this year. He also had a lot of frustrations to over come. In Jacks bounce back spirit and style he managed to do it.

We celebrated Jacks sixth birthday last month. He had a big party this year. We rented a bounce house. He got to have some friends and act like everyone else (for the most part) that day. It was great to see him be able to do that.

He tried t-ball this year. It has caused some painful nights but Jack over comes as always. He runs different then the other kids but other then that appears the same. We have lucked out and most of his games the weather has not been too hot. He has only had to wear his cooling vest two times. He hates wearing the vest. He also uses it in school. It comes in handy with the over heating but I do not blame him for hating it. I am looking into trying a different type. I do not know if it will be any better but we will see. This one constricts his movement and appears uncomfortable. It also wets through onto his shirt. I guess it is better then him not being able to try tball or worrying about him over heating in school. I just feel his frustration every time he has to put it on. It is hard to enforce things and battle with him when I would feel the same way. I just always have to remind him the other choice is not participating in an activity or ending up in the hospital. Tball the running is one base and you stop for the most part. If it was more then that he would need a runner at all times. Even the little he does during a game effects him that night (usually). He still wants to play (unless he has to wear the vest). He just wants to have fun and be like everyone else.

With summer coming he has a lot of doctor appointments coming up. The next few months will be full of appointments and tests. We have an appointment with his specialist here coming up. We will be going over the last Cleveland trip. We got the blood test results and some medications were increased. Of course I have a lot of questions. Also all the tests and new things the Dr from Cleveland wants in place have to be ordered by his specialist here. It will be test and appointment city coming up for Jack.

He loves to swim. Memorial day weekend he had the opportunity to swim. We could not get him out of the water. The doctor in Cleveland wants him in a water program. I will talk with the specialist here about getting a script for one. Jack by far seems to do best with water activities. He loves going to grandmas pool. He loves taking a bath. He just loves the water. I am so pleased that he has something fun that is good for him that he seems to handle rather well.

Please keep Jack in your prayers with all his upcoming appointments and tests . His stomach issues seem to be on the rise as well again. We would appreciate prayer for that and his chronic pain as well. We believe in the power of prayer. We have really seen God have his hands upon Jack. We know God has a purpose and plan for Jack in the midst of this disease. He inspires me on a daily bases. I am so very blessed to be his mother.

Cleveland Update

2010-04-27T09:28:00.000-07:00

Jack had an appointment last week in Cleveland. We made a mini vacation of it since it was spring break from school for the boys. It was nice to do that with them. It is hard for Jack, and something he doesn't look forward to when we drive down for the appointment and come back all in the same day.
The appointment itself went ok. His specialist there is concerned about the tremendous (the word he used in his report) weight and height gain Jack has had.
He agrees with the specialist Jack see's in Syracuse that something seems to
not make much sense. Jack is the height of a almost 8 year old and the weight of a 10 year old. He is going to just be turning six at the end of May. Makes even less sense with a child with mito disease. He was failure to strive and low height and weight until age 4. That is more common and typical of a child with mito disease. So the doctor in Cleveland is ordering a MRI with contrast. He wants to check Jacks pituitary in the brain. He said this weight/height thing is probably either a hormonal condition or a dietary calorie issue. That is less likely since we watch Jacks sugar, log his food each day, and keep track of calories.
He also is referring us to Pain management specialist. He thought due to Jack increase in pain this would be good. He will likely through out his whole life have to deal with pain issues. He said going to a pain management specialist now and getting that in place may be good. He also would like to see him do pool therapy. Not due to exercise but due to his extreme low tone. It will build muscle and endurance. Jack will likely always have issues there and regular exercise and training causes pain and overheating. He thinks water things would be the best route. Now to find a
program for Jack. He doesn't want him in swim lessons. He wants him in a swim program. I have no clue if there is something like that around here.
The Dr also sent his muscle out for more testing. They have discovered new tests since our last appointment. They froze Jacks muscle years ago when he had his first muscle biopsy. They keep it and test it as new tests become available. Jack also had a lot of blood work done that day. He checked all the regular stuff they check with Jack and added some new blood tests as well.
They also added some more medications to the daily ones he currently takes. Hoping this will help with the tetany and muscle cramping and pain that Jack deals with. Jacks been experience high bouts of tetany and pain. The worse we have ever dealt with in frequency.

We see the specialist here in June. We have to get the medication, MRI, and pool thing rolling between now and then.

As far as the trip Jack had a nice time. It is so nice to see him enjoy himself. He has struggled greatly the last 6 months with pain. He has dealt with a lot at school. Being picked on and noticing he is different has been hard for him.
It was nice to see him just relax and unwind. He is such a inspiration to me. I am so proud to be his mother.

Frustration

2010-01-20T08:12:00.000-08:00

I am very frustrated today. I know I can not protect Jack from everything. I know kids will be kids. I still sometimes just want to scream. We live in a world were it seems each generation gets worse then the last. Jack is only in kindergarten. He says to me today "mommy can you help me get skinny"?.....long story short... a girl in his class is calling him fat. Jack is on the heavy side but is not fat. He is currently going through testing to see about this weight and height increase.
Then a kid on the bus calls him snail because he walks slow and funny. I know all kids (even kids with out problems like Jack) get picked on. I think it is so frustrating for me because Jack has enough to deal with on a daily bases as it is. I told him to just tell the kids that they are not being nice. Tell them I am how I am because I have a disease that makes certain things harder for me. I guess I was more frustrated because I am having this conversation and he is in kindergarten. I guess I was expecting more of this stuff in like third or forth grade. Do parents today teach there children anything? Do we take responsibility anymore for our children's actions. Do we realize letting them watch, and hear certain things at the wrong age is wrong. Fine, do not shelter your children, but please age appropriate material. I can fail at this in ways at times myself. I am not pointing fingers but some parents do not care. They produce rude little off spring and just do not act as if they care. I guess as a christian all you can do is lead by example. I know as a christian I fail many times. Give it to God and pray . Pray for all the children. The rude, bossy, inconsiderate and love them all.

What are are schools today doing? What are they doing about all the children being bullied or harassed. You have to dress a certain way. You have to act a certain way. If you do not then you are an out cast. Then children do not want to go to school. Furthermore, AGAIN what are parents doing at home?

Jack has to be different every day of his life. It is a struggle just to get out of bed with out pain. To eat his breakfast with out being sick and vomiting. He has to start his day off with 13 medications. Trying to chew the pills down that are not liquid because he cant swallow pills. He has to try to dress himself. Depending on the day he may or may not be able. Then he has to rush at everyone else speed. He has to get woken up out of bed to go to school on time. He has to get up and start the rat race no matter if he has had 2 hours of sleep or 9. He has to watch his brother and best friend get on a bus to go to the same school, yet he cant ride on it. He gets driven to school. He then walks in a special entrance to try to preserve his energy for the day. He has to sit in a special chair instead of on the floor when the other kids are sitting on the floor. He has to be pulled out of the class through out the day to go to therapy. He has to ride around in a stroller type chair so he can make it physically through the day. He has to eat at a special table at lunch. He has to eat with kids with issues instead of his class because of his choking issues. He has to go to the nurse to get his asthma treatments. He has to carry around a water bottle so he doesn't over heat. He has to come home after the other kids are home. He has to arrive on the "little" bus. He then has to take a nap or have quite activity and not play because he is exhausted from his day. He has to quickly have another round of medication. Then before bed he will chew up some more nasty pills so he can hopefully get a good nights rest. That is what a typical day for Jack is like. I left out a lot. I left out the pain. I left out the tetany . I left out the being singled out. I left out the frustration. I left out the hurt. I left out the throwing up. I left out the many doctor appointments and tests. I left out his feelings. His feelings that get effected every day. Most importantly I left out that this kid barely ever complains. I left out that this kid is smiling 90% of the time. I left out how often this kid gives and shows love. I left out a lot.

I am so proud of my son. He is only 5 and deals better with all these issues and more then most 30 year old would. God is using my son. He uses him every day to touch or effect someone. He empowers me. He gives me strength. He makes me realize that I should not complain. We as adults are such whiny babies sometimes. Walk a day in this boy shoes and you will be thankful.

I love my son's. They are a gift from above. I am so blessed to have them :)

Doctor update

2009-12-21T11:43:00.001-08:00

Jack went to see his specialist here last Thursday. It like many appointments was frustrating for me. Jack has his issues that are continually a struggle. Then there are areas that do not make sense or that pop up.
Jack has gained a lot of weight in the last year. What is even odder is that most children with his disease are under weight and grow slowly. That was Jack up till the last year. He was considered failure to strive because he was so under weight and his growth was so slow. In the last year he has gained 40 lbs. What is odd is due to the sugar issues we are on top of his diet. What is alarming to the doctor is if we as parents were over feeding him his growth would still be at a standard or slow rate. His growth has shot up along with he weight. He is in the 90% for his height and 80% for his weight. It is a huge jump in the last year. An abnormal shot up for any child. Even more weird for a child with his CONFIRMED disease. So we are looking down a normal road of the unknown for us. A lot of testing, x-rays, blood work in Jacks future. A lot of Daley logging and monitoring for me. Jack has primary mitochondrial disease complex 2 &3. It is a rare combination of a rare disease. Mitochondrial disease is more commonly secondary to another condition. Jack is primary because that is all they are AWARE that he has. If he is really secondary mito disease they have not found what is primary. If they ever find out anything else he might have it would be a rare primary condition. All the more common things have been ruled out. They are making leaps and bounds with mitochondrial disease. I have to believe in the Doctors and have faith in God. It will not change the fact that there is no cure or prognosis. That may well never change because it is genetic. However the more they learn a lot of the what ifs and whys maybe answered.

It is very frustrating for me. I cant fix this problem. I cant even give people or more importantly Jack many answers. All I can do is trust in God. Jack faces many struggles daily. His disease effects his whole family. It is not like taking care of a normal child. There is so much more to it. It gets to be a lot. It is hard to watch him be in pain or struggle with all different issues. It is hard watching things go on with him that make no sense at all. It is frustrating and stressful knowing more appointments, medication, money costs, and most importantly pain is in your child's future. Thank God for how he keeps us all going. Thank God for the strong spirit he blessed Jack with. Jack is a light to all that have the pleasure of knowing him. I am blessed to be Jack's mother. I am honored that God in trusted me with Jack and Noah.

Update

2009-12-14T10:40:00.000-08:00

Jack is getting another cold. That is typical for him this time of year. October was a bad month for Jack. He had bronchitis and the flu. Thank God we never ended up in the hospital. We have started his asthma treatments every four hours. We have his breathing medication and an antibiotic refill on hand. We try like with everything with Jack to stay ahead of the game. That is not always easy to do.

Jack has been dealing with his stomach issues a lot lately. He is sensitive to smells again. He seems to be back to the daily dry heaving and throwing up. He has an appointment this week with his specialist here. I need to talk more about Jacks weight and sugar. Jack appears very bloated to me. He is not eating much and I am on top of his diet. He still seems to be gaining or bloating. I know his sugars still runs high at times. It is frustrating because with a lot of Jacks issues we just need to watch and see. We have to try to prevent things from happening and control what we can. It is when we cant control something, that we deal with the hospital or consequences. I guess that is the fear I have to deal with each day. I have to fight that fear as a parent and give it to God.

Jack's spirit as always is great. School is kicking his little butt. Academically he is doing well. He has had to deal with social issues and being different. He never wants to say when he is in pain. He has been dealing with it on a more regular bases lately. His arms have really been a new area of added pain.

Please keep Jack in your prayers this winter. All the prayers is what keep Jack and the family going.

Please Pray

2009-10-25T17:21:00.001-07:00

Please say a little prayer for Jack. He has the flu. He had bronchitis two weeks ago. He had just stopped the medication for that and now this. He came home from school Friday morning with a fever. We took him to the doctors that night. He tested positive for the flu and he has a double ear infection. He is so use to feeling yucky that he does not act too bad. His appetite is poor at this time. The fever is coming down but still there. His asthma is kicking up of course. He is complaining of his stomach and leg pain. When Jack gets ill his disease and muscle issues seem to kick up as well. We are just trying to keep him hydrated. We are praying that he keeps doing as well as he is. We pray he doesn't turn the other direction. Things happen very quickly to Jack with his disease. We of course have to worry about dehydration. So far he seems to be hanging tough. We are asking everyone to say a little prayer for Jack. The flu is hard for anyone. Jack having his disease just makes things worse. We really have to keep a close eye on everything when he is ill. We are thanking God he is doing as well as he is. This seems to be a milder form of the flu.

Mark 11: 22 & 23

"Have faith in God " Jesus answered. " I tell you the truth, if anyone says to this mountain, Go, throw yourself into the sea, and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours".

School days and Update

2009-10-15T10:07:00.001-07:00

I have to say I have become very bad at updating Jack's blog. I guess in some ways I just do not want to deal with his disease sometimes. I guess I do not want to deal with a lot of things the past three years.

Anyways, Jack started kindergarten last month. It has gone okay. It has been hard on him. The long days are hard. He is very tired and has more tremors in the afternoon and evenings. He needs a nap much of the time when he gets home in the afternoon. It has been hard to see him be treated differently. Some of the safety measures in place for him I agree with . I will say it is still hard to see him have to deal with them. Then there are somethings being done I do not like. People need to remember Jack is totally normal cognitively and developmentally. I feel at times his dignity and feelings are not being taken into consideration and that bothers me. Stop and think if you were totally normal in the brain but your body did not cooperate. That would be frustrating enough to deal with. Then try to have people singling you out and treating you different. How frustrating, humiliating, and degrading at times that must be. Jack's safety is a big concern. We have to put safety measures in place for the what if times. Jack can crash so fast. We try to conserve his energy and keep him safe. It is so hard to know that all decisions being made are the very best ones for Jack in all ways.

Jack has also been very ill. He has bronchitis at this time. His asthma has really flared up. He went from being well to having bronchitis in two days. The Doctor said if I would have waited one more day he would have been in the hospital with pneumonia. Thank God we did not wait. Jack seems to be getting better. It is slow but the medications and breathing treatments seem to be helping. Winter is soon approaching. Full day school and germs, germs, and more germs. Please pray Jack stays well and avoids any life threatening illnesses. A winter with out a hospital stay would be great. :)

Jack has quite a few appointments coming up. The one major one is Cleveland and seeing his specialist. That happens in a little over a week. Please pray this appointment and trip go well. I am going to take him and come back all in one day. I need to talk with the doctor about Jack's pain. I also want to talk with his doctor about Jack's sugar issues. There was one medication he suggested trying that we have not gone forward with. Jack is on 13 medications, this includes his supplements each day. I worry about him adding another medication. Jack issues are all still the same. Some of them are heightened at this time. I think the combination of fatigue from school and the time of year have a lot to do with it.

Jack himself is in good spirits. I think sometimes we ( the people closest to him) get more upset about things that are going on then he does. He likes school. He has his days that he does not want to go. I think it has to do with how he is feeling that day. There have been some frustrations for him. His feelings and dignity are not being considered enough in my opinion. This is something I will address at parent conferences next month. He started cub scouts and is very excited about that. This is the first activity that he has been able to take part in. Jack is always joking around and 90% of the time has a smile on his face. To think of life in his little body, how can any of us complain. He gets around and faces each day with excitement and happiness. He has pain, discouragement, frustration, interruption, and many other things to deal with. He just keeps going, laughing, smiling, hugging, and loving. How many of us as adults can say that ? I pray that Jack never loses that way about him.

Update

2009-08-24T17:29:00.000-07:00

Jack has been having a very rough summer. He has had a lot of over heating issues. He was hit or mis for summer program due to the heat and pain. He has been very unstable and waking at night often with tetany episodes.

He starts kindergarten soon. I am very unsure about it. It is full day and I don't think he will be able to handle a whole day. Jack being Jack, he will make it. He will then come home and be a wreak. Then end up napping at 3 or 4 and having a terrible night. I know my son. At his meeting for kindergarten, they wanted to try the full day so I agreed. You got to love it when people think they know what your child can handle better then you. Is it that or that they don't want to modify there teaching schedules. Regardless, we will try and see. I have so many concerns. The chairwomen for the cpse is retiring. Please pray the new one is as good as she was. She always made sure that Jacks preschool rooms had ac units. His kindergarten room is suppose to as well. I have a insider who has told me as of today his classroom still has no ac unit. Over heating for Jack can mean the ER and can be very dangerous. I hope this matter is taken care of. I will have to be the advocate for my son as I always am. He may look okay one minute but in seconds he can go from good to the ER.
I am also concerned about the change and the noticing of being different that he will have to go through this year. There is just no way around it due to his heath and safety.

Please keep Jacks start of kindergarten in your prayers. There are so many things to be concerned about. I have to pray and put Jack in Gods hands. Pray that God puts caring understanding people in his path. It is hard enough to send your child off to school. It is a whole other ball game to send your ill child with a rare condition off to school. It is hard when many do not understand or know of his disease. It is hard when Jack can appear fairly normal one minute and crash in the next. I just have to remember that even when I am not by Jack's side God is.

2009-07-08T05:57:00.000-07:00

Sorry it has been so long since I updated the blog. Life has just been getting away from me. Truthfully, I just have not wanted to think about Jack's problems. I am so use to dealing with it all that I try to act like everything is fine.

Jack is just getting over pink eye and a ear infection. His asthma has really kicked up . He has been waking at night with dry heaving and coughing. He seems to be a little better. School starts or should I say summer program starts for him today. I am not starting him till tomorrow. He did not sleep well last night and I just did not want to wake him. He has been extremely fatigued lately. I guess from getting over this cold or virus.

We go back to Cleveland at the end of August. Jack has a sleep study at the end of this month. We will see were that takes us. He saw his specialist here recently. He said that we will continue to monitor Jacks sugar. In the morning is the main time. He thinks his sugar being high is definitely disease related. It is high at times but not high enough that we will do anything at this time. We will just keep a eye on it. His weight has stayed the same. He praised me for that and said to keep doing what I am doing. Jack is tall and has grown. He will slim out if I can keep his diet and eating under control. It is hard at times. He is just so hungry. He doesn't get why he is or why I wont let him eat something.

He has been swimming in the heated pool. He goes off the steps and jumps in with floaties on. It is good for him because it is exercise that he can really do. The only down side is every time it really fatigues him. Every time he has had a hard time walking or not been able to walk later. He is still experiencing a lot of leg and recently more arm pain.

Please keep Jack in your prayers. His spirit is always high. I will say his pain is elevated along with his frustration. It is hard to deal with for him sometimes. He is just starting to get some of what is really going on with his body.

2009-05-14T10:37:00.000-07:00

It has been a long time since I have posted a blog. Jack has been in a downturn. He is just starting to seem to be coming out of it in some ways.
We went to Cleveland and they are wanting us to try a daily pain medication. He has not started it yet. We were waiting for some tests to be done first. He is still experiencing the tetany episodes. He complains more frequently of leg pain and recently saying his arms hurt. His sleep is still off. He wakes at night quite a bit. He is going next week for a sleep study. His stomach issues seem to be calming down a bit. We saw a stomach specialist in Cleveland . He deals with a lot of mitochondrial disease patients. He said that Jack is experiencing a lot of stomach issues due to the disease. We are trying some over the counter things for it along with his prescriptions. His sugar levels are still high at certain times. We are monitoring that at this time. He has some fasting labs he needs to do. The blood he had taken and testing from Cleveland came back last week. The tests were abnormal and his vitamin D levels were still low. He takes 1200 IU of vitamin D a day as it is. We are seeing the specialist here soon and will see what he suggests.

School is coming to a end soon. Jack will be in summer program so he can get his PT, OT and Speech services through the summer. I am waiting to see when his cpse meeting is in regards to kindergarten. I have many concerns that need to be addressed. Please keep this meeting in your prayers.

As far as Jacks spirit, it is strong. He always has a good attitude about his disease. He is currently using some new bracing in his shoes. They seem to be helping with the way he walks. He is doing okay with them. His behavior has been a bit off. I am not sure if it is the age or what. We will just keep it in our prayers.

There have been a lot of positive changes in the last few months for me and the boys. We thank God for them all. We will Trust in the Lord and go one day at a time.

Update

2009-02-19T00:17:00.000-08:00

Jack is still in a downturn at this time. His respiratory issues are on the rise. He went to see his respiratory specialist. They changed some of his medications. He has had his yearly eye check recently. They said all the issues with his eyes that we are seeing are at this time disease related.

His sugar levels have been all over the board. His doctor here wants to see the log that we keep. He said due to Jacks disease he will not process sugar correctly. He said he would not treat him for diabetic symptoms unless he was having periods of levels in the 200 range. He said there is a diabetic condition with Jacks disease. He said it is rare and usually found in older children with mitochondrial disease. We will continue to monitor Jacks levels at this time. He is obviously showing signs of higher levels and could with age get this rare condition.

We are still waiting on the braces for Jack. They are making new ones since the other ones he couldn't even walk in. I know Jack could careless when they come in.

We are going to Cleveland soon to see Jacks specialist. Jacks specialist here is glad we are going. He wants us to discuss the downturn and high sugar levels with the specialist. It is a good time for him to be seen in Cleveland. He is also being seen by a pediatric gastric specialist, who deals with mitochondrial disease in Cleveland. We will have to stay over in Cleveland for this trip. I have a lot of medical records to put together for the doctors there. Hopefully they can shed some light on the sugar levels and gastric issues. I also would like to talk with them about this downturn. He is having more periods of not walking at all. The tetany episodes are up as well. He is complains of leg pain more then he ever has. He is taking several baths a day. He says the water helps with the leg pain.

Please keep jack in your prayers. He is having a rough time. Despite how he feels, he presses on. He is such a inspiration to all that have the pleasure of knowing him.

Struggling

2009-01-11T06:41:00.000-08:00

Jack is still struggling a lot at this time. Everything is heightened at this time for him. Some people don't really get what that means. Basically Jack has struggles everyday. He has some kind of issue or obstacle he has to over come. At this time he is having a multitude at once and every issue is heightened. This happens with his disease. The specialist in Cleveland tells me this is called a downturn. This is not Jacks first. His last downturn lasted about six months.

Jack is having heightened leg pain, tetany, fatigue, falling, choking, speech variations,eye issue, heightened tremors, a period of not walking at all, high glucose levels, and some other daily issues at this time. Please keep him in your prayers. He manages well but it can be very frustrating for him. His body will be cooperating in an area and then the next day it will not. I can only explain it as being able to tie your shoe today and your hands being so shaky and weak you can't tomorrow. That is an example as a adult that I could think of. Jack obviously cant tie his shoes. For Jack it is more like being able to brush his teeth himself today and cant hold the toothbrush tomorrow. In a day it is a bunch of things he could do yesterday but maybe cant today. Try to understand that at four. It can be very frustrating for him. He does well for the most part.

I think sometimes as his parent it is harder for me then him. I mean as far as feeling bad for him. I try not to let myself think like that. He doesn't that much, so why should I. That is what I tell myself anyway. It just breaks my heart sometimes to have to watch him struggle.

He had an orthatist appointment the other day. He was suppose to be getting new braces for his legs. He hates braces. His PT at school was recommending trying them again. Long term with out them he could have issues down the road. He has major inversion in the ankles, as well as some other issues. Since he was two his PT then was concerned. So Jack has worn braces here and there. All his different physical therapists have mentioned bracing to try to prevent if possible, long term problems with the ankles, knees, and back. His first PT was right about the hip. His left hip still doesn't sit correctly in the socket and that is monitored every six months. He hasn't had much luck with the braces in the past. It has ranged from them being made incorrectly to him just not tolerating them. We will see this time. We didn't end up bringing them home. After a very long fitting they decided what they had made wasn't working for him. He was so shaky and his body tremored so bad when he had them on that he was falling badly. They are making corrections and we have to go back.

It was so sad for me at this appointment. Jack in the last few months is starting to be more frustrated with things. He is starting to understand more that he is different then the other children. We are trying to talk to him more about what his body can and cant do. We are trying to get him to understand and learn how to listen to his body. I have used the disease word for the first time with him. I don't think he totally gets much being he is only four. I definitely know he is grasping some of it. At the appointment when the man was putting the braces on his legs he was a great. He is always very good for doctors and in situations like that. He is very use to it. He has been being poked and prodded at since birth it seems. The second time after making some adjustments the man came back and put the braces back on. This time Jack asked about if he had to wear these braces home. His PT mainly and I a little told him yes. We tried to explain how they were going to help him and how he needed them. Jack didn't really say anything. He began to have tears in his eyes. As a big boy now he turned his head and began to rub his eyes. Trying to make it not as noticeable that he was starting to cry. As I saw one tear roll down his face my heart began to break. As it has so many times for him. This was so hard for me. I was holding back my tears. Many times I have felt bad and have held back my tears. I have wanted to cry so many times due to pain he is having to go through or just feeling bad for his situation. This was the hardest because it was the first time I saw Jack break in such a way. He is starting to get it all. In his own four year old way. He was being the typical man and trying to hide his tears. You could tell the thought of those braces and having to wear them hurt his heart. Why I wondered? Was it the fact that he remembered they could be uncomfortable? Was it that he new yet again he had to wear them at school and he would be different? Was it the fact that he had to wear them and be different in general? Whatever he was thinking it was so hard to see him so sad. He was so sad to the point of silence and tears running down his face. He quickly started playing with the toys in the room and got over it. That is my Jack. Feel the pain or the sadness for a moment and be done. I pray he can always be like that.

At first when he saw the braces he was actually a bit excited. He had picked Red straps with flames. Red is his favorite color and flames are for motorcycles , so that was cool. Yet later in the appointment when he realized and new he had to wear the braces; and we explained things and he processed it, the silence and tears came. It was so heart wrenching as his parent.

I am the one who gets angry and says why. I want to take it all away. I want it to be me instead of him that has to go through all this. I wounder about school and the kids picking on him. It starts so young these days. Kids are cruel and no matter how smart Jack is, he is different. Sometimes I think that is going to be even harder for him. He is totally normal cognitively. He is a smart little boy. He notices he is different. That's when the frustration comes out. He is starting to notice he could do this yesterday or hours ago but cant now. Why I want to scream sometimes. People look at him and see him and say he looks fine. Live with him I want to say. See him in the evening or in the middle of the night. Be with him for six months during a downturn. Be there when your child cant walk at all. Be there when he is chocking and then stops eating for fear it will happen again. Experience the pain in your child's eyes and there is nothing you can do. Try to explain to a frustrated child why you have to keep disrupting his play to stick him with a needle to check his sugar levels. Explain to him why you have to disrupt his day to take one or more of his 12 medications again in the day. Explain to him why he cant keep playing or do what the other kids can. Explain to him why he cant hold the crayon or why his whole body is tremoring. Experience feeling like you are the bad guy who has to disrupt his play. Tell him he cant do what the other kids are doing. Then get to be the mom who tells the other kids can we not do that right now when Jack is here. He cant do that. Try to explain to his older brother and close friends about Jack and his issues. Sometimes I just hate it. Sometimes I want to scream. I want to say why. I want to get angry. I want to say to all the people that talk crap, walk a day in mine or my sons shoes. I feel that way especially lately. Then I have to stop and realize some things. God didn't do this to Jack but he allowed it. Jack is going to be used by him. Jack is my inspiration. Jack touches so many souls. How can I feel sorry for Jack when Jack doesn't allow it for more then a minute or two. How can I get angry or frustrated when Jack doesn't allow himself to be that way for long.

I have to change my attitude and look at the whole picture. I have to realize God is in control of Jacks life. He is the author and finisher of all of are stories. Jack has taught me so much and does every day. I thank God for my son. Yes, I would love to take the disease away. I would love to have there be a cure. The fact is that there is not a cure or prognosis. I don't know how long Jack will live, when and if his internal organs will be effected, what else will happen, how many surgeries, test, ect.. that my son will have to go through. I know one thing though, my son is strong and God new that. God new he could allow this in Jack. Jack will be a living testimony of him. If Jack can be like this at four, imagine what he could do as an adult.

I realize that is true for all of us. Whatever are trials are. Whatever cross we bare. God is allowing it for a reason. Jack doesn't allow his disease to get the best of him. I see so many adults (including myself) at times, let are trials get the best of us. We shouldn't do that. The trial whatever it is then wins. Jack rules his mito disease, it doesn't rule him. I just worry that as an adult he will change. I pray and trust in God he will not. I see so many adults let there condition, disease, trial, ect..rule them. It might be by anger, self pity, unforgiveness, ect. There are not many of us that over come as adults.

I am learning to try to look at each day and not project. A great friend taught me that. I look at today and what Jack can do today and we will take tomorrow as it comes.

Bad Night

2008-12-23T10:19:00.000-08:00

Jack had a very bad night. He had the worst tetany episode that he has ever had. Usually when he has a episode it last any were from 20 minutes to an hour in a half. I try not to give him the medication for it unless I absolutely have to due to side effects. I usually rub his legs and try to help him get through it.

Well, last night he woke up at 1am. Last nights episode was bad and he was in a great amount of pain. He was crying and tossing and turning. I tried rubbing his legs, but it didn't provide him much comfort. After about 45 minutes he asked me to get him medication. I got him his medication for when he has one of these episodes. It continued for about another 30 minutes and he fell asleep. I thought it was over and I was wrong. 20 minutes later he woke up crying in pain. He was tossing and turning. He said I just want to sleep but my legs will not let me. I rubbed his legs and tried to get him through it. After about 45 minutes he fell asleep again. Thinking this was it I started to fall asleep. Then after about 15 minutes he woke up in pain again. This time he was even more upset. He said he felt like he was going to get sick. I had to carry him into the bathroom since he couldn't walk at this point. He got sick and preceded to have full body tremors. Then I got him back in bed and he had the tremors and I rubbed his legs. This lasted about another 45 minutes. His father works nights and I called him to let him know about the bad episode. He talked to Jack to try to calm him down. Jack finally fell to sleep. When he woke up later this morning he said his legs didn't hurt. He was very shaky. He has been all day. His balance has been off. He is pail and has dark circles under his eyes. This episode was a long hard one for us both.

It is one thing to have a sick child. It is another to have a child in pain and there is nothing you can do. Usually the medication helps. This time it didn't that much. I couldn't give him anymore medication after the first dose. The feeling of not being able to take his pain away was horrible. I have been there before but this was bad. He is such a trooper when he is in pain. I just new based on how he normally reacts that this was very bad. He is nice and sweet even when in pain. I hope he can carry that with him through his life.

Every time we go through things with Jack it makes me think and learn a lot. It makes me learn a lot about life in general and my son. Jack got up this morning and it was a new day. He wasn't being upset about last night.He wasnt angry because he lost a lot of sleep. He doesn't ask why me? It made me think that as adults sometimes we are ridicules. We cant forgive. We stay angry and bitter. We hurt others. We turn are back on each other. We cant look at ourselves and blame others. We let things fester. We don't always trust in the lord like we should. We don't trust each other. Most people I know, once hurt we cant forgive, understand, or start over.

Jack made me think. He woke up today and yesterday was behind him. No anger, bitterness, sadness, nothing! He was tremoring and weak but his spirit was strong. He loves me regardless of the fact I cant take his pain away. He trusts me even though I fail him. He forgives me even though I cant fix everything. He believes in me when know one else does.

If you are ever blessed enough to spend a good amount of time with Jack you will get to know his spirit. There are some people that Jack just loves and has bonded with. Last night he asked about these people. Why I wondered to myself. Thinking about them brought comfort and strength.Most of these people probably don't even know how much they mean to Jack. When in pain he found comfort in thinking of them.

Jack is definitely in a down turn. There is no cure and no prognosis for this disease. Every day is a struggle for Jack. When I really stop and think of how this child deals with his life it makes me see how ridicules a lot of us adults can be. Life is so short. Forgive, let anger and bitterness go. Change unhealthy relationships. Don't just throw them away. In time you can make them healthy and different. Anything is worth fixing. Jack has shown me that is so many ways. Everything we do in some way or another effects are children. We don't even realize that most of the time. Hold tight and fight for those you care about. When life seems so bad think of all your blessings. Most of all fight for what you believe in or you will fall for anything.

My son is my inspiration. I have changed a lot in the past year. I have changed dramatically in this last month. My children are my main priority. W e all say that as parents but do so many things that don't always impact them in the best ways. Love your children. Listen to what they have to say. Learn from them, pray for them, and hold them tight.

I pray with age Jack can keep this same attitude and fighting spirit that he has. It seems to me that as adults we loose some very important parts of us at times. We let hurts and life's trials get us down. We need to have the victory in Christ Jesus!

Please keep Jack in your prayers. He is my little trooper. He is an inspiration.

2008-12-04T07:01:00.000-08:00

Jack is not doing that well at this time. He had a 24 hour stomach bug. This can be very dangerous for Jack. We are suppose to take him right to the hospital for hydration when this occurs. I waited longer then I should have but didn't want to put Jack through that unless totally necessary. Thank God Jack did OK. He is a little week and pail but doing much better.

We went to see Jacks specialist here a few weeks ago. Jack is having some of his issues heighten at this time. Due to his unusual weight gain and constant appetite and craving for water, they are having us test his sugar. They don't think he diabetic necessarily but that his sugar could be off due to his disease. We have been testing him for a few weeks now. He is having high levels here and there. We are to monitor him till his next appointment and they will go from there. Jack is doing well with the multiple daily finger pricks. They messed with his medications and is now on 4 liquids a day, 5 pills, and 2 inhalers and his nebulizer if needed. Jack as always is a trooper and does well taking his medication. He does get sick of it when it interrupts things he is doing. He has to take some of these medications three times a day. Jack has been complaining of leg pain a lot lately and his tremors and fatigue are up.

Jack is very excited about Christmas. He loves snow and gets very happy when he sees it on the ground. He cant wait till there is enough to go play in. He is also very excited to show people his new book. He doesn't get it but got to see one of the love for Jack cookbooks. The cookbook came out very nice . We appreciate Michelle so much for heading this up and putting it together. We are very thankful to those of you who are purchasing them and or trying to sell them. They can be ordered from Jacks website, www.loveforjackmclean.com . You can also contact Michelle peters. You can find her contact information on the website as well.

Thanks to everyone who has been praying for Jack and are family. This has been a very hard year for us. We pray 2009 will be better. We just have to trust in God and keep moving forward.

Update

2008-10-28T20:25:00.000-07:00

Jack is doing OK at this time. He seems to be adjusting well to his new school. I am very happy with the team of teachers and therapists.

Jack's Stomach issues seem to be heightening this past week. He has been waking frequently at night. He is getting a cold and it is just starting to go into his chest. He has been complaining more frequently of leg pain at this time. He has had one tetany episode in the last two weeks and one period of not walking at all. It seems to me like he might be heading into a down turn. We hope he is not but that is what it looks like. The fall to winter is seeming to be a harder time for him.

Jack has several doctors appointments coming up in the next few months. He is also being fitted for new braces for added ankle support. He has hated to wear these in the past but we will see. Long term with out them he could have added issues. His ankles buckle in and causes knee issues and the list goes on. He has been wetting the bed a few times a week which is something he hasn't done in over a year. I am thinking this has to do with muscle weakness as things seem to be getting worse at this time for him.

We are moving this up coming weekend. Jack seems to be ok with it, but I know it will be hard. Jack has had a lot of changes since early May that are out of his control. Please keep Jack in your prayers. Jack has a lot of physical issues to deal with on a every day basis and this added stress is not good. Jack seems to be handling everything well. Jacks older brother helps him greatly. Please keep both of the boys in your prayers with this transition.

I also want to thank Michelle for putting together the love for Jack cook book. This is to help with Jack's medical expenses. This is greatly appreciated. Michelle is a wonderful person with a great heart.

I want to say thank you to Kimarie who is in the process of updating and changing Jacks website. It is people who love Jack and do things such as these that makes the days easier.

Jack and are whole family are so very lucky to have such wonderful friends and family. Thanks to everyone who is supporting us in this time of change.

Update

2008-09-24T18:14:00.000-07:00

It has been a while since I have updated Jacks blog. It has been a busy time for us all around here.

Jack has had to change schools for the fall. He is adjusting well and I am pleased with the program he is in. They seem to be very on point.

Jack has been having a very hard time the past few weeks. He has had a period of not walking at all two nights ago. He has also been complaining of leg pain the past few weeks. He is very weak and the teachers have noticed the difference. He has been unable to do some things he could normally do. He has been falling frequently and more clumsy. His over heating issues seem to be a bit better at this time. They are still a issue as always. His stomach issues seem better at this time but are still present.

Please keep Jack in your prayers as always. He has a lot of changing going on in his life. He has had some behaviors. He also has been getting frustrated since he has not been feeling well. He knows when this is happening and doesn't want to slow down. I am sure as always we will manage through.

Update

2008-07-08T06:40:00.000-07:00

Jack is having a real hard time lately. He has been in the Er once and prompt care two times in the last month. His stomach issues are really up at this time. He is just getting over bronchitis. He hurt his right foot and has been limping for a few weeks. He has been waking up a lot at night throwing up and having tetany. The over heating issues are up due to the time of year.

Despite all of this his spirit is strong and he acts like nothing is bothering him most of the time. He wants to play and be with all his friends.

He has his Cleveland appointment in August and a few other follow up appointments coming up.

Please keep Jack in your prayers and pray he starts feeling better.

Update

2008-06-09T09:57:00.001-07:00

It is been a long time since a update. There has been a lot going on for are family these days.

Jack is not doing that great. This is a hard time of year for him. He is dealing with the overheating issues as always. He seems to be having even more issues with it and more sensitive these days. He is learning himself that the heat is too much. We are trying are best to keep him hydrated and out of danger.

His stomach has been acting up for about three weeks now. He is having bouts of diarrhea and a lot of complaining of stomach aches. He has also started the dry heaving and throwing up again. He has been pretty bad the last couple days. There is a stomach bug going around and I am not sure if it is that or his normal issues. If he gets worse I will have to take him to the ER. A full blown stomach bug for him is dangerous.

As far as appointments due to a lot of things I have had to cancel many. I have to reschedule some, so the next few months should be crazy. We are suppose to travel to Cleveland sometime this summer to see the specialist but that has to be changed also. Appointment changes is on my to do list for tomorrow.

Jack had his 4th birthday a few weeks back. He had a lot of fun. He is such an awesome spirit in this world. It was such a joy to watch him at his party. The day took a lot out of him. He had tetany that night and was down and out for a few days. That is how any big event seems to be for him. He presses on and acts happy regardless. He is a very thankful child. I thank God for him everyday. I will post pictures from the party soon.

Update April

2008-04-15T06:16:00.000-07:00

It has been a while since I have updated the blog. I have had a sick mom month. I guess it has been my turn.

Jack has been doing pretty well. The medication for the GI issues seems to be helping some. He has been struggling with all the same issues, but they seem a bit better. He is snotty and has a cold this week. It is not traveling quickly to pneumonia like normal. I think this is because Jack at this time is on a very strong antibiotic till the end of May. He had a rough night last night. He had a tetany episode. This is very painful. They did give me new medication to try during these episodes. I used it for the first time. It is hard to tell if it helped much or not at this point.

We are currently dealing with finding a school with a nurse for next year. The leap program Jack is currently in is closing. It is unbelievable that the state is allowing these programs to close. Jack gets all his services at school and it has been a good experience for him. We will have to drive at least 15 minutes one way to get him into a school with a nurse. We are trying hard to figure this all out. Believe it or not we don't have much time and they don't have many openings for the fall.

Please keep Jack in your prayers. We are asking people pray for the current school situation for the fall. We are praying it all works out OK.

Update on trip

2008-03-11T16:22:00.000-07:00

We came home from Rochester a little while ago. The trip was fine. The appointment went OK. The genetic doctor there agreed with the specialist here and in Cleveland. She doesn't think he has ehnlos/danlos 4. I guess that is not a mild form. She thinks it is the mito disease mainy. She did say she could clinically say he has # 3 of that disease. That is the milder form . There is no reason even if he has that to make it a diagnosis. The mito disease covers all that diagnosis and more. She did do the genetic testing for the # 4 just to rule it out for 100%.

Jack himself did real well. He has been very shaky and high tremors lately. He is still snotty and having his daily issues. All and all this has been an Ok week. Jack has about a two week break from DR appointments. Hopefully nothing new will pop up. We just take things day by day. We deal with everything as it happens. I am happy the GI issues seem to be calming down a bit. The muscle pain and tetany episodes are there but seem to be less this week.

Update

2008-03-09T20:58:00.000-07:00

It has been a while since I have updated the blog. Computer issues among other things. It is never a dull moment around here.

Jack is doing OK. He has been having some very frequent tremors and fatigue is definitely up. His stomach seems to be getting a bit better. The upping of the medications seems to be helping at this point. The allergy testing came back. He has no allergies. They think (allergist, Ent, and pulmonary DR) that jack has sinus disease. This too due to the the mitochondrial disease. Low tone, and all the muscle issues causing this. They are trying some antibiotic treatment, and sinus flushing for now. A CT scan in the summer will be the next step. He has been exposed to so much radiation at this point that we are waiting. His asthma has gotten a bit better since the pneumonia has passed. He is still having the tetany, but it has gone down a bit. Definitely need to get back to the eye doctor. We are still having current issues there. All and all a OK week.

We are going Tuesday to Rochester to see a genetic specialist for some testing. This is regarding the added diagnosis. Some of the DR's are in agreement and some just say it is the mitochondrial disease. We will see from this testing. The Enlos/Danlos diagnosis can be something that needs to be watched closely so we want to be sure he has this.

Praise be to God. Jack has been sleeping a little better. Every day is full of obstacles and frustration but we just give the glory to the Lord.

Trip Report

2008-02-18T05:06:00.001-08:00

The trip to Cleveland went well. Thank you to all of you who prayed for our safe travel. The weather on the way there was a little bad. The way back was fine. It was a long day, but both of the boys did well. It is easier to stay over, but this was the cheaper way.

The appointment went well. We basically just update the specialist on all that has gone on the past 6 months with Jack. He does an exam and goes over everything. He ended up giving me a letter that I was already supposed to have. It states about Jacks conditions, precautions and ways procedures should be done. It is signed from the mitochondrial disease specialist. He said that the tonsil and adenoid procedure with jack was not done in a correct manner for Jacks condition. He said that is why Jack did so badly with recovery. He said that was why he got dehydrated, sick and ended up missing so much school. He also said that all these tests Jack has been being put under for he has not been getting proper treatment for his condition. Jack is not supposed to fast. If he has to fast or be put under he needs to be admitted first and fast only while getting IV fluids. He also with the surgery should have never been released so soon. He said it would have been a minimum of 4 days in the hospital for a kid like Jack. He said Jack is being treated like a regular kid and shouldn’t. He also said we have been lucky and it could be very dangerous for Jack. I told him I spoke to the surgeon prior and told him what I new about the disease and was told he would be in the hospital a minimum of 3 days. I also said after the surgery I never saw his ENT surgeon again. The nurse new nothing about Jacks condition and the doctor doing rounds only new a little. He told me in a situation like that use the letter. If I am not being listened to I can call him at anytime. He has his beeper 24/7 and that is what he is there for. He said out of 6 months, calling him 1 time a month is normal. He said some parents call 3 and 4 times a week. He over sees Jacks case and that is what he is there for. He also talked with us about Jack's reoccurring infections. He talked to us about injections. There are pros and cons and we need to think about it. We talked about the GI issues and the tetany. He gave us a script for a pain medication to use at the onset of the tetany. He also took him off of some other medication for nerve pain he had him on. It was not helping so why leave Jack on it. As far as the GI issues he says Jacks medication has not been changed long enough to see an improvement. We will see how it goes and call him. He did an EKG. He ordered some extra blood work. He asked us to check with the specialist here regarding some other tests to make sure they have been done. Jack does something with his hand that concerns him. He wants us to watch him and update him on that in 6 months. Jacks growth looks good. Cognitively and developmentally he is still on track or above. He is concerned that Jack has had pneumonia 5 times and is only 3. We will be watching that. He said he sounded pretty good. The asthma is going to be worse because jack is sick so much. Regarding the chronic sinusitis, he said get the allergy testing finished. He also said to not let anyone do a surgery or procedure with out me and them talking to him. In 6 months hopefully I will know more about the sinus and allergies and can report back to him.

All and all the appointment went well. It is truly a blessing to see probably the best doctor in the US for Jacks disease. He does all the case studies for the UMDF. He gives us hope. He said in 2 years from now there will be more tests available for more answers. He also said some of the procedures Jack has had were not available 5 years ago. He gives us hope for Jack future. He is such a young and smart doctor. God is truly using a young doctor like this. What a blessing he has been to us. We thank God for allowing us to get hooked up with the best of the best. Jacks specialist here is excellent also. He doesn’t specialize in the disease, but has all the cases here and is a great guy. He leads us in all the right directions. He will admit if unsure and point us to the specialist for the disease. Both doctors email regarding Jack and other cases. It is good to know they are connected.

It is frustrating to know I have been right regarding how Jack has been treated. I tell these doctors and nurses and they either don’t listen or say they are going to check with the specialists and don’t. I know now I will be more aggressive then I have. I am sure they will love that. I will pull out the letter and if they still don’t want to listen I will get the specialist on the phone. I have to for Jacks sake. We are lucky he hasn’t been harmed nor had any other hard recoveries. Not many physicians know that much about Jack. They also look at him and assume it is a minor form of the disease. Little do they know his muscles are being impacted greatly and he can crash quickly. I am sick of people assuming and not understanding. I have gone through this with Jack with therapists, and even friends and family. People look at him and at times think he is not that bad. I say come live with him. Be here at night. Spend a full 24 hours with us and you will see. He has Ok days. I haven’t seen a good day in a year or more. Every day is full of obstacles and most of all pain. He has to be watched so more carefully then people realize. Yes, he could be worse, but because he is not mentally handicap he is not that bad? I have to be so careful with him and have been right so many times. He gets very ill quickly and I have to be on point.

Thank God he has had his hand on Jack. God's hand is all over Jack. I believe in faith what the word of God says. I expect the Lord will do what he says. He is the author of Jacks story and is going to use all of this for His purpose and glory.

Update

2008-02-10T16:07:00.000-08:00

Jack is a little better. We took him to the doctors on Friday. They said his ears still looked bad but could see a little improvement. His chest didn't sound any better, but was not worse. We have to take him back this week to follow up and go from there. He still is having trouble breathing but seems to be a tiny bit better.

We are just praying the medications work and he can get rid of the pneumonia all together. Depending on how he is doing he does have a appointment on Friday in Cleveland. We will see if he is well enough to take him as the week goes on.

I will update the blog regarding Cleveland, his last GI appointment, and the pneumonia towards the end of the week.

Pray for Jack Please

2008-02-07T05:25:00.000-08:00

Jack is not doing so well. Even though he has been on antibiotics for bronchitis he has not gotten better. Yesterday in the early morning we took him back to the doctors. That night he had been up crying complaining of his ear. He also is still coughing and was having trouble breathing. He stopped breathing 2 times. It was only for like 10 to 15 seconds, but it happened.

After a examination and a chest x-ray they said he had a nasty ear infection in both ears. The cronic sinusitis is still there. They also said after getting the report from the radiologist that he has upper lobe pneumonia. They put him on a much stronger antibiotic. They talked with his respritory doctor who put him on an oral steriod. We have to go back in 48 hours. If Jack is still not responding to treatment then we would go to the next step.The next step would be to possibly put him into the hospital.

Please pray Jack responds to this antibiotic. We do not want to have to go to the hospital.

Jack is acting pretty well. His spirit is high. When the pain medication wears off then he complains, but other then that he acts OK. I can tell he doesnt feel well because he is not eating well. He is also having diarrhea. Diarrhea alone can be a issue for Jack. We are just praying the pnemonia gets better and the diarrhea stops.

I had started a blog to update everyone on Jacks last GI appointment. He also has cronic sinusitis. The ENT and allergist are dealing with that. I will update all this at a later time.

Please keep JACK IN YOUR PRAYERS. He is a trooper. I am sure he will be fine. God is in control.

Update

2008-01-29T13:37:00.000-08:00

Jack has been doing OK. He and his brother have been sick. I took them last week to the doctors. They both had bronchitis. Jacks brother is better, Jack still is not. He also got his sinus x-ray done and it did not look good. The allergist wants Jack to add a extra 10 days on to the 10 of antibiotics he had already been prescribed for the bronchitis. This is a total of 20 days on antibiotics. After that he wants him to get another x-ray. We went to the ENT today. He said that he would wait till the summer to get another sinus x-ray. He thinks Jack has been exposed to a lot of radiation lately. He also is ordering some immunoglobulin tests. He said Jack definitely has chronic sinusitis. He said to continue with the allergy testing and take that all the way. Then he will go from there. If in the summer there is the same pattern( Jack has had since birth) then the best bet would be a CT scan of the sinus. He said the removal of the adenoids and tonsils did help the snoring and obstruction. That is good from the disease point of view. As for the chronic sinusitis the next step would be a surgery. He said Jack is pretty young for that so we will exhaust all the other possibilities first. I also talked to him about a article I read. He encouraged me to talk with both of Jacks specialists for the mitochondrial disease about it. It was a possibility and something he had read about.

The UMDF sent there news letter as always. There was an article that made me feel for once not alone. It was about kids and adults with Jacks disease and how they are finding they have recurrent infections. Never seeming to recover fully from colds. Having a cold turn into bronchitis or pneumonia's. Having to be hospitalized frequently when having pneumonia or bronchitis and other recurrent infections. Parents feeling like antibiotics just don't seem to help or be enough. It explained why with mitochondrial disease this is. It made so much sense. Long story short they are starting to use low doses of immunoglobulin injections for people with mitochondrial disease with recurrent infections. The article sounded a lot like what we have been going through with Jack since birth with( the one of many issues) him always being sick. I will talk with his specialists further about this. The people in the article have seen improvements. It is definitely something to talk about.

Jack has still been having the tetany and muscle pain. The tetany has been a bit less this past week. The tremors and leg pain more. I just wish I could figure out a pattern. it just seems there is not one.

I could make Jacks appointments, searching for answers, and daily chores a full time job. I thank God he gives me the strength to do all that, work and more.

Update

2008-01-11T13:28:00.000-08:00

Jack is doing Ok this week. He is still experiencing a lot of the episodes of the tetany. It is very painful and at this point the medications are not helping with that. He is still having a lot of eye issues and instability. His fatigue seems to be up this week and endurance down in the afternoon and evening.

He went for some allergy testing on Monday. They did some very basic scratch tests. They didn't see much, but one reaction. Jacks nasal passages were swollen. His eyes were glassy and red. Based on all that the doctor wants a sinus x-ray and wants Jack to come back for some more extensive testing in a couple months. He wants to see what the x-ray shows. He also wants to wait till he recovers more from the last surgery. He still felt he was in the process of recovery. He is keeping him on his current allergy medication. We will see what the x-ray shows and do the rest of the testing then.

Today he went for the nuclear med test. It was 4 hours long. Jack did well. We hope to get some answers from that soon. The test has given him diarrhea. He is not feeling too good. We will just be watching that closely. That for him can turn serious. We trust and pray it will not last.

Jack despite all this is in good spirits. A bit clingy and not feeling that great, but managing.

We will trust in the Lord for next week as we do every week. Praise be to God. We just thank him for Jack and all of are family and friends.

A New Year : 2008

2008-01-01T07:55:00.000-08:00

Happy New Year to everyone! We want to thank God for 2007 and pray that 2008 is a great year for everyone. It would seem through are human eyes that 2007 was not the greatest year for Jack and are family. When reflecting through spiritual eyes we can see how it is all part of Gods plan and purpose for are lives and family. God helped us get some answers this past year. He blessed us with some help financially through the successful benefit. He brought Jack through some hard procedures and tests. He gave us as his parents strength, wisdom,and great joy in many ways. God is the author of the story called life. All of are lives are so that we fulfill Gods purpose and make his name known. How exciting to think he is using us. We believe through are trials we will become stronger and have a great testimony. I know some of you have seen us down or us have a hard time with everything. To that I say we are human. Through it all, we get up stronger and the downs are short lived. Jack will be a walking testimony for the Lord, however the Lord chooses to do it. We in 2008 want to make a difference and make mitochondrial disease more known. We welcome any suggestions in doing that.

Jack today is doing better in some ways and having a hard time in others. That is the way the disease is. He is finally seeming to recover from the surgery. He missed almost a hole month of school and therapy. We pray and ask you all to pray also that Jack doesn't have a hard time getting back into the swing of school and therapy.

He has some upcoming testing and due to this has been taken off a lot of medication. We are seeing him having some more eye issues and stability problems.

He went for his GI second opinion and has some more testing coming up for that. They are trying some different medications and we will see. I will fill in at a later time regarding that. I am trying to keep this lite. The appointment was good, yet the end result for help is hard. Jack is also being refereed out for the new diagnosis. His specialist here is trying some new meds because he is experiencing tetany. It is very painful and he is not totally sure why he is experiencing this. This means more appointments, travel for both new doctors and two upcoming tests next week for Jack. They are not taking the GI issues lightly. He had lost some weight. They are not overly concerned about the weight as to why. Just keep Jack in your prayers if possible.

Jack had a nice Christmas. He was so full of excitement and wounder. He is so animated and full of happiness. He has so many questions and his thought process is amazing. He was so excited and funny opening his gifts. He is so thankful and full of love. He out of the blue said thank you later in the night on Christmas. He out of the blue tells all of us he loves us on a daily bases . He is such an amazing little boy. If you have a chance to be around him and experience him it is a blessing.

We want to again thank everyone who keeps Jack and are family in there prayers. The words of encouragement on his website, emails, phone calls, and knowing people are praying really helps us in the rough times. God has blessed us with so many people who care and want to help. We still stress at times about finances, the future for Jack, the lack of answers, the 13 doctors and there different opinions, but when we stop and think peace is what we feel because we know God is in control of everything. We are so very blessed in so many ways. We are confident 2008 will be a good year. Every year is a good year with God in control of your life.

Update

2007-12-11T16:42:00.000-08:00

Jack is still having a hard time. He is not eating and he is drinking minimal amounts. I called the ENT and they wanted to see him. He said he is borderline dehydration and he said that he was on the fence about admitting him for hydration. He is not pleased with his eating, drinking, and urinating. He said he didn't want to have to put a IV unless totally necessary. We decided to watch him the next 24 hours and go from there. I feel confident that I know what to look for. I also think disease wise Jack is better off home. He lost a pond and a half. For Jack that is not good. The doctor wrote me a script for some anti nausea medication and told me to fill it if necessary. He doesn't want me to fill it unless necessary due to some of the side effects. It is hard because Jack is having all the GI issues to know exactly what is the cause of the not wanting to eat. We are suppose to travel this Friday to Rochester for a GI second opinion. We hope Jack is well enough for a trip.
Jack himself doesn't want to go back to the hospital . I have told him unless he starts drinking that is were he will have to go. He is doing a little better the last few hours with the drinking. We are hoping to see him perk up. Day 5 is a hard day after this surgery according to the ENT. Due to Jack disease any surgery or procedure is harder. It can throw him into a down turn. Hopefully this will not last too long and Jack will bounce back. He was having a lot of GI and leg pain before the surgery so this just adds to it. It is just hard to see him in pain. Seeing someone you love, especially someone so little in pain day in and day out in one way or another is tough. It is just amazing how well Jack does. He is such little trooper. He is brave, strong in spirit, and just plain amazing. God is good!

keep praying PLEASE

2007-12-09T12:10:00.000-08:00

Please keep praying for Jack. He is having a really rough time. A simple procedure for most kids is seeming very difficult for him. Part of me is not sure debating the doctors and talking them in to him coming home was necessarily good. With Jack we never know what decision we make is the better one. He is sleeping better here, but hydration is becoming a huge issues. He also cant get he anti nausea medication at home. He perked up the eight hours he had it. Then yesterday was not eating or drinking well again. Then last night perked up a little. Then in the middle of the night or should I say early morning started throwing up. He couldn't even keep water down. He will not eat and we might be at the ER tonight if he doesn't improve. He did in the last two hours begin to hold down water. He was trying to nap and coughed and woke up crying. The lack of fluid also seems to be causing extra leg pain. So his legs hurt and his throat really hurts. Due to all of this and the disease he is full of fatigue and very low endurance. He has black circles under his eyes and this is taking a lot out of him.We are also still on the watch for some of the complications that may arise. I think I am possibly starting to see one. We will keep a close eye the next few hours. Some of the complications can arise as late as week three.

Anyways I wanted to update the blog for those of you who are wondering. Also the only thing we can do is ask for prayer. It is are human nature to worry, but we are trying to put it in God's hands. Please pray if you have a minute, and ask the Lord to help Jack get through this.We are hoping we don't end back up in the hospital, but if it is best for him then so be it. Please pray that the Lord gives us strength and wisdom.

update / thank you

2007-12-07T11:31:00.000-08:00

Jack just got home a half an hour ago. They wanted to keep him because this morning he was not doing well. He was not eating and drinking and was throwing up and just lying around. Once they gave him some anti nausea medication he started to drink. He did not sleep well and we convinced them to let him go. The medication should last eight hours. After that if he starts throwing up or not eating or drinking again then we will not have to take any chances because of the disease and possible bleeding and go right to the ER. As far as the surgery he had the adenoids and tonsils taken out. He did have a hard time coming out of the anesthesia, but not to horrible and they expected it a little due to the disease. Please pray he doesn't keep up with the GI stuff when the medication wears off. He was crying all morning and has really been down and out. We gave him a bath and he is resting and acting OK right at this moment. He slept very poor and is having a lot of pain throat and legs. He is experiencing a lot of fatigue and his mito stuff is acting up probably because of the stress of the procedure and his endurance issues. We just ask everyone keep him in your prayers for the next week or so. He will have to lay low and he is at risk of infection.

We also want to thank those of you who called or emailed to see how Jack was. It means the world to us.

Prayer

2007-12-02T10:42:00.000-08:00

We are just asking that everyone keep Jack in there prayers this week. His surgery is this Thursday. Even though it is just to get adenoids and tonsils out for Jack it is a big deal. It is not a in and out the same day thing for him. He has to stay in the hospital for a couple days and that is if everything goes fine. Being put under for Jack is a big deal. If that all goes well then he is at a much higher rate for some complications due to his disease. That is why he has to be watched for a couple days. Please pray that one, Jack stays well and can have the procedure done. Please pray that all goes well and he doesn't experience any of the complications that he is at a much higher rate to experiences. Please pray the time in the hospital goes well and Jack is not in too much pain. If all goes well we will only be in the hopital for a couple days. Depending on if we are there longer or not will depend when I can update the blog again. I will update the blog on how Jack did as soon as I can.

Jack has still been having a lot of leg pain at night and increased pain during the day. The GI issues are still there also. Please pray this all gets less in the next week.

Thanks for all of you that sincerely care for us and are praying.

Update

2007-11-27T18:40:00.000-08:00

Jack is having a rough week. His sleeping has been very poor. His naps as well as at night. He always wakes up at night, but it usually just once or twice and for shorter amounts and I can usual deal with him and calm his issues. Usually GI related or pain. Well this week he has been up a very lot. Leg pain mainly and a lot of cramping. He asks me to rub his legs and you can feel the muscles cramping. The only way I can describe it is like a Charley horse and it keeps happening for long periods of time. After he calms it seems he goes to sleep and them is up again. I have let him sleep with me after the third or forth time of waking because I am so tired. He then he tosses and turns and is up and needs this or that. He needs and I mean needs water and craves it . Then the bathroom due to the drinking. If it is not the bathroom for that then it is because he feels sick. Normally his naps are fine and he is so exhausted from school he sleeps well. This week or so he is exhausted, but is waking up during his nap after short amounts of time. He is very full of tremors when he wakes. He normally always has some light tremors when he wakes up and is unsteady. This week or so heavy tremors with a lot of instability. Today I got him to lay back down and he was having tremors while he was sleeping. He was very jerky and pail. His eyes for a while now have been doing some very weird things also. I have to call and get him back into the eye doctor. Another one of the many things on my to do list for him. He has been a little snotty which is normal for him. We just pray he stays well since his surgery is next Thursday.

We saw the orthopedic surgeon last week. She said the MRI looked OK. The xray taken showed the hip is still out, but not any worse so we are just watching it. Regarding his pain and periods of not walking at all and cramping she said to up his one medication. So we are doing that and we will see. She said something that I find impressive. I said to her that one doctor says this the other that regarding the not walking at all and pain and cramping. I said it is frustrating because I feel like they are mainly saying the disease is the cause and there is nothing we can do or something totally different. She said none of us know why this stuff is happening and we can only blame it on the disease or give are opinion none of them really know. That is what we already know but I gave her credit for saying it. They don't know and that is hard. I have been saying that all along. Doctors practise medicine and that is exactly what they do. There are not many good doctors out there. If you are not happy with a doctor find another. When you find a good one that cares, keep them. I thank God in our case with Jack we have found some good ones.

We see his specialist here right before Christmas so hopefully he can help in some way if the increased dose does not help with the pain. He also goes for his GI second opinion this month so hopefully we get somewhere or find a little help. The respiratory doctor had upped his medication due to his throat still being burnt. The insurance doesn't want to pay for the upped dose at all so that has been fun. Pay full price or have Jack go with out. Change the medication there is issues with that. There is never a simple answer. So we will see if we get anywhere in a few weeks with this new doctor.

Jack's spirit is still great. He even when tired acts so good. When he first wakes from a nap he is cranky but with in 10 minutes he is fine. He is all excited about Christmas and is all about the snow. The first snow fall he was overwhelmed with joy and excitement. I think a lot of us need to restore the joy and remember what it is like to be a child. Even though Jack feels bad everyday and has some obstacle he still presses on. Little complaining, little fussing, and enjoying his life and the little things. He is such an inspiration to me.

MRI

2007-11-15T16:12:00.000-08:00

Jack finally had the MRI of the hip and Knee done! We are so pleased it was able to get done. Thank you to everyone that was praying. We don't have the results yet. We will know next Wednesday at his appointment with the orthopedic surgeon.

He did pretty well with the MRI. He was under longer and did have a little hard time coming out of the anaesthesia. He was under longer then he has ever been. From what I have been told about the disease for some reasons these kids can have a hard time coming out of Anesthesia. I got a little concerned for a moment. I new it was taking him longer and when I was trying to wake him up he wasn't coming out of it. So even though I don't think I let on , I was a bit concerned for a moment.
He did have some breathing issues. When I came in to the room he was wheezing and snoring differently then his norm. The anesthesiologist was messing with his neck and trying to get him to breath better. He said to me he needs his tonsils out. The tonsils are obstructing the air way. I said well he is getting the adenoids possible tonsils out in three weeks. The anesthesiologist did come and check on him several times. This I know from previous MRI is not the norm. He said he was concerned with the breathing and the wheeze. The wheeze didn't last to long. That was good. Other then those two issues it went well.
They had said if they don't see much the appointment would be about 45 minutes to an hour. They also said they would inject dye if they saw it necessary. Well he was in the MRI for an hour and a half and they did inject dye so I don't really know what that means. I can only speculate at this point. Jack himself did great. He didn't even cry when he went in the room and the mask was put on his face to go to sleep. We don't lye to him and try to explain things best as possible. He was playing and talking to the doctors. They all were commenting on how sweet he was. They were so surprised by how calm for his age he was. I guess he is getting use to it all. Then again he has always dealt pretty well with it all. He hates to have blood drawn or shots, but other then that he is good. He just amazes me more and more. What a spirit! I know he is my Son so I am partial, but if you get a chance to know him you will know what I mean. God definitely has something special planned for him. He is going to use him!

Tomorrow we have a full hospital day of pre testing and meeting with the surgeon for his upcoming surgery. Jack is such a trooper! Please pray Jack does well. I am sure he will , but it is a lot. He is having some fatigue issues and tremors from the long day today. Please pray it doesn't make for a hard night for the next few nights.

Thanks to all of you that pray for Jack. We truly believe it is why he is doing as well as he is. Every day has its obstacles, but we are thankful he is not worse then he is. We believe strongly in the power of prayer.

Thank You / Update

2007-11-11T21:47:00.000-08:00

We want to start by saying thank you to all the people who came to the benefit for Jack. We were truly blessed by all the love and support. So many people came and gave of there time and money to help. We are forever grateful.

He did well on Saturday at the benefit. It was pretty over whelming, but he did well. He stayed in his stroller enough that he was not too bad last night. He still woke up three times and had some leg pain, but not as bad as I expected. I must say thank you to his Teacher from school for that. Talk about an amazing women. She stayed for the whole benefit and helped with Jack so much. We were so busy greeting everyone and she made sure Jack sat and had his water and everything else he needs. He complied very well with her.He listened and wanted to sit with her. I think if it would have been us it would have been a struggle. All his teachers from Leap came and his best buddy the principle. That school and program has been such an answer to prayers in our life.

Today, Jack still has a little cold but it seems to be getting better. We are keeping are fingers crossed that he will be well enough for the MRI this Thursday and pretesting Friday. They changed his actually surgery date, but not the pretesting.

Please keep Jack in your prayers. This MRI is a big deal and he will be under the longest he has ever been under. That in itself poses more issues for Jack. Jack has two times of being put under and four other appointments in the next 3 weeks. Please pray he stays as healthy as possible for him and that everything goes well.

Update

2007-11-07T06:26:00.000-08:00

Jack has a cold AGAIN! He is snotty and coughing. It has been like this for a couple days. The MRI is next Thursday. All we can do is hope he gets over it by then and doesn't get worse. I think I will feel like screaming if I have to reschedule it again. He is doing a bit better stomach wise. His respiratory doctor upped his stomach medication. He said when he saw him last that his throat still looked burned and with the fact he wasn't getting better he wanted to try it. He is complaining every other day instead of every day. If it is multiple days in a row he is complaining then it seems like we will get a day when he doesn't mention it after a bit. He is still dry heaving and throwing up but it is not everyday. His leg pain is still there but seems a bit better. Not every night or every day. He still wakes up every night with leg pain, stomach complaints,coughing, or something. He has had a few rough days this past few days with the tremors and instability, but he is getting or should I say now has a cold so maybe that is why.

I called the doctor that ordered the immune testing and she is out of town. The women I talked with said if there was anything bad she would have called. I am assuming the labs were fine, or at least not to concerning. The GI stuff still really bothers me, but we have to wait for the appointment. I am just trying to focus on the pretesting for surgery, the MRI, and the surgery for this month. I take it one month of appointments at a time.

I am just starting to realize that there is not much I can do at this point for Jack. He hasn't had a good day in a long time, but he is having better days the last few days. Everyday for him is always going to have signs of the disease and the issues. It is just hard when it is so full of so may of the issues and he is in pain. I am thanking God this week his stomach has let up a bit. We just have to take each day at a time. We have to try to watch Jack carefully and help to prevent as much as possible things that will trigger really bad episodes. Preventing is not the right word. I guess what I am trying to say is there are things that we know now, will make him have pain and be worse so we try to prevent those situations. Everyday has some kind of obstacles. I am just glad this week it is lighter. I am not happy about the cold and this could send us into a really bad week but only time will tell.

Please pray Jacks cold gets better by next Thursday and we can FINALLY have the MRI done. Please pray the pretesting on Friday goes well and he is OK.

We are looking forward to seeing everyone that can come to the benefit on Saturday! Mac and I want to thank everyone who is putting Jack benefit together. It is hard to be in a position to need a benefit. It is hard to realize this is all what it is. I will say that we have seen Gods love and hand in it all and are forever grateful to everyone who is trying to help.

UPDATE

2007-11-01T18:43:00.000-07:00

Jack has had a OK couple weeks. He got over his cold, thank you Lord! He is STILL having the stomach issues and complaining of stomach aches. He is still dry heaving and vomiting, but it is less. He is not vomiting every day. He had a real bad night this past Sunday. He like normal woke up with leg pain. This time it was one of his pretty intense ones. He was crying and both legs were cramping. I could feel them when he asked me to rub them. They get so tight you can feel it. He had to go to the bathroom and went right down to the floor and could not walk at all. Monday morning he couldn't walk at all at first. After about 45 minutes he started to walk and do better. He had some tremors, but other then that he seemed much better. He did not have his regular full nap on Sunday. He also had added play. You just never know. In that same situation some days he would be OK. Never fine, but it would just cause unsteady walking and tremors. We got that and much more this time. He had some choking issues yesterday. He went trick or treating, but that was a bit hard. He had to go in the stroller a lot. He was very unsteady and not doing to great before we even left. I don't think anyone but me and his father noticed that, but we did. He couldn't carry his bag after about 10 houses. It was just to heavy for him. He said he was tired a few times also. He was good about it. He knows when he just cant go any more. He let me stroll him right up to doors. He would say trick or treat and I would take the bag and get the candy. It is one holiday we have a hard time with anyway. We might have to stop it all together if it gets too hard. The boys can always just pass out candy. I have some very cute pictures from last night. Jack was Buzz lightyear. I will download the pictures soon and put them on the main blog page. I think everyone will think he was so cute!

He saw the rehab doctor last week. We are trying some new braces. the ones they had made were not correct. They also want to try some knee taping. she said she knows everything is disease related, but she wants to try to help with the function part of things. If we can try to eliminate some of his issues it could help strengthen Jack in some ways. She knows he has to deal with these issues and they will not go away. She is trying to help with the pain. She believes some of these things might help lesson Jacks pain. I listen to all the 13 cooks in the pot. It is very difficult, they all see things different. I just will try anything to help Jack. Since there is no cure or prognosis anything we can do to help make the pain less is top on my list.

We got his appointments scheduled for the GI second opinion and the allergist. The GI appointment is December 14th and the allergist is not till January. Right now we are focusing on all the other appointments coming up. November is a crazy month for us with his appointments.

Please keep Jack in your prayers. Pray he doesn't get sick again. Pray that he is well on the 15th of this month for his MRI. Please pray for the doctors and give them wisdom in treating and dealing with Jack. He also has surgery at the end of the month. Please pray there are no complications. Help us as his parents to make the best decisions. It is so hard with so many doctors involved.

Jacks benefit is being done by family and friends. It is coming up in just 9 days. The fundraising committee is selling tickets, magnets, bracelets, and passing out flyer's this Saturday starting at 2:30 at the super walmart in Camillus. You can get your presale tickets for next Saturday there if you would like. I was told that you can always buy them at the door also.

We just want to thank everyone that is praying for us . We also want to thank everyone that is helping to put this benefit together. We have seen such kindness from so many people. Words can not even express how thankful we are for everyone's help, prayers, and support.

Update

2007-10-17T16:14:00.000-07:00

I took Jack to the doctors the other day. He had a sinus infection and bronchitis. They said it kind of sounded like croup, but with Jack it is hard. They put him on antibiotics and told me to do his steroid puffer and albuterol treatments. He is doing better today. Still snotty, but it is almost a all the time thing with him. If it is not a cold it is his allergies. The cough sounds kind of bad, but he is feeling much better. He slept better the last few nights. He only got up once or twice instead of numerous amounts.

I talked to Jack specialist here yesterday. I filled him in on all that is going on. As far as the stomach he talked with the peds GI here. He said he thinks we should go to Rochester for a 2nd opinion since we are seeing little improvement. Depending on what they say we will try some possible treatments for a stomach condition that kids with mitochondrial disease can experience. If still no luck then possibly Boston. I told him about the new added diagnosis of the hyper mobility syndrome, Ehlers-Danlos 4 . He was surprised that she diagnosed Jack with that. He has never seen a kid with mitochondrial disease have that. He said he knows Jack is extremely flexible, but didn't realize the severity. I told him she took Jacks leg and put it behind his head. I also told him that while we were there she called the specialist in Cleveland and he was not surprised at all with this diagnosis. He said that he must have seen it before with mitochondrial disease then. He told me some of the seriousness of it and things that need to be watched. I then told him about the immune testing they want to do and he said he agrees. I also told him what the rheumotologist said regarding the adenoids. He said he sees her point, but if there is any obstruction of the air way then due to the mitochondrial disease the obstruction should be removed. He said to go get the immune testing done and if they find anything to have the ENT contact her. He said he would still say remove the adenoids and possibly leave the tonsils if there is an immune disease or disorder. He definitely said to go get Jacks eyes looked at again. He had said that before the added diagnosis. He and her have noticed somethings with the eyes. He also said to have her report sent to Jacks cardiologist and call them and tell them of the new added diagnosis. Then see if they want him to come in before his next scheduled check up or to wait. Then he said to also get a referral to a allergist. The allergist he said possibly even before the GI second opinion if possible. He now thinks the stomach, immune and everything else all goes together and fits in the mitochondrial disease puzzle. He said maybe not because of this issues it caused that, but he thinks now after seeing the biopsy, new diagnosis, immune issues, and me telling him all that has been going on with Jack that everything might end up fitting. Jacks sedimentation levels are always high and he is now thinking it could be caused by something going on with the immune system. The stomach I think he is thinking could go along with some type of allergy thing.
So this week coming up I will be taking Jack to an appointment and after to get the blood work for the immune testing. I am waiting to hear back on the referrals. We are keeping the current surgery date and it looks like regardless we will most likely keep it. He said to do what the rhuemotolgist and the specialist in Cleveland said regarding medications and hopefully they will start to help with his pain.
I never realized how hard it would be to make sure he gets all his medications each day. The once a day ones are easy, but the two and three times a day ones get hard. Plus they taste nasty and I cant even stand the smell of one of them. He is such the little trooper. That was about it...I think for the conversation. I do really feel like I am forgetting something important....I guess I will add it in another blog if I did.

I am also filling out forms to get reports and calling doctors. Jacks appointment schedule for November is crazy. It is getting very hard to keep any type of job. This kind of stuff is were sometimes I wish I had help. My husband has two jobs and cant help much with appointments and taking time off. Keeping all this straight and calling in prescription, dealing with insurance, doctors, reports, calendars and everyone in the family schedule is becoming a full time job. One I do when I can or very late at night. I am not complaining...God has given me the strength to do it. Yet,I would be lying if I said it doesn't get draining or hard. Sometimes I feel overwhelmed. I still have all the regular things of life to deal with and a marriage and another son. I try to balance it all. It is just like sometimes I say is this really real or am I dreaming. Then I realize I am not dreaming and it could always be worse. God gives me the strength to keep going. I just hope and pray I do a good job and make the best choices for both my boys. That is one of my biggest fears is to make a bad choice for my family.

There is just so much I want to do. Be a good parent, friend, family member, wife...and I feel like I don't have the time. I haven't had time with some friends in forever. Hard time fitting in family....time for my husband....I don't want to let anything pass me by. I don't want people to think we have changed or don't care about them. I just hope people understand.

Jacks attitude and my other son is what keep me going. Jack acts is if everything is OK. My other son always has words of encouragement even though he doesn't know something is wrong. They deal with things so well. I guess that is why the scriptures refer to us adults being like children. Jack and Noah are such blessings! We as a family are going to have such a testimony. I think in some ways we already do!

Update on appointments

2007-10-15T07:27:00.000-07:00

We went on Friday to see a Rheumatologist at the children's hospital in Rochester. It was another frustrating appointment for us. Lots of questions and not to many answers. More tests for Jack also. After listening a little about Jack and reading what she had from his specialist here she did an exam. She said Jack has Hyper mobility syndrome-Ehlers / Danlos 4. We pretty much new he had hyper mobility issues. She just diagnosed it with a name. She said in her opinion a long with the mitochondrial disease causing leg pain, that people with this syndrome can have a lot of leg pain and issues such as we described with Jack. She said they would prescribe medication to help with the pain and all doctors should be aware of this diagnosis when evaluating him. She called his specialist in Cleveland while we were there. The medication he put him on for the muscle and or nerve pain is not what she would normally prescribe but she thinks it will work fine. She also said it is a better choice for Jack now that he is having all these stomach problems. She said once and if they get resolved the stomach issues and the current medication doesn't help then we can try something else for the pain. There are some things that should be monitored with this syndrome. They are also the same things he needs monitored for the mitochondrial disease. They just need to know he has this syndrome also so they can look deeper. She wants him to go back to the eye doctor and have the lens of the eye checked and the cartilage. When he does his follow up with the peds cardiologist she wants his heart valves checked.
Aside from all that she is a rheumatologist who also sees kids with immune issues. She was a little surprised since Jack is always sick that immune system tests have not been done. I told her everyone blows it off to the allergies and asthma. Even more now that he has large adenoids and tonsils. She sees that point, but since birth one of my main complaints has been he is always sick and catches everything. Fevers at times that are unexplained also. Anyway she has ordered immune system function tests. She proceeded to say that we need to get these tests done soon since he is scheduled for the adenoids to come out in November. She said if the tests show he has an immune system disorder that taking the adenoids or tonsils out might not be a good idea. I told her they want them out due to the mitochondria disease and not wanting to put any stress on his heart or other muscles due to the snoring. She said in that case it still might be better to take them out. Either way she said get the test done first and if they find something they will all have to have a meeting of the minds and decide what is the greater risks. Other then that she said he has no rhematology diseases. She really didn't have much to say regarding the periods of not being able to walk at all. They all pretty much say it is muscle or nerve related. Weather it is his muscles are so weak he cant walk because they give out or he is in pain and cant walk...they don't really know for sure.

Today was suppose to be the MRI and AGAIN he cant have it done. He is very sick and has a terrible cough and fever. The fever started Friday night late or should I say Saturday morning. He started last Wednesday with a snotty nose and cough. The cough got horrible on Saturday. I am taking him today to the doctor to see what is going on and if he is contagious. We had to reschedule the MRI for November.

Needless to say we are very frustrated. He is still having the stomach issues and I am waiting to hear back from his specialist here. He called on Friday when we were on are way to Rochester. I have to go over all of this with him and see what he thought of the biopsy. Hopefully I will talk to him by tomorrow.

Frustration is a normal feeling I feel lately. Each doctor looks at everything from his speciality point of view and they have there own opinion on why this or that is going on. Bottom line most of all of this is due to the mitochondrial disease. There is no cure or prognosis and they are trying to help him with pain through medication. Medications are the only thing they can try to help with the mitochondrial disease and all the stuff that goes along with it. The GI issues are not totally fitting so hopefully they will get to the bottom of it and be able to do something. If not then it will probably be due to the disease and we will see what things we can try. It is so hard to have him sick or not feeling well all the time. It is hard as his parents to not be able to fix the problem. Coming to the reality that there is not much we can do at this point is hard. With everything it is a watch game. As things arise deal with them. It is frustrating too because due to his age even the things that arise they want to monitor and not always due anything or try something. It is a wait and See game and I think they don't know what to do sometimes. I have to just realize there is no cure or prognosis and pray the little things that they can do will start to help him have as much of a normal life as possible. I just hope he can have a life with less sickness and pain. Sometimes I say to myself he is only three...why....what if...what will be of his future...he cant do what other children can....I feel bad for him......then I look at him and see how well he deals with it all. He is so happy and doesn't let feeling cruddy keep him down. I have to believe in faith that God is in control and has a purpose for all of this.

Pray Jack gets better and is free from bad illnesses in November. He has the MRI and the surgery scheduled at this time. Pray for wisdom for his specialists regarding everything including the surgery. Pray we get somewhere with the stomach issues and that Jacks pain becomes less.

update

2007-09-30T18:13:00.000-07:00

What appeared to be a stomach bug possibly was not. I am not sure at this point. If it was a little bug it aggravated whatever else stomach issues Jack is having. He has been gaging , dry heaving, throwing up, and/or diarrhea. He is complaining every day of stomach pain and having one or more, or all of the things going on I just stated. Needless to say we are very frustrated.

He had a period Saturday night/Sunday morning (1:00 AM or so) were he woke up crying with leg pain. This is the worse I had ever seen him. He was hysterically crying and saying they hurt. We gave him pain medication and I rubbed his legs continuously for 45 minutes to an hour before he stopped crying and fell back a sleep. My hand was numb by the time he finally fell a sleep. He had to go to the bathroom when he first woke up with the leg pain and when we put him on the ground he did the spaghetti legs and went straight to the floor. He was unable to stand or walk. It must have been due to the muscle or nerve pain. When he got up in the morning he could walk and bare weight. He was very unsteady and you could tell favoring his legs. He would not walk much at all till about 10 AM.

Tonight he started with his gaging and dry heaving. He had seemed clear for the last few days from a cold and he started with a runny nose from out of know were. He started coughing and has a temp of 99.9 so hopefully nothing else is brewing.

We had a appointment with Jack's specialist here this past week. This appointment was during the high light of what has continuously been going on, but aggravated this past week (or should I say is at a all time high this week ). This was before the leg issue last night.
I went over with the specialist everything that had been going on. I updated him on are Cleveland trip and the ENT visit.
As far as the ENT wanting to take out the adenoids and possible tonsils Jacks specialist here said we should go ahead with the surgery. He understands Jack is at a higher risk for some complications, but thinks for snoring purposes alone we should do the surgery. He said as most anyone knows snoring strains on many muscle's of the body. One main one being the heart that gets strained. He said in Jacks case due to the disease and the fact that his muscles are being impacted greatly he said Jack doesn't need any added stress on his muscles. He also said his heart checks out fine at this time and we shouldn't put any added stress on it or any other muscles. He said if it helps with colds that would be good, but the snoring alone and the fact that Jack doesn't need any added stress on his muscle is enough of a reason to do it. I Called and they had already scheduled him for this month to have it done. I rescheduled it due to other appointments Jack has this month. I told them to schedule something for the end of November beginning of December so I should be getting a conformation in the mail. I also went over the Cleveland trip and medication increases with the doctor.
Then the big thing was the stomach issues. I told him Jack was not any better if anything worse. He had asked me questions that I couldn't answer regarding the stomach biopsy. He is requesting a fax of the report form the gastric doctor and the biopsy results. Kids with mitochondrial disease can have stomach problems. There are specific things he is going to look for. I told him I had talked that morning with the gastric doctors nurse. I told her he had not responded to the treatment and was getting worse. Basically the doctor relayed through her that Jack has chronic gastritis and had/has some type of bacteria in the stomach. He said it could be due to many of his different issues and thinks it is a combination. They mentioned the ENT issues, reflux, his choking and swallowing stuff ect.. What I got was he really didn't know why Jack is getting worse and didn't know what to tell me. The nurse told me that if the specialist called him he would get farther then I or her would. I told Jacks specialist here that something is not settling with me correctly. This has been progressing and has been a growing issue since this past March. He agreed with me and said he wants to see the biopsy. Depending on what he saw we could possibly try some steroid treatments. That is if he saw one of the things he was thinking on the biopsy. If not and Jack is staying the same or getting worse then he would refer us to a Pediatric GI Doctor who knows a lot and deals a lot with Jacks disease. He is located in Boston, Massachusetts.
His specialist here said that Jacks sedimentation levels are always high and that he has many area's of inflammation . He said this he can link to the disease. The gastritis and its symptoms are not fitting.
He also wants me to get some labs done ASAP and try some drug changes soon. He wants to get the labs together for Jacks upcoming rhuemotologist appointment. We might get some possible help with the leg area with that appointment.

I am going to call him tomorrow and see if he has gotten to look at the biopsy results and what he thinks. I am also going to tell him how bad Jack has been since we saw him last Tuesday. He had said once he looks at the biopsy we would schedule the Boston appointment if needed because it could possibly take a while to get in.
I also want to tell him about the leg issue due to noticing some things that during these leg issues they have told me to look for. I will see tomorrow what he says.

I would just ask for prayer for Jacks doctors this week. Pray that God gives them wisdom in dealing with all of this. Help each doctor he comes in contact with to see the seriousness of all this and try there best to get to the bottom of some of this. His specialist here is excellent. He is the main one pointing us in directions and helping us make decisions. Pray for wisdom and understanding for him with all his patience. I pray that God blesses him.

Please pray we get to the bottom of these stomach problems. Please pray that Jack's cold gets better and stays just a cold and nothing more.

We would just like to again thank everyone for there prayers. Knowing that people are praying for us and Jack gives us hope and peace.

MRI Update

2007-09-24T05:12:00.000-07:00

Jack can not have his MRI done today! He started Saturday night with throwing up and it lasted till last night. He is better today. They want him clear from vomiting for a full 24 hours before they would put him under. He still has a little cold, so they don't really like that either.

It is very frustrating. There are several reasons why we need this MRI done. I don't want to do anything that puts Jack at a higher risk while under anesthesia, but are luck is very frustrating. We cant afford for me and my husband to take days off especially if a appointment is not going to happen. The only good thing is he is contagious until he has stopped vomiting for 24 hours so he wouldn't have been able to go to school today. I would have had to take the day off anyway. I wouldn't want to put anyone else's child at risk.

Are luck with this appointment has just been very off. Since school started it has been one thing after another with Jack being sick. I figured this would happen! It is just hard when we are trying to wrap this appointment up. We need to know more about this left hip being out. We also need to have it done for several more reasons! We are just frustrated! I now need to take another day off for the rescheduled MRI. My husband will probably not be able to and I will have to be on my own when and if this appointment really happens. It was luck that my husband managed to be free to go. Anyways- things happen...especially to us lately. Just are luck. I guess I need to look at it from a more positive prospective. We are lucky the vomiting didn't send Jack to the hospital. A stomach bug for him is very serious. I know if I would have called the specialist he would have sent him in to the hospital to be hydrated. I was waiting to see if things got better or worse. Thank God he stopped vomiting before he crashed. He was having full body tremors. It is very hard to see him like that. I know he could be much worse, and I am thankful he does as well as he does.

Pray Jack starts to feel better. Totally free of this cold and bug. It is enough to deal with his regular problems from day to day. A nasty cold and stomach bug makes it harder. Please pray that Jack is well enough to have the MRI done for his rescheduled appointment in a few weeks.

Update

2007-09-21T06:40:00.000-07:00

Jack has had a bad cold since last weekend. It is frustrating because he is on two different antibiotics for the stomach issues. He is on allergy medication also. Still when he got this cold it was pretty nasty. He was not sleeping well and of course it went to his chest. He is doing better the last few days. He is still snotty and having a cough, but doing better.

Jack went to the ENT last Monday. His specialist here had refereed him a while back. It was one area that had not been on the priority list and He thought we should check it out. The appointment was OK. I have mixed feeling to say the least. They want to take Jack's adenoids and possibly his tonsils out. He said it would stop the snoring and possibly help with the recurring colds. There are some issues that can happen to any kid who has this procedure. Jack is at a greater risk for complications due to his disease and low tone. If some of these complications occurred they should be able to fix them , but it would require more surgeries. Also normally this is an in and out the same day procedure. Jack would have to stay in the hospital to be watched for these complications and due to the disease. For Jack it would be a minimum of 36 to 48 hour stay. The ENT is sending the report to both his specialist's and his pediatrician. He is setting us up for a pre operation appointment and we can go from there. I am very unsure at this point what to do. Jack has gone through enough in the last year. It is not just a simple procedure like it would be for a regular kid. There are so many what ifs.

Jack is scheduled for the MRI for this Monday. He is still sick so I called them. Last time we got there and they would not put him under due to the cold and reflux. They were afraid of him aspirating. When I called yesterday they said since we have already put the appointment off and they cant get him back in for about 4 to 5 weeks for me to wait till Sunday. They will have an anesthesiologist call me Sunday and we will go from there. He is getting better so hopefully we can have it done. The procedure it self is not what worries me. It is the fact that this procedure he will be under for possibly two hours. They said if everything looks fine and it goes quickly he would be under 45 minutes to an hour. That is the best case scenario. Jack has done fine with anesthesia during the scope and the surgery in Cleveland. He also had a MRI about two years ago and he was OK. It was a brain MRI though, and they do them quickly. Him being out for a longer period of time increases risks for him. As of today he will be getting it done on Monday. We will be up at the hospital a long time. They have us come an hour early to begin with. Then the procedure set up time, procedure, recovery ect... It is hard because Jack's father works two jobs and I will end up being on my own. It will be a long day!

Please keep Jack in your prayers. Pray he is well enough to have the MRI done. Please pray that him being under longer doesn't cause any issues. We ask that everyone pray all goes well.

Keep us in your prayers regarding making the best decisions for Jack. It is very hard to know what the right decisions are for him. He is doing better right now and seeming to be coming out of this down turn he had been in since April. It is easy when he is doing better for people to under estimate the disease and how serious things can be for Jack. Please pray we as his parents make the best choices for him.

First day of PreSchool

2007-09-07T11:19:00.000-07:00

Today was Jack's first day of preschool. I had a meeting last week with his therapist's, school nurse, teacher, and principle. I have been very impressed by there program. We went to open house yesterday. He was a little scared. There was AM and PM parents and kids so it was a lot of people. He warmed up after some of the people cleared out. He seemed OK with it all. This morning when he woke up he was excited. He was ready to go. When we got there he was OK. He went right up to the door to Wait. Once they started to come out he got a bit scared. He ran and said he didn't want to go , but in a Jack joking way if you know him well. Then I picked him up and the head teacher came over to talk with him. He told her he had a water bottle in his bag if he needed it. She then said OK and tried to take him. He said "NO I WANT TO WALK" So I put him down and she held his hand. She introduced him to another boy and held this child hands also. Then they walked in and he didn't look back. When I came to pick him up they said he did well. They said mid way through he started crying for me. They said it was hot so they took him in the therapy room which has AC. He stayed in there and wanted to skip Art class. I asked him if he had fun he said yes. I asked what he did he said "play and cried for you". Then he said "the teachers are mean and I am never ever going there again". I asked why and he said "because". I am not sure what that is about. He said one girl was mean too. I said well you have to go back Monday to play with your other friends and he said "OK". A weird conversation so we will see how the first full week goes.

Keep Jack in your prayers. This is a large change for him. Pray for us also. It is hard with his issues to trust that people know what to look for and do with Jack. Things can pop up quickly. He has little signs that most people (even people close to him) don't know to pick up on. Pray that his therapists are good and his therapies go well. His old PT is going to do some transition visits so that makes me feel a bit better. One good thing is that morning is Jack's best time usually. The hard thing with that is we just don't want them to think he is better then he is and have something happen. He has been in that situation many times and the out come has not been good. I will say that they did good with the over heating today and making sure he got into the AC. I have to say I am pleased at this point. They seem to be listening from the meeting and taking this seriously. We want him to function as normal as possible. We also must not forget how fast he crashes. It is hard, but we pray it all goes well.

Scope / Biopsy

2007-08-31T20:17:00.000-07:00

We would like to thank everyone who was praying for Jack on Thursday. He came through the procedure well. He did take a few to come out of the anaesthesia, but that was more because they let him come out of it slowly. They also used deeper medications then normal due to the fact that Jack must have a breathing tube put in while under anaesthesia. This is due to the asthma and reflex.
They also put in a Ph probe that he had to keep in for 24 hours and have removed today. The doctor spoke with me after the scope and biopsy procedure. The doctor said everything looked good. No abnormalities, ulcers, ect.. and we would see what the ph probe and biopsy indicated and go from there. If everything checks out OK it would all be disease related and he would be referred out to the swallow team and see how they could help.

We went today and had the probe removed. They downloaded and read all the information. The doctor said everything looked normal. Even the times during the night Jack complained of a stomach ache appeared normal. He did dry heave during the probe time and that period appeared normal. The doctor said we should have the results from the biopsy by Tuesday or Wednesday and go from there.

I received a call at 4:30 from the doctors nurse. The biopsy results were in. They did see something. Jack stomach tissue (even though the doctor didn't see it during the scope) is irritated. He has major gastritis and pylori virus. They said he has to go on antibiotics and his other stomach meds increased for two weeks. Then back to his regular dose of stomach meds and they would see him in 8 weeks. They said people can get this virus and they don't know why. They said that usually with the antibiotics you can get rid of it and some people are fine. It can be recurring in others. The nurse also said if he is not improving after the treatment then the doctor would pursue more tests and see if anything else is going on, but he definitely is irritated and has this virus and gastritis. I asked if this could in any way have to due with the stomach muscle being weak and the disease, but she couldn't answer that and the doctor will not be in till Wednesday due to the holiday. She left a note for him to call me and I will get some more answers then.

We are hoping he responds to the treatment and it is not recurring. We just want him to feel better. It is hard to have him waking up 2 or 3 times a night with stomach or leg pain. I hate to see him in pain. It is also hard to see him dry heaving or throwing up. If it is not one area it is another. I just tell myself it could always be worse and he deals very well with it. I guess he is use to it. I just feel bad. As his parents we want to solve his problems and cure his pain. It hurts us that we cant. It hurts us when we cant answer questions about his future. We just have to keep are faith and trust in God. He has a plain for us all. We have to trust in him and not lean on are own understanding. We have to not question, but trust. How hard that can be at times when nothing makes sense. If only we could see the picture through Gods eyes and understand the whole plan he has for each of us.

Jack inspires us. He makes us realize how ridicules we can be. How precious life is. He makes me remember what is important. Then we get all raped up in everyday life again. What pulls us away from are priorities and what we know is most important? That is a question I want to answer. God is showing us so much and talking to us through are life lessons everyday. Are we listening? Are we truly understanding this great big picture called life? All I know is jack is going to have a greater understanding earlier. I thank God for Jack's spirit and happiness around me.

UPDATE

2007-08-13T14:26:00.000-07:00

Last week after I updated the blog Jack went to the pulmonary Doctor. He had caught a cold the night we came back from Cleveland. This cold aggravated the asthma and the pulmonary doctor put Jack on a inhaler 2 times a day. He also gave us the albuterol if needed in the puffer form for preschool. Jack goes back in two months for a respiratory check.

Today he was scheduled for a MRI under anaesthesia for the left side hip and knees. We went and went through the whole registration process. We saw the nurse, got prepped and saw the anesthesiologist. We were there 2 hours and they were just about to take him in when the head anesthesiologist came to talk with us. He said he was not comfortable at all putting Jack under anaesthesia. He said he was afraid of complications with him aspirating. This was due to this cold and the asthma, and reflux. He said because his reflux is so bad and the medication is not working that the snot or stomach fluids can come up when a kid with reflux is under. This could cause him to aspirate leading to many complications. In a kid with asthma the chance is higher of complications if the reflux acts up. If Jack didn't have a cold and asthma was not acting up he would have done it. If he was to go under and reflux anything they should be able to handle it (most likely) if his asthma was not acting up and he didn't have a cold. The combination cold and asthma flare up with the reflux made him very uncomfortable. Needless to say we rescheduled the MRI. The anesthesiologist wants Jack cold free for two to three weeks before the MRI procedure.
Jack will be scoped on the 30th if all cold symptoms are gone and the asthma is more under control. That call will be up to a different team and anaesthesiologist.
Jack will not have the MRI until the 6th of September now. He for the MRI is under at least an hour to two hours and only 45 minutes tops for the scope with biopsy.The time under Anesthesia comes into play due to Jacks disease.
Anyway, Better to be safe then sorry. This was just for a test not a surgery and he and us didn't want to take any chances.

Between the new respiratory medication and the new medication the doctor from Cleveland has put Jack on the co pays are very high. I also hate Jack being on so many medications. He is up to ten prescriptions a day some three times a day. Regardless that some are supplements it just bothers us. All the doctors are aware and act as though all the prescriptions are OK, but it is hard for us.

All we ask is that you keep Jack in your prayers. Pray he gets over this cold and his asthma calms down. He has been having his over heating issues also. We have been trying to keep these episodes down. Keep the scope and MRI appointments in your prayers and pray he is well enough to have them done. We also ask that you pray they go well and we get answers.

Home from Cleveland

2007-08-06T09:35:00.000-07:00

First I want to thank everyone who was praying for us while we were gone. The trip it self went well. We were able to take the boys to the Cleveland Zoo and that was an amazing zoo. We also took them to the science center and that was very enjoyable. Jack had to stay in his stroller a lot and he didn't like that. He did over heat a bit on Sunday and of course had some limping. He was actually the most unsteady and having to be carried a lot on Thursday. Other wise it was nice for us all in that respect.

As for Jacks appointment we have mixed feelings. The nurse did the typical vitals, and the doctor talked with us and used his computer while going over a lot of what has been going on. He made some recommendations and tried to explain things better since the confirmed diagnosis. As for the periods of not walking at all, he said (as he did on the phone) that it is probably nerve related and he has seen this in children similar to Jack. It could also be just muscle related and that his muscles are so weak they latterly give out. Either way he is putting him on medication. There are side effects, but he has used it many times and feels it will be safe. As far as the hip, and low tone issues, and falling he agrees with the Orthopedic surgeon. He said the MRI is the best way to go. As far as the PT part and rehabilitation doctor he said try whatever and see if anything works. He said bracing at night can help with the cramping and muscle pain. Regarding the stomach issues he feels the scope is the best step. He also said to try giving him peanut butter no jelly, before bed. This he said if they find nothing else actually wrong might help. He said if nothing else besides reflux is going on then it has to do with his metabolism due to the disease and the peanut butter might help. He (so did the doctor in Syracuse) said that cornstarch might also help. So we will try these suggestions. Regarding the over heating he suggested a cooling vest. Regarding his eyes he thinks he should go back to the eye doctor. He changed or should I say increased some medication and then added the other. He said regarding the periods of not walking at all if we see no improvement in three months to call him. Other wise come back in 6 months . I need to make sure he gets all the reports of what is going on. He didn't have any even though I have requested he get them. I am starting to request them my self and carry them to appointments. He will call regarding the gene testing they are doing on the muscle. That from April is still not done. We also talked with him regarding genetic counseling and worse case scenarios for our family.

He tried to keep us positive. Some in Syracuse have acted or implied Jack is going to be an orthopedic mess as he gets older. This he said is not necessarily true. Doctors and therapists, the war wages on!
He also said Jack (which I have said before) is considered a milder case because cognitively and developmentally he has not been effected at this time. That is good and he probably in those areas be OK. Muscles and nerves are more his area and yes pretty significant in his case,yet he still is considered a milder case. Fatigue and endurance issues will always be something he deals with.There is no prognosis and each case is different. He tried to be positive and tell us of a few kids like Jack who are older and doing pretty well. One that even plays football. He doesn't have the orthopedic problems like Jack and sounds even milder of a case, but he said Jack as he gets older may get stronger. This child of course cant play like regular kids. He plays 1/4 of a quarter and then skips a quarter before coming in to play. He practises different, and a lot of adapting has been made for him but he plays.
He was trying to help us look at the better then only the worse. It is hard because of this down turn. He also said the down turn could be lasting longer or worse due to the surgery.

We know it could be worse, we just hope and pray it doesn't get worse. Hopefully some of this months testing will help us to help Jack be in less pain. I also hope this new medication helps. We know after talking to him, life will not be like it is for other kids. We already new that, but he brought it home for us. This effects his energy and he will have to make adjustments. He will have to learn to deal with the fatigue and things to do.We just hope orthopedicly he gets better and his tone increases . The doctor said he will be more clumsy and we hope his instability will get better. What is hard as positive as we or he tries to be it doesn't change that there is no cure, no prognosis and know one knows. We have to take each day at a time and deal with each issues if and when it arises. When Jack asks me like he has, "can I play baseball like Noah", what do I say? I just don't know, it doesn't look good. If he does it will not be like everyone else. I have to remember Jack is not like everyone else and deal with that. Jack doesn't understand much, but in the next few years will start to more and more. I pray he deals with it OK. He gets frustrated now and has a hard time. Only God knows. I just want to take the pain away and make his life as normal as positive.

They are making strides with DNA and in the future I pray there is more we can do for Jack. Especially if he gets worse or has other areas effected.

Getting ready to go to Cleveland

2007-07-30T10:38:00.000-07:00

Well this is the week we go for Jacks check up with the specialist in Cleveland. His appointment is Friday and we are leaving on Thursday to go.

Jack is limping a lot again. His stomach is still really being an issues and he is having some weird things with his eyes going on.

I will talk to the Doctor in Cleveland regarding all the stuff that has been going on. I did speak with him on the phone and we took his advice and recommendations. Now we need to update him and go from there. As far as the nerve issues and periods of not walking at all the other doctors are a little Leary and wanting to leave things up to him. We will see, that is all we can do. I hope we get some answers.

It has been very frustrating for us as parents lately. A lot of things regarding his hips and knees that the orthopedic surgeon and rehabilitation doctor have mentioned. They are not sure things and not 100% sure they will help. We find it frustrating because if some of these other doctors would have listened to us and refereed us when Jack was a year old it would be easier to try these treatments. We had spoken about his left side and seeing an orthopedic surgeon around one and had mentioned it repeatedly to a few different doctors.

We have a lot of hard discussions and unknowing coming up. It is putting a huge financial strain as well as mental on us. Please keep us in your prayers and pray we make the best decisions for Jack. We get very frustrated with some of the physicians, especially the physicians who don't know much about this disease.

We are doing all we can and everything is effecting everything. We don't get into detail on this blog to much. We just like to keep people, that want to be informed some what up to date. We don't want to appear like we are whining or not trusting in God. All I can say is it is hard and keep us and especially Jack in your prayers.

With out going into a tone of details, if it is not one thing it is another lately. Jack and this down turn and everything else!

Just keep praying, that is all we can ask for! We know it could always be worse. It just seems like when it rains it pours lately. I am sure many of you can relate.

I will update the blog and let everyone that checks it know about how we made out when we get back!

Appointments, Appointments

2007-07-20T08:37:00.000-07:00

Jack has been doing the same lately. He has been really bad with stomach issues lately. Dry heaving every day or throwing up, complaining of stomach aches also. He wakes up at night with a stomach issues or leg pain. Both problems have been occurring during the day also, especially the stomach issues.

Jack will go on the 13th , to be put under and do the hip MRI. The specialist here is checking with the specialist in Cleveland regarding doing another test. He had said they would probably do it. Then I talked with him a couple days ago and he wants to leave it up to the specialist .He no longer thinks it is the best idea. He said they don't need the test for diagnostic purposes and it would require Jack to be under Anastasia for an extra 45 minutes to an hour. He said kids with mitochondrial disease can have trouble coming out of Anastasia. Jack never has but the longer they are under the better the chances of them having a problem. He will leave it up to the specialist In Cleveland. August 30th he is being put under and having a scope and biopsy done to the stomach. The medication should be helping and it is not. They need to see if the stomach muscles are working correctly and if anything else is going on. July 30th he is going to be fitted for some foot to ankle braces. The rehabilitation specialist is requiring that. They are also wanting his PT to do some taping of his knees in hopes to reduce muscles pain. September 17th he is going to the ENT to have that area followed up on. In the meantime he has a couple other follow up appointments including Cleveland to see the specialist.

Jack is pretty high spirited and full of it. He is quite the little joker. It is hard when he fatigues out or is in pain. He gets frustrated and that is hard to watch also. He hasn't had a good day in many months and that is frustrating for us as his parents. We just have to keep our trust in faith in the Lord.

We have so many wonderful friends and family here for support. With out you all we would have trouble keeping our chin up at times. One of these great friends have started a website for Jack. The web address is http://www.loveforjackmclean.com/ . You can also click on the link on the left of this page to be directed to the web site.

UPDATE

2007-07-11T11:26:00.000-07:00

Jack has been doing about the same lately. Still having a lot of stomach troubles and muscle and leg pain. He is still limping from time to time also.

We went last week to see his specialist here and he said to call the pediatric orthopedic surgeon back due to the limping. He had him walk up and down the hall and could still see it. He also said for us to call his GI doctor because with the medication he should be doing better and we see no improvement. He refereed us to a rehabilitation specialist and rheumatologist.

We went yesterday and saw the rehabilitation Dr and her team. She said she thinks there are several different things going on. One the left side limping is due to the hip and she had the orthopedic surgeons report which says the hip is degenerating. She also said the left side in general is looser and appears worse. She was very concerned with his knees and says she is a 100% sure they dislocate and pop back in at times causing him pain. She said the crying at night or other times saying his legs hurt is muscle and joint pain. He is extremely low toned with a tone of movement in the joints and basically his bones move all different ways they shouldn't. She said for the muscles and joint stuff she wants him to have some ankle braces. She also wants his PT to do some taping of his knees. She wants to see if it cuts down on his pain and wakening at night. I go back in a month and we will go from there. She said the next step would be the medication for the nerve pain as the specialist from Cleveland suggested. She is more dealing with the pain and bouts of crying saying his legs hurt. The not walking at all will be dealt more with by the specialist in Cleveland in August. Medication for the nerves is probably were they will start. Jack may have periods in his life that when he experiences a down turn he has these times of not being able to walk. All we can do is try to prevent them. They usually come with activity . The left side and hip will be dealt with more by the orthopedic surgeon.

They called today and Jack has an appointment August 13 to be put under and have a MRI done of the left side. The orthopedic surgeon wants it done because he is still limping. While he is under his specialist here wants a few other tests and MRI's preformed. We will take Jack to Rochester in October to see a rheumatologist. The rehabilitation Dr and the orthopedic surgeon and the specialist from Cleveland all think a Rheumatologist would be a good idea.

As of now that is were we are at with Jack. August 3rd he has the appointment in Cleveland. Hopefully I will have a lot of these reports available for his specialist.

Jack is definitely having a harder time lately. Tremors more frequently, drooling, chocking, but he acts the same. Happy, playing, singing, joking, he is amazing!

UPDATE

2007-06-18T07:35:00.000-07:00

Jack is still limping on the left side. It is worse depending on activity and how much walking he does. He has had a few really bad nights. He has been crying with leg pain. He asks for his legs to be rubbed and usually falls back to sleep. His reflux has been bothering him more lately also.

I talked with his specialist in Cleveland. He gave a list of things he wanted done. I told the specialist here and he ordered the labs. He refereed us to an orthopedic surgeon for the x-rays and said we would come see him in 2 weeks. We would after having the results from the labs and the ortho appointment done go from there with referrals. He made the prescription changes that the Doctor from Cleveland wanted also.

We went Thursday for Jacks 3 year old check up. His regular pediatrician doesn't deal much with the disease stuff. He said if we need any help with referrals let him know. Jack was due for a shot which he did.

Then we went Friday to the orthopedic surgeon. She talked with us and examined Jack. She had him walk up and down the hall to watch him. She said she has never seen a gate or walking pattern such as his. She was also concerned about the limping. I talked with her about the left side issue and the new limping. I also talked with her about these periods were he cant walk at all and the difference with the episodes. She did x-rays after the exam. The x-rays showed that YES there is something going on with Jacks left side. Jacks hip is not sitting in the socket correctly. His knees and ankles look good. She said the reason his knees look bad when he walks is due to the hip. He doesn't need and she doesn't want to do a surgery at this point. Regarding him complaining of the foot she said maybe there was a hair line fracture or just a sprain. She said regarding the episodes were he cant walk at all that she agrees with the other doctors that it is nerve related. She is going to refer him out to a rehabilitation specialist regarding the nerve problems and not being able to walk at all. She ordered a bunch of labs. He had 10 viales drawn. She said depending on how they came back it wouldn't hurt to refer him to a rheumatologist also. Regarding the hip she is going to see him every 4 month to monitor the hip and legs. We will watch it and he is a definite person who will have hip issues. Surgery we will do when it is totally necessary due to his age. She said if he is not totally done limping in two weeks to call her and she will order a MRI which he will be put under for. She also said that the left side hip issue is definitely due to the mitochondrial disease. She wrote that on the report as the diagnosis and cause of the hip problem. So more appointments coming up. We will see the specialist here in a week and a half. At that time he will do more of the referrals. They are all in agreement that both issues are mitochondrial disease related.

Just pray that Jack starts feeling better. We pray this down turn is temporary and he will bounce back and feel better for a while. We realize that down turns will happen many times in Jacks life. It is hard because him doing better is still having issues. This down turn has been very scary. You cant help but to think of the future and sometimes be upset. We have to just look at Jack and his attitude and it helps us. Jack has a great spirit and attitude no matter how he feels. He inspires many people around him. How can I complain or be down with him so happy. Even limping around he is happy. When he is in pain in crying that is the hardest. He still in the middle of the night, in pain asking for his legs to be rubbed is so sweet." Mommy please rub my legs" he says as the tears run down his face. I rub his legs and with his eyes closed, tears on his cheeks he says in the silence "mommy I love you"! What a little gem he is!

UPDATE

2007-06-11T11:17:00.000-07:00

Since my last update Jack has had three more episodes of not being able to walk at all. I don't always say much on the blog regarding the day to day stuff. Jack has been doing worse in many areas lately. Fatiguing much easier, his endurance level is much lower, more tremors and more instability.

On Friday he had a different episode. He was unable to walk, but it was just one leg or side that was the problem. These other episodes he cant walk at all and if you try to make him stand up he looks like spaghetti legs and both legs go out and he cant walk at all. This on Friday was different. It was a Weight baring issue, like he had injured his left leg. His left side is his weaker side anyway. He was not able to walk and was complaining his foot or big toe hurt. The other episodes of not walking he is usually in tears saying his legs hurt. This was quite different. I put a call into the specialist here and he said to bring him to the pediatrician to check it out. The specialist here also had me put a call into the specialist in Cleveland to try to talk with him. Jack also had pink eye and was not responding to the medication he was given three days before. The pediatrician said it was perplexing and gave him new eye drops for the eyes. He said to put heat on the leg/foot and give him ibuprofen. If he wasn't better in 24 hours bring him to the ER. He wasn't better so we ended up in the ER. They x-rayed his foot and foot only. They did blood work because these kids can get blood and bone infections. They said everything in the blood looked well. They said if the leg/foot wasn't better in 48 hours to return. They did not know what was wrong with the leg/foot. There was no swelling or bruising.

Yesterday afternoon he started walking on it, but he was and is still limping. He is favoring the left leg big time. He is still having some pain and not getting around well. He is definitely on a slower mode with it. We have in the past and now been concerned with the left knee and hip but have been blown off when it comes up.

Finally today the specialist from Cleveland called. I explained the six episodes and what has been going on since Friday. He gave me a list of things he wants done. He wants the specialist here to refer Jack to a pediatric rheumatologist. He wants x-rays done of both hips, knee's, and ankles for comparison. He gave me a long list of blood test. If those blood tests come back normal then he said it was nerve related and gave me the name of a medication he wants Jack on. He wants his carnitine medication upped to 3 x a day. I also have to find out how much Q10 is in his vitamin cocktail. He wants that upped to 3 x a day and the milligrams upped.

He said they have been testing Jack for some other genetic diseases. The muscle has been sent out for testing also. The tests he has gotten back has been negative. He said in there rarer case they see mitochondrial disease is the primary disease. In those cases the kids are more like Jack were cognitively and developmentally they are fine. They are being effected nerve wise and muscle wise. He said these kids have down turns. He thinks that is what Jack is experiencing. Down turns can last 3, 6, 12 months and then all at once they start to improve. This could happen many times in Jack s life. He said this is what he would assume is happening. He said we just hope he comes out of it, and nothing else is going on . He said they usually do, but these periods may recur at any time.

We go in August to see him and at that time we will have the x-rays and other tests and hopefully have seen the rheumatologist. He will evaluate everything then and hopefully he will have more tests back. He also said we will talk at that time about other testing and things to do for Jack. He still would like some tests we talked about done , but due to cost and my insurance we haven't been able to do them.

The specialist here in Syracuse office is closed on Monday. I will call and talk with him tomorrow and hopefully get everything going. He will hopefully push to get things moving to make sure this is just a down turn and mitochondrial related and not something else. You never know and that is what is hard. We could go back to the ER to have all these things done, but at this time I prefer to go this route. I think it is best. I don't want to put Jack in the hospital if not absolutely necessary.

We will just wait and see how he does, if he gets worse and starts not walking at all the ER might be the only choice. He is walking right now , not well and is limping but we will see.

There is no cure and no prognosis so they just done know. That is exactly what the specialist from Cleveland said. They go by other cases they have seen and by what we are going through. It is a learning experience for everyone. Thank God the specialist we are seeing, he is the best of the best in the US! I thank God for that.

It is hard to not think negative or about wheel chairs for periods of time in the future. I am trying not to think like that. God holds the future and holds us all in his hands. Me stewing and thinking about things doesn't help anyone. It Especially doesn't help Jack. He needs me, all of me to be happy and optimistic.

Please keep Jack in your prayers. Pray we get answers if something else is going on. We also pray if this is just one of many down turns in Jack's life he gets through it with out much pain or frustration.

Update

2007-05-29T09:39:00.000-07:00

Jack's birthday party went very well. We thank all of you who came and gave gifts so generously. He had a great time! It was very exciting for him.

He has been not doing very well muscle wise lately. Since Saturday he has had 3 episodes of collapsing and not being able to walk at all. If you pick him up and set him on his feet he goes right down. He is complaining of leg pain and his feet hurting during the day as well as waking up at night. This has been becoming more frequent the last month or so. It is hard he goes and goes, but then crashes. Yesterday he couldn't walk at all and had to rest for awhile before he was able to walk. When he is walking and he is not doing well his legs cave in and he has been falling. His walking is unsteady at best and when he is like that he has points were a leg or legs give out. It is very hard, and very bothersome. The doctor is calling me soon regarding there meeting he is having with his colleagues. At that time I want to know what tests they are recommending and what other diseases and disorders they have or are checking for. We go back to Cleveland for a follow up appointment on August 3, 2007. These muscle issues go with the mitochondrial in some ways, yet don't in others. It is getting very scary when he cant walk at all. His Physical therapist is noticing things as well. People who don't see him every day or for any lank of time think he is doing well. She sees him and says his endurance level is worse then last summer, and is noticing the muscles things as well. She has been dealing with kids for 20 years in this area and has concerns. Something is just not settling right with me. This is how much of Jack 's life will probably be. We don't know for sure what is going on and can only hope for the best and more answers. I thank God we are were we are. I started video taping Jack so I can show the physicians exactly what is going on. When they see him after a car ride or on a semi good day , they don't get to see everything. There is no cure or prognosis, but if they are searching for something else primary this may help.

He starts with all his new prescriptions tomorrow so we will see how that goes. His CPSE meeting went well and we are looking to get him into a program for the fall. I have lots of concerns and what ifs going through my head. We as his parents can only take everything one day at a time.

Just keep Jack in your prayers. Pray we can get more answers to possibly help Jack more.

Update

2007-05-23T06:24:00.001-07:00

Jack had his appointment yesterday with his specialist here in Syracuse. We have not seen him since before Jacks surgery. He explained some more to us and answered some questions regarding the preliminary results. He is putting Jack on a vitamin cocktail to help in maintenance and prevention. He said some kids see results some do not. He said it would take 4 to 5 months before we would notice anything. He said if anything it is to help these kids when they crash or get sick. It helps boost there system so hopefully a illness or crash doesn't end up with hospitalization or turning into something worse quickly. We will see how he does. It will take a few days for the prescription to be ready. We could either get like 7 separate prescriptions that would be given 3 x a day, or combine them into one. He said either way it would be a fight he said they taste terrible. We went for the combining. There is only one pharmacy inside of university that does this. He isn't sure if my insurance will cover it we will see. If they don't we will deal with it. Jack needs it so we will see.

He also talked to us a lot about important care for Jack. Some we new some we didn't. He explained the seriousness over these kids with over heating. He also talked about his daily care, fatigue, crashing, sickness. He talked about prevention and seriousness of sickness and what we would do. He said Jack right now is looking good. He said to deal with things day to day and when problems arise. Respiratory, and stomach issues, and muscle pain is what we are dealing with now. He is seeing the necessary physicians and doing testing for those areas.

The doctor also explained the Complex 2 and 3 being uncommon and tried to explain the mitochondria again and the process. He also tried to explain how Jack's fat with in the mitochondrial is not processing correctly and how that works. All very complex and bottom line, there is no cure and prognosis. We are waiting for the specialist in Cleveland to meet with his colleagues at the end of this month regarding Jack. He said we will wait to see what testing they suggest to be done. He said we will then try to fight the insurance again, and he can write a letter. If they still will not pay we will see what we can do if anything. Hopefully the tests recommended will be able to be done in Syracuse. We will go back to formally see him in 4 months. He will call me regarding what steps are recommended next and we will do them. He did order some blood work and we will go from there.

My feeling was it was a good visit. It Made me even more aware about prevention of illness and injury for Jack. It made us realize the seriousness of caretakers with Jack and needing to educate them. It is frustrating because we cant just do something definite to make Jack better. I am very thankful for how well he is doing. I cant think about the future and what could happen, how bad he could get, how young he could die. I have to take each day as it comes and thank God he is doing as well as he is. He is a walking testimony already. I believe in faith he will live a long life and beat this and have such the testimony.

We are rejoicing that God blessed us with Jack. His spirit sick or not is wonderful. His personality and sense of humour amazing. His energy level amazing considering his condition. He is a inspiration to his family! Complain not, it could always be worse! Take life as it comes and cherish it and the many blessings. Be a light and a walking testimony for the Lord every day. Your reward will be great some day.

Jack is turning 3 tomorrow and we are rejoicing in his birth. We are having a big party for him Saturday due to his rough year. We look forward to making the next 3 days exciting and all about him. We will be thanking the Lord for him, all of him and I wouldn't change him for anything. Heal him, take the pain away yes, but never change his spirit. It is a precious, priceless, spirit!

UPDATE 5/16

2007-05-16T12:09:00.000-07:00

Jack is doing OK lately. He had an appointment today with a pediatric GI doctor. Children with mitochondrial disease can have many stomach issues including reflux. This I knew, but he said that also. Anyway he thinks the choking and throwing up, stomach aches, ect.. could be from reflux. He told me to keep him on the previcid since he hasn't been on it long. Next Friday he has to go for a barium swallow. Then we will see the doctor again in the beginning of August. He said depending on what he sees on the swallow and if I see a improvement with the previcid we will go to the next step. The next step would be for him to put him under and do a scope and while he is in there do a biopsy. He thinks we will end up going that route, unless I see a huge change due to the medication.

I got the break down bill today from the Cleveland Clinic from his surgery. The bill was much more then I expected. Thank God my insurance paid for more then I thought they would. We are still stuck with a very large bill.
I got a answer back from the insurance regarding the 4000.00 dollar test that I appealed. They still are saying No to paying. There are a few more things the specialist wants done and genetic testing we would like done on us and especially Jacks brother. We are talking alot of money in tests that we would like done and some they see totally necessary and the next step for Jack. People would be amazed if I said how much the surgery and testing of the muscle bill came too. Way more then ever expected!

Please pray that God makes away financially for us to get these test done . Pray also that he gives us a way to pay these medical bills. We are also praying this week that Friday Jack's CPSE evaluation goes well. His only therapist actually showing up is his wonderful PT and his case worker. We are hoping we don't have to fight regarding services. It has been recommended by an outside agency that Jack get teacher services 5 times a week in a integrated setting. They are also recommending 2 times a week, PT, OT, and Speech services. Just pray the meeting goes well and we don't have any problems.

We just have to keep pressing forward and giving the glory to the Lord. It is very hard sometimes. We don't know how, but we know God will make away for everything!

NEWS ON THE BIOPSY

2007-04-30T12:15:00.000-07:00

I got a phone call today from the specialist in Cleveland. He got back some preliminary results regarding Jacks muscle biopsy.

It is all very complex but I will break it down the simplest way I can. They found three major abnormalities. One Jack has more mitochondria then he should. They appear to be normal but he has more then he should. Complex 2 and 3 our not working correctly ( inside the cell). There is a problem in the forming in complex 2 and 3. This is were genes are involved. The fat component is not being processed how it should.

What that means is Jack has confirmed mitochondrial disease. Unhealthy complex 2 and 3. He said that it is more uncommon. He is sending the muscle out for more specific gene testing. He is meeting with his colleagues at the end of the month regarding Jack. He will get back to me with more test recommendations at that time. He still wants him to have the gene test that my insurance doesn't cover. It is still the same in that there is no cure and no prognosis. He is contacting Jack's specialist here to discuss medication. What this confirmation does is allow for more genetic testing. It also allows for more things to watch for and more treatment possibilities. We would want to pursue more genetic testing now in hopes of pin pointing gene issues. Plus he said at this point he cant rule out another genetic disease primary which could be causing the abnormalities and the confirmed mitochondrial disease could still be secondary. We can be on a better road now to finding that out. Either Mac and I our both carriers of the disease or just me or just him. This is something we might never know, but the more we know the more we can find out. We would like to know as much as possible for our other son also. He could be a carrier he could also not carry the gene at all. It could mean others, cousins, uncles, ect.. could be carrying in there line and not be aware.

I am glad we got results. What a answer to our prayers.Some would be upset to know for sure there is a issue with there child.. Deep down I always new and this gives me hope. Hope to be on a road to confirming or denying another disease as primary, and Knowing better what we are dealing with. What is hard is there at this time is no cure, no prognosis. What I hear is he will get worse with age most likely not better. It is frustrating because mitochondrial disease is so complex and fairly newer in the medical community. Things are changing every day. What is even said through the MDF is always changing. I thank God Jacks Doctor (one of only two specialists in the US) is the main one for all the research and papers you read. We have someone wonderful and knowledgeable on our team. We believe in faith Jack is going to have a great testimony someday. The cards are stacked against him, but he is going to win the fight and give the glory to the Lord above.

Update 4/15

2007-04-15T08:44:00.000-07:00

Today Jack walked for the first time. He was standing on it yesterday, but said it hurt. Today he is walking on it. He is favoring the leg and walking a bit funny but is doing well. He shows discomfort when you pull his paints down or up. He doesn't want anyone to touch it. If you carry him it hurts him also. The doctor said no rough housing or major activity for 2 to 4 weeks. I think that is going to be difficult. The doctor said that is how many times the incision gets riped open.
Noah is still sick. The fever seems to go down and he feels a bit better, but then spikes. It was 103 in the middle of the night. He was throwing up and having diarrhea yesterday but hasn't today. Hopefully he is on the mend.

Thanks to all of you who emailed or called. It helps to know people care and they are praying and thinking of the boys. It makes all this easier to have support.
We now just pray we get answers from this test and that both boys start getting back to normal.

I also wanted people to know if you click on the link for Charity for Children(the link is on the left side of the blog page) you can see Jack's story. There is a place over on the right side of the page of the Charity for Children website, titled Jacks story. If you click on it it tells you how Charity for Children helped us and a picture of Jack. The letter I wrote starts out telling a little about Jack and what we have been through. I would like to say again that this is such a worthy Charity to donate to. If you find it in your heart to donate you can make the donation in Jack's name. I also encourage anyone who wants to know more about mitochondrial disease to check out the link on the left of Jacks blog page for the united mitochondrial disease foundation.

Back from Cleveland

2007-04-13T09:30:00.000-07:00

We are back from Cleveland! The hotel was excellent and things went smooth. The people were helpful and the trip as far as traveling went pretty well. The way down Noah was sick in the car and threw up twice. He was sick and seemed to get worse not better during the trip. Jack did well with the trip and the surgery went well. The ride home was OK. They both were not feeling well. Jack had a stomach ache and Noah a high fever. Last night Jack was in some pain and had a hard time with sleeping. He is a restless sleeper and all the moving made him cry in pain. Noah was throwing up and running a fever and coughing a lot.

Today Jack is doing OK. He cant walk and is having some pain , but as long as you don't touch the area or move him, he is in good spirits. We took Noah back to the doctor because today should have been the start of day 7 with the flu and he seems to be regressing. They said the flu had moved into definite bronchitis possible pneumonia. He just went for a chest x-ray we should know something soon. Either way they put him on medication so hopefully he will start to get better. We are just trying to take care of both of them. The sickness has made its way around. I have bronchitis and my mother is ill also. We hopefully all will be on the mend soon.

Thanks to everyone who is and was praying. Besides the sickness, the trip was smooth and I really saw Gods hand upon the whole trip. Keep praying for Jack and Noah to get well. The biggest prayer need from there will be that in a few weeks we get answers from the procedure. We believe in faith we will.

Prayer / Update

2007-04-07T10:13:00.000-07:00

We took Jack's brother to the doctors this morning. He was still very ill. He tested positive for the flu. Even though Jack has had a flu shot they were still concerned. They prescribed a medication in hopes of preventing Jack from getting the flu. The issue is he was taken off all meds due to the biopsy. They wrote me a script and told me to call the Cleveland Clinic and speak to the surgeon. (mind you it is Saturday) To make a long story short I finally got a answer. They said there is a chance with the medication for the flu that it could cause the muscle to be inflamed and mess up the biopsy. The chance of that is on the low end , but could happen. If Jack gets the flu the hole procedure is off. They feel we should give him the medication in hopes of it preventing him from getting sick and go through with the biopsy. That is what we are doing. Jack did have a flu shot, but that doesn't mean he cant get the flu. The doctors did tell me he needed a flu shot. They never told me that every member in the house should also. I thought as long as he had one that would be fine. They told me today all of us should have one (especially Jacks brother) so we don't spread the flu if we were to get it,to Jack. I feel a bit as it was my fault. I should have known, I have been so on top of things. Why didnt I think of that?

Anyway- All we can think is to pray. PLEASE pray that one, Jack doesn't get the flu. He is just starting the meds today and has already been exposed. We are keeping him away from his brother but who knows. PLEASE also pray that the medication doesn't inflame the muscle and mess up the biopsy. PLEASE pray we get answers from the biopsy and that we don't have to do it again. PLEASE keep Noah (Jack's brother) in your prayers also. We pray the rest of us don't get it and we end up in Cleveland well and on time with know issues or problems.

All we can do is pray and turn to others for there prayers and support. We believe in faith God is in total control and we will have quite the testimony someday.

Cleveland Trip

2007-04-06T18:31:00.000-07:00

Well we just got a phone call today in the later morning,from the Cleveland Clinic telling us that the surgeon scheduled to do Jacks surgery will have to reschedule. You can assume that didn't go over to well. They are moving it up to this week. We will be leaving for Cleveland on the 10th and the plan is we will return on the 12th late. That is if all goes well. Jacks pre testing is on the 11th and the actual surgery is scheduled for the 12th. It was a lot of phone calls and moving things around but it looks like it is all working out. It is a rough weekend to have to get ready to go but we are sure it will work out.

Jack is doing OK this week. He has had some sleeping problems and tremors a bit more then normal, but he is OK.

Please keep Jack in your prayers regarding the surgery, and the outcome. We are praying we get answers and that he doesn't go through this for nothing. There is a 10% chance that could happen. We are believing in faith we will get answers. A big concern and need for prayer is that Jack doesn't get ill before the surgery. Jacks brother has taken ill this evening with a fever and cold symptoms. Please pray jack stays well and doesn't catch what his brother has.

I will update everyone when we get back regarding how Jack made out. I hope in a month or so I can report that we got some answers from all of this. Please keep us all in your prayers. Thank you for your continued support.

Update 3/23/07

2007-03-23T10:07:00.000-07:00

Jack is sick with a cold once again. His sleeping for whatever of the many reasons has been poor. His spirit as always is high!

We went last week for the swallow study. At least that is what it was suppose to be. They ended up only evaluating him. He didn't even see a doctor. They watched him eat and then the therapist went and talked with the doctor. Then she came back and said when he is having a really bad day because it was a average day, call and they would fit him in and do the actual study. What a waist of time! Yes it is so easy to call and just get fitted in. I do work ,from home or not I work. My husband has to sleep once in a while, but whatever. Bottom line he appeared OK so they were busy and were not going to take the time to do the actual study.

We went to the pulmonary doctor yesterday and that was a much better visit. He couldn't believe they didn't do the swallow study. He said who cares if they actually saw him choking or aspirating, during the test there is so much they could see. Anyway he saw enough on his own. He said Jacks throat is burned. Not red due to a cold, not a strep looking throat, but burned. The doctor was probably in his early 60's and said it is a burned throat very different from the other types. He cant believe none of these other physicians haven't picked up on it. He suspect a severe case of reflux since birth. It is different then a adult in that the symptoms can be very different. It can cause choking, gaging, upset stomach, sleeping problems, prolonged sickness leading to pneumonia and bronchitis. This could be due to the stomach muscles not working correctly due to the mitochondrial disease. It can also be hereditary and Jacks brother is having issues and his father has massive esophageal reflux. Jacks father was told his type can lead to esophagus cancer.

The pulmonary doctor is starting Jack on meds for reflux. He is referring him for testing to a pediatric gastro doctor. We will go back to see him in 2 months and see more about the respiratory problems and asthma. He wants to see if any of the issues clear up or get better once the reflux is treated. He does think he has asthma but due to the reflux, he isn't sure of the degree. So I can use his nebulizer as needed.

Jack is having a good attitude. It is ours that gets negative at times. I feel bad he has to go through these things. Just keep praying for him and his upcoming surgery in April. Thanks to all of you that keep our family in your prayers.

This week 3/5/07

2007-03-06T09:36:00.000-08:00

Jack is having a OK week so far. He is finally over his last cold, and seems to be feeling better. The tremors today were more frequent. He did have PT and Speech this morning which tires him easily. When fatigued he tremors more so I am praying that is all it is.

He finally finished up with the evaluators for his services with the school district. He has to change at three from early intervention to the school district. All the change has to do with is funding and who is responsible to pay. (besides our insurance) Unfortunately his service providers change, but we have his current ones till August.

The evaluations were very frustrating. The night the PT evaluator came he was having a fairly good night. The day for the speech he wouldn't cooperate due to just having speech and PT that morning and being fatigued. The OT evaluation went well. She was the most knowledgeable and caring. The school teacher, and sociologist were helpful also. They understood about his disease the best. He doesn't qualify for teacher because cognitively and developmentally he is average to above. She did say how ever she would say in her report that he would benefit from a program due to his safety, and poor self help skills. His self help skills are poor due to his muscle problems. Now they get all there reports together and we will meet probably April or May (it must happen before his third birthday) for the CPSI meeting. All of his current therapists will go. That will hopefully help in explaining Jacks good days and bad days. I want them to understand his disease, I am bringing Doctor reports along with information about his disease.

We plan on sending Jack to pre school in the fall regardless. We are hoping he qualifies for a program based pre school.
He will qualify for services, we will see about program. What that means is his services in the home will definitely continue. We would put him in preschool our selves like two days a week. What we are hoping for is program. What that means is he will go to a program based preschool which has a nurse on hand, all teachers have a masters in special education , and he would see a speech therapist, occupational therapist, and physical therapist during preschool hours. He would get his services right at school and there is much better equipment that is available. We are concerned sending him to just any preschool due to SAFETY, and he has poor self help skills. He fatigues easily and are not sure how he will due. So many things act up when he is fatigued. So having a nurse on hand and teachers who will understand his condition sounds great. These are regular preschool that anyone can send there child too. They have a 10 to 5 ratio. 10 "average" children, to 5 with some type of" special needs". Jack could benefit in so many ways by receiving program. Our fears with program our how much can he take. It would be 4 to 5 half days a week. We had only planned on putting him in preschool 2 days a week. We will see I will not know until the meeting. If he gets denied program (which his therapist thinks he will not) then I will put him in one of these program based preschools anyway a few days a week, and then he will get his therapy's at home. For his safety a preschool that has program is better. So we are just praying we get the program. I am a little apprehensive, but I have to try not to worry and do what is best for Jack. It is so hard to always know what is best for him due to his disease and the in consistences we see and deal with . I just pray God helps us in making all decisions with Jack. If program is the best way to go we hope he gets it.

A helpful foundation

2007-02-28T10:51:00.000-08:00

As some of you might know or be able to guess, financially taking care of Jack can get hard. It has been tough even with insurance.The co pays, prescriptions, travel cost ect.. can be a lot. We have found it very frustrating because any were we have gone for help it seems we don't qualify or make to much . I have found out that unless you are at poverty level there is not much help for you. For the average Joe in this situation good luck.

Well a few months back Jacks grandma cut a article out from our local paper. She gave it to me regarding a local charity. That charity is called Charity For Children. They are different because they help the average Joe. They also help with the expenses other organizations might not. They help with car repairs, travel expenses, ect.. They are a fairly new organization only around for three years.

About a week ago I submitted a application, and a letter about our situation. I received a call yesterday that was a true blessing from the Lord. This lovely women called me and said she had received our information. I shared a little about Jack and the situation ( I already had in the letter) and encouraged her to check out his blog and his story. The great blessing is that this charity is going to pay for our hotel room the two nights we are in Cleveland. They are also (if i submit my recites) going to reimburse us gas when we return. What a blessing from above. This organization is wonderful and I would encourage all that read this to check out there link. If you are a person who likes to donate to a charity, this would be a great one. I plan on helping and taking part in any fundraising they might have. I told this women to send or call me with information regarding upcoming events. I plan to share them on Jack's blog.

So many charity's are large and yes they need donations, but this charity is new starting out and helping the middle class who cant find help else were. This is a charity to put money into!

Still Answered Prayer

2007-02-26T09:29:00.000-08:00

Well I just got a call from the office for the swallow study. The doctor had a death in the family and they have to reschedule. He will be out for two weeks. So they cant see Jack till 3/13 which is the same day as the pulmonary. So we will have to reschedule that also . His specialist here wants the swallow study done before the pulmonary appointment. So it is still answered prayer but it is longer we have to wait. What can you do? I asked if there was another doctor, but there is only one. This is one of the only offices in Syracuse that does the study on young children. So we will have to wait. We are getting use to waiting.

I guess pray for the doctor and his family is all we can do.

Answered Prayers

2007-02-24T12:05:00.000-08:00

Well Jack this week is doing a little better. His cold seems to be going and he seems to be feeling better in that respect. He has had a few bad days this week. Yesterday he had quite a few tremors. I think it was due to fatigue.

Well we are thanking God for some answered prayers this week. Jack FINALLY got an appointment for a swallow study. It is this Wednesday in the morning. He also has his pulmonary appointment scheduled for 3/13. So we are happy about that.

Please pray that Jack will get some answers from the swallow study. His specialist says if Jack is having a good day they might not see anything in the swallow study. Even if he is aspirating at times. This can be very frustrating for us. Jack is being impacted muscle wise, big time. It is hard because if it isn't acting up during a test ,for example during the swallow study, he might appear normal.
Please keep praying about the appeal I sent to the insurance company regarding the blood test. I have not heard anything from them.
A big prayer request is that in April when we go for the muscle biopsy we get answers from the test and that we don't put Jack through this for nothing.

We thank everyone so much for there prayers. Keep reading the blogs and scrolling down to make sure you haven't missed any. If anything you will see answered prayer and see how God responds to the prayers of his people.

Jack's appointment and referral update

2007-02-18T10:40:00.000-08:00

Well we went on Friday to see the specialist here in Syracuse. It was a very good appointment and I actually got somewhere. The specialist ( he is amazing) personally got on the phone with the place for the swallow study and talked to someone there. He told them he needed to have Jack seen ASAP and told them of his condition. They already had records from his pediatrician, but with out the specialist records were not aware of the complete history. So we should have a appointment this week coming up. He also is referring us to a pulmonary doctor at the end of the month following the swallow study. Due to Jack's respiratory problems and asthma I requested this. He agreed with the idea and said the choking (if he is aspirating) could cause some of the respiratory problems. So the two appointments are related. We will see him after the muscle biopsy to discuss more treatments. He will discuss the medications with the specialist from Cleveland after the biopsy. After that Jack will just be maintained by the two specialist and we will deal with problems if and when they arise. He will continue his therapies and medication treatments are all at this time. The specialist would still like that Mitochondrial DNA screen done. I appealed the fact that the insurance will not pay and I am waiting to hear back. Worse case I guess we try to save up the money to get it done. Other then that, I guess that is all we can do.

When I got home from the appointment I had a message from the nurse from Cleveland. Jack's Muscle biopsy is April, 19th at 7am. We have to go in the morning of the 18th for preoperation testing. So we will leave for Cleveland on April 17th around noon. If all goes well we will travel home on the 19th. I talked with a mother of a child who had a muscle biopsy done. She said her daughter was so drugged she slept the hole way home. It was the next day that she was in a lot of pain. They cant walk for a few days either. She did say by day four you would have never known she had it done , so they bounce back fast.

Jack today still has a cold. He is getting better. He has had diarrhea lately, but other then that he is ok. Please pray we get a answer from the muscle biopsy. There is a 10% chance we could put him through all this for nothing. It is the best chance and testing that we have to find out information. If we could find out the exact type of Mitochondrial disease from the Muscle biopsy that would be awesome! Please pray we get some answers and Jack does well.

It is very frustrating to see how other medical professionals see Jack. On a good day if you didn't know Jack was sick you would never guess that he is. On a bad day you might think he had a muscle disease or CP. His physical therapist (who I love) can test him or give him a request on a good day and he can do it know problem. She can on a bad day give the same request and he not be able to do the request at all. It is very frustrating but common according to the specialist from Cleveland. It is hard to see him have bad tremors, or see him falling all over. The crying in pain at night, the coughing and wheezing. I must say through it all his spirit is high. He is so amazing! He inspires me even at 2 am when I think I cant take anymore. He has the joy of the Lord! He presses on and he fights. Nothing will keep him down!

This week 2/12/07

2007-02-13T10:00:00.000-08:00

Jack is having a hard week. He is sick again which is common for him. It is turning respiratory as it normally does with him. He hasn't slept to well and is very fatigued. When fatigued he can be a accident waiting to happen. His choking has increased due to this fatigue. He has had pretty bad tremors today also.

We are still waiting for a referral for a swallow study. We seem to be waiting on doctors for a lot of things. We should be hearing anytime regarding when he goes for the muscle biopsy. They estimated sometime in March. We also go next Friday to see his specialist in Syracuse. I need to discuss many things with him since I haven't seen him since the Cleveland trip and seeing the specialist for the mitochondrial disease. I also need him to give me a report stating about Jacks diagnosis. I need it to fight for program regarding Jacks, Speech, OT, and PT, services with the school district. Jack has to change over to them at three .

Please pray we get program for Jack. Also pray we hear soon about these referrals. I also appealed the insurance since they will not pay for the blood test that the specialist wants. So pray I hear something soon and it is good.

Jack's story up to today

2007-01-31T10:42:00.000-08:00

Well were should we start? I guess in the very beginning.

Jack was born in May of 2004. He was full term, actually overdue. The labor was normal and quick. Jack was released with in 24 hours of birth. They were having trouble with his O2 levels, but they just said to go to my doctor with him the next day.

I felt from the beginning something was not completely right. Jacks sleeping was horrible from the start. He had chocking issues, eyes wondering, and muscle signs right away. Jack was hospitalized for an unexplained episode as the Er doctors called it. He choked, stopped breathing and turned blue for about 30 seconds at 6 weeks. He also in his first year of life had pneumonia twice. It seems he was sick with a cold all the time and couldn't get rid of it. He has had bronchitis several times also. The doctors say he has asthma and possibly allergies. He has had poor weight gain all along. He gains and then might loose weight, then gain a bit again. He is in the 10% for his weight and height at this time. He is considered "failure to strive". I hate that terminology. When sleeping he has long pauses between breaths at times.

He crawled, walked, spoke way later then the norm. He didn't walk until 22 months and speaks a lot but is not understood that well. I changed doctors after his first birthday due to being told "he is fine, some kids are just slower at things". A mother knows, always follow your instinct. So I changed doctor and demanded he be refereed out to be evaluated. I felt the muscle tone was extremely low, and he was to behind. Sick all the time, choking, sleeping issues, the list goes on. So he qualified at that time for Physical Therapy. Jack at the beginning and now has good days and bad. His sleeping has gotten worse lately. He wakes up in pain with muscle cramping. We have found out from the specialist this is common and some tips to help him. When he walks he appears if drunk- wobbly and falling. With fatigue or sickness he falls more and is a accident waiting to happen. Later he qualified and is receiving Speech and Occupational Therapy also. Cognitively and developmentally Jack is a head of himself. This in itself causes him much frustration. He is smart and his body doesn't cooperate or people do not understand him.

His new doctor said he thought he was ok also. He said some kids just need extra help. Jack has and was experiencing tremors, eyes shakiness, and other things that just didn't settle with us. To make a extremely long story shorter, it was his physical therapist who finally got me a referral to a Neurologist. She was suspecting a mild case of C.P. He checked out fine neurologically, but his blood work didn't come back normal. The Neurologist also said he had extreme low muscle tone and saw him have tremors. He thought much was muscle related. His Carnitine levels were more then 50% lower then were they should be and some other blood work was not normal, so he refereed him to a Metabolic Specialist. That is where, based on his symptoms, blood results and urine results, he got a preliminary diagnosis of Mitochondrial Disease. There are only two specialist for this disease in the US. This is a rare genetic disease. Jack is rare because he appears to be a milder case at this time. Normally these pregnancy can result in miscarriage and when carried full term these baby's are usually more severe.

We went in January to see the specialist. He is at the Cleveland Clinic and is a Neurologist and Geneticist that specializes in Mitochondrial Disease. This is where we got more answers. Jack at this time is on a waiting list for a muscle biopsy. Jack's diagnosis is Mitochondrial Disease and that will not change, but they want to see if it is the primary disease or if it is secondary to another genetic disease. With Mitochondrial Disease they are seeing cases where it is secondary to something else. We want to rule that out if possible. He also has a genetic test that has only been out 4 months and that is a very good test to get done. The test is $3,700.00 and our insurance will not cover it at this time, so we are going to work on making that test possible.

There is no prognosis or cure for what Jack has. There are treatment options, but the more we find out about his disease, the more treatment options we will have. Each case is different and Jack could get worse or better with age. Mitochondrial Disease can effect any main organs so we have to keep checking on them. We are working on getting these tests done and making arrangements to afford the costs of the trips. Jack is receiving Physical, Speech and Occupational Therapies at this time. The Doctors have taken him off all meds so nothing is masked when they do the muscle biopsy. Jack is also waiting to be refereed out for a swallow test at this time due to the increased chocking, at times choking on his own spit.

If you want to know more or some web addresses so you can learn more or understand more about this genetic disease please feel free to email. We still are learning more every day.

Jack is happy and does well. We thank God for that and the blessing of him in our lives. People can't believe he is ill when they see him, unless they know his condition. We believe he is going to beat this and not get worse as we have heard most commonly happens. We believe he will be a walking testimony some day. Life is not easy for Jack but he and us take it one day at a time.

Friends and family

2007-01-31T08:38:00.000-08:00

We would like to use this blog for our Friends and family to keep them updated and to give information about Jack or his disease. We have had many family members who ask questions and are asking questions about us, our situation, how Jack is doing, and about the disease in general. We felt this would be a good way to keep people who want to be informed or check in up to date. You can always feel free to email us. Also if someone who is just looking through blogs See's this and is interested in learning about mitochondrial disorders and diseases please feel free to contact us.

Mother with a child with mitochondrial disease

2007-01-30T11:17:00.000-08:00

My son has been diagnosed with mitochondrial disease. This has been a long road to get a diagnosis since not very common in the medical community. I would like to get the word out as much as possible about our story and the lack of knowledge available to help people in our situation.