Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.