Doctor update

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

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

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

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

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.

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.

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

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

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.