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.