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.