Update

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

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

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

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

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

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