Jackon Is Recouperating

Hello Everyone,

Both today and yesterday, Jackson has not had any pain. His headaches have gone away, and he is getting back to his normal spunky self. He has been getting tired very easily, so we rest alot still. Yesterday, he went to the playroom in the morning and again in the evening with a nap and resting in between. Today he had an even busier morning. He went to the playroom in the morning, followed by a PT consult by his favorite PT Jaclyn. He also was observed by his old speech therapist, Jill, who he never liked to interact with. After that, when we got back to our room, the neurology team came by to visit and watch him walk. He was worn out after all of that. He took a great nap both days and today when he woke up, we played bingo from the room. They do bingo every Thursday here for all of the kids and they have some awesome prizes. Jackson has gotten Nerf guns, Lego's, remote controlled cars, and today he wanted a Play dough set. This evening we have been watching movies and hangin' out.

Back to the PT consult. I wanted to have Jackson evaluated and have some reports in my hand so that I have recommendations for therapy when I file an IEP for Jackson. Some of you may know what an IEP is and some may not. It is an individualized education plan. When I request an IEP, I am asking Jackson to be evaluated for any special needs services that may help him in his educational process. He qualifies for one just because of his neurological deficits. Once we get the ball rolling, he will be evaluated for therapies such as speech and occupational. They will also evaluate him for cognitive deficits and delays, which he has a high chance of having due to the high dose radiation therapy he received. I figure the more reports and recommendations I have for him, the more opportunities he will have through the district. I want him to feel comfortable and safe at school as well as have him being challenged by academics, but not overwhelmed. I want him to gain confidence and for him to succeed at whatever level is best for him. He already doesn't want to go back to school, so him transitioning back next week is probably going to be rough. His old speech therapist gave me some insight as to why he doesn't like being at school right now having to do with communication and it makes sense. Slowly but surely, I believe we are starting to see the affects of the radiation. They can manifest over the next five years. I want to stay on top of his education.

So the plan is to go home tomorrow. They want to do a full body xray because Jackson's blood counts are low. They said that him just fighting a virus can do that to him. When he had a fever, his white counts were elevated. The xray will just check for some "lesions" in the bone marrow. I understand the lesions may be infection related. I think they just want to rule something else out. Please pray for a clear xray tomorrow so we can go home and get back to life again. I am so sick of this hospital and having Jackson sick and stuck here. I just want him to have his health back. Lord knows he has been through enough!

Jenise