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.