We still wonder…

about the ammonia in his system.

So I have been staying away not because I didn’t want to write, but I have been busy as well as everyone in our house was sick with the nasty cough & cold, including Lennon. We did an overnighter at the hospital just to make sure that he wasn’t developing anything else as he had been complaining about his belly hurting ..on the right side. Yes, you guessed it they were worried about his appendix that apparently was not removed when he received his liver. Sigh

Now with lots of fluid he has overcome the cold fairly well. We are down to doc visits once a month…school has started for him…about 30 minutes minimum everyday until he can tolerate one hour. In addition he will receive OT, PT, Speech and Vision Services…at home
The next step is or rather the plan is to conduct an evaluation to see where he is developmentally, not just because I want to know but because this will help taylor his needs more.

I bet you are wondering about the title of this post …let me tell you that yesterday I have seen the Lennon I know pre-transplant. His nurse took him into town to take care of some things, and according to her he was very hyper, not listening, unable to stop himself, knocking things of the shelf etc. When came home, he was hanging from the freezer door, disappearing into the front or the backyard and just go go go .. his behavior was very much like when the ammonia was the main cause of his behavior…

I don’t think his ammonia is up, but we are planning a trip into town tomorrow to check his bleeding level and we might throw an ammonia in as well …I am wondering however that perhaps yesterday was the first day in a really long time that he maybe has felt really good? I don’t know that I can say how he feels and when he feels good or awesome. I can tell you when he’s okay or not so well, but knowing when he feels absolutely good…not I
So I don’t know if yesterday was a fluke, or perhaps it was Lennon the way he is when he feels good. I was told that if he’s like that…that I am a strong woman…well he was like that for a really long time..uncontrollable, violent, unable to stop, not able to think and acknowledge the risks ..this is how I know Lennon .. perhaps Lennon just took an extensive vacation after the transplant..I don’t know ..his behavior will always be a challenge I think.. and some of it can or rather could be controlled with medication…other parts not so much

Overall I must say though he is well..his favorite thing to do right now is play the playstation (all day long). Now we are going to get into a routine and schedule where he will be limited and he has to learn the rules again. We have allowed Lennon to relax…take it easy …kind of baby him …cater to him and so forth .. however now that he appears to be home more consecutively he too must learn the rules ..a poster board with times and schedules is going up..little pictures with magnets are being created so that he can visualize everyday and we can change it as necessary.

Sorry for the long break since posts… I have been busy since quitting my job with Lennon, school and other things at home (my business and my book and three other kids )

Hugs

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One thought on “We still wonder…

  1. Thanks for the update. Life is still so busy and it must be difficult when you are see signs that make you wonder if all he went through truly made things "all better". I hope his ammonia level comes back fine!!It is trying and difficult to keep up with a child who needs extra attention as well as still maintain the attention and love for the rest of your children. I wish you all the best as you try to meet this challenge each day again.

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