Long Term Care Evaluation

On Tuesday the nurse that had been assigned to come do the evaluation of Bryce for long term care called and said that she had a cancellation and could come do ours if we were available. I of course said yes, and she came out that afternoon. Wow, that was an emotionally exhausting experience. I haven't really been able to write about it until today, but I think it is important to have it in here, since I use this blog like a journal and as unreal as it sometimes seems, this is really something we are going through right now.

I have been through this evaluation once before, but that was back in early October when he was still able to do many things which he is no longer doing. That was hard enough. This one was a lot tougher! The nurse was very nice and ask all the same questions as last time, but the answers were different. Is Bryce able to crawl?...no. Scoot?...no. Is he able to sit?...no. Is he able to help feed himself with a spoon, help with dressing himself, hold his own cup?...no, no, no. Bryce's therapist had reminded me that this was not the time to make him shine since we really need him to get the care that long term services can offer him. So I had to be really honest about what was going on. Both with her and myself. We talked about the fact that he can no longer hold a regular sippy cup up by himself, and that he is unable to roll from his back to his stomach without help. His hands are fisted most of the time and his muscles throughout his body are tight or spastic. If he is in another room, he is not able to come and get me if he needs something. He no longer has any words that he uses and often says little more than aaaa. Yes, he can point. Yes, he is still very social. Yes he can turn pages of a book or stack some blocks if his body is totally supported. We talked about the fact that he is still gaging/chocking on a lot of foods and liquids even though everything he eats has been cut up very small. He continues to have trouble gaining weight consistently and may soon need some type of feeding therapy. He may have asthma and he may still be aspirating food and/or liquids. No he does not have a diagnosis, we have no idea what his future holds or what is causing this. We do know that it is some form of a white matter disorder, not one of the more common ones, it is not lupus, mercury or lead poisoning. It is not many other things which have been ruled out, but no, we don't have a name for what is happening to our son or what is or has caused this, all we know is that he is a two year old who cannot do many things which a six month old should be able to do and he is in need of therapy and medical support and devices that will help him be as independent as possible. She played a little bit with Bryce. We went over his medical records and therapy reports that we have. She took some of those and said that their medical examiner will review everything and we should hear one way or the other in about two weeks. She left and I cried. It didn't really help that we had been at Xtreme play earlier that day and I had been watching an adorable 20 month old running around, climbing on the toys, and laughing away as children that age should be able to do. Why can't my son! I pray for everyone of my children. I have since before they were born. I have always done everything that I know to do to give them what they need. It just hurts so badly sometimes. Luckily I have children here who needed me for one thing or another as soon as they realized I was no longer in the "meeting" so I got myself together and spent time having fun with all of my boys that afternoon! John worked late that night and as I was going to bed with Bryce sleeping next to me I cried again until I finally fell asleep. I sure hope that he qualifies this time so that we don't have to go through that again! I don't see how he wouldn't. Looking at it now, I know that he is not going through this because of something he did or we have or haven't done and that actually we are very lucky to have this special spirit in our home. We are very blessed with many wonderful children and opportunities. The situation could be much worse and I am thankful that it is not. The Lord is very aware of what Bryce and our family are going through and I know that we receive constant support, more than I am even aware of.

Ok, I got it down. Now, on to get everyone fed, dressed, and chores done so that we can head out on today's adventure. The library! Then we are meeting some friends at the new McDonald's (yuck) for lunch and to let the kids all play together. It should be a fun day. I can't believe Spring Break is already half way over...Nooo! I guess we better make the most of what is left.