Its been a month since I posted. My kids have managed to go without sickness for that entire month, save a few sniffles. During that month they have eaten us out of house and home, and between them and my two jobs, I'm absolutely nutty. Jake is talking more and more each day, and his comprehension is getting amazing. I can have him help me with things around the house and he seems to enjoy it. School seems to be doing him so much good, and the teachers are amazed at his recent ability to make up his own sentences (though a little wacky sometimes). At least its not "canned speech." I can't remember if I blogged about it before, but he will be entering an integrated program next year in the same building where he goes now. It will be 9 typical children and 7 special needs children, a regular teacher and a special ed teacher and two aids. He will get to ride the bus every day and will be at school from 8 until 1. I'm excited for him, though I will miss our mornings together. He is making progress, and I am hopeful for his future, though there are still things that he is very delayed or challenged in.
Manny has an appointment with Dr. Michaels tomorrow. It is his "18 month well-check" however it will actually be the first steps in the diagnostic process for Manny. Manny has had a month to recover from his illnesses and I do not like what I see at all. In a few months he has gone from "the edge of normal" to being even worse than Jake was at this age. At least Jake talked (labeled). Manny has two words that I know of: "GO!" which means "swing" and "bel" for belly. I worked hard with him to get him to point to body parts, and over that past two weeks he has lost that as well. He is giving very limited eye contact and can barely walk a few steps without falling. His muscle tone is just horrible. This regression has to be one of the most heartbreaking things that I've ever endured. He is slipping away from me and there's nothing I can do about it.
I am not holding up well at this point and it is putting strain on everything else that I am trying to do. I am driving my husband insane, and just feel like I am underwater most of the time. I am mourning a "normal" child. I guess with Jake it was always in my heart that he was different. With Manny I had hope, heck I just "knew" that he was going to be OK. That he was going to grow up and help us make sure Jake was OK. Now I feel like Manny's case is going to be much more severe and it is making me insane. Some nights I just want to run screaming into the hospital saying "You have to do a full body MRI! He has tumors on his EVERYTHING, I just KNOW it." Ever since the mention of NF1 I am constantly convinced that he has a brain tumor, a liver tumor, that he's going deaf, that he's going blind.... it just goes on and on and it never stops. At the risk of sounding like an insane person ("sounding like"?) I am going to bring these things up to the Doctor tomorrow. He may suggest genetic testing and other tests for him. All of these things cost money, and that puts even more strain on the family.
After tomorrow we will be headed to the music festival and staying for three days and having fun. I guess I am lucky in that we are pretty good at handling our children in new settings, so I'm really hoping that it will be a few days of escape for us.
