Over the last 2 weeks or so things have been hectic. This is the first time I have had a chance to post. Last week we had 2 appointments. One was in Princeton at the neurologists office. We didn't seem to get anywhere with that one. If fact we left there feeling like we accomplished nothing. Our neuro dr seems to want to believe that this could still be a post viral cerebellitis. Even though it is way past time for this to have cleared up or at least started to. Granted, I would much prefer to believe that he has cerebellitis because it is much better than the mitochondrial disease theory. So, at this point she has decided to just wait. She knows that the metabolic team wants a spinal tap for some tests but she won't do it until they call her personally. She doesn't want it to be on her. They have to order it. She told us to make an appointment in July and she will see us then. I am supposed to keep a log of his staring spells in case he is having petite Mal seizures and call her. That's it. I asked her what she thought of the ataxia dr's idea of mitochondrial disease and she just answered "I don't know". On Friday last week we had to go to CHOP for the speech/swallow eval. Another waste of time in my mind. They were giving us ideas on how to switch him to more adult food (not a concern of mine at all) and that it wasn't too dangerous for him to eat at this point. Of course he didn't choke for them at all so they never got to see what happens on a weekly basis. I was informed that they think it has to do with what ever is wrong with him (really! who would have guessed?!). Then they brought in a psychologist to tell us that she doesn't think he is faking the choking to get out of eating (where the hell did I ever say that? We could have told them that and not cost the ins co over $200!)
Tuesday we went for our follow up at the pediatrician's office. That was just to catch her up and make sure he is at least not getting worse. She wants us to get some blood work next time we go to CHOP. The metabolic team faxed her the script of stuff they want done. We were supposed to get it done when we went to the ataxia clinic but they maxed out the amount of blood that they could take from him in one day. We don't have to see her again now for 1 month unless he gets worse or we need her. I have to call her as soon as I get the results from the ataxia dr.
I started the process of getting therapy for Connor in the house. The dr's want him to get physical, occupational & speech. Now I am just waiting for them to come out to the house to evaluate him. To qualify for this program he needs to be 35% deficient in one area or 25% deficient in 2 or more areas. Our dr's don't seem to think we will have any problem qualifying for this. Financially we qualify for free services Thank God we won't have to pay a per hour co pay. So, now we wait. After the eval they will come back and tell us if he qualifies and then set up goals with us and from there get the therapists out here. If he doesn't qualify then they will direct us where to go to get him the help he needs. Most likely if he doesn't qualify then he won't get the therapy at home and it won't be free. I don't see how he can't meet there idea of qualifying. Not with how behind he is now.
We are waiting for the mitochondrial results now and everything seems to be on hold with that. As soon as I hear anything I will post to fill everyone else in. Keep the prayers coming for Connor please.
Posts
