Things have been really crazy for us this week. It is always a busy time for everyone before Christmas but Andrew is definitely keeping us extra busy. Last week we had to do a urine sample to be shipped to France. We got that taken care of but it took us sending it through DHL. The people at the Post Office said it was a biohazard and could not send it. We attempted to do a chelation trial this week with a 6 hour urine sample before and a 6 hour urine sample after the suppository. That was a waste of time because even though Dandy (my dad) stayed home with Andrew, the urine collection bags kept coming off and leaking out into his diaper. What a pain! Finally we called the Thoughtful House and told them it wasn't going to happen. I requested a meeting with Easter Seals (our Early Childhood Intervention) about 2 weeks ago. After making repeated phone calls to his speech therapist and finally calling the executive director to complain I received a returned phone call on this. I told her we want to make changes to his goals, add goals and make them measurable. Really we want 20 hours a week of therapy for him and we will not stop until we can get this. This is a time that we should be taking advantage of and I feel like they are not willing and do not want to really provide early intervention for him. I went to the daycare to see if I could get a statement from the director saying that her staff was not responsible for 1:1 therapy and instruction for Andrew, but she would not do it. Oh well, at least I tried. I was so frustrated with her that I even mentioned advocates and attorneys. ?!? What was I thinking. After talking with Andrew's Speech Therapist this week I realize she thinks he is more Mentally Retarded than autisic and says that he needs to work on interacting and engaging more than developmental skills like putting things in and taking things out. So I am preparing for a big battle, printing out resources and info and I ordered the Brigance assessment and have been writing my own goals for him that will be measurable. My anxiety has been at an all time high about this, but in ten years I won't know this woman and nothing will matter except what I have done for Andrew. In the mean time I have had to order protein powder, and protein bars for Andrew because he has become such a behavioral eater that he only wants crunchy stuff. What a pain!
Today is a big day because he is having surgery- tonsillectomy and adenoids removed. He will stay over night and then it is back to the hospital on Monday for a 24 hour EEG to see if he is having seizures. It's sad but Felt and I would almost be happy if we knew he was having them because there is medicine for that and we are so frustrated with the lack of progress he is making. Please pray for us and pray that God will give Andrew a speedy recovery.
Rett Syndrome. One year Post Surgery
3 months ago