It has been a long time since I have last posted. I have lots of reasons why I stopped but mainly I was drained from everything and needed some time to not have to write about all of the craziness in our lives.
Since January we hired and lost a nanny and hired a new one who is working out great. She is so mature and calm and takes initiative with Andrew. So many times I have stopped by during the day to see her out on a walk with him or playing with him, rocking him. It really gives me peace of mind. We also filed a complaint with state regarding Easter Seals ECI services. After fighting for 3 months with Easter Seals and writing a really compelling letter about how they violated Andrew's rights the state gave us the ability to change services to Brighton ECI. I could write a book on all of the horrible things that were said to me, to our nanny and the really awful things that Easter Seals did. Even my happy pill at night could not make this situation better. In the end I still want their agency closed down and I wish I had pursued a law suit so that they may never do what they did to another child or family. Brighton on the other hand has been a complete oppossite. They are wonderful and I could not have asked for better services for him. He has been getting 20 hours of therapy a week from them, which included ABA, speech, OT and PT. They also sent out our angel Rebecca, his teacher, for an hour and half a day to work with him. And they really did work with him. They have all put in so many hours and hard work and I am so thankful for all that they have done for Andrew.
During our transition to agencies a therapist had suggested that Andrew might have Rett Syndrome. I started to read more about this and knew that this is what he had. After aptmts with our local neurologist who was not buying it, I scheduled an aptmt at the BlueBird Rett Clinic in Houston. His therapists were really working their tails off and Andrew was still not making much improvement and was starting new things like holding his breath over and over and hyperventilating. He was still falling down all the time and Felt had to make him a ramp to walk in and out of the play room. When we took him to Texas Childrens the doctors were questioning or reasoning for bringing him. This is because Rett Syndrome is primarily in girls. After watching him for 2 hours they said they had never seen a boy so much like all the girls and they wanted further genetic testing to see if he had a MECP2 gene mutation. Within a couple of months they called to say that he did have a duplication of the gene and that he has 2 X chromosomes in his body. Boys have XY and girls have XX. Andrew has XXY. The neurologist was hesitant on making a diagnosis being his age and male status but called a couple of weeks later to tell me that does indeed have Rett Syndrome, the most severe form of Autism, and a degenerative condition. While we are thankful for an answer as to why he has struggled so much we find it hard to think about the future. Just when we were dealing with Autism we start to think that Andrew will lose his ability to walk, lose all purposeful hand use, possibly need a feeding tube in the future and lose his ability to sit up. This is very hard to think about and I am reminded by those around me to take it one day at a time. We start to grieve again as we feel Andrew's body and mind slip further into the syndrome. We are also dealing with a lot of anger and frustration. We were fighting so hard to cure what we thought was just another form of Autism- through diet, shots, supplement, vitamins,. I can't tell you how much money we spent on trying to cure what you can't cure. I think about Andrew crying in the morning while I poked him in his toosh with an MB12 shot. What a waste of my time and for what?
Andrew's last day with Brighton ECI services is tommorrow. I am very sad about this. Although Andrew hasn't made huge leaps of progress, every therapist has been part of a team holding Andrew and our family up in support. He has gained some new skills- turning the pages in a book, using fork with help to eat, using communication devices, taking puzzle pieces out and learning to put them in. This is what early intervention should look like for a child and I just wish any child with Autism could get this level of care.
Andrew turns 3 on Sunday and we will have a party for him on Saturday afternoon. It will be Zoo themed because our life is always a little crazy and wild like the zoo. I am planning on making a cake and cupcakes- not sure how it will turn out considering my practice last weekend was awful. I should have signed up for cake classes. Oh well. At least I try.
Next week Andrew starts school down the street in a special education self contained classroom. After arguing with the district in an ARD meeting Andrew will have a teachers aide all to himself for the first 30 days. We will then have another meeting to see if he continues to need this, which he will. We both have a lot of anxiety about him going to school. Even though it is only half the day- I feel like I have no control over the situation and I am just sad that our time at home in the morning is forever gone. I don't think I would ever be ready for him to start school. After observing the class the most I see he will get out of the setting is socialization. Pray for me that this will work out ok and that he will learn something. Not even a cute backpack or new cute outfits could make me excited about this.
I will try to update more often as I am not working full time anymore. Thank you God for that one! I can finally wash clothes and fold them and even put them up! Wow!
Rett Syndrome. One year Post Surgery
9 months ago