Friday, October 21, 2011

PASS Program and Brendan does NOT need Botox!!!!



I had 4 appointments yesterday, three involved Brendan ~ the story of my life! I worry sometimes that I revolve my life around him too much but sometimes I realize that it is simply impossible not to.

I finally was able to go to my training program for PASS yesterday. I have been trying to go for months but the timing has never worked out for me. The PASS program lets me hire someone to come to the house and work with Brendan for up to 20 hours a week. I struggle with the thought of this but as life goes on and becomes busier I realize it may be a good thing for our family. I worry the girls will one day resent Brendan for steeling so much attention. As it is he has Therapy on Thursday, (sometimes in the pool with jealous girls watching) hippotherapy on Saturday, (where he gets to ride a horse) and Special Olympics on Sunday. None of these things cost us a dime and are all great for him but from a siblings point of view I am sure they look like all fun activities that he is involved in. They are involved in nothing because we simply can't afford gymnastics or dance class. I will work on this because I feel it is important that they have some activities as well. Actually Chloe is involved in girl scouts so she does have one activity. phew! :)

Part of me worries that his sisters will see this as something else Brendan gets but I hope in the end it allows me to shift some of my attention onto them. Basically I hire a worker which the state pays and we come up with an IEP (basically) for him. They work on three maing goals with him: self help skills, socialization within the community, and safety. I am excited about this change in life and I really hope I can find someone our family really meshes with. I hope I don't feel guilty someone else is working with my son while I am home. That is something I have to get used to. I have to realize sometimes I am not superwoman and sometimes this life is difficult! I honestly hate admitting that!

Botox ~ Brendan had PT yesterday and then his 6 month appointment with his neurologist, they are in the same building. We were there for 3 hours but Brendan did amazing. He loves everyone that works there since we see them once a week. Everyone also loves him and gives him special treatment. The neurologist's assistant constantly gives him a special snack after his therapy and always comes to say hi to him. He has a little crush I think. He wheels around like he owns the place. He colored a picture for the assistant and she hung it up near her computer, so cute. The Dr., his physicaly therapist, and I all agreed that he does not need Botox yet!! It has been one full year since his last round. He has gained so much progress since his PERCS surgery this past April and we are still seeing the benefits. I am super excited. I am so happy he doesn't have to be put under in the near future and super happy he doesn't need this because his legs did not get tight enough to need it. He is gaining strength and walking better than ever before. He hasn't walked well since his major hip surgery when he just turned 5. I am finally seeing major improvement and am very impressed. Recently he started walking a little odd but I realized he is walking this way so he doesn't trip over his feet. He is compensating all on his own which is huge for him!

I was feeling overwhelmed yesterday after the PASS meeting. Sometimes the reality of life hits you but I wound up having a great night with some weight lifted off of me. This child of mine is amazing and has come so far in life and I know that isn't stopping anytime soon!

3 comments:

Sheila said...

The PASS program sounds great! I wonder if CT has something like that? I'd love to find a program like that here. I think it will be great for all of you. It gives you a break and more time to spend with girls and it gets Brendan used to other people too. Great news on the botox too!

Amy said...

I would love to have PASS or something like that for Emma. That will be good for Brendan and you. No one person can do it all.

I love that picture of Brendan and that big happy smile.

So glad that he does not need botox. That PERCS rocks, huh?

April said...

Amazing news!