Wednesday, August 10, 2016

Time is flying by! So much to Say!

Wow Texas was over a month ago! Where does the time go?! We have been having a great summer. We have been very busy and just having fun with the kids. We have gone camping, spent a lot of time outside walking, swimming and on our bikes, and we are off to Story Land this weekend. Oddly this Summer Brendan has gone in an ocean, lake and pond. He usually hates swimming in them but has been open to it this year and has had a great time. He usually sits in the shade on the beach so it was so great to have him join us. He was smiling the whole time. Maybe having more control of his body makes him feel safer in the water. We have another surgery upon us and he will be back to Texas for more therapy in December ( I think).


Texas went okay I guess. Lily was a great traveler and perfect when I really needed her to be but other than that she was a bit of a nightmare. She made it very difficult and mentally exhausted me. Brendan was awesome the entire time and had a great time with his new friend Jack, whom was also there for therapy. Two weeks was a bit long for me to be away from my family and I cried a few times. Brendan got a random fever in the middle of the night before we were flying home and I lost it because I thought we weren't able to go home but we made it!! I have no idea what the fever was all about but both of us were up at 3am and so ready to go home! He ended up throwing up on the plane but pretty sure he just saw Lily's banana (he can have a strange stomach) and fortunately we someohow mananged to get almost all of it into the lovely plane puke bag even with Lily on my lap. Serious props to us hahaha. I think we totally grossed out the family next to us and they wouldn't even talk to Brendan the whole flight. At least we had the best neighbor in our row and she actually praised me on how well my children behaved throughout the flight. Therapy was okay. I wasn't allowed to attend the 2nd week because the trainer thought Lily was causing Brendan to act up and not try as hard. I guess he improved without me there but I hated not seeing the sessions. I went home blind. Two amazing moms that I have grown to know helped watch Lily in the hotel room so I could attend the last day to record the new routine.

Unfortunately Brendan is very tight. I don't think it is spasticity because I can straighten his leg still and he still feels floppy vs spastic. He has grown 3" recently and is not stopping so I am almost positive he needs SPML which is totally normal after SDR. I am actually bringing to Dr. Yngve in Texas (yup another trip to schedule) beacuse he, like Dr. Nuzzo, performs it less invasively. I am also going to see if they can do anything to help his right arm because it is hindering his walker especially in cruches. I am super excited about SMPL because he had great results years ago before SDR and I have seen so many children excel afterwards. Mike Poole (trainer) also believes he will have much more stanima afterwards which is what I really want!

Sorry I am being totally boring in this blog. Let me try and turn it around. Brendan is still impressing me. He is riding his accessible bike with ZeRO assistance. He can stop and start on a hill, it is honestly amazing! He loves riding his bike and last night I rode my bike with him. While he is slow (I can't blame him because his bike doesn't have any gears and it doesn't coast even going down a hill so he has to pedal the entire time) it was so cool riding along with him. He can steer, move aside for cars and go up and down hills all on his own.
He has been so happy lately. He is so comfortable and he really loves working out. He may fight you at first but then he really gets into it. He gets bored on break day so we usually still walk or go for a bike ride or something. He used to want to do NOTHING on break day. He is getting much stronger overall. His upper body is kind of buff!


I am still so boring today. Sorry! Life has been so busy from the moment we wake up to the moment we go to bed that this is literally the first time I have sat on the couch and relax at 8pm. I really need a break!

What is Next:

We are ordering a Max Mobility for Brendan's manual chair. I am trying to get insurance to cover it and will let you all know if that works out. It costs about $6,000 but it is really cool and less expensive than a power chair.



He will have new SMO's made.

He will head to Texas and most likely have SPML and possibly a right arm release.

He will have two more weeks of therapy in Texas.

He will begin 8th grade!

1 comment:

Capt. Timbo said...

Brendan's Mom,

I read your blog and it was so refreshing to find it among so many other websites, mostly by attorneys, who have their own agenda.

My name is Tim Kelleher, and I have helped kids with CP to learn the game of chess and have made them their own special chess boards that allow them to display the competitive abilities and intelligence that is locked inside of them. I think Brendan would be an excellent student and player.

I'd love to share more, contact me at: capt.timbo@gmail.com, or call me: 770.356.2369

Have a nice day...and ask Brendan if he would like to learn chess.

Tim Kelleher