Well after a few new Dr. appointments we have been told that SDR is not for Brendan. A specialist in MA feels that once we take away all of Brendan's tone he will actually regress and not progress. Some children with CP rely on their tone to be mobile. Brendan happens to be one of those children which is very unfortunate. I guess it is somewhat bittersweet because SDR is not something I wanted to put my child through and wasn't even sure if I was mentally strong enough to actually go through with it but in the end it seemed like it would make Brendan's future easier and less painful.
We still haven't given up completely. We can still fly to St. Louis and listen to what Dr. Park has to say regarding the surgery. We are also going to try a baclofen pump trial to see how Brendan's body would really act without having any tone. The procedure is a spinal tap and risks are involved but at least we will have a better sense at what SDR would do to his body.
Unfortunately we have to wait a while before trying the pump trial. Brendan only weighs 39 lbs which is on the small side. He also has 2 surgeries coming up. He needs to have screws removed from his hip that have been in since his right hip osteotomy in December 2007. He risks infection since they have to take them out of his bone. He also needs to have the 3 holes in his heart closed. He will be having a sedated heart cath in July which will determine if my little boy needs open heart surgery or if his tissue can handle a MUCH less evasive and simpler procedure to close the holes. Obviously his little body can only handle so much in a year so we have to make those two surgeries priority. He tends to lose weight after surgery as well so he will be even smaller. He dropped to 27lbs after his hip surgery.
So many decisions all the time for my little man. I haven't even gotten to his cortical visual impairment update but that will have to be another day.
I will try and post new pictures soon. He is getting tall and very hard for me to lift as I am only 5'1"!! I am fortunate that he doesn't weigh very much yet!! :)
It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Wow. He's been through the mill hasn't he? So many operations and appointments He's struggling with way more than CP and he's still smiling. I love it!
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