Channel 12 news

Monday, November 16, 2009

SDR Selective Dorsal Rhizotomy and my suddenly dare devil son!!

Well it is time to focus on our decision again for Brendan having SDR. The results are amazing. I need to figure out how to post some video clips of children who have had SDR. The surgery seems like a miracle. I realize it will take years and a ton of therapy to see the results we are hoping for but the results that can be obtained are almost unimagineable. I keep having dreams of Brendan standing up and walking on his own. I love those dreams. I have never seen my child stand up tall. I don't even know what he would look like without being hunched over with his knees bent. I hope one day I can see this vision with my own eyes! I have never been able to get a true height on him because the Dr.'s don't lay him down and measure him like an infant anymore. We just guess. I know he is getting very tall because at my wopping 5'1" frame he is getting very difficult to carry. He stands right below my chest when I hold him up and that isn't even standing tall. They grow so fast!

He is becoming a very daring little boy lately. He actually fell off the couch and out of his walker twice this weekend. I think his vision has improved since his strabismus surgery this past August. He has found the light switches in our house and he seems to be much more aware of his surroundings all of the sudden, in turn creating my dare devil son.

He has never been able to lift one arm off his walker and now he is doing this and turning on and off a light switch. AMAZING! He is also enjoying opening and closing the dishwasher. Well this is how he fell out of his walker not once but twice! The first time I cought him but I wasn't fast enough the second time. He has no balance and once his mind has any sort of emotion his arms tighten up especially at the elbow. He has absolutely no reflexes so his arms never protect him against a fall which often means his head is what hits first. :( Luckily his back hit the wheel on his walker first and then his head lightly bumped the ground as he slipped out of my arms. BUT I am happy that he is getting out of his comfort zone and actually trying to do these things. I am also happy that he has gained some muscle mass to be able to do this things. Holding himself up in that walker with one arm is a massive feat!! I am so proud of him but I envision many more bumps and bruises down the road. He is a mad man in his walker. He has no fear. He will yank it over bumps and curbs and anything in his way without realizing that it may tip over with him in it. This has also happened and is not a pleasant site to see! BUT he is a boy and that is what boys do and how happy do you think it makes me to be able to say something like that!

One Dollar at a time

You may have noticed that I have added a donate button to Brendan's blog. We are asking those who are interested in helping Brendan walk donate a dollar. These dollars are only going towards Brendan's future surgery which requires money for plane tickets out to St. Louis, surgery costs, future therapy costs, and any future equipment needed for him to ambulate. I have set up a paypal account in his name and he has his own email.
Having disabled child requires money you would never imagine spending. His father and I have spent $1,000's just on new walkers for him. He needs special sneakers to fit over his leg braces that cost $65 each which he now wears a hole through in his toes just in a few months. We are lucky to have great insurance that covers most other expenses but these added expenses add up very quickly.
So on top of these we need to get Brendan to St. Louis!!! He needs to get evaluated by Dr. Park one last time and I need to be by his side taking diligent notes. Today's plane tickets cost $828 round trip for just Brendan and I to fly to St. Louis. We also need a place to stay for one night and probably a rental car. So as you can see those expenses are unaffordable for us right now. Obviously I will go into debt if need be for my son's future but a little help would be greatly appreciated.
We will need to fly to St. Louis at least 3 times over the next couple of years.
This is why I am asking for a little help. Something I NEVER do. I want to be able to make this surgery a possibility for Brendan. He deserves it.
Thank you in advance to anyone who decides to donate their dollar!!! :)