Saturday, September 29, 2007

Walking for Perrin and Hydrocephalus

Well, we've had a lot go on in the last week. Grandma Cheri is hospitalized due to complications of COPD and on life support right now. She's doing better, but it's taken its toll on her loved ones, and we are all hoping for the best. In the meantime, Grandma Muriel was released from the hospital Saturday after a long hard fight against Burkitt's Lymphoma/Leukemia. She is going home now after being hospitalized since spring. It's been a long 6 months, but we are glad to see her beginning her road to recovery. We haven't mentioned this much in this blog as we want to keep the focus on the babies... but the health and wellbeing of their grandmothers is a part of their lives, and so it has been a bipolar week in terms of their grandmother's wellbeings.

Sarah also had a rough week. She loves her dog Gus, but she doesn't understand about cornering a dog and warning signs, and she ended up being bit in the face. She had a cut under her eye that warranted some stitches. This all went down at the same time as Grandma Cheri being rushed to the hospital. We opted to stitch Sarah ourselves rather than take her to the ER where the wait would've been problematic in regards to coordinating things regarding Grandma Cheri. [For those of you who don't recall, I work in the medical profession.] Bless that baby girls heart... after her dog bit her, her mom and dad swaddled her so she couldn't move, then held her head and gave her numbing shots and stitched her. She was so mad. She threw up in the process of the whole thing, and I was a nervous wreck doing it. I was so nervous about working so close to her eye and doing a good job as to keeping the scarring to a minimum at the same time it was quite distressing doing this to our little 15 month old baby girl and I wanted to be swift about things so as to not continue to break her heart about mom and dad ganging up on her and doing that to her. I'm sorry Sarah. But, I think the stitching job looks okay and I'm hoping for minimal scarring for you.
After it was all over, we held her a lot and she then finally calmed down and all that adrenaline was converted into a very manic little baby running around the living room squealing with joy, well into the night.

I'm totally going to switch gears here as really this post was to be about Perrin, I started writing this post over a week ago, but it's taken me this long to finish it.

Let me just start by saying how proud we are of our little guy, how much of a joy he is and how lucky we are to have him around. If you don't remember, Perrin has hydrocephalus. This means the spinal fluid formed in his brain becomes trapped and causes lots of pressure on his brain, and as a baby, for his head to swell. This is what he had surgery for last October where a shunt was placed to drain the fluid off his brain and allow him a pretty normal life. The picture to the left here is prior to the surgery. You can see how puffy his head is and the look of discomfort which was there most of the time prior to the surgery. To the right is Perrin that same month while he was still in the hospital, just after the shunt. You can see how much less "puffy" he looked already. The shunt he had put in will need to be there for the rest of his life, or the hydrocephalus will flare again. You can also see how his eyes look downward here, that is due to the pressure on his brain affecting his ability to look up.

We are lucky that there is the option of the shunt to allow him this pretty normal life. Before the development of shunts, this problem was always fatal. That isn't to say that we are in a really great place just yet. Shunts fail. Shunts require replacement if they fail, which means repeat brain surgery. If we are lucky, Perrin will never have to go through this, but most patients with hydrocephalus will. Some need repeated shunts some ridiculous number of times. There is a girl in our parent support group who had developed hydrocephalus at birth, like Perrin, and this year when she was fourteen years old her shunt failed. Then the replacement did and so on and so on. She's had 22 surgeries since December and she's having another one next week. She has developed a thing called slit ventrical syndrome, where the spinal fluid is overdrained which causes the brain to expand and she lives with a horrible chronic headache, which worsens if she stands up and gravity drains the fluid anymore. So, here she is a 14 year old honor student who'd been living a normal life more or less and all of a sudden things took this turn. Another young girl was doing fine and then needed her shunt replaced, and lost her ablility to speak.

There are a number of people out there who go through life with hydrocephalus and minimal implications in there life, but there are also a great deal of them who aren't so lucky.

We walked this past Saturday to help support research to figure out what can be done to make sure people are living with minimal implications. If any of you out there who follow this blog and are fans of Perrin and would like to help him to avoid these scary stories, please feel free to support us at Team Fudd. You can click on the link here and also in the left column called Team Fudd Fundrasing to donate, and you can count this as a tax deduction.

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