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.

Saturday, September 22, 2007

Better Form

Here's a better video of Sarah Walking

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And here's a video showing how much better Ryan is walking!


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Monday, September 17, 2007

And Then There Were Two

First and foremost, Perrin had his eye surgery today and he is doing fine! He and Meva should be home shortly, they had to stop and get him new glasses on the way home. When things settle down a bit more today, I will update with more details about the surgery. Anyways, here's some pics from the past weekend.


Meva took the kids in their wagon to a Balloon festival. She said it was hard to keep them together and not run all over, so this was the only real good picture we could get.


Sarah loves to sit in my recliner and play the drum!



She's Not The Only One Either! Perrin Is a Big Fan



Ryan used to be the baby that hardly smiled when we took out the camera for pictures! That sure has changed, he's now the biggest ham and smiles like crazy for the camera.

And Speaking of Ryan!



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Tuesday, September 11, 2007

What's Going On!

It goes without saying that we're busy, busy, busy. I feel bad about not updating this more, so I'll try to be more productive here in the future. That will probably mean less writing and more posts that are just photo's---which depending on how funny you think I am is a good thing or a bad thing.

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IF I've done this correctly, you can start the video here above this will show you what has been the biggest news and development so far. I'm new to using this feature on blogger, so it may look odd or out of place on your screen. Please let me know as I'd like this to look nice. Anyways, for those of you not able to view this video, Sarah is walking!! She started little by little taking steps here and there away from mommy and daddy's support, and then a few days later she was off and running! She's been going ever since. She still walks like a little drunk, but her form is much much better, as is her balance. While it's great and all, it also increases the amount of trouble she can get into!

The boys are not yet walking. Perrin really doesn't show much interest in it yet, but he can easily cruise, or walk along an object (sofa, table, daddy laying on the floor) when he so chooses. Ryan on the other hand is almost there. First and foremost, his biggest challenge remains controlling his super-strong baby muscles. What Ryan does isn't really walking, he gets excited and tries to run-- his powerful little legs just start pumping and leave the top part of his body behind! He also does this thing which, the best way to describe it is, walking with one leg or as Meva has named it "Half of the Russian Step Dance." I've been trying to get that on video, and as soon as I can I will share it with everyone here. But the cool thing is that he keeps trying to stand straight up on his own without help, and then he takes anywhere between 2 and 5 steps on his own before crashing. I think by Halloween he'll be walking also!

Like the walking, I've mentioned before that Perrin has something called Strabismus, which in layman's terms means his eye cross. I had it as a child and had to have surgery, and that's what Perrin will be doing this Monday morning. He has an early morning surgery scheduled for 7:45am and should be home later that morning/early afternoon. It's a more common and minor procedure as far as surgeries go, so we aren't overly concerned about this other than the anesthesia's effects on such a young baby. He should be fine and I will post an update here on Monday as soon as I get time.

This weekend they are going to see a Balloon festival with Meva and our friend Colleen and her son Finnigan. I of course will be working and I have to miss this unfortunately, but Meva will take plenty of pictures for me, which I will share sense she hasn't posted anything here in months. Maybe me and the kids are just working her too hard, the poor thing. Speaking of little Finn, I am now watching him on Thursdays from approximately 9:30am until 6PM. Yesterday was his first day and it was a lot of fun....for me. I think he was just in awe of the three giant babies that moved real fast and kept taking his pacifier! I think he did really well though and being with other babies for extended times will be good for him!

That's about it right now. Below are some of the pictures from the kids trip to the zoo. It was kind of fun, but mostly boring as they are really a bit too young to understand it, but we're glad we went.


Perrin actually enjoyed petting the goats!


Sarah, who loves Gus, was terrified of the goats!











Father and Daughter! Can you see the resemblance??


Sarah fell asleep after seeing the monkeys!


Ryan joined his sleepy sister and it was time to go home!