That's wonderful.... thank you for letting us know.

Oh by the way. To the readers that are new to this condition. Dr. Wruble said that the only valve damage due to impact was(that he has delt with) was, when the boy fell and the valve hit the edge of the coffee table.

I am a mommy of premmie twins as well, and one of them had a grade three brain bleed that led to hyrdocephalus. He had a vp shunt placed at 12 weeks. I won't go through all the gory details but he's had a couple revisions (mostly due to infection) but has come through remarkably well. During the shunt failure, we noticed that he was not meeting milestones like his twin, and even had some setbacks. We were told that we could not compare them- which is true. When he starting losing what he learned though, I knew there was a problem. I had a lot of trouble getting a dr. to revise it, and when I finally found a dr. who would, he was so far behind and so sick it was getting dire. After the surgery his whole personality changed. Cheerful, playful, and trying to keep up with his sister. He still wouldn't walk though. We took him to the opthamologist who felt his nystagmis (a slight shaking of the eyes from the increased pressure on the optical nerve in the brain) was giving him vertigo and keeping him from walking. There was a new study that said if they corrected the eye muscle (like they would do for a lazy eye) before age two, they was a marked reduction with the nystagmis. A week after the surgery, he walked. He was 26 months- 23 months by his adjusted age.
I only mention it due the severity of the brain bleed to keep and "eye" on the eyes. Increased eye shaking also means increased pressure on the nerve, and can be an indication of a shunt problem. If you don't have one already, find an opthamologist who can keep an eye on it for you. He can look at the nerve with a light and possibly save a trip to the hospital or ct scan.

I wanted to add that the shunt is supposed to be very sturdy- they are intended to last a lifetime- the non programmables at least.

To multimom> thanks for the heads up. We have already gotten the eyes under watch. There is no sign of any complications. We already knew that you can't compare siblings let alone twins. They are different already. Hydrocephalus just adds to the variation of development.
Everybody> Thomas has started to babble. He was already squealing, grunting, laughing. Now he started to make the "buh" and "muh" sound. I think the "buh sound is our (mom and dad) fault. we call both boys buba. Thats fine we are already rednecks, now there are two more in the world.So we are doing great. On a much lighter note. I think the brother is going to need a helmet. Dylan is learning to stand up, and learning the effects of gravity. G-nite all, and keep your heads up if you can.

Our boys had their 1st B-day a couple weeks back. Thomas is doing really good. It looks like he might start crawling. There might be some hindrances due to him not using his right hand/arm. Right now he uses his left hand an spins himself around on his tummy. It's pretty funny. There is improvements, he sits up pretty good in short periods of time. He is holding his head up perfectly. He is happy. No symptoms has come back.
We have some awesome news. March of Dimes wants our little family to be the ambassador family for Henry County of Georgia. This is in Stockbridge, McDonough area. We will be on the cover for the 2011 calender. So this is pretty exciting.

Hi tbirdowner86... thanks for the update, and happy birthday to your twins.

That's good news about Thomas and congratulations on the ambassadorship. I look forward to hearing more about it later.

It has been a while since my last posting. The boys are going strong. Dylan is just running around getting into trouble as boys do. Thomas is doing great. His doc says he is growing into his head. Since the surgery Thomas' head has grown 3/4 of an inch. That's good compared to how fast it was growing before. Dr Wruble said that he didn't need to see Thomas until Jan. of 2012. Thomas however is going to get A.F.O. and a hand splint April 15th. We already had a casting made. The A.F.O. is a Articulating Foot Orthotic. basically it's a foot brace, this one will stop his foot from pointing down constantly and prevent him from walking on the inside edge of his right foot. The hand splint will only be worn at night. This will hold his hand open while his body is at rest. His hand is in a fist constantly. This makes it hard for him to open it. If his hand is open at rest he can open and close it at will. For those in the Atlanta, GA area, C.H. Martin orthotics and prosthesis is great for kids. 80% percent of clients is pediatrics.

tbirdowner,
I just caught myself up on the history of your twins. I'm so glad things are looking up and going in the right direction. I am also SO glad to hear that you are getting the services you need and deserve. I wanted to share a bit about my own experience (from my parents' recollection) as an infant with Hydrocephalus. I, too, had a big head and lagging development. I had to "grow into" my head, just as Thomas will. My parents said that by the time I was two I was walking and was just about caught up in development. My point isn't to say that by the time he is 2, Thomas will be caught up, but to say that it varies but that he WILL catch up, on his own unique timeline. I am know 26 and you would never be able to tell that I have hydrocephalus, unless you felt my head I hope things continue to progress well for your boys. Keep advocating for your needs and your boys' needs. I have learned that advocating for my medical needs is going to be a lifelong necessity!

Hi tbirdowner86,
I have just read the history of your little boys and am glad they are doing so well, I also have hydrocephalus and have had since birth and I am now, with help from neurosurgeons and keeping an eye on my symptoms, am completely normal. As with annakkro in the above post, you wouldn't even know I had hydrocephalus unless you felt my head!
Good luck to you and your family with everything and dont be afraid to ask questions on here, we are a friendly bunch!