Korbin is getting so big! He is really doing great these days. About a month ago we saw a Physiatrist. A physiatrist specializes in rehabilitation and pain management/control. This particular physiatrist deals with pediatric CP. He is also a general pediatrician. We really couldn't have asked for anything more. Our first visit was very productive. He was very thorough and friendly. He decided that we would try Korbin on a muscle relaxer called Baclofen. We worked our way up to a full dose over the period of 3 weeks. He also felt that it was time for Korbin to start speech since his language skills were lacking.
After Korbin started taking a full dose of Baclofen, we saw some major improvements. He started talking more and even got to the point where he is almost sitting independently. His fine motor skills have also taken a leap. I think the Baclofen played a huge part in his progress. We are currently working on doubling his dose of Baclofen to see if that can further his progress.
About 2 months ago, shortly after the Physiatrist visit, Korbin came down with a cold or some kind of bug that caused him to run a fever. A couple days into it, we had a bit of a scare. He had a seizure. Of course, I had let my guard down for seizures and didn't realize that was what it was until someone pointed out that the symptoms matched pretty closely. We saw the neurologist a few days later. She confirmed what we had suspected: that it was indeed a seizure. Because of the seizure lasted approximately 20 minutes, the neurologist gave us an emergency medicine to give him in case he has another. The neurologist seems certain that we haven't seen the last of the seizure activity. If/when he has another, he will be on anti seizure medicine.
Since my last post, we have had another eye surgery which went very well. We discovered a cyst right above his eye shortly before surgery so the eye Dr. removed that during the eye surgery. We have also had another MRI. That went as well as we could possibly imagine. The hydrocephalus has pretty much resolved itself and the Dandy-Walker has been downgraded to an innocent cyst. We have one more surgery in our near future and that will be on his right foot. Hopefully that will take care of that issue.
He is in therapy 3 days a week (speech twice, OT and PT once a week back to back). It is all pretty overwhelming sometimes. It has become very difficult to see kids that are younger than him progress and eventually pass him up in development. I find myself getting more upset about it now than I have in the past. I get disappointed every week at therapy when I see how he is no closer to walking than he was a month or two ago. I am hoping with all hope and keeping my fingers crossed that he walks at least by the time he is 2. They have tried to get him to walk in a walker but his legs are just too tight to get any kind of gait. Not to mention the fact that he still hasn't mastered sitting properly so he lacks stability.
I know they warned me that it was going to be a long road for us but I guess I never really imagined how long it would be. I just figured that they were wrong. Surely nothing could be wrong with my child! I guess like everyone else, I never figured something like this could happen to me or my family.....much less my child. I assumed they had to tell me all of those scary things because that was their job. When we noticed that there were delays and even when he received the official diagnosis, I guess I was under the impression that he would be one of the "mild" cases where no one could ever notice. Never once, until recently did I actually believe that my child would require a walker to walk. A WALKER!!! Even now, it just doesn't seem real sometimes. Part of me is ready for that mainly because I want him walking. The other part of me isn't ready. That will mean it really is real. It will be obvious that there is something "wrong". Right now, he just looks like a baby so no one really thinks much of the fact that he isn't walking. Even sitting, I don't have to make a big deal about him not sitting anymore since he has figured out how not to tip over and hurt himself. I am not sure that I am ready for the "looks" and the questions. I don't mind talking about it but I know that the questions will exponentially multiply. Even after his foot surgery, if they do indeed cast his leg, I am sure we will be answering many questions.
I am still waiting to see that glimmer of light that is supposed to be at the end of the tunnel but I fear that we have barely covered any ground in our tunnel and that the end is nowhere near.
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." - Mother Theresa
1 comment:
Hi Sabrina,
I have a daughter that has hydro also. She did not walk until after her second birthday. We were so worry that she could not walk and did a lot of PT but she just took off one day. She is still very weak and falls often while standing. There is hope....
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