We had an appointment yesterday for Korbin's 2 month shots and a sit down with the Dr. about our latest developments. I am not sure if I mentioned in my previous post that the neurologist had said that Korbin has Dandy-Walker Syndrome. I have spent a lot of time searching the internet for information on this. The information available is quite confusing especially for someone who came short of excelling in biology and anatomy. Anyway, Korbin's Dr. sat down with me and explained things tothe best of his ability and also showed me Korbin's CT scan (this is the first time I had ever laid eyes on them). He showed me all of the abnormalities and explained them as clearly as he possibly could given the fact that neurology is not his specialty. He explained that the calcium deposits that had been mentioned a while back are indicitive of possible major motor difficulties, especially in the legs. He also showed me the back of his brain. There is a cyst of spinal fluid in the back of his brain in an area that controls major movement and equilibreum. This too can cause difficulties. All in all, Korbin has been dealt with a double whammy in his brain on top of being 9 weeks early which could also work against his development. He also still has the enlarged ventricals in the top of his brain that are filled with fluid. There is still the possibility of surgery but we are in the clear for now. Korbin's Dr. mentioned that the pediatric neurologist in the area is comprable to the Dr. in New Orleans so we are going to get an appointment with her and see how that goes. The neurologist at Ochsners may be good but I was not overly comfortable with him and he did a poor job of explaining things to me. We are hoping to get in with the Dr. here soon so we may be able to get some answers.
All other aside, Korbin is doing great growth wise. As of yesterday he weighs 5 lbs 10 ozs. He gained a little less than an ounce a day which is a little on the low side of normal but okay. His head is growing at a normal rate which is wonderful since that could be our only indicator of a problem in his head. He has gotten the hang of taking his bottles although there are times that I have to "talk him into it" and fight with him to put his tongue down so he can suck properly. I have managed to get into contact with this states early intervention program and they will be evaluating him today. Although he will likely test to be a "normal" newborn, his condition should automatically qualify him. This program will make available to us speech therapists, occupational therapists and physical therapists. This program is intended to try and work on any development problems early so we can try and "fix" them before he gets older and makes it more difficult.
Being home has been in itself interesting. With a 5 year old who wants to help.....a lot, and a 2 year old for whom the world revolves around (in her mind anyway) who thinks Korbin is nothing more than a noisy baby doll. The first few days were nerve racking but thankfully, the "new" is wearing off a bit so they are leaving him alone more. The 2 year old is getting a little braver and trying to "get" Korbin but we are working on that. I do find myself watching the older two running around and playing and praying that Korbin will be able to run around with them before too long. It is hard not to look into his eyes and wonder what life is going to bring for him but all we can do is pray for him and more so pray for us to have the strength and patience to help him be the best he can be. I know that if he does have any issues, they will likely worry me more than they will him so I will need the strength to be strong if for no other reason for him.
Thank you all for your prayers. I know I haven't updated much lately and I will try to get better about that. It will probably not be daily but I will try to update weekly, even if it only about the little things like the real smile he did the other day!!!!! :0) He is precious and I know that all of you who have been praying so hard for our family would love updates on our little miracle and I feel that it is the least I can do. Thank you all again!
Sabrina
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