10 weeks

This week has been fairly busy. I had my visit with the local neurologist only to discover that I will still need to go to New Orleans. It turns out that I was seeing the neurosurgeon in New Orleans. Nothing really new was discovered at the neurologist since we are still not able to have an MRI due to Korbin's age and size and developmentally, we are not able to tell much right now either. At the pediatrician today everything looked good except for weight gain. Korbin gained 10 ozs in 14 days but the Dr. really was wanting him to gain 14 ozs. We are changing how I make his formula in order to make it 24 calories. If he doesn't do well with the new mixture then we will have to change his formula all together to a 24 cal formula. The Dr. also wants to check and make sure he is swallowing properly when he is eating. We have an appointment with the speech therapist to do a scan of him swallowing next week to hopefully rule out any problems in that area. Right now, we are giving him the benefit of the doubt and just going to try increasing his calories and logging his exact intake in ounces each day. If he doesn't start packing on the pounds soon, we will have to resort to a "last resort" option which is defintiely not the most appealing of options. If he doesn't start making some progress we will have to begin talking about a feeding tube to get him to gain some weight. I am really hoping it doesn't come to that because that thought is terrible. On a positive note though, his movement and tone looked good today. There was one excersise that the Dr. performed that Korbin did well on but the Dr said he could have done better but we are just going to keep an eye on it. We discussed in detail infromation on seizures since Korbin is at a high risk of having them. We will go back in 2 weeks for yet another weight check and another measure of his head (which is still growing normally). It seems as though the first weeks were just a precursor of things to come. Please continue to keep us in your prayers.
Sabrina

9 Weeks old

Korbin's due date came and went this week. Looking at him and knowing that he was technically just supposed to be born and that he is instead 2 months old puts things in perspective. Korbin had his evaluation with our states early intervention program last week. This program is designed to notice any developmental delays early so we can work on them early before the child is put too far behind. Because of his prematurity, they judge him by his adjusted age which is a newborn right now. As expected, he tested as a newborn in most areas and a 1 month old in others. He is not considered delayed since adjusted he is just now a newborn. He still qualified however due to his condition. We will be having someone come in once a week to work with him and if later on down the line it looks as though he needs physical therapy or even speech therapy, they will bring someone in to help. I believe this program will be very helpful.

Next week, we will be visiting the local neurologist. I will then decide if I would like to continue going to New Orleans to see the Dr. there or just stay here locally. I am also hoping that I will have a better understanding of everything after visiting her. We will also be having another visit to the pediatrician next week. He wants to check Korbin's head size, weight and evaluate his eating before we try and plan a vacation. I had spoken with the Dr. the other day and he asked me about Korbin's intake. When I told him the amount he was taking, he told me that depending on his weight gain when he sees him next, and if he hasn't increased his feeds, he may want to do another scan of his head. He was okay with the weight gain on the last visit but it was on the low end of normal. We also may need to change the mixture of his formula to increase calories. I will find out next week what the Dr. wants to do.

I also asked the Dr. when I spoke with him if there will be a point any time soon where we won't have to worry so much about the pressure increasing in his head and a shunt being required. He told be that things could change next week or in 6 months or never. I guess the waiting game never really ends.

Sabrina

8 weeks old

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

2 weeks at home

We are so glad to be home. Korbin is doing great. At his check up (6 weeks old) he weighed 5 lbs. He is finally eating well. We are having a little trouble with reflux but other than that, he is slowly starting to tolerate more food at a time. We had our follow up with the neurologist and things look okay. They diagnosed Korbin wiht Dandy-Walker Malformation. I had never heard of it so of course as soon as I got hom I Googled it. There was a fair amount of information on it but in the end it is still a wait and see issue. We will go back to the neurologist in 3 months for another CT scan and 3 months after that we will go back for an MRI. The Dr wants to wait since he will have to be put to sleep and he is still so little and young that they want to wait. We are still monitoring his head size and just watching him for any other symptoms that trouble may be brewing. So far, aside from him being a little rotton, he is wonderful.
Sabrina