Tuesday, December 22, 2009
It's been a while since I have updated the blog, but with all of the action going on these past few months, I have lots to write about. First off, Chris and I finally had our wedding in Lake Havasu and it was amazing! So beautiful and the pictures turned out fantastic! Kaiden looked so handsome and his sister Alexis looked beautiful too. The day before our wedding as I was running around getting all the last minute touches done, we received a phone call from the genetisist at Childrens Hospital. They had sent the blood work that Kaiden had done to New York and it took over 8 weeks to get results back. The Dr. said that they checked the L1 gene for the sequencing and structure...I may be leaving something out but it is very confusing to me. The results came back negative. Which means that I do not carry the L1 cam gene which I can pass to my children, which cause Hydrocephalus and Agenesis of the Corpus Callosum, along with other complications. This is huge for Chris and I. We could not imagine doing this again and going through all this with another child. The testing isn't over yet either, they are sending another panel to check the details of the gene and make sure there is no missing parts to it. This could be the answer to alot of Kaiden's issues with his hands and things. But everyday I see him getting stronger and stronger. Last week he was not as mobile as he is today, so slowly but surely he will crawl and walk. I just wish it was sooner than later.
When we were driving back home from Lake Havasu I noticed that Kaiden was sitting really funny. When I went to change his diaper I noticed that his testicles were HUGE! The next morning Chris took him to the doctor and they sent us to Childrens for an ultrasound. The results found an Hernia and the fluid blockage is called a Hydroseal, which is common for kids with shunts. So off we go, on January 13th for a Hernia surgery. Oh, I am so sick of Childrens and surgery! Luckily it is a day procedure and we will be able to come home that same day. The day before Kaiden's birthday, December 9th, he had an MRI to check his shunt and make sure everything is running smoothly. He did terrible on the anesthesia, got sick and threw up all day. But as always was a happy smiling little baby. The next day he had his birthday party and had a blast so I think I am worse than him some days.
The results turned out good but we have an official appointment next month for the details. If all these appointments were not enough, we had a Optometry appointment too. I love Dr. Wood and he has great experience with children with neurological issues. I have been noticing that since his last surgery that his left eye was turning in toward his nose. Mostly when he was looking at anything up close or was trying to focus on things. They had to test his optic nerve again, which is hell for me. I had to pin him down by his arms and legs and they pried his eyes open. This was no fun! The doctor said since he has had so much brain trauma from surgeries that the nerves have been severly damaged in his left eye, causing him not to use it. Most children with neuro disorders have vision issues later, so this is nothing unusual. He now has to wear a patch for a few hours a day and has been prescribed eye glasses that he must wear all day. Well, I haven't gotten the glasses yet so let's see how difficult that will be. As far as the patch, he seems to do fine with it. He hates when I put it on, but once there, he doesn't seem to mind it. According to the Dr., nerves grow 1mm per day. Also, he said that per your age, you have a1 week to improve vision. So once we start using the glasses we should see improvement within a week. If by the time we return in 3 months the eye is still turning in, he will most likely need surgery to repair it. If we do not fix it then he will end up with a severly lazy eye for his entire life. So let's all cross our fingers that this works.
Its now a few days before Christmas and he has very bad cold. He has two teeth breaking through skin so that is not making it any better. He just needs to get over this hump so we can feel much better. I am hoping that this new year will bring so much for Kaiden. I see him growing and getting so strong every day and hope that he learns that those legs of his actually do something and he can use them to crawl and walk. He is so cute and he brings the most amazing joy to our lives everyday. His sister Alexis is coming to visit the day after Christmas, that always brings happiness to our home. She just gets him going. She told Chris the other day that all we have to do is stand him up and walk with him and he will be walking after that. :) She is such a doll.
I hope everyone has a wonderful Christmas and great New Year, and I will be writing after his surgery next month to update everyone. Thanks for all your support.