Tuesday, October 20, 2009

Hydrocephalus WALK 2009 Pictures

A busy few months

My Stick Family from WiddlyTinks.com

It has been such a bust couple of months! Chris and I are busy planning our wedding and have been consumed with Kaiden's physical therapy and EPU appointments every week. Kaiden is growing up so much everyday and he is getting so big. In the last few month he has rolled over from his back to stomach and he is getting in that crawling position. I just cant wait until he starts crawling and becoming more mobile. Since going to the EPU (exceptional parents unlimited) appointments, we have gained such a better prospective of Kaiden's condition and I have become slightly more positive about his development. His teacher that we see on Wednesdays, Stacy, is so wonderful with him. She is just outspoken as I am and she makes him laugh all hour. I feel like it is just as much a session for me as it is for Kaiden some days. She will sit and talk with me about how Chris and I am doing at home and how we are dealing with Kaiden.

Since Kaiden's last surgery, I have had a very hard time dealing with the fact that my son is developmentally delayed and is functioning as a 6 month old would be. I think a lot of mothers dont really understand where I am coming from and at times I feel that I may never have a "normal" son. Although I must say that since I have joined MOMS club of Fresno I have gained wonderful friendships that have really brightened my spirits tremendously. Sometimes I feel like I just want to break down and cry, hide out at home for days, and not see anyone unless I absolutely have to. But my good friends from MOMS club are there to cheer me up when they may not even know it.

Well enough about me....lets talk about Kaiden. It seems that since his last surgery he is a much happier baby. He is now babbling more, cooing occasionally, and rolling around more than he ever has. He seems more loose in his legs and hands, they used to be tense and stiff. He is getting such a great personality! Laughing all the time and mimicking you when you do something. I am teaching him sign language and he seems to understand what "bottle" means. Just this last week he reached out for me when I put my hands out for him. That had to be the most heart warming thing I have experienced ever!

This last Sunday we attended our fundraiser for the Hydrocephalus Association and I was so excited when I saw the turn out for Team Kaiden! We had 20 people on our team and our very best friends and family drove all the way from Las Vegas to walk with us. We all helped to raise over 15,000 dollars and it couldn't have been a better turn out. Thank you to everyone who donated and walked with us. I was taken back by the amount of people that I went to high school with and haven't talked to in 10 years that donated and wanted to know about hydrocephalus. it makes me so happy when people want to know what Hydrocephalus is and how Kaiden is affected by this. We had such a great day and I cant wait until next years walk.

Kaiden is also missing his Corpus Callosum, which is the main nerves that connect your left brain to your right brain and is responsible for all major motor skills and coordination, also it controls memory, learning, and speech. I am getting involved in the NODCC (National Organization for Disorders of the Corpus Callosum) and hope to start some fundraising in our area and really help to get the word out about this condition. Most people have no clue what the Corpus Callosum does, and most of Kaiden's delays are due to this. I just hope that by giving information to the public then that in someway can help me deal with this as well. By just going to the walk this weekend I met so many people who have children with Hydrocephalus and it gave me such good insight on Kaiden and what he is going through. One of the children that we know through the fundraiser, Oliver, is 18 months and has just started cruising along furniture. his mother and I were talking and she said that she notices that when Oliver is learning something new physically that he stops babbling and talking. That just amazed me because that is what Kaiden does. Kaiden is never around any babies that are close to him in age and when he is the kids seem to be running circles around him. When Kaiden saw Oliver, Oliver gave him a big hug and he had no idea what was going on! But he was smiling and having a baby conversation with him, it was so awesome to see that. I just wish I could talk to others like me with children with Hydrocephalus and Agenesis Corpus Callosum all the time to get information and stories from others.

We are still waiting on our results from the genetics testing that Kaiden had done. The Geneticist looked at all of Kaiden symptoms, physical traits and then looked at our family history and discovered that it may be due to an L1 Cam disorder in his genes. This would have been passed down from my mother who got it from her mother and only gets passed to our children by either having a boy with all the traits, having a boy who is normal, having a girl that carries the gene and can pass it to her children, or having a girl without the gene and does pass it to her children. So my mother had a boy and a girl ( myself ) and my brother has no medical problem but passed the gene to me, who in turn had my son and he was born with the gene. If we get a positive result back on this testing, my husband and I will have to make the decision on whether to have more children or not. The gene trait has an acronym called CRASH that they based Kaiden's findings on. Corpus callosum, Retardation, Adjucted thumbs, Spasticity ( your walking pattern), and Hydrocephalus. Obviously Kaiden has Hydrocephalus, Corpus Callosum is missing, he has adjuncted thumbs, and the retardation we cant really tell yet because he is only 10 months, and the spasticity is to be determined when he starts walking. Now he has been officially diagnosed with the L1 Cam disorder but if he does then things will make a lot of sense. Until then I am waiting on pins and needles until the genetic testing comes back. It should be a few more weeks.
Last Wednesday at our EPU appointment I as given a book on neurological disorders and I saw that when you have brain trauma such as surgery it can affect the nerves that control speech, movement of all your fingers, toes, memory and more. They had a picture of the brain open and what nerves moved your thumbs, middle finger etc. It made sense that this could be why Kaiden does certain things the way he does. So if the genetic tests come back negative then this could be why he does things too. Man it is so up in the air and I guess I could run myself ragged thinking about it!

So the next few weeks will be filled with joy from our wedding, and more doctors appointments, therapy, and test results so I will keep everyone posted! Thanks for supporting us!