Hello, my name is Clayton, and I am Joey's little brother. I was born on July 9, 2002. My mommy and daddy were so happy to have a new bundle of joy in their lives. The day I was born I was struggling to breathe so the doctors checked me over and they diagnosed me with Group-B Strep. After I fought my way through that and being hospitalized for ten days I went home and seemed to be a healthy baby. I learned to roll over, sit up on my own, and I even learned to hold my own bottle. I did alot more than my older brother so my parents weren't to concerned, but they wanted to have me tested anyway since there was something wrong with my big brother. So when I was about 5 months old they did a skin biopsy on me and my parents never heard anything on that, so they did an eye exam. During the eye exam they noticed cherry red spots which they did not see in my brothers eyes. They gave mommy and daddy a list of possibilities as to what could be wrong with me. They did blood work and determined that I had Sandhoff Disease. I continued to sit up on my own and roll over. Around my first birthday, which was July 9th, 2003, I started slowing down, I stopped rolling over and couldn't sit up anymore. So mommy and daddy knew I was getting weaker. I kept getting weaker and I lost control of mostly everything. I could barely hold myself up, but I could still move my arms, legs, and I could still move my head from side to side. When I was 18 months old, I scared my parents and I started having seizures. I was automatically put on Phenobarbital, but I kept having seizures, so they added Tegretol about a month later. Now I am 20 months old and I am doing good. I have been congested and getting sore when mommy and daddy move me, but they took me to the doctors and the doctors said that I look good and sound good. I had a very good second birthday and I am still doing good. On December 23, 2004 my mommy and daddy decided to get the NG tube for me because I have been having trouble when I drink liquids. I would choke everytime I would drink, but I could still eat the baby food by mouth. On January 21, 2005 I was hospitalized with Strep Throat, Pneumonia, and RSV. I was pretty bad, but I was strong and I pulled my way through it all. Now it is February 25, 2005 and I am still doing really good, but now all my feedings are through my NG tube.
Now it is November 2, 2005 and I am 3 years and almost 4 months old. Sorry it has taken so long to write but we have been extremely busy. I was having severe convulsions so they started a new medication called Tranxene. I have been in the hospital numerous times for pneumonia that they thought, but come to find out when they did the x-ray the spot on my lungs were from me not taking in deep enough breaths. My oxygen levels are still wonderful, I haven't needed any oxygen. I am getting really thin because my muscles have detiorated, but I am maintaing my weight, and my general health is good. My mommy and daddy have finally decided on Hospice. I have a nurse come out twice a week to check me, and she is wonderful.
Hi all, today is January 9, 2006 and Clayton has turned 3 1/2 years old today. We have had some major blessings from Clayton. All of our holidays were amazing since Clayton was here to celebrate. We had a very good Thanksgiving and Christmas with alot of family and friends. (you can view the pages from those holidays). Then we got together with Joe's counsin and brought in the New Year with Clayton in our arms, it was amazing to bring the New Year in with him knowing that he has made it to 2006. We don't know what this year is going to bring, but whatever happens we are greatful for everything Clayton has gave us and we are very proud of him for making it this far. We will keep posting to let you know how Clayton is doing, so check back often for some more news on him.
It is March 15, 2006 and Clayton is still here with us!! We have had some scares from him, but he is doing amazing. About 2 weeks ago he woke up and he was so cold that we couldn't get a temperature from him. So we were all so scared that we took him in to the doctor and his temperature there was 91.6 which is extremely low. His doctor told us that he has probably entered the final stage of the disease. He has been having more seizures off and on, but his oxygen is still great. Congestion is a problem, we are having to use the suction machine more often. Now his temp. has been up and he is still fighting cause he is a strong fighter.
It is now May 13, 2006 and Clayton is so amazing!!!! Sorry I haven't written in awhile, but we have been extremely busy. Clayton turned 3 years and 10 months on the 9th, he also was exactly 1400 days old too. We took Clayton to the NTSAD conference in April and he did so wonderful. Everyone was amazed to see him still fighting. We have had 3 very bad scares from him. On April 23 he practically choked to death, he was choking so bad that he quit breathing and his oxygen level got to 17 which is extremely low for those that don't know that. Joe had to do a little CPR to get him going again. Then he fought for 2 weeks and did it again, then he had another one May 11. He has scared us so bad, but he has pulled through all of these scares and is still here fighting this devastaing disease.
Ok, I am extremely sorry that I have not written in so long. Clayton has been keeping us very busy and on our toes. It is now August 25, 2006 and Clayton turned 4 years old on July 9th which was a huge amazement. He is the first child with Sandhoff Disease that we know of to turn 4 years old. He has fought so much and showed everyone that cares for him that he is a strong fighter and that anything can happen if you believe in them. Clayton has been fighting in the hospital since July 31st. He came in with an extremely high fever for him and slight pneumonia. Then he quit urinating on his own so we started catherizing him. He has been vomiting off and on so they have changed his feeding schedule and rates. He was on a 14 day supply of Rosefin through I V. He got off that for 4 days and started up on his respiratory problems. They started him on Unison through I V and wants it to run 14 days also. It has been a long journey this time in the hospital, it seems like I have been riding a roller coaster for the last 4 weeks. Clayton is just up and down, but he continues to fight. Please just pray for him and I will keep posting as he continues to fight.
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