Hydrocephalus WALK

Thank you everyone who donated and walked with TEAM KAIDEN!! We love you all and thank you so much for the support! I will be posting a team picture soon.

Hi All!

I know it has been so long since I have blogged but now is the time to check back in and update everyone on the news. Kaiden is doing amazing everyday. We had a fantastic summer and went on our first Disneyland trip. His older sister came with us (we surprised her) and she had a blast. Back in June, Kaiden was thought to have a seizure. We still are not for sure if it was one, but when the EEG was done they saw no signs. According to the Neurologist,he could have just not been firing signs of a seizure at that moment, and we are to video tape any strange behaviors by him when they happen again. So far nothing! Thank god!

Kaiden was prescribed braces for his little feet about a two weeks ago and he is having a blast trying to walk! He is talking steps and that is such a huge improvement for him. I just want to shove it in all the Dr.'s faces that he is walking. He still needs to learn to stand on his own and really get good balance on his feet, but he will get there. He has to wear 2 sizes too big in shoes and an X Wide! He is having trouble just maneuvering around with the braces on.

We had a neurosurgeon appointment last week and she reminded me that he has not had a hospital stay for 1 year now! Well minus the 3 day stay for throwing up, which we thought was a shunt malfunction that turned into a allergy to milk. But no brain surgeries needed! We are now anticipating the eye surgery in November, I cant wait for him to have better sight and not be cross eyed anymore. They say he will likely have many eye surgeries in his life, but they are very safe.

We are coming up on the walk next month everyone! We hope to see a great turn out from all our friends and family. We are super excited to see our out of town guests come for this!

I will start to write more on my blog for now on, for now I am going to hit the books. School is very time consuming lately.

To join Team Kaiden and the Hydrocephalus WALK please click the link below:
http://walk4hydro.kintera.org/faf/r.asp?t=4&i=421243&u=421243-292865562

HYDROCEPHALUS WALK

Here is a link to Team Kaiden's page......

Please donate or join!

http://walk4hydro.kintera.org/faf/r.asp?t=4&i=421243&u=421243-292865562&e=3424002868

My adorable bundle of happiness.....

It has been forever it seems since I have written on this blog. I have lots to talk about so I figured now would be a good time.

This last few months we have been fantastic! Kaiden did manage to get sick a few months ago and we automatically thought it was his shunt. After constant contact with his Neurosurgeon for a weekend, a full three days of medication for his head pressure, and a two day hospital admission, we discovered it was a milk intolerance. I know that it sounds strange to some of you that we would rush our son to the emergency room for vomiting but that is the signs of a possible shunt malfunction, and that could be deadly. After leaving the hospital we went straight to his Pediatrician because he was continuing to vomit after we left, she had us switch to rice milk and it has been great ever since!

Kaiden has been improving immensely over the last three months. He now is walking around with his walker like a pro, and also bracing himself when he falls forward. Normally he has no reaction when he fell over from the sitting position or standing up. He also is SO close to pulling to stand and when you stand him up he cruises around furniture! After spending a lot of time with babies both his age and a few months younger than him, I begin to realize that he is pretty delayed. It is the hardest thing for his therapists to evaluate him in the 6 to 7 month range and then in his speech he is 0-4 months range. I seem to be having a hard time accepting his disability and it kills me to watch my son struggle to do the most basic things. I just hope that he can catch up developmentally someday. At times I sit and watch him and he knows what toys go with what and he puts items in a box and takes them out with ease. He also has a stubborn temper when he wants something and can not physically move get it. This tells me he understands and will pull through this delay someday, or I hope.

We now have decided to take legal action against Kaiser Permenante for the neglect I received during my pregnancy. I did not want to do this but after hearing from someone that they had sever issues with her labor and took action, we decided it was time. I am not in this to get rich but I am doing this for my son and his future. We know that we are going to have to put him in private schools that cater to disabled children, and that will not be cheap. I just want my son to have the best experience in life and not be forgotten in a classroom.

His therapists are still wonderful as ever and he waves when we walk in the building and smiles and all the girls in there. He knows who people are and where we are if he has been there a few times before. His sensory issues are still an issue. Yesterday for Easter we were at a friends house and they had three large toy horses. When Kaiden went near them he got bad tremors. He would not touch the hair on the horses but he would smack his hand on the plastic body with no issue. He is very sensitive to different textures, he seems to like hard plastic and soft things but anything like doll hair or rubber he freaks out. We brought home a toy with Velcro on it and he would not even look at the toy! It took a good month of having the toy right next to him, then finally he gradually played with it. Now he has no problem with it. When I find he has a sensitivity to something I always expose him to it, and then eventually he is fine.

When we received the last negative DNA results from his Geneticist we were very happy, but then he called and asked if we could do other tests because he is determined to find out what is wrong. So when he got an upper G.I. due to the vomiting he was experiencing, we went and got his blood drawn as well. After two trips to the hospital because they could not get a vein, we finally got blood. So in the next week we will have some results from that and I hope it will give us some answers.

On a good note.....Alexis (Kaiden's sister) is coming to visit for 8 weeks in June! We are planning a trip to Disneyland and lots of fun things planned this summer! She is so excited to see her brother that every time she talks to her dad on the phone she asked to speak to him. It is so cute! She is such a great help to me when she is here and it makes things a lot happier in the house.

So until then......

And The Results Are In!

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.

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!