Monday, April 5, 2010
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......