Saturday, August 15, 2009

Help is on it's way!

Hi everyone! The last few days have been extremely exhausting but for the first time in a long while we have great news!! On Friday we got the chance to tour the EPU facility that Kaiden will be going to for all of his therapy. The place is a wonderful. The staff is amazing, kind, and caring. When we first walked in the beautiful building we were greeted with such a warm smile and genuine hello. The director of new patients came and introduced herself and escorted us into a conference room. There she told us about the history of the organization and how everything works. She let us ask many questions and address our concerns. The woman also was able to relate to my feelings of this whole experience because her daughter had Leukemia and she was living in and out of hospitals, going to weekly Dr. appointments, and stressing about what was going to happen next.

She was very excited to have us see all the rooms that Kaiden will be in and what will happen. She first took us to the therapy rooms where he will be getting one on one Physical Therapy, Occupational Therapy, and Speech Therapy. Then he will be taken into the group room where all the children are from newborn to 18 months. They all have either severe handicaps, mental retardation, or developmental delays such as Kaiden. They have a structured setting where they play, have snack, learn sign language, and sing songs. It was so amazing to see kids that were of all different backgrounds together as one, and the sign language was so amazing to see! Since Kaiden has a problem communicating for his age, I think that the signing will be a great alternative for him when we are trying to teach him to speak more. As it stands now he is very quiet, moves his lips and nothing comes out, or he yells very loud.

When Kaiden is at the facility he will be there 4 hours a day and I am not allowed to leave the building. When he is in class I am welcome to join him or they have support groups my husband and I can attend, a library we can research and read about our son's condition, and also classes on how to be an exceptional parent ( hence the name Exceptional Parents Unlimited EPU).
We are so excited to have Kaiden start here and the only down fall is that he is on a waiting list and it could be months before we start. Let's pray it wont be too long!

This morning we had a Pediatric Opthamalogist appointment for Kaiden and that went great as well. What I didn't realize is that they had to dilate his eyes and that was hard just to watch. Now, before I go on I will tell you my husband does all the shots and needles with my son, NOT me! I have to leave the room, it just makes me cry for him. But this time I stayed and watched and I hated it. They bandaged his eyes and put a light in them, and as the assistant was taking off the bandage she scratched his face and he started bleeding. Then she pins him down as my husband helped her and put a numbing agent in his eye. He screamed and then she put the next set of drops in. We were told to wait in the waiting room so his eyes can start to dilate and get blurry. I remember what it feels like and I can only imagine what it was like for my 8 month old. After a half hour past we went back into the room and the Dr. came to examine him. They had all sorts of lights and lenses and I still cant figure out how he was able to look at anything because Kaiden was squirming the whole time. Lastly they had to check his optic nerve for any damage due to his ACC, and that was a pain. First the Dr. geared up with the strangest looking helmet I have ever seen and had my husband pin him down in a "full nelson" and I was at his feet pinning those down. The Dr. pried his eye lids open and put an extremely bright light in them and Kaiden was furious. I haven't heard him scream like that ever, and he even had a needle put in his head once with no numbing and that scream wasn't anything like this one. But despite all the drama he had no vision problems, besides being slightly farsighted. We have to keep going to these checkups for some time so we will be returning there in 4 months. Joy.

So since the last few days were full of adventure we will be relaxing tomorrow by the pool and having a BBQ with some friends, because come Monday at 8 AM we will be admitting Kaiden into Children's Hospital of Madera for a swallowing test. He has to drink a barium and they will xray his swallowing patterns to see what is causing him to choke all the time. Once again joy.

I will keep everyone posted on those results in a few days and in the meantime.... here is a link to the Hydrocephalus WALK that we are participating in. Its in October and we cant wait. We need all the support we can get for this organization so they can find a cure, research, and provide grants to Dr.'s who want to study hydrocephalus throughout there careers. We are very passionate about this cause and would love for everyone to donate or walk with us. It is going to be such a great day! Kaiden's brain surgeon is the honorable chairman and we couldn't be happier!

I am off to bed since it is almost midnight and sorry for any typos on this blog... I am exhausted!

1 comment:

  1. You are so strong! I couldn't immagine having to watch your baby go through tests and stuff like that. I am so glad to have met you. Please feel free to lean on any of us moms because sometimes it helps us to feel better to just talk. You are an awesome mommy and Kaiden is so lucky to have you!!