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Wednesday, October 12, 2011

Neurosurgery Appointment

Kadyn has his Neurosurgery appointment. I actually enjoy going to them, minus the fact that your 10am appointment means you most likely won't be seen until 11 or 12. It's no big deal though. It feels comfortable there in away. I am surrounded by parents, and adults who understand. (Childrens Hospital keeps their patients for life) We are all for a check up or for those who are sick and think their shunt may not be working. It seems that every time I go there which is like once a year, I meet someone new with an amazing story. Although I can not remember their names, they have a huge impact on me.

One parent I talked to was talking about her daughter. She was off playing at this time though, which was a breath of fresh air. One day that can be Kadyn off playing, and I'll enjoy every minute of it. Her daughter is 28, and has only had one shunt issue. I don't really like talking about all of Kadyn's issues because I honestly do not like anyone feeling bad for him or I. I love telling Kadyn's story but to an extent. Having people go Aww, oh my goodness, or I am so sorry, it bothers me more than when people stare at me. I guess I don't want anyone to feel sorry for me, or Kadyn. My son isn't suffering. He is the happiest of children I have ever met. Although at times he can be cranky or whiny most of the time he is smiling and laughing. Getting asked, How do you do it, is another one. Although I guess, it's just normal for someone to think that. My only answer to them is, what other choice do I have but to just do it. That is my son. I chose to have him, so I chose to do what I do. I don't regret a single day that went by or goes by. You never know what you can handle, or what you can do until you have no choice but to. I have chosen not to let it get me down. Staying strong for Kadyn's sake is what I am here for. He needs me to keep my head above it all.

So anyways back to the appointment.
His Surgeon said that Kadyn looks amazing. That he is really impressed with how well he was doing. Kadyn had socks on that said Super Kid which his Surgeon mentioned that Kadyn is more than a super kid. He then told me that Kadyn medically should not be alive, but he is here and he is proving everyone wrong. He pulled up his first MRI ever and showed how very little brain matter was present. He said that they really had to look hard to see it. Then his last CT Scan showed so much of it bounced back.  He also mentioned that I should get Kadyn a Handicap sign for our car. I know Kadyn has been well qualified for it for a long time now. Although I never really wanted it. I can walk just fine. I, myself am not handicapped or anything. His Neurosurgeon said that even though you can walk just fine, Kadyn needs out weigh mine. He said that winter time would be the only time he would stress me using it. Him being in the cold is bad and he needs to be closer. I agreed and I am going to print the document off my computer and then hand it to the office on Monday since we have to be there anyways for Neurology.

Neurology is going to be interesting. Although I really don't believe in sleeping medication for children. Kadyn can go days without sleeping. Which leads to a very tired and nonfunctional me. For my sake and his health and mine I need to find something other than Melatonin as that will put him to sleep but not keep him asleep. I think 2-3 hours a night of sleep is not good enough. So I will bring this up to her. Also he sees his dietitian Monday also. I need to bring up to her how Kadyn has lost 2 pounds and has not really grown in 2 years. He has been in the same size clothing (24mo) for a long time now. Kadyn seems long, which he is, but he has a long torso and he is super skinny. I am hoping maybe an increase on calories will help him out with gaining weight.

I'll know more Monday I guess :D