Wednesday, May 5, 2010

The word "stable" is a good thing!

Yep! That pretty much sums up Kaden lately. Which is good! I can honestly say that in his 13 months of life this is the calmest things have been. There have been no seizures right now and the blood pressure is under control. At one time in January Kaden took 24 syringes of medication a day!! We are down to only 7 a day!! That is a blessing!!! Trying to get that much medicine down him was horrible!! We haven't even had any doctors appointments in a while.......crazy! We do see everyone though the beginning of June. We see cardiology, nephrology, neurology , rehab and audiology all in a 2 week span. Kaden has PT and OT and special ed teachers out to the house a few times a week. Kaden also started attending class in the county's special ed babies and toddlers class once a week. The special needs of the kids in this class really vary so it makes it kinda there are no kids with CP like Kaden. I have mixed feelings on this class. I sometimes feel like Kaden just doesn't get anything out of it. And sometimes I have left there feeling horrible and devastated all over again. Its hard when your in a class with special education kids and their parents and I feel sympathetic glances come our way over and over! Yes, I know Kaden is the most complex in his class, I know he has more disabilities than the other kids. But somehow being there in that class just screams to me how bad things really are. I have alot of bad days still in dealing with this reality.......sometimes I wonder if I ever will completely except it and be at peace.
We have had to face hard facts regarding our future as a family. We are trying to prepare for the future and we know whatever is easiest for Kaden will be easiest for our family. The big topic recently is our house. We just bought this farm 3 years ago. Brandon gutted the house to the studs and we remodeled completely. But as far as assessabilityfor a person in a wheelchair goes.......its about the worst there could ever be!! There are stairs to get into the house at both entrances and there is only one bedroom downstairs(which is Kadens). So one of us slept on the couch for a full year!! Taking Kaden to an upstairs room sounds like a good idea but its not that easy. First of all no one else would get any sleep. He still is up many times a night crying and being fussy. Second of all, to take him up and down those steep stairs is dangerous. It will only get worse as he gets older too. I want Kaden to be able to have access to his brothers and sisters rooms as he gets older. With this house that is not a possibility. So to make a long story short, we are going to build! It wont be for a while though. We are planning on putting the house up for sale next year. I no longer have time for my horses or other animals. I have longingly looked out the window at them for the last year. I am still dealing with this sometimes painful truth-----life sometimes takes you in a direction you had never planned on going. But I am here and I am learning to cope in this new world!