It has once again been forever since I have written on here!! I have been scolded by a few about it too!! Sorry:) Our house hold has thankfully been so healthy this winter season so far. No colds or stomach bugs or anything!! (knock on wood) This has been a blessing since a few doctors have us terrified of Kaden getting sick. Kaden will be two soon!! I just can't believe it!! He is still such a little guy. And since he is soo behind developmentally it still seems like we have a tiny baby in the house. Its heartbreaking to see time go by and yet Kaden stays the same. I have learned alot about cerebral palsy in the last year. I think at first we really focused on learning alot about his epilepsy and heart problems. Once those were under control we started learning everything we could about the CP (cerebral palsy). It didn't take us long to see that the CP was the biggest of all his problems. I didn't know at the time how it would affect just about everything!! Which leads me to my title---Eat, Sleep and Number 2. This is all I feel like we have been focusing on for the last few months!! The CP makes simple things we normally take for granted so difficult for my little guy.
The oral motor problems make eating difficult for him. We have had therapy to help with eating for over a year now. We have seen some progress, but its slow. He now will usually eat a small bowl of baby food once or twice a day. I cant say he enjoys it but he usually will swallow it. When we feed him his bottles we have to clutch up under his chin so he can keep his suction on the nipple. We have gotten used to doing it this way but if anybody else tries to feed him its very awkward for them. He is still very small for his age. Just 19lbs 6 oz and 28 inches long.
Sleep is still a tough one around here!! The brain damage can cause kids to not be able to stay in a deep sleep. Kaden gets 4 medications at bedtime to get him to sleep. This will usually get him to sleep till 3am. Then hes up and he is medicated again! Sometimes he goes back to sleep and sometimes he just doesn't!! Its crazy!! And during the day, when its nap time, we have to medicate him to sleep too!!
And now for the whole number 2 issue! This is yet again another CP issue. With the low muscle tone CP kids have difficulty contracting their abdominal muscles to produce the pressure needed for bowel movements. So to make a long story short, he is pretty much completely dependent on suppositories to go. We also give him Metamucil and lactulose, but these just don't seem to do anything.
I am glad that at the present time sleeping, eating and pooping are our biggest problems but at the same time it really hits home the reality of these life long struggles my son faces. These are simple things that are usually taken for granted. Kaden is happy and loved by so many!! That is what gets me threw the hard days. Knowing that and seeing that beautiful smile!!