This blog was created to chronicle the life of Jacob Ryan Fahmer - a beautiful gift of God born with a genetic disorder known as Trisomy 18.
January 14, 2008 - May 31, 2008
Tuesday, February 12, 2008
((My brother Joshua took this picture of me... not bad for a 5 year old, huh?)) What a night! I'm spoiled... I decided that I didn't want to sleep alone in my bed so I fussed until Daddy gave in and took me to the couch with him (which only took about 2 seconds)! We slept on the couch until early morning but then we had to get all packed up in that nasty car seat (have I mentioned that I hate the car seat?) and head off to the cardiologist office again. This time not only did I see the cardiologist, but my pediatrician, my home nurse and the lady from CompassionNet were there! They all just wanted to get together and sit around a big table and talk about me. Can you blame them? I am the hottest blog writer on the internet after all.
I continue to freak people out. This time it was my oldest brother. Mommy and Daddy left me alone with Joshua for a few minutes while they got ready to leave and somehow we managed to get my feeding tube out and spew my stomach contents "all over the couch," (according to Joshua). Joshua was pretty upset because he thought he did it, but honestly, I think I hooked it with my finger and jogged it out myself. I hate that thing.
The best part of that whole experience was that Mommy decided to leave me wireless for a better portion of the morning. No pulse/ox connection and no feeding tube! I could go out into the world like everyother 4 pound baby... or maybe not....anyways... once we came home mommy let me suck on a bottle nipple that actually had something in it ... it wasn't that dumb pacifier... I finally found the GOODNESS! I drank about 17 cc's without throwing up!
Gramma watched Joshua and Jonathan while we were gone and hung around until Buscia and Tom came to visit. They braved the nasty weather to come see me and brought Costanzo rolls for lunch! MMMmmmm!
Ms. Erin came and dropped off dinner for the family. They all really enjoyed it. Joshua especially enjoyed the yummy cupcakes.
My cardiologist is not a fan of my pulse/ox machine and he told Mommy and Daddy to "screw the pulse/ox monitor" ...whatever that means. So whatever it means, Mommy has left me unplugged all day! No more annoying beeping everytime I stop to pass gas! However, I will miss watching Daddy trip over it everytime he tries to move me around the house. Mommy says I'll still have to be on it throughout the night and from time to time to check on my progress but this way people can look at me instead of some silly machine.
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."