The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.
--Helen Keller
When you have come to the edge of all the light you have known and are about to step out into the darkness, FAITH is knowing one of two things will happen, you will have something to stand on or you will be taught how to fly.
Hi! My name is Jacob David. I was diagnosed with spina bifida and hydrocephalus when I was only 22 weeks old in mommy's tummy. I was born at 36 weeks on 8/8/02 weighing 8 lb 8.2 oz (cool huh?) and 21 inches long. I live with my mommy, Karla, and my daddy, Dave. I also have 2 big bubbas, Michael who is 15, and Devin who is 9. They all love me very much!
On Sept 21, 2002, when I was only 6 weeks old, I developed a gram negative UTI from the citrabacter bacteria which progressed into a severe case of meningitis, sepsis, and ventriculitis and resulted in numerous brain abcesses. I spent 5 weeks in the ICU, part of that time on a ventilator, and 3 more weeks on the regular peds floor. As if this wasn't excitement enough, it was also discovered that I have calcifications on my brain and a rare brain condition called multi-cystic encephalomalacia, which means that a large portion of my brain is actually missing and replaced with cerebral spinal fluid.
As a result, I have a shunt, and I also developed infantile spasms which is a form of epilepsy, cerebral palsy, cortical visual impairment, which means my brain has problems processing what my eyes see, Arnold Chiari Malformation, neurogenic bladder and bowel, tethered cord and syrinx in my spine, acid reflux, and extreme developmental delays. I don't do a lot of things like other 6 year olds do, but I am doing a lot of things the doctors never thought I would, like smile, laugh, and interact with others. I am one funny, sassy guy! I have no sensation below my knees, and I am unable to roll, crawl, and walk, but my trunk and head control has really improved and I like to jabber A LOT! I even got a goofy shaped head out of the deal, but it adds to my charm I think!
I take medicine for my seizures and acid reflux. I also get cathed every 4 hours. I nursed until I was 19 months old. In December 2006, I turned into an eating machine! I learned how to bite and chew without gagging on my food!
I was in the Birth to 3 and preschool programs, but now I am a big boy, and I am in 1st grade at Viking Elementary. I have PT, OT, adaptive PE, speech, vision, and adaptive technology. I go to school all day. I LOVE IT! I also have lots of doctors and nurses in La Crosse and at Mayo Clinic, Rochester, MN who think I am pretty cool!
My family knows I am a special gift from God, and He has given them the strength to take care of me! Please come back and join me on my journey!
God's Promise to Jacob
I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you. Genesis 28:15
Special Little Guy written by my bubba Michael (May not reproduce without written permission from the author)
I am a regular kid with disabilities. I wonder how it feels to be able to run and play. I hear God tell me to never give up. I see blurry things that happen around me. I want to be able to play with others the way that they do. I am a regular kid with disabilities.
I pretend I am out of my wheelchair and running around the house. I feel the urge to never give up. I touch others' hands when they say hello. I worry about nothing because of the support from friends and family. I cry when other babies scream or cry. I am a regular kid with disabilities.
I understand the meaning of life good or bad. I say to believe in the gift of God. I try to keep myself healthy. I hope that one day the world will have no bad people and they will accept the look of all. I am a regular kid with disabilities.
Journal
Saturday, November 15, 2008 8:15 PM CST
Hello everyone! I hope you are all having a great weekend. Jacob's teacher Trista and I went to a deafblind conference Thursday and Friday. The speaker was PHENOMENAL. We learned so much that would apply to Jacob and the other kids in his class. It also validated that we are doing the right things when it comes to Jacob and also gave us some ideas on how to fine tune what we are already doing with his calendar/schedule.
On Thursday morning, I got a call that Jacob wasn't feeling so hot at school. We had just been learning about how deafblind child perceive relationships with people, and wouldn't you know it, Jacob was having a hard time with Mama and Trista being gone. After I talked to him on the phone, he started laughing and seemed to feel much better. It just shows us how much he depends on us.
I was making cinnamon rolls for Michael and Devin this morning. Jacob had already eaten cereal, so I went to take him out of his highchair and get him dressed. He started hysterically crying as soon as I took the tray off. I asked him if he wanted a cinnamon roll and he stopped crying. He ate the whole stinkin' thing. LOL
Michael took his permit test today and PASSED! He will go to the DMV on Monday and get his actual permit, but he was able to take it today at the driving school. Michael wanted to go to McDonald's to "celebrate" and so we went through the drive thru on the way home. When I said, "Hamburger Kid's Meal, no pickle, and a chocolate milk," you should have heard the devious laugh from the back of the van! You know, it gets me everytime he shows me just how much he understands. He watches and listens and GETS IT. It's just so cool.
Jacob's floor in his room was buffed and the first coat of finish was put on. It looks so nice. Right now, Jacob's whole bedroom is in the dining room and our room. For those who have seen his room knows that is a lot of stuff to put elsewhere!
Thanks for the best wishes on my sleep study. I wore a pulse oximeter overnight last week, that is how they know something is wrong.
Note: The foregoing information was
authored by the patient, parent or guardian, or other parties who
are solely responsible for the content. Such announcements or their
content are not necessarily endorsed by CaringBridge, Inc. or any
sponsoring agent. This information does not confirm that anyone
is or was actually a patient at any facility.
