My name is Jessica and I'm the wife of Rick, and proud mother of Dominick 6, and Laila 2.
Dominick is our wish child. I got pregnant with Dominick shortly after my 18th birthday (surprise! ) and during my routine mid-pregnancy ultrasound the doctors found some abnormalities. We were told our baby didn't have a face, a brain, only half a spinal cord, and under developed legs. A month later we saw a maternal fetal medicine doctor who diagnosed Dominick with spina bifida.He did indeed have problems with his legs, spine, and brain, but with surgery and proper care he would live. We were told he would have developmental delays, physical delays, and require 2 surgeries in the first few days of life, and various other surgeries through out his life, as well as bowel and bladder incontenence. As an effect of the spina bifida he has hydrocephalus, neurogenic bowel and bladder, arnold chiari malformation II,and hydronephrosis. He was given a 5% chance of not being paralyzed. This doctor told us they only place in our area that can give him the care he needs is at Milton Hershey Medical Center. So that's where Dominick was born.
Dominick was born 4 weeks early through scheduled c-section, and was immediately taken to the NICU. But we got a wonderful surprise, he was not paralyzed, he could wiggle his toes! The day after he was born he had his 1st surgery which put his spinal cord back in to the spinal column, and closed up the opening. At 5 days old Dominick had his second surgery, in which they placed his first VP shunt system to control the hydrocephalus. The next day when my baby was 6 days old I finally got to hold him! When Dom was 8 days home he got to go home! He immediately started receiving physical therapy. Medically speaking the next year was pretty uneventful. In May 2005 Dominick's dad and I got married. Two weeks after our wedding Dom had surgery scheduled to correct strabismus, an eye condition in which the eyes try to focus separately sothe brain shuts off the weak eye. That went well and he now wears bifocal glasses to fine tune his vision. The major issues started in June 2005 when Dom had his 1st shunt revision, the dr made a major mistake and Dom ended up needing 5 subsequent surgeries to fix this problem. He had 3 surgeries in a 5 week span,all of which were emergency, they just had a really difficult time correcting the dr's mistake. Then in December 2005 the scar tissue on the top of Dom's head tore open because it was so damaged it couldn't stretch like it needed to in order to accomidate his growing skull. Dominick spent 2 weeks in intensive care with an external shunt in his brain, an infection in his spinal fluid, and a cast from his armpits to his toes( poor thing also had a broken femur at the time). They ended up having to do plastic surgery to repair the large area of damaged skin ( about the diameter of a tennis ball). Luckily that seemed to do the trick! Dom has had the same shunt since then. His most recent surgery was in September 2009. This was an ACE(antigrade continence enema). They took his appendix, connected one end to a port in his tummy, and the other end to the top of his bowel. Now every day pass a catheter of an enema bag through the appendix and can irrigate his bowel directly where it needs to be. He in now in big boy underwear! Dominick is starting 1st grade in 2 weeks and has far exceeded everyone's expectations! He really struggles with reading writing, he is at a level you would expect a 4 year old to be at, but he is at a 4th grade math level(this he got from his dad). He gets PT,OT, and speech every week. Right now we are still trying to come up with the perfect bowel and bladder regimen for Dom, but we're getting there. Every time we see a dr we are given a new complication to watch out for. So far he has every one of them. The most recent being seizures.
I also have a beautiful little girl, Laila. She just turned 2. When we learned of Dom's health issues we thought we didn't want any more children, but decided we wanted one sibling for him, a special friend, he says. After 2 years of fertility treatments, and treatments to prevent spina bifida, I got pregnant. We call Laila our super baby. She has been advanced from the day she was born. All the doctors and nurses came to see her the day she born because they never saw a baby hold their head up the day they were born. Poor Dominick gets mad because he struggles every day with his homework and Laila comes over and tells him the answers. I have a feeling their teenage years will be very interesting!
Back in May we got in contact with another family at Hershey Medical Center and they asked if Dom has received a wish. We said no, so they referred us to MAW. Dom was so excited to hear that he was approved! He immediately knew what his wish was, the one thing we were never able to give him. He wanted to go to Mickey's house!! So in the middle of July we meet with our wonderful volunteers, and 3 day later we found out his wish was approved! So we're officially going to Disney! We're still waiting for the dates, but we asked to go during
MNSSHP, and they said that's fine, it's now just red tape to get the trip actually scheduled.
So our rough plan for our trip is this:
day 1- fly to Orlando, spend afternoon at GKTW, evening at Downtown Disney
day 2-6 (not sure what order we're gonna do stuff in, waiting to figure that out until we know our dates)
- Full day at Mk
-GKTW during the day, MNSSHP at night
-Full day at Epcot
-Morning at AK, Evening at HS
-full day at seaworld
day 7 - fly home
we really want to go to universal but don't think we will have time. if we end up working our way through WDW faster than we anticipate, we will go to universal.
I know...time flies, doesn't it!However, I KNOW they love you and feel blessed to have you and so are all of us on the DIS whom you help so much
. I wish I had someone like you in my life! As for college...it is an entirely different process once you go on to higher education. Civil law takes over and it protects people with disabilities from discrimination in admission to college and participation in college activities. It sounds as if the college will guide her and assist in all that she needs, Praise God! Lauren certainly has a great support system and excellent plans in place. I will pray for easy execution and BELIEVE that things will work out smoothly. How exciting for EVERYONE!!!
We are excited for her!
Long term goals for a 3 year old? Good grief.
Lauren did get to sleep with my dog, Muffin, the other night because she was going on and on about how she will never get to sleep with her in college...blah, blah, blah. She snowed me. 
to the wish trippers thread! We are glad to have you!
welcome to the new folks I can't wait to read your PTR's
