I want to give hope to those who have special little ones. My son was born October 21, 1992. I had a normal pregnancy, no issues. I worked up until my 38th week. I started having pain after my 39 week doctors appointment. My water broke but I did not go into labor. When we got there, they told us there was meconium in the fluid which translated that he had a bowel movement in the womb and could be in distress. His heart rate was not strong. They put in an internal monitor and checked his oxygen saturation level. Then they put me on oxygen and started putting fluid back in so that it would not be a dry birth. I knew things were not right when all three doctors in the practice showed up. When his heart rate started getting weaker, they told me I was close enough to push. When he came out and they put him on my chest, we was very yellow and had purple spots all over him. All the blood vessels in his body were damaged...he looked like a purple, yellow bruise. He weighted 8lbs 4ozs. They whisked him away. We were in a small Women's hospital.
That night I sat in the nursery in protective garments, they thought it was hepatitis. I will never forget, my husband had gone home to be with our 2 year old son because it was very late in the evening. My OB/GYN came in with the Neonatologist. They both looked like they had just rolled out of bed, they told me his body was shutting down and we had to transfer him to All Childrens Hospital.
I called my husband and we followed the ambulance. That was the the hardest night of our lives, they told us there was nothing we could do, but we went and got on our knees and prayed. We prayed that that God would heal our son. We never questioned why, but God did have a plan. When we got to see him the next morning, they were running tests. We called everyone we knew to pray for him.
They told us his liver, spleen and kidneys were enlarged, he had a very low platelet count, like 14,000, normal was like 140,000 so they had to give him platelets. The head of the Neonatology unit set up an appointment to meet with us. She told us that we had to prepare for the worst, that he might not live. He had calcifications on the brain, his internal organs were not working properly, he could be blind, deaf, a lot of doom and gloom. She told us he had CMV. How I never had it, I will never understand, my mother ran a daycare in our home for most of childhood. They wanted to give him a experimental drug called Gamma Globulin. The risks of that were to great for our baby.
They finally let us hold him, that was the hardest two weeks of our lives, but everyday, he got stronger and better. He finally got to nurse and started thriving. He stayed in the hospital for about two weeks. When they sent him home they told us no outings, no visitors, we had to wash our hands before we could touch him. We had to find a pediatrician who had ever had a patient with CMV. I think we were one of a handful of children born with CMV in 1992 at All Children's hospital.
After six months, the internal medicine doctor discharged him. His internal organs were healed. After a couple of seizure scares and a few EEGs, the Neurologist discharged us. He told us his life would be like a hallway of doors, some he would be able to open some he would not.
We started therapy, speech, occupational, and physical. We had to become his advocate quickly because insurance did not cover the therapy he needed. He had colic, he threw up a lot, but he started growing. He finally sat up around a year old, crawled about 18 months old, walked at 4, started with a walker, but eventually learned to run. He taught himself how to swim at 6. He finally got out of diapers at 6 years old. He communicates with some sign language, he has some words, but mostly communicates with the PCS System. It is a picture card Exchange system.
He is a big 16 year old boy. He has a great behavior therapist that helps him with new situations, and things he does not like. He has been riding a three wheel bike for years, but just started on a two wheeler after 2 years of practice. He has been diagnosed with PPD, Persuasive Development Disorder. He is in a local center public school. He is in a Autistic class. He has some aggression issues, but for the most part he is a loving, happy young man who loves trains and DVD's more that most.
He has been a blessing to our family. His older brother went away last year to his first year in college at the Air Force Academy. He also has a sister and they love to aggravate each other. We are blessed, he has overcome many obstacles and hurdles in his young life, but we have never given up hope.
- Shared by his mother, Lisa
Posted: 1/12/2017 8:28:14 PM