Monday, January 23, 2012
Monday, Monday, Monday... brings another bee-ography. This week's story comes from mommy to one handsome little bee, Andrew:
Andrew was born on Wed, July 24th, 2002. My husband and I were told we had a less than 1% chance to get pregnant, so we adopted. We adopted Andrew 18 hours after birth in New Orleans, LA. Andrew was considered a very healthy child from birth. After the adoption we found out his birth mother had never had prenatal care. We were able to bring Andrew home to Tennessee from Louisiana on August 6, 2002.
On September 5, 2002 we took Andrew to the doctor for a little cold and my mother noticed his head started to get bigger by the day. Once we took him to his pediatrician he immediately took a flash light to his head and noticed he had Hydrocephalus. We were instructed to go directly to Vanderbilt Children’s Hospital to the neurology office and speak with the neurologist. The neurologist immediately scheduled Andrew for a shunt placement on September 6, 2002. We had the shunt placed and after many days in the hospital to recover we got the most horrifying news we could have ever gotten. We found out that our son Andrew was living off of his brain stem and had very little to no brain. I begged for a transplant but they said they do not do that type of surgery here in the US and if I did go through with such surgery that he would not survive. The doctors also told us that Andrew would not be able to do many things such as walk, talk, smile, etc. . . . The doctors told us Andrew had 12 to 15 months of life. The name of Andrew’s diagnosis is currently Hydrocephalus and Hydrancephaly.
Andrew has gone through many surgeries to give him the quality and the quantity of life we hope for. Each surgery has proven to help him each time.
Andrew needs 24/7 care. Andrew is tube fed only and has been since he was 3 years old. He takes many medicines that I have to keep a book on and keep current. He has frequent seizure activity and is wheelchair bound. We move Andrew from side to side and to his belly. We have applied for 8 years for help on medical care for Andrew from the government and been denied each of those 8 years. My husband and I live paycheck to paycheck. When you think things will get better medical wise it seems there is more and other expenses along with it.
When I was young I never knew that there were many special needs children. In fact, I ran into them rarely. When we had Andrew everything changed in our life. The way we live, how we live, the adjustments that need to be made, where we would live and how we were going to take care of our beautiful little Angel on a day to day basis.
When Andrew started school at the age of 3 we looked at a basic public school, a private Christian school and Harris Hillman Special Ed school. After much research we fell in love with Harris Hillman. When we walked into this school it was everything Andrew needed and all the kids were like Andrew. The teacher/student ratio was 3 to 7, they had nursing care, and you’re PT, OT, Speech and Vision therapies. This school was amazing. My husband and I cried leaving the school and thought this was the perfect place for him. We lived in Rutherford County at the time and had to live in Davidson County to get him in this school. The same day we called our realtor and had the house on the market. We sold several months before school started the next year. We thank God for that.
You can say Andrew has changed our lives and for the good. Andrew has showed us so much about love, patience, and most of all brought us closer with God than we had before.
We never even thought about blaming God for Andrew’s condition. We felt God gave us Andrew for a reason and knew we would do whatever possible to take care of Andrew. Andrew is a true blessing in our lives and wouldn’t change it for the world.
The things that doctors told us about Andrew that he would not do that he does now is smile and live as long as he has. In fact, a few doctors that we no longer see because of their unsympathetic and personal views told us that “we should let him go and not hold on” and “that we don’t need to do this surgery because he won’t live long enough to need it”. I am very disappointed at these doctors and because of God we have Andrew living today.
Andrew enjoys music, love, touch, and books read to him. When Andrew hears a familiar voice he will smile real big. He knows his mom, dad, brother and some friends and family. It is amazing on what he can remember.
Andrew is currently 9 years old and we live everyday with the worry of how long we have with him. Each birthday party for each year is something very Blessed to have so we celebrate it with all our friends and family because we don’t know how long we got and we are going to cherish them all.