From his parents point of view
In February, Glenn Jr. had shoulder surgery and was granted leave from his job in the Marine Corps, so after a couple of weeks we decided to travel up to New Jersey to visit his parents. The flight to NJ was decent, but when we arrived we noticed that Glennie was extremely uncomfortable and irritable, and his grandparents were convinced something was terribly wrong. They tried to convince Glenn and I that we should take him to the hospital. We decided that we wouldd take him as soon as we got back home to Florida.
By day two of the trip, nobody could deny that something was wrong, so we decided to take him to the ER at Children's Hospital of Philadelphia. After looking him over, the doctors told us Glennie was going to be admitted. At that point, I was sure that whatever was wrong with Glennie was something we could deal with.
The day after Glennie was admitted was the day that our lives were forever changed. We were told that it was likely Glennie had Spinal Muscular Atrophy, Type 1, which is the most severe. We were told that the disease was progressive and incurable, and would most likely result in respiratory failure. At that point, the doctors discussed with us our treatment options, which included doing nothing and letting Glennie pass on in a couple of months. Glenn and I decided to fight. However, the final diagnosis had yet to be determined, and we had a week to wait for the results of Glennie's blood test.
That week, I still held on to the hope that Glennie's condition was something other than SMA, something less severe, even though I knew the chances were small. For a month or two after the final diagnosis, I believe that both Glenn and I walked around in a state of shock. Mostly it was the shock of Glennie's disease, and how our lives would never be the same. We also had to begin adjusting to the fact that we would never be returning back to our home and life in Florida, since Glennie could not travel.
While waiting for the final diagnosis, we also determined that eating by mouth was becoming too taxing and exhausting for Glennie;he was expending all of his energy trying to eat and swallow, and was burning off all the calories that were coming in just trying to eat. At that point we decided to have a g-tube placed through his stomach.
On April 3, 2003, Glennie was taken back to the hospital for his g-tube surgery. The surgery was a success, and Glennie could now eat and would be able to grow instead of burning off the calories.
In the months following the diagnosis, our lives have been ever-changing. We have been in and out of the hospital, and our apartment is full of all kinds of medical equipment. I've gone from being afraid to have him at home for fear of an emergency, to being able to handle with ease much more than I ever thought I could.
It helps to know that God had all of this planned. It helps to know that there is reason and purpose behind Glennie's illness, and although it may not seem like it, it is ultimately for good.
-Amanda Sinclair
Born:September 16, 2002
9:22 a.m.
Weight: 8 lbs 10 oz
Length:21 in
