Well, all the hoopla is over and now I am beginning the process of having Cherie's health determined. The first place to start was her heart. I made an appointment with the head cardiologist at Children's Hospital. These professionals working with children are such wonderful people. Even in the face of critical issues they have so much compassion. The first thing to do was a heart catheterizing. Yes, it was a test, but done under anesthetic as a line is inserted in the thigh bringing die through the chambers of the heart. Many children with DS have holes in their heart. This is due to the fact that they are usually not completely formed in the womb. The news was not good. Cherie had a hole in the upper AND lower chambers of her heart. The devastation of this was no surgery could ever be done as she would die on the table. The first 2 years are the most critical and if she gets to 2 we will have passed the first major hurdle towards a longer life.
The next project on the agenda was physical therapy. The way I approached this with her therapists was to have them teach me how to teach her. With most insurance policies therapy is limited to 2 months. I made the absolute most of this time and learned so much. Parents don't realize that rolling over, crawling, sitting up and eventually walking are not always achievements a child makes on their own. Cherie had to be taught all those early natural markers we look for as our babies get older.
I was very excited about this; however, it would be 2 years before such activities could begin. For the first 2 years, Cherie was in the hospital 6 times with pneumonia and other upper respiratory infections. At 1 year she weighed 9lbs., and at 2 years she weighed 14lbs. We had an infant for 2 years. There was a constant underlying fear that we would not have her for long and every trip to the hospital seemed to keep that thought in the forefront of our minds. Every trip to the hospital was frightening.
One interesting experience I had on her last bout with pneumonia was coming out of her hospital room and running into a friend who was more like a brother. I called him over and said: "Cherie is here, come in and meet her". I learned later that he was very nervous about how he would react. During this last stay in the hospital she gained "3" pounds and it was apparent she was on her way to a road to better health. When my friend met her he was shocked. She giggled and showed great happiness to see him. As he left the room he looked at me and said: "I am so very sorry that I did not come to visit you when she was born. I had no idea how cute and personable she would be. I just was not aware what Down Syndrome was!! "
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