Yesterday we had an appointment at Children's Hospital in New Orleans with the Geneticist. We of course already had the diagnosis, so we didn't get any new information. He didn't really tell us anything that we didn't already know. He just thoroughly examined him and took pictures. He also took a look at Jake and I. I asked him about getting started with Growth Hormones and he really didn't recommend starting them until we would see a need to. I don't really agree with that. He seems old fashioned, and not too up with the new research. I have found more than enough info as to why to start the GH in infancy. I am in the process of looking for a doctor that specializes in PWS. I have found a few, of course none close by. I have read a lot of great things about Dr. Jennifer Miller a pediatric endocrinologist in Gainesville, FL. She works together with a small team of different doctors that specialize in patient with PWS. They are constantly researching the syndrome and are known world-wide. It is about 9 hours away, which isn't too bad. Definitely worth it in my opinion. Several people I have talked to travel to see doctors. They get all there appointments together and stay a couple days. For top care I am more than willing to go the distance! Oh, and Cade weighed in at 7 lbs 4 oz yesterday. Although I don't know exactly how accurate that is since he had a wet diaper, it is still awesome progress. I'm sure the diaper couldn't have thrown it too far off. So, that is some great news. He is almost 6 weeks old, and finally the size of a healthy newborn. I will put some pics up later of him for everyone to see...
So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it. Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...
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