OK, so we received the GH in the mail a couple days ago. Now, I am just waiting to be contacted by a nurse in our area who is trained on how to give them. She will come out to the house and go over everything with me. I was suppose to be contacted within 24-48 hours after receiving the Genotropin. It has been about 46 hours...She better call soon :) It seems real easy to do, and it doesn't intimidate me a bit. They are all ready to go, you just twist to mix the powder with the solution and that is it. So, this will be a nightly injection for the rest of Cade's life. They may be stopped for different reasons, but for best results he should remain on them forever. Cade had a private therapy session yesterday, and it went real well. She hadn't seen him in about a month and thinks he is doing great! He was smiling and cooing for her. She noticed much more range of motion in his neck. In about two weeks we will finally start his Therapy with Early Steps. It took a while to get things started, but glad that time is finally here. He will have OT and PT twice a month. So, he will rotate every week. Dr. Miller also requested he start getting speech therapy too, since that is an area that almost all PWS kids are delayed in. Starting even this young can help prevent apraxia and delays. So, I will be calling to see if they can set him up for some speech too. At this age, they can do different jaw exercises and help with his feedings. Well, I have another busy day today, so I will update again soon!!
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...
I love the new pictures. He has such a sweet smile. Love him!!!
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