On my phone again...Ok, so I will try again to fill everyone in. Lately things have been goin rather slow around here. Doctors have been consulting with cade's doctors in FL to come up with the best possible plan for Cade. So, it is ok that things are taking a while. I would rather everyone be on the same page rather than rush into surgery. All the doctors here arw being very thural and making sure things are done right. Dr.Miller does not want the Nissen procedure done because too often she sees patients not being able to control their blood sugar after. On top of PWS she does not want to have to worry about blood sugar levels dropping(and neither do I)! So, the G-tube will be done and we will control reflux/aspiration with max reflux meds. Results of sleep study have also been being discussed. The pulmonologist described Cade's sleep study as "off the charts" He has severe obstructive sleeo apnea. A typical baby obstructs about 2 times per hr and Cade was ib the 70s per hr! That is pretty disturbing! All doctors do believe that hopefully with proper nutrition and increased muscle tone the obstructive apnea should improve. It is very important not to obstruct during sleep, it doesn't allow your brain to grow properly. Proper nutrition also helps brain development and growth. For his height and weight he is still off te charts...not even in the 1 percentile. But for his head circumfrence he is on the charts...good to know that his brain is growing! I will continue to try to keep my blog updated...
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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