The past three weeks have been difficult, nothing like Thanksgiving to the first week of January - but whew it has been tough! Cmans daily baseline pain has become more than it has been. Most days he skips breakfast because he wakes up hurting so badly. His local team, led by Dr. P, has been working with his Houston GI team, who quite frankly is at a loss. The head of his GI team, Dr. R presented Cmans case at a paneled discussion group of 40 docs where the doctors at Texas Childrens Hospital bring their toughest cases. The group made several suggestions that we will be - and are moving forward with to seek more answers and offer Cman relief! I love how his teams dont have a God complex, but seek help when needed! We are grateful for each person on his medial team! In the mean time, we are using his wheelchair more because he just cant make it through the day without intense pain. The past two nights have been full of high blood sugars and moderate ketones. We continue to search for the right DAD for Cman, but that will be a process that takes time. So as we wait, Dr. D and his Endo team has determined it is necessary for Cman to be on a Continuos Glucose Monitor, a decision that was not made lightly as it is costly because insurance doesnt cover the full cost of the device or the full cost of the monthly sensors, and it requires another stick and device to be worn 24/7 (I will talk more about this in a later post.) But as we are picking and choosing where and what our daily activities will be lately, I have been picking fun things for Cman and having him rest up for those activities by not doing much the day before or the day of his fun event! On Tuesday nights we go listen to my dad play in his country band at an outside venue! Cman loves it! And has picked up a thing or two - as you can tell in the video!!! We continue to celebrate all the wonderful people who bless our lives daily - and all the exciting outings we still hope to get in before the summer ends! Fall is ROARING our way and Cman is so excited about being at Lubbock-Cooper ISD North Elementary this year. He loves being a Pirate! Keep Calm (cool) and DINO ON!
Posted on: Fri, 01 Aug 2014 12:49:09 +0000
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