We are on our way home from Blakes appointment seeing his SMA specialist, Dr. Stroth. She is happy with where he is at. We will tweek his medications a little as he is one growing 20 month old little boy and we will add a new prescription to help with his swallowing/ gulping reflexes lately. We are going to continue prosueing a clinical trial as they will post new sitings later this month. Our fingers are crossed for Chicago and that Blake meets criteria at that time. If he is not selected, we will try a new prescription that has some proof to help some SMA kiddos with strength. We were excited to tell Dr. Stroth about the Believing for Blake walk we had in August since we havent seen her since June. She was thrilled to hear how much we were able to raise for the curesma.org site and how that will be used for finding a cure. We still are in awe about the turnout for that event and all of the support that was shown and continues to touch our lives today. As Dr. Stroth put it to us today, This is a club no one wants to be in, but if you have to be in it, this is the best one because we are all here together. With that, we pray. We hope. We believe.
Posted on: Mon, 10 Nov 2014 23:50:54 +0000
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