A couple things to report. Brynlee had her pediatrician and Clinical trial visit last week. Her pedi appointment went well. We love brynlee's doctor and thank god that we ended up switching right before Brynlee was diagnosed. As far as her speech she is and the way she responds, doc said she is doing what a 20 month old does. My little chatterbox! She has grown a ton since she got her feeding tube. She went from 50% to 80% for height in a couple of months and 2% to 35% in weight.
Our Clinical trial went well with Dr. Swoboda. She said that Brynlee is the first one on the trial past one that hasn't gotten worse. YAY, go Brynlee!!! She hasn't gotten better either she has stayed the same, but they upped her meds so I am hoping she gets stronger now!
Last but not least Brynlee got a cold for Christmas. She has only been sick once before this. This is her first runny nose and it sucks because she keeps choking on her secretions. So we are doing lots of cough assists and suction. Please send good thoughts our way that she beats this at home and we don't end up in the hospital!