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!
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8 comments:
Sorry for her cold - you can beat it! Just keep doing cpt, cough assist, extra bipap time. If you need to talk anything through, or want some suggestions, shoot me an e-mail or give me a call. monicathemighty@gmail.com
Congrats on the good news, and good luck with the cold!
Hey, Mark and Tara! Wonderful news about Brynlee's weight gain! Grandma and Grandpa Adams keep me informed on her progress. Ya'll are in our thoughts and prayers.
Becki
Our prayers are with her! I love reading about how well she is doing or how much progress she has made, but, how is mom and dad doing? We love you guys!
Mark and Tara
What a beautiful baby. Pam and I will be in Salt Lake on Jan 8, for a doctor's appointment for little Leyna are you up to a visit. We would love to catch up. It has been to long. We love you and will remember you in our thoughts and prayers.
Lona and Pam
I am hoping Brynlee will be able to stay out of the hospital! How often are you doing treatments? We'll pray for her.
I don't know if I've already told you this, but your blog is gorgeous--I love the layout.
What trial is she doing? Here they were doing one with sodiumphenalbuterate but had to discontinue. I'm so glad she's doing well with it!!!!
Well, I hope that the treatments help keep her out of the hospital. We'll keep her in our prayers.
Thanks! I'm gonna check it out...I hope they have something manly for Dakin! lololol...
Praying for Brynlee to kick this cold's butt! and soon. Have her secretions slowed down at all? oh and YAY about the clinic visit.. WTG Brynlee!!
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