She didn't get evaluated on Friday by OT, Speech, and PT, so she can't start therapy this weekend. Monday will be a big day for her. We're hoping that Evie has gained enough weight that she will be able to switch to outpatient care soon.
I spoke with the genetic doctors on Friday to see if there was any reason Evie wasn't eating based on her make up. I felt like I was in bio class watching him make his flow chart with circles and squares. Evie will have some tests based on our family history, but nothing stood out to them. They said she looked great to them!
While at JHH Evie had a MRI to see if there was a neurological reason for her eating issues. They didn't find one, but had some minor concerns with the tone in her legs. The neurologists want Evie to have some PT and follow up with them every few months to make sure her legs are developing ok.
Little Evie has had more tests in her 12 weeks of life than most of us will have in a lifetime. We will know everything about our little girl. I secretly wish I could have this many tests just to know more about me. Then again, the more you test, the more things you find wrong!
We took a bunch of pictures today. Getting them uploaded in our few hours at home is a bit challenging right now. But keep checking for some new shots of our 10 pounder!
KKI (Kennedy Krieger Institute... I don't think I ever said that) is a great facility and I've connected with another mom from NC (been living at KKI for 4 weeks already) whose son had feeding issues at 3 months too. Her little guy went through almost the exact same stuff as Evie. I finally have someone that understands how difficult this situation is. While I'd rather not be at KKI, it has really showed me that there are parents dealing with MUCH worse than me. People travel from all over the world to come to KKI. We are so lucky to have it 20 minutes from our house. I'm hoping we will nip Evie's feeding issues in the bud and will live a somewhat normal life.
I keep telling Evie that I deserve amazing Mother's Day gifts for the rest of my life for what I've done for her. Her first word better be "mama" :)
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| Kennedy Krieger |
4 comments:
Mer/Jas: So happy to hear this news. Let's hope it continues. Evie is such a sweet, cutie-pie, we hurt when she hurts, so we want her to get the feeding down. I'll sleep much better tonight! Hugs, mom
i'm so glad to read some positives and i'm glad that you have found another mom who understands what you are going through. you are always in my thoughts and prayers... love you all!! xoxo
Reading this post makes me so happy! It's great to see you smiling in the picture with her. So glad things are finally turning positive and I'm glad the people at KKI have been so wonderful. Keep up the good eating, Evie!
So happy you've found someone who knows exactly what you're going through, Marisa. Love seeing you all smiling and happy in the pics. Hope that her evaluations today go well. Lots of love to all of you.
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