Emmy's PT/ NC Trip #1

So..I haven't been on lately! I've been extremely busy with all of Emmy's appointments, it's unbelievable. I feel like I haven't had a chance to breath. Emmry has started physical therapy for her lymphedema in her legs/feet and arms/hands. Some of you may know that Emmry was diagnosed with 45X Turner Syndrome, a rare chromosome make up for TS, because her x is wholly missing, so we were given the opportunity to do a  research study in NC. They flew my dad, Chase, Emmy and I out for 2 days did a bunch if tests/blood work and developmental assessments to try and better understand TS as well as try and find a cure. The results of everything have come back and Emmry is indeed below average in almost all areas, and one of the worst swelling cases they have seen. They said she has tibia torsion which is turning of the tibia bone which can cause her to walk or not walk awkwardly, and that her left side is EXTREMELY swollen and recommended she see a therapist asap. They want to see her in March again so she'll be going to NC every 3 months for the rest of her life. Here are a few pictures of her swelling feet--

That above is at birth- she has a fourth metacarpal in her toes so that's why they look like that.

This is the most recent picture.

Anyway- we came home after a very tiring two days of testing and started therapy asap. Only to find out it's doing nothing but forcing fluid too quickly which is causing stress on her body and heart, she's loosing circulation completely in her feet when wrapped, which she already has poor circulation from the dramatic amount of fluid. So Christmas Eve we called the therapist and he told us to take the wraps off until we see her cardiologist again. The therapy would consist of me doing massages 2/3x a day all over her body, unwrapping 2x a day, lotioning/cleaning/measuring and rewrapping. At the appts we would practice massage techniques, and practice wrapping than we'd meet with a developmental therapist who would make Emmy work hard at turning her body, and actually moving. She tends to just lay around a lot and sleep or constantly cry with some smiles and coo's here and there, but overall she's very temperamental. She has been diagnosed with plagiocephaly which is basically flat head where her skull is starting to shift- many babies get this from laying on ther backs or in their carseats too much. Her's is caused from torticollis which is the muscle in her neck. It only lets her twist to her right because low fluid at birth she was stuck in a position for so long so it hurts her to turn to her left. Were currently doing everything we can to make her more active, turn to the left and prevent her skull from shifting anymore or else she will be put in a helmet. Other than those new changes they now are sending us to SLC so Emmry can see her Cardiologist, Endocrinologist and geneticist to try and figure out why the swelling is-

•  getting worse since therapy
• how will this effect her in the longrun
• is this causing extreme stress on her intestines
• can we figure out how to give enough pressure to slow the swelling but not the oxygen or blood flow

Besides that she now weighs 11.9 and is 24 inches long! Good news from the NC research group was that they don't want to start hormones at 6 months because Mike and I are rather tall they think she might at least get to 5'2, if she starts to slow down again than they will reconsider, but hopes are held high for my baby, as always. 

Chase is loving his sister, and we absolutely are still blessed no matter what we have to go through to have her, because God only gives you what you can handle. 

LOVE FROM THE O'RILEYS! <3