So, we had therapy yesterday.
It went well. Our therapist talked to Lily (3), and Tammy (3). They had a snack, and they shared it with the other littles.
I came back at the end, and our therapist said she would miss us when we left. She actually cried. We didn’t mean to make her cry. Some of us feel bad about that. It was a good session though.
Hope everyone is well.
Ray
girs day in with our ⠠⠠⠏⠁
Our PA is going to have a girls day in with us today. She’s going to do art with us, paint our nails, wash our hair, bake, and give us a makeover. She said because we don’t get to get out very often’ she wants to treat us. We are so excited! Yay!
Ray
genetics appoint TW medical
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So, we had our genetics appointment on Wednesday. It was a good appointment. They had found two variants of uncertain significance. One of them was for Sticklers Syndrome, and the other one for blood vessel and muscle wall problems. The geneticist said that these variants didn’t explain my symptoms.
She is going to do a chromosomal array test to test to see if there are any deletions or duplications in my chromsomes. If that test shows nothing, she will do whole-exome sequencing. She also said that we get swelling in our ankles because of what’s called third spacing. This means that because of the connective tissue. She says that the fluids leak out of the blood vessels because they are weak and the fluid leaks in to my other tissues. So, it’s not that my body is going into fluid overload, it is because of my connective tissues.
Hope this update was interesting.
Ray
my multiple life 