Saturday, April 26th

Dallas had a quiet night last night for the most part, but a little junky and needed some assistance getting clear in the early morning. After she woke for the day her BP was 122/98, quite high for a little girl. Tylenol was given in the meantime until the doctors rounded and we could further assess. The docs feel that it could be likely caused from her becoming more alert and having anxiety with the new awareness/not fully understanding what’s going on.

She is awake and her body won’t move like she wants it to, which has got to be very confusing, scary and frustrating, and on top of that she can not verbalize how she feels as she once could. A new med was started (Gabapentin) to help with pain signals to the brain and relieve anxiety, starting with a very low dose.

The puss from her outer ear was cultured and came back as staph infection. The proactive antibiotic they have her on is treating it and there are no signs of being systemic based on her recent blood draw. Good news, and easy fix.

We had a fun and productive day of getting outside for a bit of sunshine, playing with toys in bed and trying to track them with her eyes, and lots of really good stretching.

Although two different teams have told us that Dallas likely wasn’t ready to get a Speech Therapist involved we kindly requested to have an initial eval/conversation. Today we were gifted with a visit from a speech therapist (Elena) that happened to be on-call and filling in at UNC, and she was absolutely amazing. We know Dallas can not even make a full smile at this point, let alone put her lips around a straw (drinking will be the first step towards eating solids again) but we wanted to find out what CAN we do to help promote, stimulate and encourage more movement in her mouth so she can reach her goal.

Elena told us that it most certainly was not too early to bring in Speech and had a bunch of great ideas. But first, she wanted to try something – She knew Dallas was managing her secretions on her own, which means she is swallowing. She decided to give her a very tiny ice chip to put in her mouth and we watched her manipulate it and swallow it beautifully, which was a huge victory! She agreed that we don’t want her to lose those skills and it’s important to keep trying and pushing a little each day.

We then worked on our communication goal. A little further out of reach because Dallas is not tracking very well with her eyes and not able to squeeze our hands etc. (yet!). She asked Dallas to smile, repeated it, showed her and then touched her cheek… and although delayed, she did it!! That was the very first time she has moved her body on command, all other movements have been more involuntary in response to stimuli (stretching, etc).

We are so grateful for the helpful info and tools that we can use to encourage and promote the actions we want instead of waiting for them to just start working!

“Progress begins the moment we believe there’s something worth reaching for—even if it’s just a smile.” — ChatGPT (inspired by Dallas’s journey)

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