Playing on the Wii with Lizzy “One of these has to start Singing Time!”
PT – we are working so hard to catch up on so much that we have lost the last month. But look – outside! She loves it! Crawling outside, who would have ever thought?
OT – work, work, work on all that is sensory
PT – standing on one leg again. At least we are back to that! And bubbles!
Bella likes Joy’s glasses! Playing in the toy box!
Hanging with Jessi More bubbles
She was still off the vent a ton this week, but not as long. Oxygen is needed a lot of the time now. She has asked twice this week for her vent. I have seen nasal flaring which is new for us, she normally sticks with retractions and wheezing. We head to the hospital for a DL&B, CT, and tweaking on Tuesday. It’s got me a little anxious, but I’m hoping for good things.
Baby steps for Bella! Does the oxygen help her stay off the vent longer? Carrying around oxygen would be a lot easier than a vent! Maybe that's a good way to help her come off. It's so frustrating when they have no good answers. Jax sats have been amazing in Cali, I can take him off oxygen for up to an hour! First time in 6 years! But he's been breathing harder, he blows through noses because he gets them soaked with condensation. He is also wheezing, which is a new thing for us! I guess they will always keep us thinking!
ReplyDeleteI cannot believe your girl. I know she has limitations but seriously, that child, to me, from the fragile infant when I first found you all, to now ... WOW! Crawling and standing and playing with dolls and all of it... just amazing. Prayers of peace to you anxious heart for tomorrow. I always say, don't go with expectations and some days, you are pleasantly surprised!
ReplyDeleteLove to you beautiful crew and baby brother... darling! A boy for the Turpins, what a blessing.