Introducing Bella to a frog. She loves Hopkins on Signing Time, but the real thing is a different story! You can watch the progression…
”What do you have there Mom?” “Really?”
“A frog?” Me signing “frog.” “No, thank you!” Funny girl!
She has been super protective of her hands lately (sensory issues are back), so OT is working on that again. Working on scooping!
Huge. Huge. Huge. Protective extension to the rear (putting your hands back behind you to protect you when you fall backwards) – only about two years in coming! Now hopefully she’ll do it again! (Notice she did put her hands down on the trampoline – perhaps improved sensory tolerance? Hmmm…)
Cardiology appointment was awesome! Her ECHO was good. Her EEG didn’t have any extra beats. Her cardiologist said that she was great for her. (Always an interesting statement to ponder.) Really, though, the leaking valves are only leaking mildly right now. She’s not too badly enlarged on the right side. She said that she would give us a nice long break from seeing her if it weren’t for her pulmonary hypertension. It’s the easiest way to measure PH, so we’ll have another ECHO in nine months unless she pulls something. She was very encouraged by her valves. She said the longer her valves behave, the more likely they are going to behave long term. Yeah! You can tell Bella wasn’t as excited about this visit as her cardiologist! :) I kept her on the vent the whole time we were at the hospital this time. The last two times we have gone there without her vent she has gotten sick. I’ll take those extra bacterial filters, thank you.
Signing “I love you!” Swinging outside
What a week from a pulmonary perspective! Monday she couldn’t stop wheezing. Tuesday she was able to tolerate some capping. Wednesday she was on the vent almost all day. Thursday I capped her and she crawled five feet and collapsed. She was severely retracting and had to lay down to catch her breathe. Friday she was fine. What do I make of all of this? What do I tell pulmonary next month? Does she need to be on a ventilator? Does she need life support? I have been thinking myself in circles and then second guessing myself. She does great, then not so great. She has come so far, but are we ready to decannulate? So much of what she has faced, she has healed from. But her lungs aren’t healed and won’t. At one point I believed the vent was her life long companion, now I don’t. But I don’t think she’s ready to decannulate next month. And then I wonder if this is all about me and am I the one with the vent dependence. Ugh. August 8th we see pulmonary. I’m not sure I’m going to sleep well until then. Where is the crystal ball?
Some videos
Joy and Bella playing ball
Bella signing her ABCs
Itsy Bitsy Spider and then she starts on her ABCs again
2 comments:
love her expressions, sweet girl. Prayers that you will have some peace about the next steps.
Now you know that I have been your pushy friend wondering also if your afraid to let Bella try. But I agree with you, she is NOT ready to decannulate next month! What happens when she gets sick and needs that vent? Your back to intubated and sedated! She hasn't had a long enough time to kick the vent. She needs to be totally off the vent, the vent out of the house, before they consider taking out that trach!
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