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Queen Elsa!
Saturday we watched and
re-enacted "Frozen"! |
This past week flew by..even with two doctor visits! Bella's blood clot is getting the full attention of the Clinic. They scheduled an ultrasound and a follow up ultrasound (the follow up is tomorrow morning ... they want to compare it to the previous one to see if this past week of meds and compresses has helped to diminish it). Blood work will be next if the clot hasn't gone down. Her Clinic appointment went very well. She just amazes me at how grown up she it when it comes to swabs, test, etc. She continues to gain in both height and weight! Her lungs sounded clear!
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Just me and my
Valentine! |
We were all so glad that she was able to attend her classroom Valentine's Day party. She missed out on her school Christmas Program and Christmas party because of her hospital stay and we really didn't want her to miss this one. But we made it back to school in time!! Bella loves school so much!
Bella has discovered that she loves fried okra! Saturday we got to spend some time together and she asked for "the green stuff with the crunchy outsides!" for lunch. She ate almost two cups of it! Love it...great way to get a veggie in her and some fat grams!!
Milo, one of the neighborhood cats that drop by on occasion to peek in our windows, stopped by Saturday. Milo had a rough year last year .. showed up one day with half of his tail missing and wearing a "collar of shame" halo collar .. but he was chubby and happy. But this Saturday's visit he appears ghastly thin .. skeletal almost. Bella saw him and remarked...
"Ah, Grammy?? What has happened to Milo? He doesn't look very good at all! He looks like he is going to die? Why?? He was rounder before like my Milo kitty? Did they do something when they cut off his tail??" (I don't know, Baby. But he certainly doesn't look healthy at all.)
"Poor, Milo! I hope he isn't going to die."
He wandered off after peeking in the windows. I hope it isn't the last of his visits, but I am afraid it was.
Tuesday Bella has a day off from school. We are going to go shopping (she has outgrown her shoes!), maybe visit the Aquarium to see the new sea turtle exhibit, or maybe the Zoo (weather permitting). She says all three ... I don't know who will need a nap at the end of the day if we do all three... Bella or me!!
Today I am just sitting here watching her sleep. Watching every rise and fall of her chest as she breathes. Breathing is something most people take for granted. It's so easy, such a natural thing to do. But Bella has to fight sometimes to breathe...and right now is one of those times. I timed my breathing with hers...she is working so hard. She asleep and resting but she is working so hard to get each breath. CF sucks .. and now add a very strong possibility of asthma and it just makes things harder for her. Her PFTS is 89% at the moment, which is terrible for her as her normal lung function is well above 110%. Having her function that low causes her to work harder for every breath...it wears her out. (Try plugging your nose and walk around breathing through a straw for a few minutes and you'll realize what a constricted airway feels like!!) But she doesn't complain. She tells you she is fine. But her cough tells you otherwise. But she is a trooper. She lines up her meds in order of least tasty to favorite and takes them. Accepts the extra breathing and vest therapy. She is so brave..so grown up sometimes.. but it's times like this that I look at her and only see the precious little girl who wants to be so many different things..a veterinarian, a ninja, a movie star, married and more. I see the little girl that loves snuggles and cuddles, the little girl that loves her stuffed bears, the little girl that just wants to run and play. I want all of that for her. There is a cure out there for CF and it needs to be found.
