Also, sorry for the stressed out rant in the last post. It's so overwhelming to even share small portions of the stress we are under, seeing our baby girl going through any pain when she has simply just endured enough. It's overwhelming when I want so badly for everyone to understand what she's going through. I rant about one of the many things our Bella has to go through, and the worst of it is... I'm stuck re-reading that post thinking "My goodness, what I just wrote is not even a quarter of what is all going on in terms of stress, worry, anxiety and pain." Sometimes after, I refuse to feel defeated and I command peaceful thoughts, I say hopeful words out loud and I pray. Other times I feel so beat'n up for what my daughter has to go through I think, "God, PTSD is so cruel." And then I pray some more. I'm remaining strong for my baby girl. I don't care how much pain I'm feeling or how badly I want to take hers away, I will remain strong and speak in strength with my words for her.
On a more eventful note, Bella has started her training for the next mountain she's going to move. Yes, strength training. Ha ha. She's warming up by knocking down towers. One of her favorite things to do during play time on the mat.
Bella Vs Tower
Round 3
Physio:
Bella is a crawling machine and sometimes doing the bear crawl as well. No more army crawl. She's also crawling over big objects and "couch surfing" of course. She's walking so well by just barely hangin on to my fingertips. She knows what "no hands" means and she starts to show off when she's couch surfing. She'll be holding on to the crib rail or something while she's standing. As soon as you say, "No Hands!" She gets all excited, takes her hands away and balances with this "Holy crap I'm awesome" face the whole time. It's pretty sweet.
Bingo:
Every Wednesday Unit 1 has a bingo for every patient! So because the majority are on isolation like Bella is, we all get walkie talkies! It's so fun and she gets to choose from amazing prizes every week. It works out great for physio on Wednesdays aswell because she has a new exciting toy to try out that really gets her boogy'n across the mat to get it.
SLP:
Bella's speech and language is still progressing and impressing her SLP lady, the nurses, doctors and us of course. She has 20 some words now and saying more and more new sounds everyday. She's selecting and choosing and using more words together. Her expression and receptive skills are so great for only being 15 months old tomorrow.
Unit 1 Friends:
Recently a sweet 9 year old girl right across from Bella's room was admitted and guess what her name is?! Yes, Isabella too. So they are Besties now. I met the lil girls mom the other day and older Isabella is obsessed with making sure our lil Bella is ok. She's always asking her mom to look and make sure she's happy. She's always asking about her. The other day they got to smile at each other through the windows in their doors.
Teeth!
From what I can see, well what Bella lets me see, she's got 6 teeth now! There's probably more but I don't dare to purposefully piss her off. So I don't go poken around in her mouth. But I did see a new fourth bottom tooth today! So she has her 2 top middle and 4 bottom middle teeth right up front, ready for the camera. :)
Recent Tests:
CT Scan & Ultraaound
These are a part of Bella's pre-BMT workup tests. The CT scan was fast, about 1min in total. They bundle her tight in what looks like a mini blue sleeping bag that goes up to her neck, with Velcro straps to keep her tight and not wiggly. Then they inject the solution in her iv line and start the CT machine up. Which sounds like a jet engine by the way. But Bella was calm, I think she was liking the warm blanket bundle and iPad cartoons. So it went well. Her results were great. No abnormalities detected at all.
Her ultrasound took like 30min! Thank goodness the iPad cartoons worked for that as well. They had to check all her organs, liver, kidneys,etc. So I held her hand as the tech ran the stick through the jelly over her belly and I held back some tears thinking what I would give to be in this same position with my baby girl in 20some years. To know she's grown up healthy enough to have her own lil one.
Heart Tests:
Bella's had a few ECGs and ECHOs in the last few months. Many of the ECGs must be done before starting a new med that may affect her heart. She had another ECG today. They put about 15 stickers and cords on her chest and ran a 30sec print out from the computer. She has an ECHO next week which will be the ultrasound of her heart to get a baseline of its function before chemo.
Shots and Bloodwork:
Thank God Bella has the double lumen Broviak central line iv sewn into her chest vein for the majority of her blood work but she still had to receive a needle poke the other day for her RSV shot. Honestly if I took the time to count from, Bella's Beads of Courage Tracking, I wouldn't be far off if I said she's had to endure around over 100 needles in her first year of life. Over 100 pokes... I'll let you chew on that for a minute.
You really start to understand the value of the central line sewn into her chest now.
She had her monthly IVIG today. That's her antibody boost. So she had to be hooked up to some lines and pumps today for a few hours. This boost is infused through her central line.
She's still getting her blood taken twice a week and with that they check all her levels for her meds, etc.
Ok, my thumbs are getting sore going to save the rest for another day.
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