Day +81
It's been busy, but a good busy. Bella has not been sick in anyway, no temps, no scares or worries. And I'm starting to see my little girl transition from a baby to a toddler. She is motoring all around the room and everywhere. I'm so tired, but I'm so happy.
What's New • Medical Updates
June 2nd, 9th & 16th Counts
Bella's counts are steadily going up and looking great. Her doctors are pleased with every blood draw from her clinic visits. They are so pleased that they may change her clinic visits to once a week! This is a huge deal given that she's only 3 weeks post discharge. For her doctors to be that confident with her progress is such a huge step and her blood counts are proving it worthy. Bella is even able to decrease more of her 8 different medication doses. To wean meds early is great too, they are very expensive. For example her gut motility meds. Remember the torture of her gut issues from the beginning...not an issue anymore! Bella hasn't puked or had motility issues and her bowels are working wonderfully. We may be able to stop her motility med next week!
Bella's tasting/learning to swallow again is still improving! I was blindsided by a tantrum of hers because I didn't give her a cracker on demand! These are real baby issues, yay us! I loved every second of her pissed off freak out over wanting a cracker NOW! I loved every second of it. She is also starting to bite off little chunks/crumbs and swallow now! Yes I'm yelling with excitement with all these exclamation marks!!! Lol
I'm still over the moon with her want to taste, suck, munch, lick, etc. We still have a ways to go with Bella's eating. She's still only at 100mL bolus feeds with only 2hr breaks between Gtube feeds and still on continuous feeds at night, to meet her full calorie/nutrition requirement for the day. So the reason why I'm so happy about her wanting food is because she's still not really given the chance to get hungry yet. Can you imagine how awesome she'll be at eating when she gets a solid 4-5 hour break between meals!
Because Bella's been doing so well it has allowed her "wrist doctor" to take closer looks and make plans. Her BMT docs didn't want any other specialists doing anything else until 3 months post BMT at least. So now she is allowed to go to the clinics of the other specialist that follow her, ie: her wrist doctor. You may have noticed that Bella wears a wrist brace at night and her right wrist has some sort of nerve damage from birth. They have speculated Radial Nerve damage but they need to do more tests to really know what is going on and what the fix is. Regardless of her limited grip and motion with her right wrist/hand, Bella uses it to the best of her ability. They have said she could still very well be right handed or become ambidextrous because she continues to use her right hand so much, regardless of the limited grip and motion. Now that her wrist doc has the go ahead from her BMT team to do more tess, they may look at doing a Tendon Transfer when she's older.
They have told me, we may never know why Bella's wrist was damaged. They speculate it was positional in the womb, "stuck/cramped." He has also seen similar cases where a nerve from the babies neck leading to the wrist is damaged with the way the baby is pulled out at birth. It doesn't really matter why, but there is a good chance they can fix it! Basically she has limited use of her right hand because of some sort of nerve damage. Bella's powering through and using it any way she can regardless and that is reassuring it won't slow her down and it doesn't frustrate her.
It's quite cute to see the long peach-fuzz all over her little body. Because she's so fair you don't notice from pics, but when she's in the tubby it's pretty cute. When she's done this med, the body hair will go away but her head hair will stay of course.
Trips & Fun
With outside being the best germ free place for Bella we have been able to get her out on more mini-trips! Her BMT docs were quick to remind us though that they still do not want us going out of Calgary city limits. We stretched that rule with 2 trips and broke it a tiny bit when we ventured a half hour out of the city to Bragg Creek.
I drove Bella down to Edworthy Park and walked riverside with her. We stopped by an ice cream store window to grab some yumyums. I put her mask on because there was a few people around. I was sad to have to step in front of a little boy as he reached out to touch Bella and move his arm back. He was curious about her mask. I explained to the mom that Bella is immune suppressed and to my surprise she said to me in a huff, "Well he's just curious." I pointed to my stroller signs and said, "Germs are too dangerous for her right now." Thinking that was a more simplified explanation, she still looked at me like I had 3 heads.
I'm not going to get discouraged, this is like practice, I'll get better at helping people understand and become more aware. I need to remind myself not to get upset, I wouldn't wish the experience of chemo, a BMT, or immune suppression on any parent, just so they would "get it."
I'm still nervous about going back to Tim Hortons though... Haha.
We enjoyed a beautiful Saturday in Bragg Creek and went on some nature hikes on the trails near the creek/river. We sat on the patio at a restaurant and had our first family lunch date together. It wasn't busy and we were the only ones on the patio, so it worked out very nicely.
Saskatoon Farms, South Calgary.
Those are the Sasktoon berry fields behind me in the coulée.
This was a beautiful place to visit. They had a massive tree farm, berry coulée, mini zoo, plants, flowers greenhouse and stores. It was like a mini fair grounds for plant lovers.
Yes, Lyle bought trees. Regardless of the Saskatchewan drought we are facing back home at our acreage... Lyle bought trees. This is how much my hubby loves trees, and perfecting our 10 acre yard with them. I'm looking forward to seeing how beautiful he has made it when Bella and I finally get to go home.
Bella loves all the excursions we take her on and I'm so elated that she is experiencing life outside hospital walls.
My Channel • Hospital Mom Hacks
I've finally had some time to add a couple more videos to my YouTube channel! I hope they continue to help hospital parents. If you subscribe to my channel it just means you're "following" my videos and get an update when I add a new video. I think I may start using it to share some exciting videos of Bella's new experiences. This may be easier then bombarding Facebook with videos.
I am humbled to receive amazing messages from moms and parents I have never met about how my YouTube videos have helped them and people they know.
These are just a couple notes I have received. It makes me feel so thankful that my idea to try this, really fulfilled the purpose I had in mind all along. I'm so happy the videos are helping other families with little ones with medical issues.
Here's a link to my most recent Hospital Mom Hacks video:
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