We had such a good weekend and Bella is having a ball with every little adventure. So she is making it much easier for me to do this while Lyle has to work.
Day +69
How is Bella?
In 3 words she is happy, energetic and always smiling! She has adjusted to life at RMH so so well it makes my heart skip a beat. She loves playing with anything and everything and keeps herself quite entertained when I'm busy. The other day she had a good half hour of fun with her jar of headbands. And she insisted that a specific 3 be placed on her head.
And then she continued to play with all the rest.
She is walking and crawling all around the room, building her muscles and making a good comeback with her agility. THis doesn't come without a few experimental tumbles though. She has take'n a few falls quite well and just keeps trucking. She is quite proud of herself when she stands to balance without hanging on to anything! I think the bravery of her first step may come soon.
Her speaking and words are still growing like wildfire! She talks so much and surprises everyone she meets when they realize her age. Her word that I love the most right now is when she says, Thank You." It comes out sounding like, " Unk-goo" but is so adorable. And I also love that she makes the "k" sound for when she wants a cracker, cookie or cupcake! Our SLP was amazed at her because the "k" sound is supposed to be one of the hardest or last sounds a baby can make.
Yes, you heard me right! She wants a cracker, cookie or cupcake! Bella is doing amazing with her food tasting and her 'want' for food. I am over the moon about it. For the last solid week she constantly requests food and always has some piece of food in her hand! I'm just as happy as that one day when she took 21 spoonfuls of soup. She is also wanting her sippy-cup. She is not at the stage of really swallowing much yet but sucking on and tasting food all day! It makes me so happy. Her Gtube feeds (tube through her stomach) are going very well. Her bowel motility (she is on a med for this but it has recently been reduced) is wonderful and she can handle half-hour feeds now! She started at 2hr long bolus feeds (back in April) and is now able to handle a feed of formula within 30min. That is a more normal amount of time to eat a meal for anyone and it frees up her time off of her feeding tube way more.
So because Bella is still on protective isolation I can not take her in any public places. Since the majority of our day is finding fun stuff to do outside I thought if I walk to Tims for breakfast and a coffee, surely someone would be able to go in with my gift card and grab me something. Well, the first person I asked said, "no." I was shocked. I had said I can't bring my daughter in and I have a gift card... He still said no and walked right by me, into the store. It's hard to swallow, knowing people like that are still out there. I constantly feel a heavy heart for the need to be compassionate and hold empathy for anyone else I see in a predicament. Unfortunately... Not everyone is willing to sacrifice a bit of themselves for a stranger. When I think about how I want to raise Bella, I want so so badly to teacher her to hold compassion and have empathy. Anything to keep others from pain. There's enough in this world.
Fortunately after I stood there in a state of shock a little old lady smoken away on her motorized cart, lightened the mood by pipe'n up from around the corner and said, "What an asshole!"
Haha Just your typical old lady smoke'n round the corner. We had a good chat about Bella. She was pretty funny. And the next person to come along was a nice lady who had no problem grab'n me some breakfast and brining it out to Bella and I.
Today +74
Side note: The necklace that we sent to Bella's donor on April 1st was given back to us today. Unfortunately OneMatch did not approve the gift before the 1 year post transplant mark. Apparently they still sent Bella's donor the letter and card, which tells her all about the necklace and every detail of the necklace... But no, did not allow the necklace itself. Ugh... Sad but guess we'll have to wait to give Bella's donor the necklace for a while yet.
Clinic Visits! Our new chapter.
Day +69 June 2nd, 2015: Bella's first BMT clinic visit.
So after being discharged from hospital for 4 days I pack up everything we needed in Bella's stroller and we walked over to ACH for her first clinic visit. As I walked up to the hospital and stared, yet again, at it's massive teal colored walls, a new feeling hit me and just promted the words to come out of my mouth, "This is no longer our life." I breathed a big sigh of relief knowing Bella doesn't have to sleep there anymore, nor be confined to a room there any longer.
We walked into clinic (which is just down the hall from Unit 1) and patiently waited for her nurses, doctors and whole new "Out Patient" team of people to arrive and meet her. Yes, more new people! The only people that stay the same now are her BMT doctors. Everyone else from clinic is new to us.
So the new dietician came in and checked over Bella's meds, asked me questions, one of which was just like a usual question that she would ask all parents, "Any missed doses Kyla?" My initial reaction was that of me looking at her like she had 3 heads. Say Whaaaat?! Have you seen my binder lady? No missed doses, this momma is on top of it. We had a good laugh about it. I just couldn't understand how something like a missed dose could be ok. It just didn't occur to me that, uh ya... a stressed out sleep deprived parent can make a mistake or two. Yes, I do need to be told to breathe most days. My brain is just completely focused around Bella's meds and feeds schedule.
2nd Clinic visit Day +72 with daddy!
Clinic visits are like a quick check up. They start by taking Bella's blood and sending it to the lab stat to make sure all her levels are good and see if they need to adjust her meds. Then they weigh her, check her pulse and do a whole assessment of her skin, mouth, height, feeding, Blood Pressure, Oxygen, etc. After the doctor checks her over we get to go. Later in the afternoon her BMT nurse Moira calls me with the results of Bella's bloodwork. So far Bella is still maintaining her own IGG levels so she doesn't need to go in for IVIG boosts. (This would mean siting in clinic hooked up to IV lines for 3 hours.) Her immune system counts are still great and where they should be. Her cells are still 100% donor! So that's real good news. Her next blood tests will show how the new Bcells and Tcells are not just growing but functioning together. It is great that the new donor cells have taken up shop in Bella, they found where to go in her body and start to do what they are supposed to. Now the new baby bone marrow cells are growing and multiplying. The next step (which they see at the 3 months post BMT mark) is how they function/work.
Day +72
Lyle had the most beautiful idea: spending a day at Spruce Meadows. It was perfect. Bella had a smile on for the entire day. We watched horse jumping and a dog agility show. It was georgeous out and Bella loved every second.
If the Queen or Dutchess showed up Bella would give them both a run for their money, fashion wise. Bella was ready for the horses in her big hat and fancy frilly outfit.
Such a perfect day all thanks to my hubby. I would of never thought of it. Especially since I thought for my whole life that Spruce Meadows was in some fancy big city like New York. Haha
I grew up watching horse jumping on TV, I loved it and never knew it was actually only a province away in Calgary.
This wonderful day ended with a fun evening for me aswell. Lyle took me to the Imagine Dragons concert.
They put on a sweet show and we got very close to the stage. It was a real awesome lazer light show aswell. Thanks to Lyle's sister Joanna we were able to go while she watched Bella. I tried to make sure Bella was sleeping for Jo because I was worried I'd be leaving Jo with an over-tired crying child. But that was not the case at all. Bella was super happy to see Aunty Jo and stay up later for a fun PJ party and later bedtime. This made it so much easier to go and enjoy the concert. Bella was great for Jo.
Today +74
My Interview:
The Ronald McDonald House staff have taken notice of my blog and YouTube channel. (Hospital Mom Hacks) So much so that they wanted to interview me about it all and share it on their own RMH blog. This is all in support of Family Centered Care that the House is promoting as well. By sharing my interview, Bella's blog and my channel on their RMH blog, we all hope to help other families in all other Ronald McDonald Houses. I'm so happy that I can help in this way. If you would like to check out the Southern Alberta RMH blog you can go to their home page: ahomeawayfromhome.org There will be a grey box on the left side of the screen that says, "Come On In." That is the link to the RMH blog.
Here is a direct link to my interview:
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