Yes... I just used the "H" word... home.
Recap:
Bella's on Day +248 post BMT(Bone Marrow Transplant)
553 days in hospital
526 days in Ronald McDonald House Calgary.
9+ Surgeries
2 years away from home, since birth.
6 Rare diagnosis. Major one being SCID.
In Beyonce's words, "She's a Survivor!"
>> 1 week until her 2nd birthday! <<
Some then & now photos.
We had the RMH family photographer take photos for Bella's 1st birthday last year and compared them to our family photos taken just a few weeks ago.
How is Bella • How am I
Bella has been just wonderful, active, happy and energetic! Our last few weeks in the RMH have been great. Bella's sleeping so well and growing. Her physical skills are tremendous! She is now able to hold her feed pump backpack all on her own with the weight of her feed pump and feed inside. At the end of this blog entry I'll post a link to the video of her showing her strength. This is a great progression for her. Now that she can move around and keep her backpack on, during a feed, I don't have to chase her around her play area untangling the feed tube.
Also! She is down another Gtube feed! Bella is eating enough calories on her own to take off another formula pump feed. So she's down from 4 to 2. We'll sort of 2 and 1/2. She still is not drinking enough to hydrate herself so one of the pump feeds is just water. She needs a lot more water than normal right now because of the types of medications she's on and not having a colon. She is sipping from her sippy cup every once and a while, but not enough to keep her as hydrated as the doctors want her.
Bella still loves walking around the house with all the different push-carts in the playroom. She really utilizes the playroom now and loves it! And if you have been following her Facebook page (Isabella's Mustard Seed) you would of recently seen her newest achievement...getting up to stand from sitting, all on her own! No steps yet, but she's close.
RMH recently received a massive stuffed teddy and Bella loves climbing on it. It's like her own rock wall. Her and Lyle made a stuffy pit out of all the teddys one day in the tv lounge. She quite enjoyed that. That bear is like the size of 4 adults. Ha ha.
So... I'm doing ok. Quite often if someone in the house asks me how I am I still give the same annoyed sounding reply, "Stiiiiil Here!" And then they probably scurry away whispering, "She's a real 'ol battleaxe." Which is fine with me, haha.
I'm worn out. The pictures really show things are going well, and they are, but they deceive people with how I'm actually doing... Exhausted and stressed with a side of anxious.
This view is what I see the most these days, looking out our window, I think about a lot.
I think about winter setting in, protecting Bella from viruses, no more walks down the path to the duck pond, and what's really happening with the people in the cars driving by. My gaze often lands on the Foothills hospital and I wonder if all the moms in there are as scared as I was or in better circumstances? I look down at the snow on the ground and think, wow... I've been here, in this very spot for that many seasons?! I wonder if my home town community is really ready for us to come back. My mind is racing lately, and it's quite tiring. I need to breathe, step back, look at the moon and remember it's all going to work out. But you'd never know all that from the outside looking in.
Time Lines/Doctors Notes
During our last clinic meeting, Lyle and I had a great conversation with Bella's primary Doctor. He said some things that made me feel really really good. It was relieving to hear. Lyle was able to be at this clinic visit as well since I had quite a break down of exhaustion and needed him here longer than just the weekend.
It was relieving and uplifting to hear Bella's doctor say how much he trusts us. He knows we are not just saying anything to get Bella out of here and risk her safety. He knows we are very keen to Bella's primary needs that only Calgary can handle and we are not going to lie to get her home sooner. It's a good feeling to have a strong sense of trust between such an educated specialist knowing they have to give-in to a "parent's say" sometimes just because, they are the parents. It make me feel so comforted to have that feeling of Bella's Calgary team remaining her primary team even though we are going back to Saskatchewan.
This relationship we have makes it easier on them to send Bella home maybe sooner than they really actually want to... Ya, I know right. But it's good and it'll all be ok.
So we are set to have an official Home Date meeting at Bella's Dec. 8th clinic check up. This will be when the largest wean of her steroid med is done. And as long as her hgb remains high and no signs of the Hemalytic anemia are around, we are good to choose a home date! That'll be an exciting day. And I'm hoping the next blog post I send will be from our home in Swift Current.
Suprisingly, Bella's immunologist said last week, she did not want us going home until the steroid med was completely done! That would of meant not allowing us to go home until February! I almost had a heart attack. But Bella's primary BMT doc does not agree and still deems it safe that we try to be home before Christmas. Honestly, I don't care at this point, I just want it safe for Bella to be 6 hours away from her medical team and that's it.
The issue with the steroid wean and home date planning is that if the anemia comes back and Bella needs a blood transfusion, the Swift Current lab does not have the capability to screen the blood for the specific antibodies. I mean, it takes the Calgary lab 9 hours to prep the blood. So there lies the worry, if the anemia was to come back while we are in Swift Current. But let's pray against that of course, it will NOT come back.
So stay tuned to Bella's Facebook page (Isabella's Mustard Seed) for our Home Date announcement.
I feel like there needs to be a parade down the entire #1 highway for our whole drive home in celebration. Doubtful, but one can dream.
Bella's favorite toys lately are cars, trucks and Lego. She does amazingly well with the Lego pieces and just loves putting them together and taking them apart. I can see the huge improvement in her right wrist/hand. Her wrist doctors agreed and canceled all tests and appointments until spring. They don't feel the need to do the ultrasound either because she may not actually need surgery yet or at all. They feel, given her grand improvements, it's best to give it time and see how much more she can get out of physio, stretches and use versus intense testing that may or may not confirm surgery as the fix.
Hodgeville, Saskatchewan.
Look it up!
This small community is where I really set my roots with my teaching career and learned the most. I taught at Hodgeville school for 5 years before moving to Swift Current. Hodgeville is where I started out with my teaching career and I will never ever forget my amazing students, especially my grade 5/6's who are now grade 8/9's! I miss you all so much.
So this amazing community holds a Stuff Your Stocking Gift & Craft Show every year now and donate the profits to a local charity or worthy cause. This year, they chose Bella. My Hodgeville family raised $1300 to support Bella and all she needs having to be in Calgary for medical care. I can't thank you all enough for thinking of us. This gift helped lift a huge huge financial weight off our shoulders, it makes me cry still, when I talk about it.
A million 'thank yous.'
My Purpose Project
I can't count how many times strangers have stopped me and the conversation sparks from them questioning me about Bella's stroller signs or me actually telling them, she's immune suppressed and why. I hated walking away from those moments and either leaving people totally confused or extremely baffled by what they just heard. I've also had many times where I get bombarded with questions about Bella and I am in no place to even want to see people let alone talk to them.
My contact card has solved all those problems.
Quite often I think about the type of person I would have been if my life had gone on with a perfectly healthy daughter, never having seen the inside of a NICU, PICU or Ronald McDonald House. And you know what, I'm happy I didn't turn out to be that person. I'm not happy my daughter has had to go through so much pain, but it bothers me to think I could of been someone who does nothing for those that have. I'm glad I'm not the person oblivious to childhood cancer and the pain a family endures in these circumstances. I'm relived I've learned what real needs are out there and am able to spark compassion in others through my daughters story to help families in hospital.
A Postcard For Bella's Donor!
Bella's Birthday!
She's turning 2 on December 6th, 2015.
Incase you missed the invite, there it is!
I'm so excited for what I have planned for her birthday. It's going to be easy and fun. The details are on the invite and I'll post reminders closer to next Sunday, again on Bella's Facebook page. But it's basically a chance for anyone to come and say "hi" before we leave Calgary and see Bella.
If you choose, please feel free to make a donation to the Ronald McDonald House Southern and Central Alberta in Bella's name in lieu of gifts. If you'd like to send Bella a birthday card, you can mail it to:
Bella Thomson
Room 208
Ronald McDonald House
111 West Campus Pl NW
Calgary, AB
Canada
T3B 2R6
I'm so so so excited that Bella will be receiving an Icing Smiles cake for her 2nd birthday! It's going to be amazing! If you can, please look up Icing Smiles Canada, see if you can help support their cause in any way. They have volunteer bakers make extremely detailed dream cakes for children in hospital or in medical circumstances.
I'm also setting up a table outside the party room with a memory book for Bella as a keepsake. I have a Polaroid camera ready for selfies! Even if you can just stop by to write a note in Bella's memory book and take a selfie, that would be wonderful. And if you have time for coffee and cake, that's great too!
The kind staff of the resource center at ACH (Alberta's Children's Hospital) have allowed us to use a party room for free! This is so needed since we would not be allowed to have a birthday party/farewell party like this at the RMH. It could not happen because everyone walking through the RMH doors must be screened to keep all the families inside safe. Of course we don't want you stopping by Bella's party either of you are sick, but at least I'll have a table set up outside the party room as well!
We hope many of you in or close to Calgary can come by on Bella's birthday.
Videos!
I have added 3 new helpful videos to my YouTube channel Hospital Mom Hacks! Please check them out and share them if they help you. They are helpful tips on: prolonging use of med syringes, my purpose project and preventing gtube feed leaks.
I may start to post more videos on my Instagram account that are more about Bella and save the medical tips for my YouTube channel. You can follow me on Instagram @kylact. I recently posted a hilarious video of Bella dancing...well, twerking to be exact. Lol
Here's a link to the video I talked about earlier in this post. It's titled "Stronger Every Day." It shows Bella and all 14lbs of her able to keep a backpack on with the weight of a pump and her feed while sitting and standing up!
Stayed tuned to Shaw Global Calgary on December 2nd! Bella and I were interviewed as a family of the house (RMH) and the segment will be airing on December 2nd!
Next blog post, we will be HOME!
Swift Current, are you ready???
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