HOME • Day +277

Day +277 Post BMT

553 Days in Hospital

541 in RMH Calgary

15 days at home in Swift Current, SK.

Breath taken away...

Ya, I pretty much am speechless but I'll probably write a novel for this post. Can you believe its been a month since my last blog post!? It's like we had a major life event happen or something...like something no one has ever experienced...like something that has never happened to anyone else in the world. Well, unless you've been in jail for 2 years and someone just paid your bail, ya kinda like that. 

We Are Home. Bella is home. 

Arriving Home

•December 13th, 2015 at 5:30pm•

We just beat the dark and Bella was an excellent traveler. We hightailed it outta that RMH parking lot and hit the road on such a beautiful day. Thank God for the amazing weather. Bella nap'd, drew on her mini magnadoodle and asked for mom's french fries for snacks. 

Before all this, for about the whole month of November I had felt a lot of anxiety. Calgary became my security blanket. I'll admit that, it truly was. How could it not be. I was across the street from an entire Bone Marrow Transplant team in a world-renowned Children's hospital (ACH) with specialists that were a phone call away from more specialists in England. I was emersed in a medical life, surrounded by hospital life and expected to be excited about moving home to a small city unequiped to handle extensive pediatric cases such as Bella... or what I felt like mostly, even a bruise. Sorry, I should give Swift Current more credit, but 2 weeks at home and we've already hit road blocks with their capabilities. 

So, in a nut shell we broke new ground. I had no transition servces helping me transition. I did not have a care aid to welcome into our home or a whole unit of RNs across the street. No... I had the support of amazing family and friends, even strangers help us make this massive transition for Bella and I want to say thank you.  I have never felt so much anxiety and worry be wiped away so easily by so many people. I wish I could name each and everyone of you out there, but just please know the impeccable timing many of you have had and generosity in the most perfect ways. It helped Lyle, Bella and I so so much through this ground breaking transition from hospital life to home life. 

So we arrive home on Sunday evening and Bella was so so happy. For the entire first hour she squealed, "Pup-pay!" (puppy) with such joy, and pointed at Jersey (our dog). She was so excited that she had her own puppy, all the time. I howl with laughter at Bella's excitment with her dog. Bella will be walking around the house and when Jersey walks by her, Bella stops, waves and says, "HI!." So adorable. She loves her puppy. (8 year old black lab/collie cross)

I on the other hand could barely make eggs and put on pants. 

Yeah...

It was hard to tell people the truth when everyone would say, "How excited are you to be home Kyla!?"  Truth is I was not. I was anxious, scared, unsure, nervous and basically petrified. Lyle had to help me scramble eggs Monday morning. 

Now, I'm ok. It took a solid 5 days to really just be ok. My security blanket is 6 hours away, I have no choice. I need to be on high alert but try not to stress about anything that could go wrong. We have Calgary fully in charge and working extremly close with our Swift Current medical staff, it is all going to be ok. And like I would say while still in RMH in Calgary, "This needs to happen, its time."

We said our byebyes to Room 208 in RMH.

I wrote a special note in the room's journal book that I hope helps and comforts the next family. But I tell ya, when the time came, I couldn't get out of there fast enough. 

The day before we left, Bella got to enjoy picking out a special gift from the Magic Room at RMH. Side note, she was a grump after her nap that day...

lol

Bella had quite a few things go on the week before we were able to come home to Sask. She had her 2nd Birthday on December 6th and starting walking! She took her first (unassisted) steps on December 1st, 2015 at 6:20pm. Of course I didn't get her first few shuffles on camera, but I got video of her second and third for Lyle who of course was torn with being so upset he missed them but so happy she finally took them. Bittersweet for daddy. 

Bella's birthday was wonderful and I regret not taking a photo of everyone that came! Thats one thing I wish I would remember to do, is take more photos of all the people that have given Bella so much love. Thank you again for everyone that was able to come that day, it made me feel so so much love for our Bella. Thank you. 

And a shout out to Icing Smiles. This is a organization, world wide and Icing Smiles Canada was able to find a volunteer baker in Calgary to make this beautiful, meaningful and quite delicious cake for Bella's birthday. They also make Dream Cakes for children who have lived in hospital or extensive medical scenarios. For Free!  Our baker volunteered many hours of her time to bring Bella a cake that made her smile ear to ear, and thats not all! Bella can have more cake through Icing Smiles! This was her birthday cake but children also get whats called a Dream Cake. When Bella's a bit older I'd like her to request her dream cake through icing smiles. They are wonderful. Please check out their website. They always need volunteer bakers in all different towns and cities. 

Bella absolutely loved the sledding in the snow. She cried when I brought her inside and wanted to go right back out. This is her first winter, outside, experiencing snow! (Her first winter was in a NICU and her second winter in isolation in hospital ACH.)

 

Being Home

Our Calgary docotors still had a lot of requirements and protocol for transitioning us home. It is quite overwhelming to make this transition but a lot of it is still underwhelming as we are still suposed to keep Bella on isolation. So we don't get to bring her home and allow her to see all her friends, family, cousins, etc that still have yet to meet her since birth. Nope, she is to remain strictly on isolation because winter can be a dangerous time. Basically this summer will be a better time for celebration. For now, we are not allowed anyone sick, no children, school age or daycare age and continue to screen anyone wanting to visit.  Bella's immune supressant meds will hopefully be out of her system come spring and that will be a better time to "test" her new immune system. Winter is strictly prohibited for those types of shinanigans. Especially the chicken pox parties...apprently those are bad? ha ha  Bella's BMT doctor and I love that joke. But in all reality Bella must remain on isolation until they see that she is making her own IGGs and her immune system is showing (through blood tests) that it is ready to be tested. These tests will happen still once a month from our visits to Calgary, but her doctors expect her immune system to be fully ready come Spring. 

This is a poster I made for the door to enter Bella's birthday party room. I saved it for anyone that may pop by once we got home and taped it to our front door. If you get my kinda humour, you'll know why I think this is hilarious, yet, informative! 

;)

Professional Family Photos done at RMH in Calgary. Nov. 2015

PS: I wasn't kidding when I said I was so overwhelmed that I could barely cook eggs. If any of you want to send me easy, fast recipies, slowcooker recipies, etc that would be just what I need. I've had the support of the Home For Dinner program at RMH cooking for me for the last year and a half and Lyle's amazing Aunt Edie, for the majority of 2014... so I could focus on Bella like I needed. Now we are home, I'm overwhelemd with, well... life. I need to feed Bella, my husband and work around Bella's pump feeds and random scenarios that come up, like Bella getting sick or a second trip into Swift Current hospital in one day. The list can go on and I am still quite overwhelmed with regular life outside of my medical momma life with Bella. Also, I was no Betty Crocker before all of this anyways. ha ha... 

Also, if you are uptown or downtown Swift Current and happen to see a deer in the headlights, that's most likely me. I apologize to anyone who has already ran into me while running errands and  I either look quite scared or act quite dazed. I'll probably fumble through my coat, hand you my card and run away like a scared squirrel. Haha... K, I may not be that bad, but I feel like it most days. It's like I need to adjust to living in a foreign country, when this is my home town, I grew up here. 

Anyways, it'll get better and I'll learn to adjust. It's just so weird being home after what I've been through. 

Timelines

Please God, can I just win the Lottery so I can just stay by her side for a while longer? I'd give anything. 

The worry of how things will work out regarding myself returning to work is an extremely overwhelming thought that has been hanging over my head from the moment we returned home. Lyle and I can barely keep up with things as it is right now, how on earth do I find time or money to train someone to care for my medically complex child? Or will her medical complexity be gone by that time? or will it be a rollercoaster for another month, year, two years?  There are so so many unknowns, good or bad that make my plans to return to work quite daunting. The unknowns make it difficult to plan as well. Bella's most certainly not allowed in a daycare right now, but even when her new immune system is working in full force on its own...do I want to "test" it out in a germ infested daycare in a world where people are willy nilly about vaccinating their children from deadly diseases, etc. This is just too difficult to sort out right now, and  so much weighs on what Bella's new immune system will be like this summer, but I'm not sure I have that much time to wait for a plan.

Please God... the lottery... please. 

My mind is racing based on a lot of issues we've already had while being at home in Swifft Current. So much of Bella's medical needs are all on Lyle and I right now. There is just no time or plan to even put a thought towards finding someone capable enough with Bella to give us a break. 

Bella's been doing somewhat ok but still has bowel issues and medical issues keeping us on our toes. In a nut shell, since we've been home she's not eating as good, puking every 3 days, extremely distended and uncomfortable at night, barely sleeping because her guts are in termoil all while we try tiredlessly to maintain her fluids and keep her levels from going out of whack. Trying many tricks to keep her interested in food, eating and drinking while managing her stomch distension, stress and Gtube meds and feeds. We are in no place to hand this off to someone else in order to take a break.

For now I am going to keep the Faith

I'm praying Bella's Immune System timeline remains stable. That she gains an independant, working immune system sooner than the doctors expect. I'm comforted by the fact that we remain in close contact with immense support from her BMT doctors in Calgary and her wonderful Peditrician here in Swift Current. 

Everything WILL be ok. 

While it is still difficult to be on isolation with Bella after returning to my hometown after 2 years, I know our time for more happy celebration will come. Its difficult to not be able to even just take her in to our local coffee shop Urban Ground and say "Thank You" face to face with people that have supported Bella with so much love and generosity. I wish I could take her into the Credit Union, TnT Restaurant or Matrix Solutions and let everyone greet her with precious kisses and hugs, but we are not allowed. It is quite difficult to not bring her into the community that she calls home, the city of many friends and family that have supported her through so much. I hope you all know how much I wish we could say Thank You face to face. 

I'm grateful for all of you following our story through my blog and Bella's facebook page. This way I can know that my gratitude and "Thank Yous" do reach each one of you that have given so much for my daughter, my family. I have had the hardest of moments through this massive life transition and so much of the support, gifts, money, love and generosity have helped me in ways I just can't explain. I'm honestly speechless, it's hard to type what my heart wants to say and all that comes out is just a huge sigh of relief and a big exhale of 'Thank Yous.' 

I apologize for not updating Bella's GoFundMe page summary (the link is on her facebook page) but wow, has there been a mass amount of support through that source and Lyle and I are just blown away, Thank You. 

Time Flies

Well...I wouldn't normally say that annoying phrase if I was back in hospital on day 280 of strict isolation with Bella...but after a whole year of writing blog posts, time really has sorta flew by! I have written over 60 blog posts since December 2014, and here we are, a day away from 2016. If you would ever like to look back at older blog posts or if you have just recently started following our story through this blog there is an easy way to navigate through all the blog posts I have every writen and catch up. You would need to be on a desk top computer and then go to the blog: http://www.bellasmustardseed.blogspot.ca  

On the home page there is a bar that allows you to click on: home, contact, support, etc. On the left side of the screen there should be a Blog Archive and all the posts I have ever written on here are there, in order, by date. Come to think of it I'll have to check that I have things updated on there as well, like our address. ha ha  I'm typing on my phone at the moment from my awesome bluetooth keyboard...so I'll take a look at that later. Man, so much to remember, change and catch up on now that we are finally home. 

I wanted to say aswell, I try to keep things different on all my media outlets for Bella's progress updates. If you are feeling a little behind or that I may have missed something on this blog, it'll most likely be on Bella's facebook page: Isabella's Mustard Seed.  If you like & follow her page on facebook you'll catch all the updates I post, incuding the new blog posts on there, videos and pictures.

This is the big Courage bead Bella chose for her Discharge/Going Home bead from Beads of Courage. She chose a "meow meow" (kitty). Aunty Edie will be proud. haha. 

Bella's Bone Marrow Donor

Lyle and I will be writting back to her soon! We are still only allowed to send letters back and forth until we can finally get a chance to meet her come 2017. So we have an over due letter to send since we recieved hers last, back in October. But this made me remember to let you all know I am still collecting the post cards for Bella's donor. If you would like one please let me know and I can get one to you. Feel free to message me on Bella's facebook page or mine. (Kyla C. Thomson)

2016

Your Year to Sparkle!

I speant I alot of time picking out a memory book for Bella to look back on and add to,for her second birthday and the year of 2016 to come. On the front cover it reads, "This is your year to sparkle." 

2013/2014 were dark and scary

2015 Bella became the bravest girl I know and pushed her little body to the limits.

Now, the world is hers come 2016. She has dusted off the hardship of the shitty card she was dealt to her start to life and she is going to SPARKLE! 

I hope you all continue to follow our journey and thank you so much for keeping up if you already do. It mealts my heart and just makes me blush with happiness when someone tells me they follow my blog and mention details about Bella that lets me know they get it, they understand. 

In 2016 we are going to have so much to celebrate! Bella's 1st Re-Birthday (Date of her Bone Marrow Transplant will be March 25th, 2016. Followed by the best summer yet! When Bella's new immune system shall be in full working force and she'll finally be able to meet all of her cousins and so much more family and friends, and play with other children. 

Come Tuesday we'll be off to Calgary for our first monthly visit since being home. (Just a day trip for infusions and bloodwork) Here's to continued progress for our little bug's growing immune system and exceptional, happy results. 

We'll fill you in, in the new year.

•• Happy New Year Everyone ••