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 ••

Almost Home • Day +248

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 this view changing soon, going back home and what that really means for Bella. This view reminds me daily that I'm running out of time before I need to give up my nurse/mom role to someone I trust with Bella. This view now makes me think about all that must go along with that happening smoothly. 

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 and dadda play'n race cars in the teen room at the RMH. 

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'm so happy I finally have this contact card made! I call it my "Purpose Project" because I've come up with this idea while wanting so badly to make these extremely unique circumstances I've been placed into, purposeful... meaningful. If I can't get a nursing degree or some sort of paid certification out of the medical experiences I have had, haha, I at least need to put myself out there to help other parents in anyway I can, given our similar circumstances. Maybe you haven't spent 300 days in isolation with your child, perhaps only 1 week... If my card, or my connection can lead you to helpful tips, ease your worry by reading a paragraph I wrote or make you laugh from a picture I posted, then I've done my job, I've fulfilled my purpose. I just want to help other medical parents. 

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!

Please check out Bella's Facebook page as I have just posted today, how you can contact me or my friend Krista to get a postcard. Once you write your message and mail them to Bella, I will be saving them as keepsakes for Bella and sharing them with her Bone Marrow Donor when we finally get to meet her, come 2017. 

This is truly a thoughtful idea, thank you Krista. 

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! 

https://youtu.be/Yv4rMoUjUyk 

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???

Surgery #9 and More/Day +226 Post BMT

Recap:

-Bella is 23 months old today!

-She has spent 553 days in hospital from birth.

-We are 1 month away from a 2 year anniversary of NOT being HOME YET.

-We are currently on day 504 in the Ronald McDonald House in Calgary, AB

- Hoping we are home before Christmas. 

I have lots of updates from the past 2 weeks, but I am going to try and keep this blog post brief since I have had a request to keep them shorter (ahem ahem, Lyle...). I haven't been doing the daily diary posts this time as I have had to be in and out of clinic and the hospital unit with Bella has proven to make me quite tired in the evenings and I am usually crashing at 8pm these days, with Bella. haha  But! If I am too brief with something and you would like to ask me questions that would be totally fine with me. I am in a good place for that these days. So much is happening with Bella that often I leave out information that in turn confuses people. But I am in a good place these days to answer many questions. And of course, you all know how badly I want to help other medical parents. So please follow me on facebook or email me, which ever you like. I don't update the same way in every social media outlet, I keep Bella's updates different and unique in all of them. Here are my social media contacts if you wish to follow Bella and I through other means:

Bellas Facebook page: Isabellas Mustard Seed

My facebook: Kyla C. Thomson

My Instagram: @kylact

My Twitter: @kylact12

YouTube: Hospital Mom Hacks

Bella's hashtag: #BellaBrave

Bella has been doing really well. She is talking up a storm, wow. I have had so many compliments lately about how well she speaks and how much she talks. I love love love it. Some times she rambles on what sounds like 4 sentances in a row! And she can make clear 3-4 words sentances right now. Especially when requesting food or cartoons. My favorite is when she says, "Momma apples ya?" She's still loveing apples. 

Bella is still doing wonderful with her walking with the push cart. She is faster now and can turn the cart on her own when she gets stuck. Its also quite cute to here her say, "I'm Stuck!" when she runs into something. I've tried multiple times to coax her into walking on her own but she often stands, balances, gets excited and shouts, "No Hands!" and then plops down on her butt. I only want to try on weekends now, when Lyles here. I rather him here for her first steps unassisted. Its kinda funny though since he has said even if Bella does start walking...just don't tell me. As funny as that would be, I'd be too excited not to tell him. But we will see what this weekend brings...maybe her first steps!

Although Bella's eating is going very well, her drinking still is not. Even after needing to be NPO (no food or drink) for 24 hours because of her recent surgery, she suprisingly still did not drink, she only ate.  I'm still trying suggestions from her OT and SLP but we are stuck. I really hope she gains the desire to drink soon. She definetly needs her Gtube so I can tube feed her all the nutrients she needs from her formula. But if she was drinking what she needed to, she would not need the gtube. 

Bella had another wonderful visit with Grandma Davis. Bella loves grandma and snuggles grandma and does not mind at all now, if momma is away while she hangs out with grandma. I think she also knows how well grandma takes care of her doggy Jersey until we can come home. 

That there folks is a year worth of Bellas beads from the Beads of Courage Program. From Oct. 15th, 2014 - Oct. 24th, 2015.  Bellas first string of beads from Dec. 8th, 2013- Sept. 8th 2014 is in a glass vase at our home. The way I have chosen to use her beads is having every bead represent every poke, procedure and event in chronological order. Like a story from beggining to end. I'm also very excited for how I am planning to display them when we are done this hospital stay. My dad came up with a sweet idea that will be wonderful! 

Surgery #9

To be honest this could actually be suregy #10 or #11, I actually would have to look back in Bellas Bead Journal to be absolutely sure, but I'm pretty sure its #9. She's had a few surgeries for central lines both in Saskatoon and Calgary that I can't remember her exact total number of surgeries but its 9 for sure.

 Bella had her gtube revised to a Mickey Button and a skin biopsy for genetics. The surgery went very well and Bella was fully recovered by the next morning. With all the risks that come with surgeries and anesthetic, I thank God for is protection over her. It's truly amazing what she has been through.

 Its funny, I still remember the way I was for Bella's first surgery. I remember not being scared one bit. I remember the surgeon actually commenting on my poise. If I could describe why,  it would be to say, "There's no reason to be scared." There's just no choice, you just be brave and secure, not naive, but have faith filled hope and thats it. God is protecting her and I don't doubt that. I have faith every time and I choose to show no fear, especially for her, for my Bella. 

The Cancelled Part

Bella is no longer getting the ivad port line under her skin. She will remain with her double lumin broviak. It is bittersweet. The port meant less blood work for Bella and a step towards going home. Because of the Hemalytic anemia, blood work has had to be way too often and that just can not happen with a port. A port is meant to be accessed once or twice a month, not once or twice a day, like her Broviak can and is right now. Sadly this means I continue to wrap her up in saran wrap for every bath and she can not going swimming yet. The good news is she can still go home with her Broviak and as long as it remains very clean and NOT infected, she can just keep it as long as possible. 

The MRI and Nerve Conduction test for Bella's wrist was cancelled. The new rules in the hospital are that they do not transport patients while under anestheitc. The MRI is on the 1st floor and the OR is on the 3rd floor.  Regardless Bella's wrist doctors have decided an ultrasound of Bella's wrist may prove to be more effective anyway, when determining what sort of nerve damage Bella has there. The MRI would of actually been most likely too long with unconclusive results anyway. They thought even if it took an hour to follow her nerves through the MRI, it may not actually show them what they need and there for, not worth the risk of Bella being under for a solid hour. 

The Skin Biopsy

Bellas Geneticist wanted the skin biopsy as back up. They had figured there was enough of her "old blood" (her blood before transplant) saved in the lab in Winnipeg but a skin biopsy now would prove as back up just incase. Genetics amazes me, its crazy science. Its a crazy science that Lyle and I need in order to have a second child, SCID free. 

A Saskatchewan Resident on Bella's Case in Alberta!

At first I snickered and rubbed my hands together like Dr.Evil, threw my head back and laughed..."BUahahaha!! I will get you my precious." lol And then I told myself, "Self...be nice." 

I thought, I better not hurt her too bad, I need her now, as a tool to advocated for SCID screening in Saskatchewan and the awareness of the mistakes Bella endured in the Saskatoon hospital. 

She was a Resident doctor working with Bella in Saskatoon, so of all people, she can see the "then and now" and hopefully help me DO something about it.  If anyone can help me out, whats most important through all of this is medical teams realizing that if SCID screening was in place in Saskatchewan when Bella was born, she would not of had to spend so long in hospital and go through all that she had that 1st year. 2 years away from home could have only been 6-9 months if she was diagnosed at birth. If anything, I want to prevent this from happening to another Saskatchewan family. It's a miracle Bella survived 11 months before she was diagnosed. IF she had died before then, we would have never known the real reason why. 

So instead of grilling this resident on the horror of our 8 months in Saskatoon, I knew I needed her on board with what I needed her help with. Thankfully we have had wonderful converstaions and she is more than willing to help me with all of this, as an asset knowing Bella's Saskatoon history. 

The hard part was swallowing my anger. The second that Bella's BMT doctor "introduced" me to her in the hallway, a few weeks ago... I immedietly knew who she was. A memory from this resident working with Bella in Saskatoon is burned in my brain...because it was ruthless. I have great assumption that we are but a spec of memory to her, as I had to remind her about quite a lot of Bella's history and WHY she needed a Bone Marrow Transplant. 

The Memory 

It was May 2014, about a month before we came to Calgary the first time, thinking Bella's only issues were with her bowels and the effects of having Hirschprungs Disease. This memory happned after 3 needless, uneffective bowel surgeries and a Septic Shock episode that almost killed her in April 2014. We are now in a room on the PEDS ward, the Saskatoon surgeon was stumped after the 3rd bowel surgery did not fix Bella. My daughter was so destended her abdomen looked like Jupiter, she had a tube down her nose and throat sucking anything out of her stomach so she wouldn't vomit repeatedly as they still assumed she had a blockage somewhere that they couldnt find...

And this resident walks in before daily rounds that day. 

Once again I'm diligently standing at my daughter's crib side trying to hold her, comfort her while hooked to countless tubes and lines. Confused and scared and tired I try to go over every possible next step they could try, with the resident. Bagging her to think of something they haven't thought of yet that could work. 

The convo got heated as she could not answer my questions and my knowledge at that time proved to be greater than hers so I could tell she started to become annoyed  with me. 

Finally she abruptly said 7 words that left me in shock and despair...

"There is no magic pill for Bella!"

And she walked out. 

Guess what lady!!! There was, and its called a Bone Marrow Transplant!! 

Aaaand BOOM goes the dynamite. 

I'd give anything to rub that in her face, but I can't, that's not me. Like I said, I need her alive...hahaha, to help me advocate for SCID screeing in Saskatchewan. 

Wow...I'm not following Lyle's "make the posts shorter" request at all. ha ha Sorry hunny. I'm sure everyone's grabbed their glass of wine by now to pit in for the remainder of this post. :) 

The joy of "A Year Ago" on Facebook. This came accross my Facebook memory, a post I made a year ago. This was about a month before I thought of starting a blog to document our medical journey in hospital. It was also before I thought of starting my YouTube channel to help other parents with little ones in hospital.  I remember just having bits of poetry of words come to me and I just felt others needed to hear it. And if I didn't write it down, they would pass before I could remember them.

I can't tell you how much relief I feel with finally using these outlets. The blog, Bella's page, my channel all make me feel much more purposeful. Like I've said before, I could cry, whine and wail about the hardship and mistakes my daughter has had to endure...OR I could use my writing skills to get as much info out there as I can, to help others and prevent pain for others. As long as I am writing, I know I am helping someone and that matters. 

I sometimes wish I would of known to start writing like this since the first step into hospital care for Bella. But I couldn't of ever known. That first year was month by month, thinking we were going home every other week. I was in no place to write like I am now. I've actually started my ideas for a book. Yes, I am writing a book. Who of all of you would buy it?!? 

I've found a way to remember and write about as much as I can from our first year in hospital and this second year. It's going to be great, but definetly an ongoing project for me, for now. So stay tuned. 

Timeline Update/ Overcoming Hemalytic Anemia

In a nut shell, the Hemalytic Anemia that Bella is battling has set us back at least 5 weeks from a going home date. The 1st week of trying steroids and the 4 doses of the Ritux med that takes 4 weeks. Not to mention the daily blood work. Good news: Bellas hgb is starting to stabalize above 80! That means the $10 000 Ritux med is working and with the support of the steroids is stabalizing Bella's hgb. Her last dose of Ritux is this coming Monday where Bella will have to be in a clinic room for the 6 hour infusion of the med. It will be her last infisuion and then they begin to ween the steroids off. 

Bella developed these bumps on the tops of her hands and feet after the 2nd dose of Ritux. They have since gone away and her doctors are not worried as she is covered on many profolactic meds right now. They do speculate that the bumps may be a reaction to the Ritux med but they arn't certain. 

Bella's Calgary BMT team has spoken with the team in New Castle, England who is aware of Bella's case. They have given our Calgary team great insight and support. They have told us they have actually seen this before in some SCID patients. They have also said that every patient has responded differently meaning they arn't sure if the Hemalytic Anemia will take a while to fix or if this last dose of Ritux will be it. Its looking good for Bella seeing as she is not on her last dose of this med yet and already showing stability above 80 this week. 

Like our Immunologist Dr. Wright has always said, we hope to be home before Christmas. I'm still grieving from the mentions of us being home by the end of October.

Bella's Immunizations Timeline

So the Ritux med is not just a set back for a going home date but also a set back for Bella's Immune System to have a chance to show us its working on its own. The BMT med Cyclospoirn that Bella is being weened off of takes about 3 months to get out of her system. So for example, until that med is out of her system we don't see what Bella's Immune System can do on its own, there for we can't test it yet, therefore no immunizations for her yet, therefore keep her on protective isolation... ugh. 

Well, this Ritux med takes longer to get out of her system, like 6-8 months longer. This was very frustrating news. Both of these medications are what supress Bellas Immune System right now and make her vulnerable and unable to fight viruses yet. So we wait. 

The cyclo med should be out of her system by February 2016. The Ritux med should be out of her system hopefully by May 2016. So its really another 3 month set back in terms of testing Bella's Immune System and for example, allowing her to play with friends and be around children. 

So hopefully in Spring 2016 Bella's counts show that her Immune system is ready to be tested and then we can start her Immunizations and begin leading more of a normal life by seeing friends and family more often. She will be 2 1/2 years old by the time we start her immunizations. 

So given that information, all the more reason to remind everyone, that for those who want to visit Bella between now and well...the rest of her life, you must have the flu shot. 

A friend of mine wrote this on facebook and I appreciate it very much. She makes the reasoning clear for people that question the flu shot. 

Also, the reason why myself and anyone around Bella can NOT have the nasal spray version is because the spray is a live virus that is actually contagious for 10-14 days post spray. Thankfully I can get my flu shot at the Ronald McDonald House for free as they have a clinic for the families here. And they do not allow the nasal spray in the house here. 

1 Month Until Her 2nd Birthday

Oh boyee... So she's 2 years old in one month. I want so badly for this to be a celebration for her at our home but that option is not looking so hot. I get a bit of anxiety around planning her birthday. I want for it to be such an amazing experiece for her because she has had to live in hospital for 2 years but at the same time she's 2 and well, not allowed to be around crowds of people or other children. I have a few ideas in mind for December 6th 2015, that I'm working on. One of which being a come and go celebration where I book a room at the hospital. I like this because then all of our Calgary friends and family can stop by and see us and see her before we go home to Saskatchewan. As well as her nurses and medical teams from Unit 1, 2 and 4 in ACH. 

I'll keep thinking on this and keep everyone posted on the plans we decide on. Either way I know a lot of friends and family will show her love on this day, so I'm not worried about that happening. :) 

Bedtime Stories with Daddy

So I'll leave you all with a link to a video I posted on my YouTube Channel of Bella and Lyle enjoying some reading and singing before bedtime. Bella's singing almost melted my heart just as much as her giggles in the "apple" video. She absolutly loves animals and knows so so many of them and the sounds they make. And like she shows in the video, she knows when to chime in on her part of singing during Old McDonald's "EI EI Oh" song.  

With a "Baa Baa" here and a "Baa Baa" there, goodnight everyone, and thank you for following our story. 

Video Link:

https://youtu.be/7TM3a6GiYag 

Treehouse and Chill • Daily Diaries

Thursday Oct. 15th 2015 

(1 week ago)

I think I've come up with a better way to blog that I am goin to try so it's not so overwhelming when I have a bunch of updates pile up on me and then things get crazy with Bella's hospital life. So I'm going to try daily diary type writing on here, save the draft, and come back to working on this post when I have time in the evenings. This may be an easier way of posting in Bella's blog maybe once per week. I also have found some moments that I should of shared, are missed when I don't write about them right away. 

A Side Issue - Bella's Right Wrist

This has been on the back burner since Bella's BMT back in March but her wrist doctors have been on the sidelines still supporting Bella with improving her range and use of her right arm/wrist/hand/fingers. 

Back Story: In my whomb Bella's right arm was very squished and stuck in the same position for a while. So bad so that they couldn't even measure it properly through an MRI when I was 7months pregnant. And when she was born her thumb was flush with her wrist, it was that bent. So the doctors know there may be some sort of nerve damage she has there and it has affected her use of this wrist/hand.  

Since birth Bella has had to have a few different braces/splints on her wrist to help stretch it out and give her more range of motion and use. She uses it as best she can and definitely doesn't ignore it even though she can't use it as well as her left hand. Whats affected most is her grip. She also has limited extension from her elbow being so tight from it being so tucked and squished for so long. 

The doctors are not sure how this nerve damaged happened or even exactly where and what the damage currently is. They need to figure this out before deciding if a surgery will fix it. 

So what now?

Bella had a nerve conduction test on Tueaday that was not pleasant. They had to send pinching electrode shocks about 20 times through her right arm. She was pretty strong and handled the first couple , but cried through the rest of them. They still are unsure as to what exact nerve is damaged and how. But they need to know and do more tests to figure out what nerve to fix. If its the nerve, the nerve connection to muscle or just the muscle causing this issue? If a tendon transfer surgery fixes this they need to know what tendon to transfer so they don't transfer a weak one. 

Bella's use has also improved so this makes them wonder if surgery should happen now or later. The next test to help in this decision would involve them putting tiny needles into Bella's arm to test the nerve to muscle connection. Knowing Bella has a surgery coming up on Nov. 4th they may try to do this test then, while she's under so it doesn't cause her pain. They may also do an MRI at this time to help understand her nerve damage better and then be able to really decide if a Tendon Transfer surgery is the fix, or if Bella will just regain full use over time. 

The 9th Surgery Decisions: 

This 9th surgery for Bella is meant to be a "happy" one because it's a step closer to home. But now with the recent hemolytic anemia issue, I'm not sure if this surgery will be postponed or not. We have 3 weeks to decide. Changing Bella's Broviak lumins (the iv lines dangling from her chest) to an Ivad port (button under her skin) before going home to Swift Current was supposed to happen because #1 she should only be requiring blood work once every 2 weeks at most before we go home and #2 because the port is less risk of infection. Well... Our recent hospital admissions have meant DAILY blood work. So that is a step backwards in terms of Bella getting this Ivad port. I haven't spoke with the docs about this yet, but I'm praying this all smooths itself out this week. 

I'm hoping the surgery still happens because Bella is also supposed to get the much "easier to use" Gtube Mickey button for her belly. Genetics is also chiming in to get a skin sample because Bella's original blood before her BMT (to use for genetic testing) is in Winnipeg and there is just a tiny bit left. And from her BMT, her blood and blood type have changed to the donors. Lastly is that the wrist doctors need those 2 tests done for her wrist while she is under anesthetic. 

A better afternoon

By the end of the day Bella was showing me a glimpse of being back to herself. She was walking with the pushcart at lot and just loving it, giving me snuggles and we even had a mini dancing session. 

Friday Morning:

Things took a turn again and her hgb started the day at 81. Basically her cut off point to need a transfusion. So this is telling us that the steroids we tried for the past week are not doing their job. We can wait and hope that maybe this is a slight dip and she'll come back up by the time they check it again Saturday morning. But by the afternoon Bella still had no energy, quite upset and looked more pale. 

Friday Night @ 2 am:

I'm up right now because of a major flaw in this medical system and I'm more than pissed about it. To add to this I had to deal with a power trip, young resident doctor you obviously didn't get the right communication from Bella's day team of doctors. I have been through this way too many times and I'm sick of the lack of communication, and preventative measures/ plans that get thrown out the window when you leave decisions to power trip snot nosed residents at 2 am.

 Sick of it! 

Let's call her Dr. Peabrain. 

Bella's blood pressures have been high for the last week. We know this because of the steroids she's on. They were on a high trend yesterday so we made a plan with Bella's day docs to set perameters so we are not kept up all night with 500 fricken blood pressure tests on Bella's arm and waking her up for the oral med under the tounge. 

So here we go, 2am Dr.Peabrain has to fight with me in the hallway because I'm not going to let her do another fricken bp, that wakes Bella up, for nothing, when we just did one 15min ago!!! 

And you know what Dr. Peabrain does...threatens me with Brain Bleed theories! Are you effing kidding me??!!

#1 You do NOT threaten a mom ( or any parent for that matter) who has sat at their child's beside day after day, watching anxiously while doctors at times seem to solve problems like she's a science experiment. You don't NOT threaten a parent when what they need 99.9% of the time is REASSURANCE of a proper med dose, or plan. 

#2. Don't be a fricken Dr. Peabrain.

She completely denounced the plan I had made with the day doctors about Bella's night time blood pressures and when I questioned her plan, she went on a condescending power trip of threats like I wasn't taking my daughers blood pressure health seriously and proceeded to threaten me with Brain Bleed theory.

I just wanted to be reassured that her change of plan (though it was different from the trusted day team doctors plan) was safe for my daughter. 

Dr. Peabrain did not do that. She did the opposite in a real bad way. She threatended an already exhausted, worried mom with outrageous theories causing her (me) to staying awake longer, unrested, stressed, more worried and doubtful.

I am happy I am able to finally communicate this hidden flaw in our medical system and I need to find Dr.Peabrain and explain this to her so she doesn't do it to another mom or dad... and I will. 

But if you are a nurse or doctor out there reading this right now, please take it to heart and help prevent scenarios like this for other moms and dads. Please stop the production of Dr. Peabrains in this world. 

Saturday Oct. 17th

This day is Treehouse and chill. 

Bella is exhausted. Too tired to even utter "momma" and crying a lot from being so uncomfortable. I had an amazing, experienced nurse let me cry on her shoulder this morning as she reassured me Bella's going to be ok, in all the right ways today. 

Bella's hgb fell to 69. Waaaaay to low again. She's got her 4th blood transfusion (in one week), running right now. 

Bella has been very uncomfortable. Her energy very low due to HGb of 69, her tummy is very distended and she is backed up because of the anemia and steroids. She crying in waves and agony because of the steroid and the aches it is causing in her tiny body. The doctors will be in soon to discuss next steps for treating the Hemalytic Anemia. And hopefully after the blood transfusion, stool softener, Tylenol and nap, she'll wake up feeling much better. For now, it's Treehouse cartoons and chill time.

New Plan / New Med

We are starting the medicine Retuxamab today to fix Bella's hemolytic anemia. The doctors are very confident this will be the fix. Problem is they had to get permission to use it and to qualify to use it they had to try the course of steroid meds first. It's also like a $10 000 med. Bella will be given 4 doses, 1 per week. Retuxmab is good because it means we can start taking Bella off the horrible steroid (Predisone) that causes her so much hurt, anxiety and just makes her a completely different kid. The crappy part is that Retuxmab must be given via iv over 7 hours! I'm calling it Bella's "high maintainance med." ha ha. It's technically a chemo med so there are many precautions and procedures with giving Ratuxabab, although it does not cause any chemo type effects at all, so thats good. And already within the first hour it brought down Bella's rediculously high blood pressures she's been having. So that's really good as well. 

The rest of this day turned out wonderful and I am so happy Bella's doctors are quite confident with this medicine fixing the hemolytic anemia issue. If all goes well and Bella's hgb stabilized and continues to stay around 100, we could be discharged and able to be back at the Ronald McDonald house later this week.

Tuesday, Oct. 20th

Even though we are still in hospital things have been going pretty well since Saturday. Bella's hgb has held steady with and few dips, but only to come right back up without needing any blood transfusions since starting the new Retux. Med. I'm getting her out of the hospital on daily passes and those have been going good as well. Her hgb is hovering around 80-85, but she's also getting 2 blood draws a day and the draw for her cross match was quite large (10mL). Once she has a couple more steady days, then the doctors will start to wean off the steroid med and we'll hopefully be discharged. Our days in hospital look mainly like this:

Wake up around 7/7:30am

Nurse does vitals at 8am 

I get Bella's meds and breakfast going

Watch cartoons, wait for Doctor 

Doctors assesses Bella

Between 10am-12pm I wait to go to Rounds (daily meeting with Bella's medical care team)

Get Bella's 11am feed/snacks going

Bella naps 11:30am- 1:30pm

Take Bella on pass to RMH 2-6pm

Back to hospital room for assessment and bloodwork. Nurse assessment.

Meds/bath/get ready for bed.

8pm, New nurse and his/her assessment

Sleep another night in hospital

There's a lot more to a typical day then that, but that's the gist. 

Wednesday Morning

Amazing, Thoughtful Friends Brighten My World.

Right now I am typing this blog post with so much ease! My friend Bradie suprised me with a bluetooth keyboard that works with my phone and iPad! How did I not realize these existed before?!  This may get a bit dangerous (evil laugh**) as its going to make it a LOT easier to write more, which would mean longer blog posts. My kind husband has informed me they are already a tad long to read. ha ha. Either way I'm sure I have some followers out there that look forward to my weekly novels about Bella's progress. 

Selfie while using the Bluetooth keyboard for this blog post. 

Thursday, Oct. 22nd 2015

This week has turned out to be a lot better for Bella, she's feeling really good even though we are still admitted in hospital. We have been taking daily passes to go out for walks and hang out at RMH. Her hgb has been down in the morning and back up in the evening as they are drawing blood from her and checking twice daily. After the 4th day of this "up and down" hgb level buisness, they are more confident that she is actually steadily above 80 and that there may be some lab errors with the early morning draws. We'll chat at rounds today, but hopefully they will go back to checking just once daily now. I also am anxious about them accessing her line so much as that poses more risk for infection. And less blood work is a step closer to home, so lets get back on that train. 

Me:

Well, I've been feeling a lot better and less down. I've managed to shove the setbacks Bella has had, to the back of my mind and try to take things one day at a time lately. I know once we are discharged, and back to just weekly clinic visits, "going home planning" will kick back into gear. So far its looking like we could be discharged by Monday. Bella has her 2nd dose of Retux med (that takes 7 hours to infuse) this Saturday. They most likely want to keep us inpatient for that. So, next week we'll hopefully be back to our normal routine at the Ronald House. And my mom is coming to visit too! 

The doctors are happy with how well the new med is working and getting rid of the Hemolytic Anemia issue. Bella's immunologist is very confident after the second dose of Retux, that we'll see her hgb levels stablize even better at a higher more normal level. 

Mommy Break

Thanks to my hubby's wonderful sisters I had a much needed Mommy break last weekend and was able to relax and have fun at his sister's Stella and Dot party while Lyle stayed with Bella. It was such a wonderful much needed night out.  Thank you so much, Jo and Melissa. 

What A Gift!

Keep Calm and be Bella Brave

A wonderful coulple I know at the house (RMH) have a sweet daughter also named Isabella. Their cousin had these amazing shirts/sweaters made for their Isabella for the Rock the House Run back in September that read "Bella Strong." As a gift she made two for Lyle and I! (Lyle's  Tshirt is back and white) She even added details that I absolutely love like: Bella Brave, the mountains picture, She Has Moved Mountains and #BellaBrave.  

Thank you so much Catherine, we love them!

Today, RMH had some pretty amazing guests stop by to spend time with all the families. I was so happy I was able to take Bella on pass from the hospital to meet all these amazing guys, The Calgary Flames! 

Tonight I am going to bed happy. Happy Bella is feeling so good, happy her medications are working, happy she is happy...life is actually pretty good in this momment. I can take a deep breath and smile tonight before I rest my head. 

...I could be working on more YouTube videos...sheesh I've gotten behind on my Hospital Mom Hacks videos. I have about 4 ideas ready right now, just haven't got around to posting them on my channel yet. I still receive comments from parents that my videos have helped, and I tell ya, what a good feeling to have...knowing I've helped someone in that way. I have even recently seen that I have gained a few more subscribers to my YouTube channel as well. So I'm happy my videos continue to support hospital parents in need. 

Thank you again for following my blog for Bella, it means a lot to me. Just knowing many of you take the time to read whats becoming my weekly novels...truly means a lot. Thank you.

Not sure how many of you know this about me, but I love memes...I find them hilarious. If I'm having the worst day, a meme always, always makes me laugh. I created this one just in time for flu season. Get your flu shots people! Not everyone has a fully functioning immune system. Remember, Bella was born without one and we are going to make sure her new one has every possible chance to grow without harm.