Sunshine & Rainbows - Day +327

Some say, "It's not always sunshine and rainbows." Welp... In this post it is! :)

We have lots of good news to share and we're super stoked about it. :) 

Those were daddy's glasses Bella's wearing in the cover photo. 

February 15th, 2016

2years 1week in Hospital from Birth

Day +327 Post BMT

Day 65 at Home

Calgary Clinic Visit•Feb. 2nd, 2016

We had a LOT go on during this visit for Bells's second check up with her BMT doctors. It started with Bella getting sick juuuust as we pulled into Calgary that Monday evening. What I first thought was maybe her being car sick turned out to be Bella showing us she could fight and get over a random (non-serious) virus/bug on her own! If you follow Bella's Facebook Page you'd remember my updates posted about that. But in short we were happy to realize that she is capable of that now, fighting viruses. The blood tests from her lines came back  negative and her nasal swab also came back negative. When the doctors run those tests at the first sight of a fever, they check for all the major big bugs to rule out anything serious. Bella took about 5 days of rest, Tylonol and extra fluids (via her Gtube) to get over what ever bug she had. 

Front Page of the Calgary Herald

Before this visit our Immunologist doctor had asked if she could recommend us to be a family who tells their story for the Alberta Childrens Hospital (ACH) Radiothon. So a senior communications director of ACH contacted us to prep for being interviewed at the Radiothon. The Calgary Herald also found out about our story and wanted an interview for their paper as well. I didn't realize we were Front Page material!  

Bella and I were in clinic awaiting her IVIG and RSV infusions when the reporter came to interview us, take pictures and hear our story. They masked, gowned and gloved to keep Bella safe. About ten minutes into our interview, Bella's Immunologist Doctor came in to update us on Bella's results from her recent Immune Panel bloodwork. It was exciting to share the good news with the reporter's team in the room with us both of us, hearing it all for the first time. 

Bella's doctor had told us that Bella's new immune system, donor cells, etc are doing so well that we can begin to lessen her isolation protocols! For the first time in Bella's life we were given the go ahead to allow her to play with friends! When the Calgary Herald Reporter heard this for the first time, along with me, and realized what that all meant, she was just in shock. And from there, made it the focus of her article. We were exstatic! 

It's such a weight to be lifted off my shoulders when I hear news like this from Bella's doctors. The freedom to rid myself of that worry is such an indescribable feeling. It's like another link from the stress chain, I can break off. Bella's doctors went on to tell us that play dates and mom groups are ok now, as long as the other children are not sick (of course) while Bella plays with them. They even said we can venture out to restaurants for family dinners, but we still must avoid highly populated areas like busy malls, waiting rooms, or crowds. And still no chicken pox parties. Haha

Since we have been home with this good news, however, we have yet to give Bella a play date with friends. But we are eager to start soon. We wanted to give her more time to make sure she was over that fever bug, and then we have been waiting for her friends in Swift Current to be healthy as well. All her future friends are daycare age, so it's a tad tricky to find a healthy, germ free friend in the middle of February. But soon!

Radiothon!

On February 3rd at 8am we were able to share our story in support of ACH and all they have done for us after living in hospital there with Bella for 18 months! 

So if I wasn't a tad nervous already, I then had to sit down beside Paul Brandt! He and 3 other radio hosts from Country 105 had a few notes about Bella and asked us questions about what we have been through and how ACH supported us, so intern, please support this amazing hospital. As much as I wanted to advocated for SCID screening to be implemented in all our provinces, the Radiothon wasn't the place for that. Also, the Calgary Herald already helped us with that angle. For the Radiothon we wanted to express our gratitude to the amazing, life saving Bone Marrow Transplant team, doctors, equipment, etc. That part of ACH is what saved Bella's life. 

The interview was quick and of course I cried, cause I'm a sap. Lyle even tried coaching me a bit prior, but as happy as I am going in, it usually only takes one word to trigger my waterfall of tears...everytime. This time I think it was the tears in the female radio host's eyes that I caught a glimps of, that triggered mine. But it's ok, the stories that ACH families share are priceless and it is so needed. The donors that give so much to this hospital need to hear what their support truly means, and that will always involve happy tears. 

I knew I was either going to ramble on and rely on Lyle to save me or cry, haha, so I write down a few notes to make sure I got out what I really needed to say to everyone listening that morning. Here are what I call "Bella's Stats." 

When I showed it to the radio hosts their eyes widened with shock, as they saw the list of 30 some services Bella required at ACH.

I also wrote down what I did not want to forget to say. Knowing so many Calgarians, Albertans were listening in during that prime time, 8am commute to work, I wanted to make sure I didn't forget some imortant words: 

"I know if I can get Bella's story out there  more people will understand how much ACH needs support, how much this hospital has kept my daughter alive, cured her and made it possible for us to bring her home.  I also want to say, for those who just can't give and it pains them to hear our stories and not be able to give to ACH, please know your effort to just understand what us medical parents and children have gone through, is priceless. It means a lot, Thank you."

I didn't get the chance to listen to our bit on air (they'll send me the link to our segment soon) but I sure did get a chance to listen to all the other families stories during the 3 days of Radiothon, and wow... 

There were so many stories that were so immensly powerful. I honestly couldn't stop crying. Happy tears and broken heart tears. But this is not just ACH pump'n its tires, these stories are powerful because they educate people in huge ways. I learned an amazing amount about so many different diagnosis, procedures, family trauma, that I never knew about. It gave me a priceless connection knowing that so much of the pain Bella , Lyle and I endured was understood by so many already, in so many ways. And in a way, that helps me a lot. And then also hearing all the success stories similar to ours just gave me this boost of happy energy knowing so many more lives of children are better because of this hospital. 

Hopefully I'll receive the links to our Radiothon interview and the Global Calgary TV interview we did aswell. Yes, that's right, we did 3 interviews in one day! Follow Bella's Facebook page for updates. :) 

Facebook page link:

https://m.facebook.com/Isabellas-Mustard-Seed-848573408556136/ 

MAC Bug Update

The Non-Tuberculosis MAC bug that Bella was diagnosed with back in September is being treated by having her on 3 different antibiotics. We found out from Bella'a Infectious Disease Doctor that these 3 medications are to be 100% covered by a TB company that supports patients linked to this disease. 

The MAC bug discovered in Bella's lymphnode back when they did surgery to test her lymphnodes for cancer, is a bug that you or I (with working immune systems) may actually have. But it doesn't affect us, cause our immune systems work. But when discovered in someone with no immune system or immune compromised, can be deadly. Bella was to be on these antibiotics for at least one year, once her new immune system is competent. So over a year on these meds...very expensive. To hear that they are to be 100% covered was wonderful news!   Currently our pharmacists in Alberta and Saskatchewan are looking in to getting this all figured out for us and hopefully we'll receive back pay for what we have already paid. There is a chance that because we are in Sask. The one med may not be covered, but at least 2 could be. And I did confirm it was quite a miracle that the doctors discovered this MAC bug in Bella when they did, because untreated, it could of killed her. They found it by happenstance when they took the lymphnodes out to check for PTLD post Transplant. The fact that they also found this MAC bug at that time, saved her life. 

I've discovered a lot about the coverage our province provides since we have been home, and it's not as good as Alberta. There are big differences, cost wise. So those medications I just talked about, all 3 are covered in Alberta. But in Sask. Maybe two are, and our pharmacist is jumping through hoops to figure it out. Also Bella's highly specialized formula, formula you can only buy from a pharmacy, not covered at all in Sask. Bella's dietician tried applying multiple times stating Bella's is still 100% reliant on formula via her GTube. But Sask. Denied our requests. Alberta Homecare coveres 100% of Pedialyte cost...not in Sask. And Bella requires at least 300mL of Pedialyte per day to help with her fluid levels and balancing her electorates. Pedialyte is a prescription for Bella because she can not properly balance her fluids given a few reasons. 1. She has no colon. 2. Kidneys recovering from BMT. And 3. All the current medications she is on. Without Pedialyte her potassium levels suffer and her sodium levels jump around. These can not be let into dangerous levels, they must be maintained with no major drops. 

So I guess that's one little rain cloud amoungst our sunshine and rainbows. Ugh. But we'll do what we can for now.

Back to good news...

Bella is having surgery to get her Broviak Central Line taken out! This will be Bella's 10th surgery, but it is a very good thing. She has had this line (that they use for all blood work) since March 2015. It has served her well, but she is so much better without it. 

This is an older photo of Bella's central line back when it went through a repair.

So what does it mean to get this little sucker out?! 

It means I don't have to tape half my daughter's body with Saranwrap and waterproof tape for her baths! It means no more stress and worry about horrible, deadly infection stemming from the line like the one that almost killed her and sent her into 4 sepsis attacks last March. It means I can take her swimming and actually go to mom and tot swimming lessons with her! It means no more paying for all the expensive supplies that go along with having a CVC line sewn in your chest! Very good news. 

Taking this line out also means that Bella will have to go back to getting poked for blood and infusions. However, after much discussion with Bella's doctors, the risk of leaving this line in her chest is way way too high for infection and so even though Bella has bloodwork more than once a month right now... She is progressing and is way better off with a few more pokes than risking leaving this line in. 

I'm sure I will bite my tongue on that the second they have to poke a needle in her arm, but I know and her doctors know she is progressing towards less and less bloodwork, which in turn will mean less and less pokes. 

I've also received some very helpful tips from other parents who's kids currently need to be poked for blood work and I'm sure it will all be better than leaving that CVC in. I plan on making a pre-poke package to help Bella, containing everything that could possibly help her through getting a poke for bloodwork. Please send me more ideas if you have some! So far I know it will help to make sure she is quite hydrated prior. I remember the blue band they tie on hurts  her, so I'll remember to dress her in a loose long sleeve shirt so the band does not pinch her skin. We can ask the nurses for numbing cream prior to the poke on the poke site. And of course a reward for after, to help dry those tears. So far I think stickers or her current favourite treat...French Fries will hopefully help. 

I do know, I may be going back into that hard shell of mine who finds it extremely difficult to hear about your healthy child getting their once a year flu shot and how horrific it is for them. 

Between the 3 Broviaks (surgery to place and remove this type of CVC) and 2 attempts at PICC lines in Bella, that all took place in Sasktoon RUH within the first 7 months of Bella's life...

She endured hundreds of pokes. Hundreds. It was horrible and too painful to go on and tell you where I was going with that information. I'm just going to leave it. 

Genetics

More Good News!

We are very very excited to finally meet with our Genetics doctor come March 1st. She emailed us last week stating the second round of testing they did with Bella's old blood came back with a result!  This means they have found a promising second genetic mutation that could mean confirmation of a diagnosis with Bella and in turn allow us to try for having a second child through PGD and IVF. No... Not part of the next X-Men movie.  We are very excited to get the details from our Gene doc when we meet with her in person. Stay tuned. :)

Bella is doing quite wonderful this month and we are so proud of her. She is walking more and more and more! Lyle actually made the call to hide her push cart and see how she does. Now Bella is walking everywhere, no pushcart!  She walks all around the house without falling now and is not requesting her push cart. It's so beautiful to see her strength in this way. Even with all her energy, her naps have been getting shorter. She's only napping for about an hour now where she used to nap for a solid 2 hours at least. But she is also sleeping so well through the entire night, we are quite spoiled that way. Currently her favourite activities right now are colouring and anything to do with letters and ABC's. So much so that this little genius knows 17 letters in the alphabet right now! And she's only 2 years old. Ya, I know! It's like, should she be on the Ellen show for this, or what?! Ha ha. 

My curiosity started when she began playing with her foam letters and calling them by name as she held them in the air. At first it was, "Momma, a B!"

And I thought oh, ok she knows one. Maybe she saw it on Super Readers cartoon today. Then, "Momma, an R!"

Yep, she's holding up an R...hmmmm, is this coincidence? 

This happened more and more. And so of course the teacher in me got very excited and I needed to test her knowledge of all the letters. We started singing ABC's and looking at all the letters around her play table as we sang. She would want help drawing the letters on her Elmo ABC app on the iPad. That was huge cause all she ever did on that iPad was Toopy and Binoo cartoons. Now, straight to Elmo's ABCs writing. And now, she knows 17 letters, all on her own! The letters she knows are: a,b,c,d,f,i,m,n,o,p,q,r,s,t,u,w and x) 

Thank You Unit 1 Staff at ACH

During Bella's February clinic visit we finally were able to drop off our Thank You to Unit 1. (The Unit where Bella had her BMT). I was very happy to finally find a way to express our thanks to all the nurses, doctors, specialists and staff that made this unit Bella's home for her. The staff there made the unit for Bella and I, a happy place where you would expect so many tears, they made me laugh amoungst heart breaking stress, they made it possible for Lyle and I to bring our baby girl home. How do you even begin to think any 'Thank You' will be good enough. I hope what I made for them shows them our endless thanks for all they have done. 

I created baskets with over 100 personal Thank You cards so that every staff on the Unit could read or take a card. Each card had a unique momment that we wanted to give thanks for. Some moments/memories are from me, Lyle, Bella and our parents. Many of the moments are something a nurse, doctor or unit one staff did or said. 

Although so many moments have a specific Unit 1 person, nurse or staff connected to it, I made them generic so that even if it wasn't that specific nurse that was a part of that memory, the nurse that does read it knows what her and her colleague have done for us and probably other families as well, that means so very much. 

Here are just a few more examples of what I wrote on the cards:

Rare Disease Day is coming up! This will be February 29th, 2016. This is a significant day for Bella because she has a large amount of rare diagnosis: SCID, Hirschprungs Disease CHH and NonTB-MAC. This day is very important and I hope to help more people become aware of what this days means to people like me and my family. If you can support Rare Disease Day, then it means you support families and all they go through with the diagnosis of rare disease or what can be worse...no diagnosis. For Bella, this support helps keep the Genetic programs in place. We have relied so very much on our Geneticists to understand what is going on with Bella so she can be treated, so we can support her growth and hopefully avoid SCID with our next child.  

Please try to find out what your community is doing for Rare Disease Day, and if the only way you can show support is by wearing jeans, that's great too. Wear jeans for Bella! There are many sites that can help you learn more about Rare Disease Day: Global Genes, the Rare Disease Foundation, and Rare DiseaseDay.org. 

Telemiracle 40! 

https://www.telemiracle.com/index.cfm

Telemiracle is a HUGE Saskatchewan charity that supports Saskatchewan families needing medical assistance or equipment. The Kinsmen have supported my family in big big ways for Bella and all her medical requirements and we can't wait to give back to them and show our appreciation.  That's right folks, we are doing another interview! But we are happy that this one is in support of our own province, Saskatchewan. CTV will be coming to our home before Telemiracle airs, to record our video testimonial. We of course can not travel to Regina and be a part of the big stage show, as much as we'd love to do that, it would be too risky to have Bella amongst that large crowd of people. So Telemiracle's filming crew from CTV are coming to us! Stay tuned for this awesome video of me crying again...just kidding. We can not wait to help support Kinsmen and share our story so that more and more people understand what this amazing foundation has done for our province and families like mine and our Bella. 

Please support Telemiracle 40 in Regina, March 5th and 6th this year. And stay tuned for our Video Testimonial. :) 

Learning to Walk Again, I Believe I've Waited Long Enough • Day +306

If you can listen to Walk by the Foo Fighters right now, do. It's so fitting for Bella's life after coming home, it's like her fight song. 

January 25th, 2016

Day 44 at Home

Day +306 Post BMT

Let's start off with some great news...Bella is loving toast! For the past week she has really gotten a lot better with her eating and drinking again, since the setbacks from coming off of the steroid Predisone. So her favorite food right now is toast, she'll eat at least 3 slices a day, one at every meal. And it's adorable how she says toast, like "tewsssst." 

A quick back-track to Bella's first Calgary clinic visit since being home, that was on Jan. 5th. That appointment went very smooth and once again Bella was an excellent traveler for the long drive. Our main concern at that appointment was Bella's extremely distended abdomen, vomitting issues and what it all meant? We were reassured by Bella's doctors that it was all an effect of coming off the strong steroid that she was on for so long. They had seen it lots before and that it could take her a while to get back to her 'normal.'  As reassuring as it was to know the cause, it made for a hellish month at home. Bella's stomach was so distended it scared us. We couldn't sleep and it was like walking on glass with every symptom. I think I called her doctors quite a bit so they could help me through and ease my worry. But to worry, every other second, "What if we need to go to Emergency? What if her bowel is perforated? What if it's nothing but what the doctor says it is? What if it's actually a blockage? When will it stop?"  To live with all that worry, flooding back once we got home, was torture. Thankfully after a solid month it finally went away. Unfortunetly it caused a lot of setbacks that were extremly hard on Bella, Lyle and I. Bella had to be put on more medications. Her eating and drinking were affected and we had to digress all the way back to continuous gtube feeds at night, and because of the belly distension issues, it became difficult for Bella to keep up with her walking skills. 

The worst of it all, her Gtube site. The extreme distension caused relentless granulation tissue around Bella's Gtube site and the only way to fix that...burn it off with Nitrate. Basically hell for any parent that has to do that to their own child. Bella had this happen twice before while in hospital but the Gtube nurse treated her for me, and she was quick about it, very skilled. Now that was all on me. Multiple times I had to hold my daughter down, and burn her tissue off.

So hold burning Nitrate to her tissue. I'll give you a minute to swallow what that pain might feel like.  Hell.

Lyle and I were puddles of tears everytime, but if you don't treat granulation tissue it gets worse and it is also painful if left and could get to a point of needing surgical removal if left. 

After 4 treatments every 3 days it finally started to look better and now that Bella's stomach distension is gone, the site can heal better as well. 

The Nitrate sticks and supplies I need to treat Bella's granulation tissue. 

The Nitrate treatments were not only hard because I had to put Bella through pain but they also bring up memories that are hard to deal with. Many of you may know the term 'triggers.' It is difficult for someone to talk about their own triggers but if I'm strong enough to use these experiences to educate people around me, it will help me heal in the long run. 

I'll tell you this, it's going to be hard for me to talk with you, reminice with you...who ever you are to me when the conversations happen. If you are family to me, a friend, another medical parent, it's going to be hard. One simple word could throw me off, back into a hard shell that cuts you off. If you haven't been through what Bella and I have been through it's going to be hard. I understand that could possibly be every other person on this planet. That's why I'm telling you this now, I'm working on my healing and I know it's going to be difficult but someday I want to have that conversation that doesn't bring up triggers, doesn't close me off and won't break me down. I'm getting better, I can watch other children eat now. I remember when I had already spent days, weeks in isolation with Bella, never leaving her hospital room. Those days were enjoyable because I didn't have to see other children capable of feeding themselves when my daughter couldn't. It's hard to express what that pain feels like, when a trigger comes up in your life. But I think more people need to understand. It's about spreading compassion, right? Try and understand someone's past so you can help them heal, compassion. For me, try to imagine an intercom system set up in your home and place of work. Everytime a special bell rings you know it's followed by a voice telling you,"CODE BLUE." 

And after whitnessing your own child being intubated, other children being intubated, you physically see those images in your mind every time that bell rings and those words are spoken. I lived that for over a year of my life. I remember the nurses who cried outside my daughter's hospital room because they lived that too. Triggers feel like that intercome is set up in your home for the rest of your life. And I'm trying to dismantle it. 

Bella watching her dadda move the massive snowbank in our front yard. 

We finally got some snow around here!

Ok, so back to our January Calgary clinic visit. Everything went smooth, Bella received her IVIG and RSV infusions, we saw all of her doctors and specialists and since then have had a good time back home on our acreage. Bella's immunologist gave us wonderful news about her December 2015 Immune Panel. (The large monthly blood draw)  Bella's new immune system is right on track and even better than normal with some cell growth! Her immunologist couldn't be happier with how all her new cells are doing. Very good news. Now I know that is a very general statment but it is difficult to explain the details. However, in a post BMT, SCID case, that is a good problem to have. :)  

 I have created better questions for our next visit to Calgary when we review Bella's January 2016 Immune Panel with her Immunologist. Then I will have more detailed updates about just how good her new immune system is doing. But to give you an idea of how good, at our last appointment, Bells's Immunologist even utter the words, "Coming Off Isolation." !!

Ya! that's huge. So in February we will have an updated timeline for when Bella could perhaps start seeing her own cousins and playing with children her age! 

I of course still want to keep Bella protected untill she is allowed to start immunisations/vaccinations. And she of course will continue to not be allowed around anyone sick. We need to remember her immunizations don't even start until her Immune System has shown it is working completely on its own with no medications, etc. Until then I feel quite awkward when greeted by friends. I'm trying to think of ways around this kind of incident, instead of nodding silly or bowing all akward and saying something to someone that actually does sound like another language they don't understand. "I...Uh...Can't shake your hand, protecting my daughter, she has SCID,on protective isolation. Nope, uh, no hugging either, uh..., No germs please."

 Ya, awkward. So if you are a part of a converstaion where someone is like, "What's Kyla's deal? She doesn't shake hands or hug." ha ha  Please help me get the word out that no, I haven't made some random cultural greeting change, I'm more like a germafobe not wanting to risk bringing germs home to my daughter's clean environment. 

Back to Bella's improvements. She is doing wonderful at home. Besides the recent steroid set backs, she has gotten back on her feet again this week and is walking unassisted again. Although she loves using her rolling walker, more often she is now standing on her own, proclaming out loud that she is standing by saying, "Momma! Wow!" and then proceeding with a few steps. 

I feel, as exciting as it was to see her take her first steps on Decemeber 1st, I didn't give her the amount of credit she deserves for this accomplishment. Although she was 2 when she started walking, given what she went through, the amount of surgeries (9, five of which were abdominal surgeries) and the timing of those surgeries, chemo, BMT...they were ironically (given the unique circumstances that brought on each surgery and procedure) spaced apart so that just when Bella worked so damb hard to get to her next milestone (ie: sitting up, crawling, pulling herself up, walking) a surgery/procedure set her back.  Her Physio therapists and doctors have repeatedly told me they are astounded at how early she was able to walk given what she had gone through.  It is a testiment to her amazing strength at such a young age that she taught herself to stand up and walk by the age of two. Bravo baby girl, you deserve a large amount of applause for this accomplishment. 

These are a few of the notes written on the Postcards for Bella and her Bone Marrow donor (who we will be able to meet in 2017.) These particular notes are from students I used to teach and students from the school I used to teach at in Hodgeville, SK. Lets just say I could not get through all the beautiful and sincere notes without a whole box of kleenex. 

This makes me so so happy. Not only do I feel extrememly loved by these people and friends, but I know that my mission to inform more and more people about becoming a Bone Marrow Donor is growing as well. To see this type of compassion from such young students is so endearing. Thank You Hodgeville.

 Recently, since we have been home, I  finally had a chance to go through the 20 boxes of baby/child clothes we had piled in our basement. This picture and sticky note represents my HOPE, our HOPE, to in the future, have another baby. I beleive that if you write it down or talk like your hopes and dreams will happen, theres a better chance that they will. This box is full of newborn baby clothes in hopes that one day we can have another baby. 

We continue to wait on reports from Bella's Geneticist. We know that rolling the dice and risking having another baby subject to SCID, is not an option. To put another child through the pain Bella has endured is unimaginable, it won't happen. So this is the route we must take to prevent that tragedy again. We understand our hands are tied. Because of what Bella has, and has gone through...we can not just get pregnant when we want, plan to have another child when we want or build our family when we wish, we are now another couple that does not get that freedom, that choice, that beautiful luxury. 

Lyle and I are extremely thankful for the knowledge our specialists have this day and age to handle unique genetic cases like ours in hopes that pre-genetic testing through IVF could in fact support us in conceiving a healthy baby without SCID. For now, we rely fully on the genetic testing of Bella's "old" blood (her blood before her BMT), our blood and the expertise of our genetic specialists to find the genes which contributed to the cause of SCID in Bella so that we can see more clearly how Bella was born with SCID, which in part can help us conceive a second child without SCID . 

 For now, we hope and pray that the results from Bella's genetic testing come back clear and complete. 

If I haven't caught you up lately on this particular issue I appologize. Believe you me, genetics and all it encompasses is hard to wrap your head around. Trust, me, I've been trying to for the past 2 years. 

In a nut shell, Bella has a unique form of SCID, not one of the typical 20 kinds. Not a kind that they have seen before or shows up easily in their labs. On top of that, they speculate she has Cartilage Hair Hypolasia which would  and could explain her having SCID and Hirschprungs but the second gene that says she has CHH (To have CHH both parents have to be carriers and contribute one gene each) has not been found yet. Anyone that has CHH has 2 genes, easy to find genes. But in Bella's case they can't find the second one, making it harder to confirm she has CHH. And in part clouding the facts as to how she was born with SCID. 

Then, the reality of her having all 3 of these rare conditions combined, spontaneously from an extremely rare random gene mutation is also almost certainly so rare that it should never happen again, but too risky to risk not knowing the actual cause. 

I know, that's not exactly "in a nutshell." 

Let me try again...

If genetics does not find what they need to find from Bella's old blood testing (the results we are currently waiting on) then we are basically told we can not have any more children unless we are willing to risk them having SCID. 

Bella's genetic stats are breath taking. The combination of her rare conditions are so rare that her specialists are very confident no one else in this world has what she has. Which leads them to saying theres no way it could happen again. The rarety of the spontaneous gene mutation that caused Bella to have the combination SCID, CHH and Hirschprungs is such a genetically mind bogoling occurance that they actually can say, there should be no way this could happen again with a second pregnancy. But when you can't clearly find the genetic make up that caused Bella to have these rare conditions, you can't see it to prevent it either. 

In softer words, my heart is breaking. It breaks with every other family out there not able to have kids at all. I feel that pain, and then get slapped back to the realization I have one child already, I'm already blessed with one. So, shut up Kyla... right? Right. But thats not totally fair. I know a lot of medical mommas out there who understand. Is it any more fair to be angry and hurt by someone who has a child when you can't, and forget the torture, pain and extremely unique hardship they have had to go through to keep their only child alive? 

I want a chance to have a baby without being dropped into a medical hell of continuous torturous agony. I think we deserve to experiemce something lighter than that. 

In all reality I guess I'm talking about this a tad too soon but it'll come up any time genetics comes up. And of course Lyle and I long to have more kids, a second chance that can help heal our pain from seeing what no newborn should ever have to go through. And instead feel the healing love a second baby could bring to all three of us. 

I'm going to end this post here knowing that I'll have more to add in just one weeks time! We will be off to Bella's second Calgary appointment since being home in Sask. 

        More good news will come! 

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???