Summary 2013-2017 > Keep Up

This is my life now, it has purpose and I won't forget that.
This is his life, he carries me through but he needs carrying too.
This is HER life, she's moving mountains... keep up.

A side note before I get going with the 3 year summary. This is my therapy. Writing is my way of releasing some stress from myself. You may have heard bits and pieces of our story from the Facebook page, or snapchat updates, or my Facebook page... but I often try to make sure my blog writing is different. The writing in my blog post are of course way more detailed, and the the words/thoughts I just need to get out there. 
Thank you for listening, thank you for reading and thank you for caring about our story.

March 4th 2017 - Day 620 in Hospital

Since Isabella (#BellaBrave) was born (Dec. 6th 2013), I've counted the days spent in hospital. I never had my blog running until after she turned 1 year old. So that whole first year in hospital wasn't well documented, but with all the chaos that has become our medical life... in the time span of 3 years and 3 months thus far, we have had roughly a glorious 10 months in our home.

Jan. 25th 2017 we entered back into living the hospital life with Bella, once again.

It is quite difficult to keep up with our years in hospital and all the reasons why. #1 For people who try to fathom it for the first time it seems just flat out "Not Real." How can that many things go wrong, time after time with no break?! #2 The reasons Bella needed highly professional care, specialists all over the world to slowly discover 6 rare diagnosis, like perfectly timed blows in a boxing match.... "Round 1: left hook, Round 2: right hook, Round 3: Uppercut, Round 4: Jab Round 5: Cross Punch, Round 6: Bolo Punch..." I'm just waiting for the KO like its expected now. And #3 the countless times we have been told we are going home and don't, they think she's fixed and she's not, 'catching a break' is proven to be a flat out myth to me now.

Here's a Medical Summary of Bella's Hospital Life from Birth:

Pregnancy: A wonderful, easy pregnancy where I never got sick and we knew nothing of what was yet to come.
Born: December 6th 2013 in Swift Current, SK hospital
3 days old: Air ambulance to Saskatoon hospital for 1st bowel surgery dealing with Hirschprungs Disease affecting her colon/Got her first ostomy pouch.
Jan 28 2014: 2nd major bowel surgery taking down scar tissue thinking it was the blockage.
April 9th 2014: 3rd major bowel surgery to take more of her colon thinking more of it was affected by Hirschprungs.
April 10th 2014 (Bella is 4m old): First Septic Shock episode nearly taking her life. Most likely due to major bowel surgery with no immune system (unknown SCID at this time)
June 2014: transferred to Alberta Children's Hospital in Calgary
July 2014: 4th Major Bowel Surgery that took her whole colon but also took away her ostomy so she went back to pooping normally.
Bella still had oral aversion at this time due to the ng tube still placed down her nose and throat to feed her formula.
September 8th 2014: a brief and very stressful  few weeks at home still unaware Bella had no immune system.
October 2014: Admitted back to RUH in Saskatoon for lung infection, needing Oxygen.
November 2014: transferred back to ACH in Calgary because Saskatoon could not clear her infection.

November 20th 2014: Bellas biopsy of an enlarged lymph node from her armpit showing she had no immune system, absolutely no Tcell or Bcells and thus diagnosed with a rare unknown form of SCID.
- This happened a week before Bella would have received her 1y live vaccine that would have killed her because she had no immune system to build antibodies from the vaccines. Hence why I advocate for Newborn SCID screening to happen in all provinces. Genetics began to make connections between how Bella has CHH, HD and SCID.

> We remained in ACH Calgary, AB and prepared for her BMT to cure her of SCID < Strict ISOlation protocol began for Bella.

March 20th 2015: After about 6 days of chemo an infection in Bella's cvc sent her in to Sepsis and they removed her cvc 2 days before her BMT was due.
March 25th 2015: Bella's BMT
May 2015: We moved from strict Isolation in hospital to strict isolation at RMH across the street.
- we would walk across the street every other day to have her BMT team examine her at ACH
- Bella is 1 1/2 years old at this time and just learning to eat solid foods and went from ng - Gtube use.
October 2015: It is discovered that Bella may have contracted a severe MAC bug prior to BMT that survived chemo and BMT, so now she is treated with a year long dose of 3 antibiotics and only allowed Distilled Water.
November 2015: Bellas has her first Hemalytic Anemia Attack (a rare complication post BMT) Her case required a med called Retuximab to fix the Anemia but it required wiping out all her Bcells. This turned out to be a need of a year long dose of steroids. Steroids kept her Immune Suppressed for an entire year. 

December 1st 2015: At 2 years old Bella took her first steps and learned to walk.
December 13th 2015: We went home. Monitored weekly with bloodwork by Swift Current doctors and travelling to Calgary monthly to see her doctors there.
April 2016: Admitted in ACH Calgary for second Hemalytic Attack, receiving more blood transfusions and longer need of steroids.
June 8th 2016: We went back home.

- Many motility bowel distension issues began and got worse. Bella is now eating solids and more stress is on her bowel to move food through. Bowel issues still unknown. Much blame was put on the use of steroids and antibiotics and diet. Many restrictions and medications were laid out and trialed.
-We still make monthly trips to Calgary.
December 6th 2016: Bella's first birthday celebrated at home, she turned 3 years old.

January 25th 2017: Bella's rushed from Swift Current hospital to ACH in Calgary for emergency Bowel surgery.
January 26th 2017: Bella's 5th major bowel surgery. Her 13th surgery since birth. (She's had other surgeries for cvc lines and biopsies, etc) This was also her first surgery with a working immune system and her not being immune suppressed from steroids.
February 21st 2017: Bella's team of primary specialists (11 people) meet with Lyle and I to discuss the rarity of their finds from Bella's recent bowel surgery and what the plan is moving forward.
March 1st 2017: We continue to remain admitted in ACH waiting for Bella's bowels to begin working, they haven't yet, so we continue to drain built up fluid from her stomach.

> It has been 36 days that Bella has NOT been allowed to eat and it remains that way until her bowels start to work. And even then, she'll only be allowed small sips of clear fluids. <

I can't watch anyone's child eat. I can't walk through the cafeteria any more at the chance I may catch a glimpse of the ability some other child has to pick up what ever they desire and see the simple choice of nutrients be chewed with ease and swallowed with no effort and glide down their throat to be processed by their working bowels which have never been touched by the hands of a surgeon, have never been been cut wide open on an operating table, cut apart and put back in. I can't describe the pain that wells up inside me right now when I see how easy it is for other children to be nourished without torture and pain. I just can't.

I sit here and day after day and I train (with Lyle and our Home PN nurse) to run the TPN through IV, through my child's veins to keep her alive and I wonder what it would be like to sit down for supper as a family again.

I can no longer eat in front of her any longer. Once again (Just like all of 2014) She can't eat, I can't eat.

How Did This Come To Be?

I can tell you first off, what makes it harder to believe that all of this could happen to one little girl before she even turns 3 years old, is that it has not been at the hand of humans. This is strictly a hand full of bad cards that was dealt from birth. I know this because her Amazing team of specialists from ACH have worked tirelessly, night and day to understand the whys and hows with me.

So What Do We Know?

We know from highly specialised Genetic Testing Bella was born with mutated genes that caused the damage: CHH, SCID & HD.
We know that the MAC bug was a bug that normal immune systems can get rid of but Bella caught this from the environment somehow before she had a working immune system.
We know the Hemalytic Anemia can be a complication post BMT, they have seen this happen to other patients. Its rare but it happens and its fixed.

We DON'T KNOW how or why this new bowel blockage formed, or the time it took to form. From here we make guesses with the information we have. And in a later section I'll explain how the surgeons explained why they believe this blockage piece took time to form and why it was appearing as "normal bowel" in the previous 4 bowel surgeries.

Leading up to the 5th Bowel Surgery on Jan. 26th 2017
Bella began struggling with bloat distension and motility issues since June 2016. From there they worsened. So many factors were always at play when asking, "Why is this happening to Bella?" We began to blame a lot of her bowel issues on her history of HD (Hirschprungs Disease) but it just never made sense that with antibiotics and no colon that she was severely severely constipated and needing more and more laxatives to poop. We also blamed steroids for a while as well.  Her doctors tried many meds thinking this was a chronic motility issue that would eventually be sorted out with the right med. But in actuality a 5cm section of her bowel was narrowing and becoming what would eventually be a full on blockage that they cut out on Jan. 26th 2017.

The Details Around The Surgery Itself
The day the Ambulance delivered Bella to ACH her surgeon wanted her in the OR stat! Thank God they recognised her worsening symptoms before she went down hill fast and possibly went through septic shock due to a perforated bowel.  Instead they had Lyle and I sign the papers for a "Emergency Exploratory Bowel Surgery" and we walked our baby girl to the OR for the 13th time. But hey! First surgery with a working Immune System and not on Immune Suppressant drugs! Bright side to everything right?! (If only you could see my face right now as I type this...)

When you go through this much medical trauma in this amount of time, as parents, you do become desensitised. Its why I may look at you like you have 3 heads when you tell me your poor child had to stay in the hospital for one night while they had the mild flu, or if you complain to me about. anything. at. all.

So we kept positive remembering things like the fact Bella has never had issues with anaesthetics, she's not immune suppressed, we know her surgeon so so well and he knows Bella, we are in a world renowned children's hospital, and Bella is one tough cookie. But entering hour 3 into surgery we get a phone cal from the surgeon's clerk...

I don't care what sort of positive things you tell yourself to distract yourself during the wait of your child's surgery... it is the most gut wrenching wait you'll ever have to go through. And then to get a phone call in the middle of the surgery, well it just drops your heart into your stomach and your stomach is a blender, shredding your heart until you hear the words, "She's doing great."

So she was doing great but since this was exploratory surgery and they didn't know what they were about to discover or what they even knew they needed to discover meant that they needed to tell Lyle and I the surgery would be another few hours.
Our surgeon came to speak with us promptly after the surgery to best explain what he (and the other gallery of surgeons in the room) also saw. And I quote, "It was WEIRD and ODD." What the fuck (sorry mom) else would we expect right? We have a huge family of prayer groups diligently praying for Bella, we have been seeking and searching for concrete answers for SO SO long and still we receive the worst of all... "We have never seen this before and no one else in the world has either."

We were left with this:
Bella's team of surgeons went through every piece of her small bowel, from her stomach, inch by inch all the way to the end which would be her bum. They cut scar tissue away but did not see any bands "choking" the intestine. That would be an 'easy' answer and why would we ever deserve that, right?!  As our surgeon meticulously searched along her bowel for answers he became worried that nothing would be found and then IT appeared. Near the end (bottom third) of her small bowel the diameter of her bowel went from as wide as the bottom of your coffee mug to the width of a pencil. The Blockage was evident and then cut out. It was roughly 5cm in length.

This narrowing blockage formed in her small bowel. Hirschprungs Disease is a Large Bowel (colon) disease...so what was this? How did it form? It explains a bit of why it was not seen in the 4 previous surgeries... you don't look anywhere else for HD, its only a colon disease. So what was this narrowing in Bella's small bowel?

The surgeon told us the extent of the trauma done to her bowels from the distension. 4 Litres (an entire milk jug) was drained from her tiny torso. The bowels were trying so hard for so long to push what ever food and drink was thrown at them, through an entire bottom third of her bowel in order for her to poop. Her bowel needed rest and so the ileostomy was built. This is where they bring the upper end of her small bowel to the surface of her abdomen skin and cover it with a pouch. This allows her upper small bowel much needed rest. Her bottom third and rectum remain inside her body for rest, healing and not being used.

6 hours later we met our baby girl, intubated in the PICU.

Even though she was on the 'Loopy Meds' she looked at me like, "Get this effing tube out of my effing throat NOW mom!"

As I looked over her body my eyes welled up as I realized what her tiny bodied endured. The cuts through the scar tissue through her abdomen, the deep purple bruises on her arms from the Art line and IV line that pierced her skin, the new ostomy pouch attached to her, exposed a small bowel stoma on her right side, sitting so close to her trusty Gtube button on her left. Looking and realising I can't see her skin, I just can't see any of her precious, porcelain skin. She was covered in the patches, pouches, buttons, tubes and lines that she required to survive this whole ordeal.

Finally I came across her soft exposed thigh, to gently rub, in hopes my touch there comforted her in some way while I kissed the tiny patch of skin on her forehead.

The Team Meeting 
Feb. 21st, 2017
This is the information we received with ALL Bella's specialists present (11 people). This team was made up of Bella's primary doctors: Immunology, Hematology, BMT, GI, CHIRP, Surgery and the Pathologist. Bella's team in total currently sits at 43 people. So the 11 top specialists on her case attended this meeting. This also included the surgeon who conducted her 4th bowel surgery. Basically, we had everyone there that we needed to get the clearest picture of what is actually going on and what we need to know.

We didn't think Bella's conditions and issues could get any more rare, and now we were about to hear the rarest of them ALL...

80% of HD (Hirschpurngs Disease - dead cells of the colon) stops at the junction of the colon. 5-10% of HD kids it goes up from there a little more. Less than 5% of HD kids have it affect their entire colon (Large bowel)... this was Bella by the time of her 4th bowel surgery. That was her full colectomy surgery, colon gone. And now to the Odd, Weird, Rarest part no one has seen before and some doctors refuse to believe exists: Skipped Lesion Hypoganglionosis.  So it may be possible that abnormal cells ( like a form of secondary HD) skip'd up into her small bowel. Unheard of, never seen before, some choose not to believe it exists. Thankfully none of those people are Bella's doctors and everyone in ACH wants to know exactly what THIS is.

The team is not sure how or when this section of blockage formed. Once the Pathologist could tell us about the slides and cells she meticulously inspected, she found that the cells from the biopsy were abnormal. So not only did they look funny, (not like normal cells) they were also sporadic and not in their 'right spots' for normal bowel function to occur. So how did these eff'd up cells get to this spot in Bells'a small bowel, why did they form here and how did they form here?  We don't know that yet.

We then discussed how this section was not seen in her previous bowel surgeries.  First of all doctors don't look for HD in the small bowel, its not supposed to be there. Then comes the weird and odd part of this section of rare... Bella seems to have a longer Transition Zone (from bad cells to good cells in the colon) than typical HD patients have.  Roughly 10 years ago it was noted in HD documents that a typical transition zone was about 3cm long. Then more recently a New Jersey HD specialist changed that to 10cm long. So when surgeons are looking at the bad HD cells and deciding where to cut the bowel so that all the bad cells are taken out, they would go roughly 10cm up from the bad cell section.  Bella's was longer than that. So she was never Typical HD even in the first place and then to have a longer than normal transition zone complicated things further. So through all her bowel surgeries the doctors never wanted to take too much of her bowel and then also followed the most typical guidelines for cutting out HD affected colon.

So they understand now that the bowel 'appeared' normal in the previous surgeries and they also technically didn't need to look there (her small bowel) after her first surgery when she was diagnosed with HD.

Between her 4th and 5th bowel surgery there was a 2 year gap. This is where we start guessing as to how and why the recent blockage section formed. We are still asking at this point "Are all her cells in her bowel 'abnormal' or just this last section they took out? In order to find that out her surgeons have to do a future surgery where they MAP Bella's entire bowel from her stomach to the bottom of her small bowel. This would be an extensive surgery where they biopsy a chunk of her bowel every 5-10cm. So we aren't there yet, that will be down the road. For now, we guess, and try to get her bowels to work.

Bella's surgery was so extensive on Jan. 26th that she couldn't walk for 9 days after.

- The Valentines card we wrote for all of the other children as inpatient on Unit One for Valentines Day. - 

Guesses on how the recent blockage formed:
Bella's whole team believe a lot masked what struggles her bowels were really under-going during that 2 year gap. They recognised that the majority of those 2 years Bella was on IV fluids through transplant, NPO with oral aversion so her feeds were a very broken down formula or TPN IV, so no solids. Bella didn't really start eating solids until later in the 2 year gap and when that was going on she was also on many many medications including lots if antibiotics. So for a while her gut was under very little pressure and everything was just liquid form flushing through.
     Then she began eating solids and taking steroids and becoming bloated and distended and from there the pressure on her gut to process increased. Possibly, after this something could of triggered her bowels to reach their breaking point and they shut down thus showing us a full on bowel blockage that was quite evident.

So perhaps those abnormal cells were there from birth and as the pressure on her bowels to process increased, the narrowing began on one end, and the distension on the other. Her doctors still do not know for sure, but this is there best guess at this point. We will not know FOR SURE what is going on until they get that chance to map and biopsy her entire remaining bowel.

So Now What?
Lyle and I left that meeting quite deflated and discouraged. We never received answers and no 'for sures' and there was even discussion around the Bowel Failure Team being involved and what scenarios led to the need of a full bowel transplant for Bella. (Worst Case Scenario) And at the date of  this meeting it had been nearly 4 weeks since surgery and also still NO movement from her bowels, no bowel function at all. This meant stressing procedures that needed to be done on our fragile 3 year old daughter. The older she is now for these most traumatic situations, is showing the harmful effects of stress on her mind as well. She is fully awake and aware when they need to dilate her stoma, or when we need to drain her entire stomach contents from her Gtube button because her bowels are not working. It has been somewhat of a horror movie 5 inches from her own eyes.

In the last month my daughter has been the most aware for the harshest procedures. She has remembered for a long time and they can't tell me anymore, "Don't worry mom, she's a baby, she won't remember."  No, now I have to stare in to her tear-soaked eyes with mine and pray she forgives me for holding her down as she screams, "Mommy no!"

We were also left with what we have usually received from Bella's doctors...HOPE. There is hope that her bowels wake up and start working just like they had before, she comes off TPN iv and is allowed to eat again. There is hope that the rest of her bowel functions beautifully with the support of an ileostomy pouch and that in the future she could hydrate herself enough for us to remove the CVC line in her chest. Speaking of which, thank GOD for the life line known as Mr. Rigatoni (her Broviak cvc). We were just looking forward to taking him out because the Hemalytic Anemia was gone and we only needed to see her BMT/Immune/Hematology team once every 3 months! We were almost at a 3month break point... but thank God we still had her cvc line and didn't take him out early. Mr.Rigatoni has saved Bella a ton of pokes.

Daily
Daily we wait for her bowels to wake up. Daily Bella is connected to IV lines that feed her veins all the nutrients (TPN for 22 hours) her body needs when she can not eat. Daily we try to keep our heads above water as we strive to keep her comfortable, thankful, aware and learning. The doctors stream through her door like a revolving sushi train. As soon as I swallow one's ideas, orders and concerns, the next one comes by.

For a while I could see the stress of all of this rearing its ugly head in my daughter's mind. She felt her entire world was out of control and not one person was going to get away with one thing, not even a "hello."  It broke my heart to tell people that saying, "Hi" to Bella stressed her out, so shut your mouth and walk by without speaking, thank you. This was my Brave girl who loved 20 doctors in her room and hated being home alone with mom. Now, I had our nurse telling me not to worry, this is the way a 3 year old should react to hospital.  Which part of me believed but part of me also knew this wasn't "3 year old behaviour" this was my baby girl not herself and stressed out.  I mean no one could even compliment her.  If she did not initiate the convo, then no, you are not allowed to engage. She needed complete control of her world as she healed and this is how she started to gain it.

Things have brightened in her world this week and I'm getting glimpses of my happy girl coming back. But I mean she started with the tiring job of dealing with the distension that she put up with for so long, with a smile on her face! Then she went through a extensive surgery at an age where she is very much aware of her surroundings. And after that, being told she can not eat, no snack, no food, no drink.

Say you have a 3 year old right now... could you call them from the other room right now and tell them,
  "No hunny, I'm not giving you supper tonight. In fact, Mommy is not allowed to let you have a drink before bed and I won't be giving you breakfast in the morning. Actually, hunny... Mommy won't be feeding you for another month."
The pain in my chest still lingers since the first week after surgery where Bella sobbed because I had to say no to a snack for her. It lingers because now she has given up, she's "put up," she's fine with it now. And the chest pain continues to linger because the PTSD from her entire first 8 months of life when the NG tube down her nose and throat caused an oral aversion and I wasn't allowed to feed my baby girl a bottle. And that aversion continued to the point in time when I WAS allowed to feed her a bottle and she wouldn't accept it because she had given up, she had put up and she was fine with it...over it. So the fear from those months when she was forced to "put up with' it all for so long that she just gave up on trying. God, I pray for my brave girl's chance at eating again. Please.

My Mental Health
This paragraph may not be long because really my only question is: "When you are receiving support from your Mental Health nurse for PTSD from a year of exactly what your worst nightmare is, that you have already lived through (Bowel Hell)... and your PTSD nightmare becomes real life AGAIN (Bowel Hell Take 2)... Do you spontaneously combust?

I feel like I have strived ruthlessly to prevent prevent prevent; pain, mistakes, hardships on my daughter. Why has it all just blown up in my face. I begged my doctors to figure things out quickly and they tried tirelessly to never see me beg them again because they are amazing. Yet issue after issue arose for Bella and I still feel like I'm tied up, beaten and gagged while my daughter suffers. I need this suffering to stop for her. I need her quality of life to never have the word 'pain' enter it ever again. If only..if only.

I miss my dog so effing much it hurts.
I miss my 2 cats a lot. I miss the way they bring my heart rate down.
I miss the way that Sajak (my male kitty) thinks he's human.
I just want to hold my dog the more I think about my cats.
Dammit all I miss them!!!!
I hate this!

If One. More. Person. asks me, "How are you?"  I'll blow up.
STOP ASKING THIS TO PARENTS IN HOSPITAL WITH THEIR CHILDREN!
Gaaaaawwwwww

How are you? Honestly... come one people!? Really?
  "Oh, I'm fucking fabulous! Holding my double shot latte, with my new outfit, driving my car to my job, in the town I live in, which is also the same place I live and see my dog and cats daily, while my healthy child goes to daycare and my non-stressed husband picks her up after his daily job which allows me "self care" time to work out at my fab gym before showering and going for wine with all my girlfriends at the local pub downtown."  Just. effing. fabulous.

I get that this is just the common phrase that rolls off your tongue and that it takes a little more brain function to try and think of ANYTHING ELSE to ask...but please try. For my mental health sake, please try.

How Is Bella Lately?
Today is March 4th, so even though it has been exactly one month and 5 days since she has been allowed to eat she is 'putting up.'  Bella's GI docs have allowed her a max of 200ml per day of clear fluids, because her bowels are supposed to be allowed to fully rest. This 200ml of clear fluids is for comfort for her in the safest way possible. Its less than a juice box a day that we have to drain from her stomach 2-3 times in a day anyway, while we wait for the day that her stomach is empty, which means her bowels have started to move stomach contents through!  While we wait Bella has been doing well with her options of juice, popsicles or suckers. She has not puked at all and has been relatively comfortable other than the soreness from irritation at her Gtube button site. The strain from the stomach drain tube has irritated the button site and has made it quite painful for Bella even when we touch it.

Slowly as we coach her in to regaining control of her current environment she's becoming a bit more friendly little by little. Slowly I see her "happy girl self" coming back and lighting up every hallway she walks down in that Children's Hospital. She is a girl of routine. Here she feels control and comfort in knowing what will come next. It has even got to the point of a surprise blessing for Lyle and I. Shortly after her surgery, roughly 2 weeks after, Bella told us flat out to leave her room. This was her bedroom now (hospital room) and she demanded her quiet, alone time. Even though I was a bit taken back by this request...I could see her craving for peace very clearly. So a couple times in the day it started with, "Mommy, go sit down." Quite a harsh demand but I respected it. I was standing at her crib-side too long and she needed a break from 'nurse-mom.'  But then it escalated to, "Mommy, Daddy leave."  And Lyle and I sort of stood there in shock. So we contemplated leaving her hospital room to actually sleep at the Ronald McDonald House, free from lights and loud alarms over night. Bella was telling us to go!

I double checked if I was hearing her right and asked, "Hunny, should I leave?" and Bella would respond, "Yes mommy, mommy...coat and boots. Put on your coat and boots and go." And as I picked my jaw up off the floor I turned down her lights, plugged in her toe probe monitor for the nurse, gave her a kiss goodnight and walked towards the door. As I closed the door I'd say, "Ok hunny, Mommies going to leave  now (as I triple check that she was still ok with this) is that ok?"
And she responds, "Yes, night mommy." These little bits of her showing how brave and grown up she is, melts me.

What if her Bowels don't wake up?
We have been given a time period from her GI specialist for her bowels to wake up and work. It was confusing because after surgery they said hopefully they would begin working in about 2 weeks. Then once they realised what they were actually dealing with they switched that time line to 2 months. So given what they know in regards to Bella's case her doctors are telling us they will not start to worry about her bowels not working until April. Given the trauma her bowels went through right before and during surgery, her doctors don't expect them to start waking up and working before April. So if they do before then, great, bonus.
If April comes along, then her bowel's rest period is over and they will try putting them to work. This means throwing every motility med at them until they do work. Bowel transplant will only be considered after every possible motility med has been tried, even the ones they need special approval for.  So currently today we are still holding on to hope that Bella's Bowels will wake up on their own and begin to work on their own with-out any medication support.... its possible.

Currently Lyle and I are also back in school taking Home TPN Training. This in a nut shell is us being taught how to administer nutrients through IV for Bella at home. It may be a while before Bella can eat again, so she needs TPN through her cvc line to stay alive, to get all the nutrients she needs to gain weight.  So yeah, we have gone from managing just dressing changes of her cvc line site, Gtube (stomach button) use, to now ileostomy maintenance and full on IV hook ups, lines, pumps, beeping pumps, flushing her line, checking blood return, running fluids through her IV, etc.... at HOME. We won't be done training for another week and even then, we don't take Bella home until we feel comfortable and confident enough to administer TPN IV at home.

    Me as Nurse-Mom just hit a whole new level. 

You may have thought I had enough to carry around for Bella due  to her Gtube and cvc line and regular toddler needs... now I have a full on hospital room that I'll need to adjust to hauling around. We are getting the IV Home TPN training in hopes that we can bring Bella home once our training is done and care for her in the comfort of our own home,  & wait for her bowels to wake up there. Thats a blessing.  $15 000 is what it costs per child, per month for a parent to be able to administer TPN through IV at home. Thank GOD we live in Canada and it costs nothing for us to do this for our daughter. Thank GOD. So I am going to bite my tongue a bit harder and remember not to complain when I relearn how to function out of hospital, and competently tend to my daughter's medical needs at home. 

Thank You Is Not Enough

Without question our friends, family, hometowns, friends of friends, extended family have support us in spectacular ways and Lyle and I can not thank you all enough. To stick by our sides, for our daughter through this unusually long endeavour has meant the world to us. We feel your love when we are alone in our RMH room, we feel your support when Bella is in her hospital room, we know you have our backs all the way through, thank you from every inch of our hearts. To all the friends that I can't always reply back to right away, please know I will get there. Days can become overwhelming and I'm trying so hard to keep up with the Thank Yous that even that can become overwhelming at times. So please know, when I have time, when I finally get home with Bella... we want to thank you so so much.

Thank you to everyone supporting me with my book sales. I hope I can physically get to my shipment soon and be able to set up my own book signing event for you all to pick it up from me in person.

Thank you to my thoughtful, selfless, amazing co-workers, the Chinook School division, Central School, Hodgeville School, Ecole Centennial  and All Saints Catholic school for all your loving support.

Thank You From Inside Out Creative Studio for the keychain & magnet fundraiser for Bella.
Thank You to my loving friend Becky Warnke for the GoFundMe page and the BellaBrave online auction fundraiser.
Thank you to our community for the auction support and everyone for the support through the GoFundMe page.
Thank you to my friends Carissa, Stephanie, Alana, Jess, Alanna, Melissa, Jenna and Brooke for all the hard work you have done to bring a smile to Bella's face.
Thank you to my Medical Mom friends in Calgary who have made breaks in the day possible for me. I cherish you SO much.
Thank you to my mom and dad and Lyle's mom and dad who have been the foundation of the abundance of family support in our lives for Bella.

A Thousand Thank Yous to all of our friends near and far. Please keep the prayers for our Brave Girl going, she's not done moving mountains yet. Keep Up!

Just a Quick Update - Feb 24, 2017

Hi All,

We've been pretty busy the last few weeks so we apologize for the lack of updates!

As many of you may know, on January 25 we were transported via ambulance from Swift Current. Isabella went into surgery on the 26th to address an intestinal blockage within her bowels. She did amazing through the six hour surgery, and has healed very well. 

Unfortunately since then Bella’s bowels have made no progress. Although she’s comfortable, in good spirits, and has no abdominal distention, her bowels are still in hibernation and have no output to her (installed during surgery) ostomy. Over the next two weeks Kyla and I will start training to administer Bella’s IV Total Parental Nutrition ourselves. This takes about 2 hours every morning, so I will be required in Calgary for that full duration. Once training is complete in two weeks, the hope is that we can do everything they’re doing here at home in Swift Current, while we remain hopeful for her bowels to start moving again. TPN is not a permanent solution. It requires consistent monitoring of blood levels, and over year(s) it can become quite damaging to specific organs. In that situation, a total bowel transplant is the only last step…

On the bright side, we continue to receive more information from Bella’s bloodwork that her bone marrow transplant has been extremely successful.

Kyla will write a detailed post on here next week. For now, please visit Bella's Facebook page : Isabella's Mustard Seed for quick, daily updates. 

- Lyle

Unsteady with a Million Reasons but The Greatest

Oh how those three songs (in my blog post title) speak to me lately. They are completely, in that order... my life. Give them a listen, they are all quite easy on the ears while they ignite the soul. (Unsteady by X Ambassadors, Million Reasons by Lady Gaga, & The Greatest by Sia)

Head stuck in a cycle, I look off and I stare
It's like that I've stopped breathing, but completely aware
'Cause you're giving me a million reasons
Give me a million reasons
Givin' me a million reasons
About a million reasons

And if you say something that you might even mean
It's hard to even fathom which parts I should believe
'Cause you're giving me a million reasons
Give me a million reasons
Givin' me a million reasons
About a million reasons

I bow down to pray
I try to make the worst seem better
Lord, show me the way
To cut through all his worn out leather
I've got a hundred million reasons to walk away
But baby, I just need one good one to stay

So on to the Ups and Downs of our life... we have been riding a down wave since Christmas, and in all reality, since last May. Bella's bowel issues have not improved, they have continued to worsen. And thus brings up another issue I have been wrestling personally...battling the inevitable "What Other People Think" problem. Welp, slowly I've started to unravel my middle finger.
 Let me explain:

When an outsider, and by outsider I mean any family member or friend who is not me or Bella, (that's a lot of people) has NOT been through what we have been through (again, practically the entire world) begins to feel tired by seeing what I post, roll their eyes at the ongoing story or merely not bother to care (which is fine in your own right)... I would get sad, feel self doubt and retreat into my cocoon of, "Ya Kyla, Shut the eff up, others have it worse." And I would begin to feel ashamed and just alone. No more! No, I'm not doing this to myself anymore just because you happen to go on Facebook one day out of the week and catch up on my many posts I shared lately. Those posts coming from a mom who just wants to give other moms hope by showing them our little warriors can overcome obstacles. No! I'm not apologising for this and I will no longer feel bad for fighting the fight for my daughter and her health. So simply, here's my middle finger to all of those who could care less because our sad story continues. Carry on in your own right, but I will continue to share so that I continue to help that one mom who may be struggling in the same way, or that one dad who struggles to find ways to help his wife who exhausts herself over the care of her sick child OR the chance at receiving help for Bella when her own specialists have run out of ideas.

Okay, okay, you're probably thinking, whoa, whoa whoa Kyla...chill. Ya, I've taken that approach before, I've apologised for posting a lot, or I have been ridiculed for tiring people with my lengthy posts. And all I'm doing here today in this post its telling those people... "too effing bad." Unfollow me if my story tires you, but I will continue pouring my heart out, weather you rolls your eyes are our journey or not. And for those of you who 'get it,' thank you. Yes, there are those out there that quit caring about our ironically, long and rare journeys. So, we don't need them, we have each other to hold on to. Sadly us "rare condition" families often live miles apart, yet share the same pain and the internet is our only connection. So for the rest of yaz, just get out of our way if you can't help or clearly see our purpose to strive to help prevent struggle for others from our own experiences.

Here's the other side, that I think about a lot, and what gives me drive. Writing is therapeutic for me. It helps me deal with and process the hell of seeing my child suffer. Also, YOU have not been in my shoes. And sadly I'm realising no one will ever understand until they are, or quite frankly, care. How sad it that. But I get it. How the eff can things go wrong for someone for so long? right!? I know!!! You don't think I know that?! You think I want to write one more flip'n blog post about how my daughter still suffers?! But she is, and I will write until my fingers bleed if it means that someone reads this, notices how I am struggling and provides me a solution I have not yet tried, and thus bring Bella relief.

I saw a mom share on Global Genes today about her son's rare disease. She simply wrote,  "I won't stop until I find help for my son" And so she was asking people to share and share and share her story in hopes to find a cure or even support for her sons rare disease that causes his body to reject all food.  And so I'll continue on passed your snide comments about how much I write, or how many photos I post and push, until Bella has sustained relief. I wish you all could understand what it would mean to me to never have to write a post on here again. Would you get it? Get that it would mean Bella is fully healed, get that I would never have to ask if anyone else had ideas on how to relieve her pain, get that I would never have to post her 15th surgery or that there are no longer risks because her immune system doesn't work properly.

And so there are a Million Reasons I continue on this way and Thank You to the close friends and family who understand. Thank you to the friends who hug me and hold me and tell me, "My God Kyla, I'm so sorry its been three years of this struggle." Thank You for holding me up when I too, thought this would be over by now.

Okay, that's off my chest, on to updates.

Jan. 14th 2017
Day +660 Post BMT
On day 331 at Home. 

Uh-oh, running out of breath, but I
Oh, I, I got stamina
Uh-oh, running now, I close my eyes
Well, oh, I got stamina
And uh-oh, I see another mountain to climb
But I, I, I got stamina
Uh-oh, I need another lover, be mine
Cause I, I, I got stamina

Don't give up, I won't give up
Don't give up, no no no
Don't give up, I won't give up
Don't give up, no no no

I pause for a moment after Bella tells me, "Mommy, my tummy hurts." And I look at her right in the eyes (with tears swelling up in mine) and I say,
    "Hunny, don't give up, I won't give up, don't give up."
And she replies,
    "Ok Mommy."

I go on to find ways to explain to her why her tummy might be hurting or why she has to fast an hour before a medicine and and hour after the medicine, while she looks at me with tears in her eyes because she just wants one little snack,
     "Juuuust a little bit of snack mommy?"
 And then I have to look at my brave girl, my baby girl who fought so hard just to learn how to eat by the age of 18 months and then fought another 6 more months so that by the time she was two, she could drink.
 And I look at her in eyes after she has fought so hard just to learn how to eat and drink without tubes, and tell her,
    "No, I'm sorry hunny you can't eat right now, you can't drink right now."
 And now this IS a pain I would wish on my worst enemy because its breaking me. I can't do this anymore. I'm begging God day after day to stop this torture, please. My God she worked so hard to just be able to eat and drink and now, because her doctors don't know what will help her yet, I have to give her a medicine that requires her to fast.
 I just don't know how else to describe this other than, pain.

And so then the ups and downs continue with Bella's bowels and the trial and error that still comes 3 years later, 5 bowel surgeries later, having been born with Hirschprungs and enduring a full colectomy later, and 3 different GI specialists later... we still struggle.

Uh-oh, running out of breath, but I
Oh, I, I got stamina

The distension has worsened to the point that most days I can not buckle Bella in her car seat. I have to take a tape measure and record her abdominal girth every morning... doctors orders for monitoring how the new med is helping. She'll cry because she falls more often now because she can't get her balance back.  Quite often she'll ask me to put the couch pillow on the floor with a blanket so she can lay her self down, tummy down, for relief. She'll lay there silently, letting out sighs. This is not what a three year old, who has already fought so hard to live, should have to be going though. Its just not fair. I've lost count of how many moments her and I sit in tears, at home, alone, because she is hurting and I can't fix her.

It's like I am watching a bully pick on my daughter while my hands are tied and my mouth is taped shut.

I can tell you I thank God daily, I pray daily, that I have a hard working husband to support such a life that involves me having to give up my career to manage my three year old's pain, daily. I pray the day will come when Bella can feel comfort all day long. When I can make plans to go for dinner with my husband and not worry that Bella can't be babysat because she'll vomit, or that no one knows how to vent her Gtube to prevent a vomit, or have to wonder how I would teach someone how to vent her G-tube while she vomits. Could you ever imagine saying what I just typed?

I bow down to pray
I try to make the worst seem better

If you follow my Facebook page "Isabella's Mustard Seed" you'll notice that's where I post a lot of the "ups" in our life. I can see how it may get quite confusing when I save all the "downs" for the blog. To be honest I do not have the energy to explain the "downs" on Facebook and with the way people respond to posts on facebook, I'm not prepared to deal with all the questions that may arise from a negative post on there either. So I save a lot of my venting for my blog here. You may have noticed me posting quite a bit of charts and questions on there though. I'm so thankful for the medical parent community on facebook and how when questions are posted, the responses can come quick. That has helped me so much. Thank you to my medical parent community who have been able to put many of my worries at ease when it come to helping Bella.

Hold
Hold on
Hold on to me
'Cause I’m a little unsteady
A little unsteady

Switching Directions; Genetics:
When I raise my face and hands in the air and ask, "WHY?"

The answer I have received, what I have perceived:

I, her mom, gave the severely damaging mutation to her. 

So let me explain, because often genetics can go over peoples heads. But in a nutshell, I try to tell myself the rare mind-blowing, no specialists can figure it out, never seen before, never documented before, super rare gene mutation.... is not my fault, but it is. 

Recently a lot more has become clear since our IVF doctors have needed to give their Genetics Lab all our genetic information to ensure our next child is not born with a deadly disease. The lab required clarity and then confirmation from my end before going a head with more testing. And so what I guess I am saying is that when something is repeatedly told to you to confirm it is correct, You can't brush off the pain when its said over and over, out loud, multiple times, for clarity. 

"Kyla, Your 'Likely Pathogenic Varient Mutated Gene' is the damaging mutation that has caused Bella to have what she has, the deadly combination of SCID, CHH and Hirschprungs."

Wow...ok, yep. Just give me time to swallow that dagger. 

"Yes, so my gene in combination with Lyle's confirmed pathogenic varient which causes Bella to have CHH, yes his has been reported in other CHH patients. "But yours has not, no Kyla, yours is the rare one that no one in the world has seen before, its the damaging one and therefore first of its kind." Hence why Bella doesn't have one of the 20 types of SCID, she has the worst they have ever seen, one that has not yet be recorded in any medical journals. 

I later found out that when they find a new mutation, one never discovered before, they can't record it in any medical journals or documents until a second one is found in someone else, so they can compare and confirm what it does. 

So WHY was Bella born with a rare form of SCID, combined with a severe case of Hirschprungs and CHH... Because I host a never seen before, severely damaging mutated gene...that's why. 

Pardon me while I go choke on this for the rest of life. 

A little unsteady

Bella blowing out her candles at her 3rd birthday/ her first birthday celebrated at home and not in hospital.

There's Some Good In All This

Bella's down to only needing bloodwork done once a month! yay! Bella's GI issues have continued to be quite the distraction from worrying about her Hemolytic Anemia in which she battled for over one year. I can happily note that she has been off of steroids for just over 4 months now and her Hematologist/Immunologists are very confident that the anemia struggle is behind her, its over. Bella's Hgb levels have remained well in the normal range in the 120's for months now as well, and so we will be thinking about a time for her to have surgery (#13) to remover her cvc Broviak line. 

This brings me to more good news, it has been 2 months now that Bella has (for the first time since she was born) been off all antibiotics! Those 3 antibiotics she was on for the MAC bug treatment were done Nov. 17th 2016. The CT and MRI in November showed her doctors that there were no lymphnodes inside her that had enlarged. And the ones they had been tracking specifically had either gotten smaller in size or did not enlarge. Which in-part tells them the MAC bug is dead and no longer a threat to her growing immune system. 

We still can't say Bella has a fully functioning immune system because we are still waiting for her Bcells to come in and work with her Tcells. You need Bcells to work with Tcells to make a working immune system. Thankfully Bella's Tcells have remained 100% so that she can fight viruses. But she needs her Bcells to come in to normal range so that she can fight bacteria and so that she can build antibodies and be vaccinated. They will test this level again in February. Please continue to pray for Bella's new immune system and that her Bcells come in 100% working with her Tcells so that she does not require IVIG for the rest of her life. 

Bella at Physio and working with her SLP

More To Come!

So Bella has been transferred from the the Transplant team to Hematology/Immunology Team! Basically this means that the transplant team is confident with her BMT success that they don't need to follow her as closely. Hematology is also backing off because they are confident that the Hemolytic anemia is gone and all that's left is Immunology which will become her Primary doctor/team because hey! Her being born with no immune system is why this all came about in the first place. What I mean from that ramble is they don't need to see her every month now. After February they only need to see her once every 3 months! yay for less trips to Calgary... in the winter...when it's -40... because we live in Canada.

PTSD sucks people. I need to make a shout out to my medical mom friend Stephanie, who's son is waiting for a bowel and liver transplant to survive. This week hun, you lifted me out of a horribly dark rut with one word. With one word you help'd shake my mind out of a hopeless state.

"Situational"

I've rejoiced so loudly on the good days. The days Bella is happy and not in pain, I shout it on the mountain tops. I've shouted the joy so loudly, thinking this is it! We have made it! The pain is over...and then another blow comes. And those blows after the rejoicing are knocking me down for longer and longer periods of time. So much so that this last blow left me in a state I never want to go back to. The pain Bella has been in for the last week left me with so much fear I was considering medicating myself just to get by. But part of me knew I really didn't need to go there, yet more of me was so exhausted I didn't care what it would take to be happier, to not feel fear or anxiety for just one minute of the day.

And Steph, you gave me this one word that help me realise what I needed to do to get me through the next blow, the next downfall where my daughter needs me alert and able. You helped me realise her bowel issues, though unresolved, are situational and I can regain the strength I need for the next blow, when she is going though a good period. Even if that period is less than 12 hours, I know what I can do now when this is situational. Thank you hun, what you wrote to me in that post helped me immensely, thank you.

Whats Next

We are encouraged that our Swift Current medical team is attempting to provide Bella their ability to conduct her IVIG infusions here in our hometown city! Thats a big step for our hospital and I hope it works out for us. Its a bit nerve racking to work with such a complex medical child when most babies are rushed off to the nearest capable centre, 3 hours away at the Saskatoon PEDS ward or NICU. So we will find out next week if our Swift Current team is up for the task. But I am thankful that they are considering it, it saves us travel time to Calgary for Bella. 

Bella's GI doc has been on the phone with me this past week and we are back on a med to help her bowel motility while we wait for her to get an ecg so that she can trial a different med for her bowels, that may work better than the current one she is on. Unfortunetly the next med can cause heart issue so Bella needs an ecg of her heart before they can allow her to trial this next bowel med. 

And then come February 22nd, that day will hopefully be our last day needed in Calgary for at least 3 months! All of her specialists will have this day to review her progress or current issues and give us the means to carry on with out them for at least 3 months. 

Here's to New Beginnings, conquering the situational and keeping Faith through it all. 

I'm free to be the greatest, I'm alive
I'm free to be the greatest here tonight, the greatest
The greatest, the greatest alive
The greatest, the greatest alive

Don't give up, I won't give up
Don't give up, no no no
Don't give up, I won't give up
Don't give up, no no no

Time To Cell-ebrate - Nov. 2016

November 20th 2016.
Day +605 Post BMT (Bone Marrow Transplant)

Hopefully if you understand Bella's medical history, then you have caught on to the way I titled this post. :) I'll be sure to fill you in on all the good news about her Tcells, Bcells and blood cells in this post! Let's Cell-ebrate!

Isabella is soon turning 3! On December 6th 2016. This will be her first birthday NOT in hospital, her first birthday at HOME. Time to Cell-ebrate!

She has spent 580 days in hospital. Those were mostly the first 2 years of her life, from birth. We have now been home for a total of 278 days! We have a ways to go, about another 10 months or so (well...303 more days to be exact) before she has finally been at home more days, than in hospital. But who's counting right!? Well, me....ya. But It'll just be more to Celebrate! 

So, November 20th is a special date. I wanted to make a point of writing a post on this date because of how special this date is to Lyle, Bella and I. I remember that Thursday very clearly. Thursday November 20th, 2014. This was the day we received Bella's SCID diagnosis and the first time that those first confusing 11 months of her life, were beginning to make sense. It was a bittersweet day. They sat me down in a closed room on Unit 2 in Albert Children's Hospital and began to tell me how she would need Chemo and a Bone Marrow Transplant to survive. But it was a cure! The bitter was over come by the joy of the sweet chance at a cure...she would survive. Boy, has she moved many more mountains since that day. March 25th 2017 will be Bella's second Life Day (Second Anniversary of her Bone Marrow Transplant). That will be another joyous day to celebrate and finally have a chance to see if we can meet Bella's Bone Marrow Donor.

So Holy Cow! Bella's turning 3 in like just a couple weeks! Last week it just sort of hit me as I was planning how to decorate and what cake to make... this is her FIRST birthday celebrated at Home. That feeling just over took me for a second and I'm still in shock about it. I am fighting to not let the pain and guilt of my baby girls first 2 birthdays, having to be spent inside a hospital, over shadow the joy of her celebrating at home...but its hard.

On to more good news! Bella's MRI and CT scans went very well and we no longer have to do blood work weekly. Her hgb has been very stable (118,112,113,117,113) and all of her specialist are very confident that the chance of a Hemalytic Anemia relapse is far behind us. So blood work is only once every 2 weeks now. Yay! Bella has been doing so well from a Transplant standpoint that all of her specialists are (in a funny way) fighting over who will remain her Primary. So her team of specialists are Hematology (The blood disorder docs), Immunology (monitor her new immune system) and Transplant (because she had a bone marrow transplant). They will all follow her for the rest of her life, but one generally is primary and then the main amount of information coming and going from Bella's Swift Current doctor only goes to one doctor, not 15. Each of the 3 specialists then have another set of specialists under the main specialists...if you follow. Lol It's a lot of doctors.

And more good news! For the first time in almost 3 years (since she was born) Bella is OFF ALL MEDICATION! YAY!!! Thank God. Her little system has conquered so much, this break for her couldn't come soon enough. Her bowels have been through the ringer with countless meds running through her tummy. I'm so happy her bowels can now begin to heal. The week of her MRI and CT was getting to a breaking point, the distention/bloat on her tummy has caused her so much pain and some set backs. It was getting so hard to manage that. For the last 3 weeks straight Bella has not slept through the night. And that is a big tell, because Bella has always been a good sleeper. SO she has been very uncomfortable. Now that she has been taken off those 3 antibiotics, her natural gut flora can start to come back and allow her system/bowels to function without bloat, gas build up and pain. Her doctors say it could take 3-6 months for the bad bloat/distension to go away, I pray it will go away sooner. She is still uncomfortable and not sleeping well.

There is more good news that comes with why she is finally OFF ALL MEDICATIONS! The main purpose of the MRI and CT scans were to look at all of Bella's lymphnodes. They needed to compare the size of them to the CT scans they took before and during transplant. The antibiotics were treating the MAC bug infection. They knew the antibiotics were working because her lymphnodes did not increase in size. After the year long course of antibiotics they needed the scans to show them all her lymphnodes remained smaller or normal size. An increase in size would suggest the MAC infection was still in her system. Thank goodness that is not the case, her scans were clear and they are confident the MAC bug is gone. They also needed to have her immune system in a state where if a trace of the MAC bug was still in a lymph-node they couldn't see or it came back, then her stronger immune system would know to recognise it, and kill it...like yours and mine have. The scans wouldn't of been able to happen if she had to remain on steroids. So happy that is behind us. So much has been riding on so much, I'm just happy it is all good news and good outcomes for our mighty warrior.

Bella's Immune System Outlook
Since Bella has been off steroids now since Sept. 5th, she is no longer immune compromised. Her Tcells have remained at 100%, meaning they have remained in her body at a number above normal and are functioning the way they should be, meaning they can kill viruses. For Bella to have a fully normally functioning immune system, Bcells need to come in and do the same thing, and thats what we have been waiting on for over a year now. That chemo like med to combat the Hemalytic Anemia wiped all her Bcells out, back in September 2015. Now they have started to come back in, but they are not at normal range yet. However, the last count of them has doubled from the very first count of them starting to recover... so they are increasing in numbers! Bella has a set of requirements that need to happen for them to even test her Bcell function off IVIG to see if she'll need IVIG anymore. She needs to be off steroids for a while, check! She needs her B cell numbers to go higher, getting there. And her system needs to makes its own Immunglobulins, IGAs and IGMs, hopefully soon. I bet most of you are like, "IG whats?" So I found this wonderful kids book that I am going to print for Bella from the Immune Deficiency Foundation. Its a easy to understand children's book that helps people understand more about the parts if the Immune system like the IGMs and IGAs and how they are important to Bella. Here's the link if you want to learn more, take a look:

https://primaryimmune.org/wp-content/uploads/2011/04/Our-Immune-System.pdf

We have about 6 months left for her Bcells to come up to normal range and work with her Tcells to make her fully functioning immune system. Once this happens, Bella will be allowed to start normal Immunisations and Vaccinations.

So what if her Bcells don't get to normal range? Well, of course we don't want that but we need to be prepared for that situation if it occurs. If they don't come in and work with the Tcells, Bella will need IVIG infusions for the rest of her life. These are the monthly boosters that protect her, like if she had a normal working immune system like you and I. She would not have a cvc in her chest for the rest of her life, so then it would also mean two needle pokes at least once a month for these infusions. The part I haven't figured out yet, and still have to ask about, is what exactly she is protected from? I know IVIG keeps her protected from a lot, but its not a measles vaccine or polio vaccine. So I need to find a lot more information out and try not to worry, but remain hopeful in the mean time. The things I think about around this topic are the hopes that one day she can go to daycare or school worry free. When we don't have to worry about any issue around catching something that, for example, if she were to catch right now...would be deadly.
Another thing, that is a current issue for us (could be a future issue aswell) is, we have to travel for these monthly IVIG infusions, to Calgary. Swift Current still has not acquired someone for this because it is Pediatrics. Our Calgary team is looking into this for us and hopefully even by Christmas they can figure out a way to have her IVIG done either closer to Swift Current or right in Swift Current. If they can do that, than no more monthly trips to Calgary! I think it would finally mean a trip to Calgary once every 3 months, instead.

Bella's MRI & CT
We are so thankful Bella got in for these earlier than expected. A lot had to come together for her to actually even be able to have these scans done, and then on top it, these scans needed to be done so that she could come off her remaining medications. It was a hard wait, but the day finally came. Bella has never had an MRI before only CT scans (3 total now) so I was unaware of every detail around a 2 year old getting an MRI. I completely forgot that receiving anaesthetic, to be put under, paralyses her bowel motility and just made all of her already horrible tummy issues, worse that week. So her bowel motility is still in recovery from the anaesthetic. You have to be completely still for an MRI, that's why she needed to be put under. Which is something I have never stayed around for, for Bella. This was the first time (out of all of her surgeries prior) that I stood there and watched them put her to sleep. And now I know why I never felt I should, all the times before... it was really difficult for me to watch. Bella was completely fine, totally comfortable...its me and what I saw, that was really hard. Bella's nurse for the MRI, of course new Bella and her many surgeries and was surprised I hadn't ever been there for that part before, but she understood. I guess for me, walking into the OR or past the area where they always took Bella away for surgery, gave me a sense of worry and fear...and I never, ever wanted a micro ounce of fear to enter my mind before any 12 of Bella's past surgeries. I felt I could remain calmer, stronger and more hopeful if I stayed out of the areas where that sight could trigger worry and fear to enter my mind. It helped that Bella always went with her surgeons, with a cheery smile or just excitement over a new room to be in, out of her isolation room. But I knew if I saw them put her under, it would be more difficult for me to remain more positive in that OR waiting room.

MRI's are not surgery of course so everything was done right in the room, including putting her to sleep. It began faster than I anticipated and I didn't get time to ditch that part and run away to the waiting room. Instead I fumbled through some jumbled words that fell out of my mouth as the Anaesthetist starting infusion Bella's CVC line with the anaesthetic. The doctor and nurse had a good chuckle, and I did too after...but it was hard for me to watch her struggle to keep her eyes open and then lay there limp.

The doctor prep'd me on everything they would do before, during and after the MRI so I had just thought I was going in the room to attached Bella's Gtube vent tube and then go. Nope, they were all set to start before I could leave the room. So as the doctor hooked up the anaesthetic to Bella's line I saw him attach this large white substance in a tube. And I think I said something like, "So, that's the anaesthetic? Doc says,"yes."  Then I say, "Oh, okay, so I'm sure given your obvious expertise that that's the correct amount for her size, weight and all, and ya, of course it is....sorry."
Then we all kind of giggled around my nervous, jumbled question.

How Is Our Ex-CELL-ent Bella Brave? See what I did there?
Well I'm going to need to brag here a little bit because my two year old (soon to be 3y old) is already singing songs! She has memorised a ton of songs on her own and loves singing.She knows all the words to Twinkle Twinkle Little Star, Old McDonald, ABCs, Baa Baa Black Sheep and Row Row Your Boat!

She loves dancing! I hope so so bad that come spring her immune system is functioning well enough so that I can put her in some music or dance classes. I'm just so thankful she can and does enjoy these things at home given all the isolation she has had to go through. Makes me want to cry so many happy tears when she just gets up to sing and dance around the room.
Bella is doing wonderful at her physio appoinments for her right wrist and hand function. Thankfully part of her MRI focused on the nerves and muscles in this wrist and her Calgary Specialist will review what the MRI showed, with us in Calgary, next week. We are hoping she doesn't need surgery to regain full function. Bella will wake up almost every morning asking if she gets to go to physio, she loves it. Potty training has taken a big hit. With how bad her tummy distention has made things, its really uncomfortable for her to sit in certain positions. I'm so happy her bowels can begin to heal so the bloat goes away. I have been worried about it affecting her physical development in terms of climbing, running, potty training, etc. She'll catch up no problem though, just like after every other surgery shes had. She always showed that it won't hold her back for long.

One day about a month ago the teacher in me emerged and I showed Bella some learning worksheets. Well she loves them! I just printed off some fun sheets that help her learn to write, draw, count and color. Now sometimes if she is bored and trying to think of what she wants to do next, she request "work sheets". Her favorite part is having Lyle or I help her write her name at the top.

Waiting has been a tricky thing to teach. I haven't googled this special milestone yet, but I'm assuming its probably not in the near future. What I have tried so far is asking Bella to count her fingers while she waits. Well...that was a quick FAIL. Now all I ever get is a quick ten seconds before a big'ol melt down happens. She can count to ten really well, so I think its time to start counting to 20. She's almost there, she can get to 16 on her own. But now, when I say something is not ready, or wait a little longer she looks at me with these huge puppy dog eyes, sometimes with tears and says, "Okay, mommy...but just a little bit?" Melts me into a puddle every time.

How Am I?
I have to say, my PTSD treatment sessions with my Mental Health nurse have been helping me in so many ways. I am so thankful my doctor set me up with a mental health nurse for this, I'm stronger in more ways than I could see before. And I am open to share because it may just help someone else. It was daunting at first when, after understanding our story, how long my nurse thought I may need support in this way, for. But the way I have suffered from PTSD in not a typical way. Many understand it as someone suffering from one traumatic event or one traumatic experience. I have had many, given Bella's experiences, and then also current situations continue to be constant triggers trying to pull me into a constant state of fear vs healing from all the trauma. I can sum all this up in almost two words, "Bella's Bowels." The conditions, episodes and issues with Bella's bowels have been a constant from the day she was born. They have not been a single event, or a single traumatic episode like the 2 times she went septic. They have been the cause of many traumatic events, but also ongoing trauma. Bella's Bowels have been a constant trauma from birth and I am finally receiving support, coaching me on how I can train my mind to not be so severely effected any longer. It can be quite debilitating some days. The photo I shared about the Linen Cupboard Metaphor is very helpful when understanding this form of PTSD. And given recent issues with Bella's distension and bloat becoming harder to manage, this helped me not completely break down when Bella has tummy troubles. Lately, fear would swell up in my mind, memories from the first months in Saskatoon. Fear around bowel blockages, scar tissue legions occuring, micro perferated bowel causing sepsis, puking causing her to aspirate and gain infection, and on and on. So much of this fear would build inside me in the recent weeks. If an afternoon went by and Bella hadn't pooped. It would cause me to breakdown in fear, crying scared about what this meant, or is everything still ok?
I am thankful for my MH nurse and the treatment material she can use to help me, like these PTSD tools and EMI (Eye Movement Integration therapy). I'm getting closer and closer to being able to function through daily life and be more prepared for setbacks or minor medical bumps on Bella's road.

My Talk With RN's (Registered Nurses) of the Future
Eee! I'm so excited to talk about this! Having been given this opportunity has made me feel as though my whole purpose, after going through what I have with Bella as a Medical Mom, has been fulfilled! I want to do more!
I'm so thankful for the instructor of this RN class to invite me into their classroom to give my perspective and story. I was able to share our story so that our rare long term hospital stay can help them better understand patient and family experience and better communicate with their patients. And the reward from being able to speak with these students, it priceless.
Thank you to my fellow medical parents from my online groups who offered me their input. Please know I compiled ALL of what you all wrote and was able to combine it on handouts for each RN student. The RN students were so kind and receptive. As my eyes would well up with tears, explaining certain experiences, they listened with calm open ears. And the feedback they offered me after I finished speaking is so valuable. I was able to record my talk so I can prepare for more opportunities like this, and I look forward to many more! The instructor was glad to pass on my information to her colleagues in other colleges and universities. I am making time to also create shorter videos of sections from my hour long talk with these students. My intent is to post these videos online so that I can reach more student nurses like I have with this one class. I also really need to put together some sort of video/picture summary of our story. Its getting hard to use words in a condensed manor to share all we had been through in hospital for those 2 years. I also need to start my talks with, "Bella is currently doing very well." I probably should not start with "she has been through 12 surgeries, and bone marrow transplant, 2 septic shock episodes"...without stating first...that she is still alive! One, most likely worried student, interrupted me (with a slightly panicked tone) in the beginning, to ask how Bella currently is doing. Oopsy on my part there. But hey! first time for everything, and I will get better at these talks. I hope I get to do many more, especially for the nurses in our own province.

Thank You's
I am constantly thinking about and remembering all the donations, financial support, gifts and all of the other ways all of our friends, family and even distant friends have support us. Please know I think of this daily and not a day goes by where I wish I could see you face to face to say thank you. So if you are reading this and remember how you have supported Bella, Lyle and myself, please know I am remembering too and I'll never forget, thank you. The GoFundMe page that our dear friend Becky started when we were still in Saskatoon has carried us so far! The unexpected long term stays were SO long, and this support was a huge blessing that helped us through so much of the extensive medical expenses that added up for Bella's care. Thank you to all who supported us from there.
I still think about the photo-shoot that Natasha conducted. I look at those photos and can remember the faces of who gave so much to help. Thank You all!
The other week a restaurant in Swift Current called The K, prepared a separated, secluded section just so that I could feel comfortable having Bella out in public without worry of the risks a public place can bring like catching a cold or flu bug. This special gesture from The K allowed Bella to have a restaurant experience with my Aunty and Uncle who had not had a chance to see her since we have been home, and they were passing through Swift Current.
My goodness I could go on and on with many more Thank Yous. This road has been so hard, and stupid long...the amount that you all have supported us with has been breathtaking. I cherish it all and will pay it forward, and teach Bella to pay it forward also.

Special dinner date at The K Restaurant 

Thank You for the support and memories!

Bella at the very clean and comforting Urban Ground Coffee House in Swift Current

Thank You Alana and Prairie Pop'n Balloons for the fun balloons that are still making Bella giggle every day.

A last little bit of neat news!
Remember the promotional video we were asked to do for the Ronald McDonald House in Calgary?! Turns out that video got pretty far and recognised in an exceptional way! The President of RMHC Global  chose our video out of hundreds of options, to be featured at the Global Gala in Pasadena, California! How cool is that?! All of the major CEOs and Employees of Ronald McDonald Houses all over the world got to see our story, Bella's story. Thanks again to the work of the MARCOM team and producer of NRG Media for making this happen and being so kind in they way they recorded and portrayed our RMH experience. It's also been exciting to hear that our promotional video has been viewed many times in a few of the Cinema theatres in Calgary, AB aswell.  Here's the link to the videos they created, starring Bella and I. The one featured at the Global event is the interview style one of me talking. (Top, left when the 3 pop up on your screen.)

Link: https://drive.google.com/drive/folders/0B7-zMrUJ7EcSLVhURjZlcXF3TDQ

Videos:
A reminder that I quite often share up to date, day by day news on Bella's condition on her Facebook Page: Isabella's Mustard Seed. Please visit her page if you'd like to see updates on how our warrior princess is doing. I also have not figured out how to post videos on this blog yet, so I save those for her Facebook page as well. I recently posted a great one of Bella announcing her "Best Day Ever!" because she no longer needs any medications...and also because the words were on her shirt, and that got her super excited to shout it out loud...all day. :)

Let's Cell-ebrate Good Times, Come On!