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!