... But she said, "Where d'you wanna go? How much you wanna risk?
I'm not looking for somebody with some superhuman gifts.
Some superhero, Some fairytale bliss,
Just someone I can turn to, Somebody I can kiss.
I want something just like this."
I've spoke before about how much songs can ignite a light in my soul and relief in my mind. I've written in my chapter (in the Dear Stress book) how some songs can help push out the clutter and worry in your mind.
This song is our 2017. It's my daughter not looking for some super hero, with super human gifts...but instead her mom, this summer and something just like this. She's happy and I'm taking risks.
In my last blog post (from May 4th) I touched a lot on my Mental Health, my complex PTSD, how it has affected myself and others, compassion and trying to support others in a similar situation. This post will focus more on Bella. My last post came after we spent the previous 3 months in hospital (Jan 25th - March 22nd) for an unexpected, very life threatening, bowel blockage and recovery. This post, right now, comes after Bella's second summer, at home, and most enjoyable, pain-free summer of her life yet!
I've been reading books of old, the legends and the myths.
Achilles and his gold, Hercules and his gifts.
Spiderman's control and Batman with his fists...
And clearly I don't see myself upon that list.
But she said, " Where d'you wanna go? How much you wanna risk?
I'm not looking for somebody with some superhuman gifts.
If there's one word in which I could describe my daughter after all she has been through and put up with yet came out excited about life! ... it would be: Adaptable.
She does NOT need someone with super human gifts, she's clearly superhuman herself. And I have finally been able to put away the constant fear and worry that she needs me as that superhero...she doesn't.
Bella has adapted to and overcomes every hell she faces, big or small.
This quality in her, in her spirit, this profound gift from God is what makes me consider that it is not just the prayer, support from family and friends, my mental health nurse and doctors that have helped me overcome the anxiety of what may come next...no, it has been my daughter and how she fiercely adapts to every hardship thrown her way and comes out smiling every. single. time. I don't fear what may come next anymore.
Bella's Best Summer Yet
I have been saying this a lot but the main reason I have not blogged in 5 months is because we have been physically, mentally and emotionally enjoying a pain-free summer and quite simply just taking it all in, in a carefree manor.
Oh, I want something just like this
Doo-doo-doo, doo-doo-doo
Doo-doo-doo, doo-doo
Doo-doo-doo, doo-doo-doo
Oh, I want something just like this
Here is a month to month summary of some great accomplishments from Bella's 2017 summer:
May: * Bella fought off a line infection and got to keep her cvc Broviak line. (This is the line that prevents her from getting poked for blood or IV meds. It saves her in so many ways, she needs it for her TPN or if she ever gets dehydrated and needs replacement fluids...however, it restricts her from so much as well, like swimming and safely going to a childcare facility.
June: *Maintaining weight and tolerating large decreases of TPN requirements. *Still loving her vanilla flavoured formula even though its the ONLY oral food source she is allowed. *Maturely understanding that she can not remove herself from her bed in the mornings that her IV line running from her chest, is hooked up to the towering IV pole that could risk her line pulling itself out of her chest.. ya that made it hard to sleep for A LOT of nights.
July: * Bella enjoyed her first overnight stay with Grandma Heather and Grandpa Buck where they managed all her ostomy care, line protection and food restrictions.
August: * Bella accomplished a full month off of TPN (The nutrients she receives through IV lines when her bowels need rest.) * After 6 months of not being allowed to eat at all, we were given the go ahead to let Bella try liquid/soft solids!! Her first choice: Tomato Soup, followed by Gravy.
September: * Celebrating not having to travel to Calgary, AB since May!
I think what I have been celebrating the most is her consistency of feeling so so good. Since her bowel surgery back in January Bella did not have one episode of distention or bloat, not one. Her bowels have been happy all summer. And also her resilience when it comes to adapting to when shes allowed to eat/drink and when she's not. This girl kept a sane mind at the age of 3 even though she had to go from months of not being allowed ANYTHING in her mouth, to seldom sucking a water dipped sponge to only 1 juice box (250mL) size of her formula a day (24hours) to 3 boxes a day to now 1/2 cups of soup and small amounts of liquid solids. Can you even imagine that 9 month process for yourself?
Who Is She?
Bella is still the girl who lights up a stranger's life walking through a mall, still the warrior who has survived all odds against her and still the little warrior princess you never saw coming.
It's funny how I used to get so bent out of shape when we would walk in public and everyone, yes I'm talking every person that walked by her stopped and stared with amazement, curiosity and wonder. I'd cringe because I knew what was coming after the stare, it was the question "How old is she?!" or the comment, "She's too little to be walking!" I knew they were blown away by this child who looked like a super-genius-one-year-old but I've come to realise its more than that. People are drawn to her light and not solely because of how she seems from the outside but I think now because of what they unknowingly see on the inside of this bright sole that lights up their day.
Bella smiles, talks to and converses with everyone she meets. She'll hug and kiss a friend she just met. She still gets excited about bananas in the grocery store even though she knows she can't eat them! She's a light and I'm so happy she shines in so many peoples lives.
I still have strangers cry instantly when they come to realise the 14 mountains I have tattooed on my arm and back count the surgeries my little light has had. And as they look away from my tattoo and into her eyes their tears disappear as they question, "But she's so happy!?"
... I know.
She is a strength that you never knew you had. When I think about all she has been through, I know that I myself can get through anything. Bella is the warrior who has battled confinement with poise. She is the soldier that tells me she is hungry every minute of the day yet understands when her tummy requires a break and simply replies, "Okay mommy." It's inspiring that she carries on with this happiness in life that pure strangers are recognising out of the blue, and in some ways that comforts me, and I know... she's getting through this all okay.
Where Are We At Now?
Currently we are in "delay mode" and I'm not sure if I should be relieved that Bella hasn't had to endure her 15th surgery yet or upset because her GI team is taking too long to figure out more important information about her unknown bowel disease that in my opinion, could save her more pain in the future.
It's mid September and back when we reviewed "Best Case Scenario" with her specialist team and surgical team back in March before we left Calgary, they had told me that if Bella can come off of TPN for at least one month by the end of the summer, they could plan for more bowel tests and her mapping surgery come September. This was quite important to me because #1 We do not know what extremely rare bowel disease she has and the Mapping surgery involves biopsying her entire remaining small bowel (she has no colon left due to Hirschprungs). These important biopsies could possibly tell us what her bowel is doing, how it functions, what it needs to function properly and what could harm its function so we could avoid those things. #2 This surgery could take away her ileostomy pouch and if things looked well enough she could start Kindergarten without the hassle of a pouch, which would be a lot for her size and current ability.
So after we had worked so so hard and Bella surpassed all expectations by coming off TPN for one month by the end of August, I was disappointment her hard work felt like it was all for nothing as her GI team told me they did NOT expect her to get that far that fast and that nothing, not one test had been booked for her bowels in which surgery requires results of before planning the huge surgery. I was quite upset, and my upset was very clear to her team. We worked our asses off for more "wait and see"?! ... no thank you.
So I composed myself and called them back with everything I needed to say, written down in front of me so I wouldn't forget what was important for them to truly understand and how we could move forward with Bella's exceptional progress, with time on our side instead of against us. The conversation went way better and we gained a much clearer understanding of where I was coming from, what Bella needs and what her specialists team could do.
They needed to understand that I am not pushing for a surgery, I'm not wanting my child to endure more tests and trials in a hospital that are not comfortable. No, they needed to see that I need to know, (with their expertise to guide me) when it IS appropriate to push her and when it is not. They have proof now that Bella will overcome any mountain thrown her way with the odds stacked against her, and yes many of those mountains have been conquered through miracles but many of those mountains have been conquered by her pure strength and hard work...with mommy pushing her at the right time and knowing what she can and can't handle.
As a team (medical personal + parent) we reviewed what tests would be appropriate for Bella, given her progress, given what we know and don't know about how her bowels choose to function when given formula vs solids. We discussed what next steps would be best for Bella when thinking about her future and time lines and when the heck I can get back to work! This all matters when it comes to planning the up and coming motility tests and major surgery our little warrior must go through. I mean she is going to turn 5 soon, that doesn't get delayed. I want her to be able to start kindergarten with the least amount of medical issues as possible.
We leave for Calgary on Tuesday.
What's Next?
In the next 2-3 weeks Bella's GI team and Immunology team have 6 major tests lined up for Bella. We also have meetings planned with her Surgery team. These tests will involve procedures that Bella will have to put up with as an outpatient, but they will still take time and may not be comfortable for her. Please pray for her to tolerate these upcoming tests, that they involve no pain and she gains comfort throughout. And also please pray that her team of specialists gain all the information they need from these tests so that not many are needed.
Her Immune System
Yep, there's been a lot of bowel talk from birth and lately her immune system talk has been put on the back burner...but we have some worries here. Bella's bone marrow transplant happened March 25th 2015. That was the day her new immune system was to grow and learn and come to protect her, because she was born without one. So here we are, almost 3 years post BMT and that hasn't happened yet. Her Tcells came in 100% and thats been huge! They are the virus killers. But in order to have a fully functioning Immune System, you have to have Bcells and Tcells working together. Bella still does not have any Bcells, and it's a constant hell swirling in the back of my mind.
Bella has been getting her "Immune Protection" (IVIG) infusion monthly still. This is where she is hooked up to IV lines for roughly 4-6 hours once a month to receive this monthly booster that protects her just like when you and I have vaccine and immunisation shots. Problem is her Immune system is not creating Bcells or the Memory Bcells to learn from this IVIG infusion and so the protection wears off by the end of the month and she becomes very vulnerable again. Her IGG levels (the number that shows if she is making Bcells) is supposed to remain above 5 and consistently hers haven't even got above 3. Well... last month they dived down to .3. Quite, quite upsetting and scary. And her team is unsure as to why this is happening, especially when a while ago her blood work was actually showing small signs of Bcell recovery.
Please pray for Bella's Bcells to come in, and work with her Tcells to give her a fully functioning immune system and give her the ultimate chance of protection so she does not need to live a life of fear of deadly infection or monthly infusions.
In Calgary next week her Immunology team will do specialised blood tests for Bella's immune system that can not be done in Saskatchewan. Please continue to pray for Bella's doctor's and specialists to fully understand what is happening here.
I've been reading books of old, The legends and the myths.
The testaments they told, The moon and its eclipse.
And Superman unrolls, A suit before he lifts... But I'm not the kind of person that it fits.
Just something I can turn to.
Somebody I can miss.
I want something just like this.
I want something just like this."
Oh, I want something just like this
Doo-doo-doo, doo-doo-doo
Doo-doo-doo, doo-doo
Doo-doo-doo, doo-doo-doo
Oh, I want something just like this
Doo-doo-doo, doo-doo-doo
Doo-doo-doo, doo-doo
Doo-doo-doo, doo-doo-doo
~ "Something Just Like This" By The Chainsmokers ft. Coldplay
