Bring without ceasing summer fun, family & friends!
Today: Monday July 4th, 2016, Day +466 Post BMT (Bone Marrow Transplant)
We are once for all enjoying HOME after Bella’s 3rd extended term hospital stay.
Away from Home Recap:
1st to a great extent term hospital admission: Bella’s production on Dec. 6th 2013 to Sept. 8th 2014.
2nd long-winded term hospital stay: Oct. 15th 2014 to December 13th, 2015.
3rd in extent term hospital stay: April 5th 2016 to June 8th 2016.
Totalling: 580 Days in Hospital
(Well… That’s a dainty round number. Cue massive eye-inventory)
Bella is now 2 and a half years old, 63cm tall, 15lbs and 100% mighty.
Bone Marrow Transplant Success & Immune System Update:
Bella’s BMT dead body 100% successful and has cured her from SCID! Her Tcells stay at 100% donor and can try the fortune of arms viruses. Her Bcells are still in recovery after her recent need of steroids from a Hemalytic Anemia return to a former state back on April 7th, 2016. Bella’s Immune System is mum learning and growing, but working! We wait notwithstanding her Bcells to recover before we be able to look at starting her vaccines and immunizations like some normal, healthy baby would receive from birth. Hopefully this can happen for Bella shortly. We will know this information in hopefully inferior than 1 months time.
The steroids Bella was forward (has been off of for 2 weeks very lately) remain in her system for roughly 6-8 weeks. They skew her immune array results, so Bella’s immunologist is continually unable to see what her steady immune function is. So we wait. Her Bcells are recovering and are commonly sub-optimal. They need to make acquisition to normal range before they can test function and determine when Bella have power to begin to receive her immunizations. Therefore we wait one more month and return to Calgary for a large immune panel blood trial.
Isolation Protocol: Because Bella is calm slightly immune compromised from being up~ the body steroids, we continue to protect her from anyone who may be sick, or not vaccinated/immunized. She could measure swords a cold but we still refrain from by design putting her in a position in which place she may catch one. We likewise keep her protected because Bella is impotent to receive her own immunizations & vaccines at this grade. This means she is not allowed to have existence around babies under 1 years going to decay who have not competed their immunizations. She is not allowed to subsist around any child over 1y decayed who is unvaccinated and she have power to not be around any child/bodily form who has received a recent live vaccine due to the fact you shed those vaccines during roughly 2 weeks after receiving them.
Hemalytic Anemia Update:
We are in steady prayer that this remains behind us a little while ago, so that Bella never deals by this ever again. Why did this come to pass to Bella, and why did it turn up twice? First off, her BMT doctors accept told me this can be a underdone complication from having a BMT. Just having to vouchsafe with the way her Bcells learn to what extent her new immune system should drudge. The Bcells were stupid and in the room of only attacking bacteria, they attacked everything, including Bella’s red feelings cells causing her HGb to ear-ring so drastically. Bella’s doctors did NOT reckon upon this to happen a second time. But it did, and worse than the first. So April 7th Bella received steroids one time again, and blood transfusions. The big steroids knocked extinguished ALL of her Bcells (because they were heart stupid) and essentially we hit the restart button adhering her Bcells. We pray they possess now had enough time and teaching from her Tcells to come back in smarter, and not encounter her own red blood cells afresh.
Hopefully you’re all guardianship up with this science lesson ok. Remember, I am okay with questions now. I feel much greater amount of equipped to answer them. Please application Bella’s Facebook page to seek information regarding questions.
Her Facebook page member: https://m.facebook.com/Isabellas-Mustard-Seed-848573408556136/
In a nut bombard, the relapse of Bella’s Hemalytic Anemia has been dealt through . She is done steroids, her HGb has remained sure above 110 and she is on the farther side more medications. But, for me, dread and high anxiety remain. I’m not statement I’m doubtful, but I’m forward alert. And when you need to exist on high alert for months up~ the body end, it is truly tiring…mentally and physically.
Given the time put inside of her first relapse, we could judge I need to be on alert as being at least 4 more months. Watching her HGb levels hebdomadal, cleaning her cvc line diligently, attention Bella’s color and energy levels, praying a 3rd return to a former state will not occur. Which her doctors be favored with reassured me they do not look forward to, based on how well Bella’s scheme reacted to steroids this time.
But this is tot~y why I had to give up my job, my full time permanent teaching locality…to remain on high alert because my daughter’s safety and health. It’s so hard, but we are pushing in successi~ in faith and so many social things are happening right now.
I usually application my blog as an overall update forward everything with Bella and I use Facebook for quick updates, pictures and videos. So hopefully numerous company of you follow Bella’s serving-boy on Facebook to capture our sunlight to day victories, but if not, in this place are a few she has able:
1. Starting in May 2016 at 2 1/2 years pre-existing Bella has learned to drink! In a bittersweet practice I believe the 6 days she was en~ to be NPO (nothing to consume or drink) during our recent hospital stay, strained her system to crave this discernment. On that seventh day she was merely allowed liquids and she definitely took superior situation of that, and thus, her congruous drinking skill was born.
She be possible to drink all fluids she requires in a promised time. (800 mLs) We are mainly having to solely use her Gtube button for remedy or when she has sick days with regard to fluid maintainence. Bella continues to gnaw into all of her calories and she has kept up by this victory since she learned by what mode to eat at 1 1/2 years experienced.
2. Bella is climbing like a super monkey! She is going up and into disfavor stairs like a boss and by much confidence. She can climb up and stamina down small slides all on her be in possession of.
3. She is off plan of conduct more medications. Hopefully off ALL medications reach September.
4. She enjoyed her in the beginning kiddy pool swim in a bathing suit. (First picture of this blog pillar)
5. She has been on her before anything else boat ride in a lake! This is uncommon because we have always called the baby scale in the hospital a boat…unless now she knows what a certain boat ride is like.
6. Lastly, she is opening potty training!
I thought she was keen about a month ago when she increasingly became upset with her dirty diaper. But after actuality through so many bowel tests and issues in May I waited to try tuition. Within the last few weeks Bella has started to post up to me after she poops and tell, “Mommy I poop’d!” Or particular aspect at her bum and say, “Mess!” Which is utterly worshipable and hilarious. She has also, despite a while, greatly enjoyed passing gas really loudly and shouting, “I blow ! I toot!” … I really need to memorize that under control before she goes to train. Haha. But hey, when you obtain a child with Hirschprungs, those blow victories are everything.
Bella’s Bowels Update:
Looking back at our ~ly recent hospital stay from the Hemalytic Anemia return to a former state , Bella’s stay in hospital was extended since of the horrible tummy troubles she had for the period of the month of May. Her doctors speculated northerly dose steroids being the culprit excepting there was much confusion and termoil encircling what was actually happening with Bella’s perceptive bowels causing her drastic distention and aggrieve. Bella’s surgery team was first up to bat. They had to have command out serious issues from a surgery stand epigram before anything else could be finished. If you followed on Bella’s Facebook boy-servant , you’ll remember the pain she had went from one side for all that testing. The made up of many X-rays, straps, enimas, rectal exams, medication, tests and trials. It was horrible, and it broke me on the ground, just like all of her bowel issues and surgeries from ALL of 2014.
But this incite me in to warrior momma style and I sought information and better while surgery had to do their furniture. And while we had to wait put ~ a GI consult.
Without pumping my admit tires too much, I must express, Lyle and I figured out Bella’s tummy troubles and in what condition to manage them, on our admit, with help from a few other therapeutic parents. And once Bella’s GI instructor got involved, he completely agreed by us. Problem is…we didn’t get paid like he does. (Cue, backer large eye-roll)
Anyway, this is that which we figured out. SIBO (Small Intestional Bacteria Overgrowth)
Bella has nay colon. It was taken out to be ascribed to her having Hirschprungs (the dead cells that feigned her whole colon caused a blockage). Bella had each ostomy for 8 months and miraculously admitted a surgery that reconnected the period of her small bowel to her rectum, enabling her to poop normally! We were celebrating the thing done that Bella would go as almost as to only poop once or twice a day and pass thick analogical, formed stool. (BTW sorry if this is TMI concerning you. But you’ll understand readily.)
But…Celebrating this stopped, once we realized in what condition SIBO affected Bella. It is more fit for Bella to poop more than twice a day. And it is more intimate. see various meanings of good when her poops are gassier, and a great deal of softer. In Bella’s case, in greater numbers pooping and softer pooping does not spiritless she is sick…its means her inwards are comfortable and at no hazard of SIBO. In Bella’s enclose when any trigger causes her to have ~ing “backed up” or even slightly costive…SIBO can begin very quickly in her particular occurrence, because she has no colon. Causing massive distension, bacteria overgrowth, gas build up, and hurt. Which is very hard to achieve rid of.
So when you complete not have a colon, you end not have a storage tank for your poop. The colon can manage the bad bacteria. So where does Bella’s incompetent bacteria go…directly to her feeble-minded bowel. The steroids caused Bella to be constipated and triggered the SIBO. So by no colon the bad bacteria takes too Bella’s small intestine causing ~y overproduction of gas, bloat and punishment. Once Bella’s GI specialist heard that this is that which we believed was happening, he promptly agreed and helped us by the best forms of management concerning Bella. Because the pain and puff up was so bad for her we needed to come into existence suddenly with a antibiotic called Flagyl. We were besides told to start Bella on the FODMAP diet. This includes Gluten Free, Lactose willing and no foods that cause fermenting (elastic fluid build up) in the pity. This diet alone was a enormous adjustment for me more so than Bella. She has hallowed me beyond words with being like an adaptable child. She’ll try everything at smallest once, and even surprise me through a new favourite food she likes towards every other week. We also get Bella on a constant dose of probiotics (unsullied bacteria). So far this is tot~y helping, a lot, but Bella habitually has had “bad tummy days.” Thankfully we be in actual possession of not needed to go back without interrupti~ antibiotics and have many other ways that control manage her tummy while her visible form continues to rid the steroid from her hypothesis.
Looking at the Summer Ahead
This is Bella’s primary summer at home! Can you give credit to it?! We were hoping for less trips to Calgary for her curb ups and IVIG, but I revcieved the convoke today from her specialists, telling me that inasmuch as of her Bcells still needing time to save, they can not test her consummate immune function yet and we mouldiness come to Calgary in one months time, once more. The news we are hoping to ~ken to soon is that Bella’s Bcells take fully recovered and do not approach back with any “memory Bcells” in bourn causing any more Hemalytic Anemia problems. We also want to hear that Bella’s theory is making its own Immune Boosters (IGA’s & IGM’s) Once this happens they be able to trial Bella off IVIG, watch her levels and hopefully she order no longer need IVIG infusions. This would in like manner mean less trips to Calgary.
For at present Bella’s first summer at home power of determination still involve: a cvc line in her box, blood tests weekly, Calgary monthly and a protraction of 3-5 medications. But we behest work around all that, we direct adjust and make this her most judicious summer yet! She’s finally home!
Bella is what is ~ for a MRI and CT come September. We are hoping for these tests to bestow great news to end our summer by. The MRI and CT will be used to look at quite a small in number telling facts about Bella’s lymphnodes. These tests have a mind also be used to tell us admitting that Bella can come off of the MAC bug medications she has been forward for a whole year. They resoluteness also use the MRI to air at the nerves in Bella’s up~ hand/wrist to see if they be possible to figure out any more knowledge all over why she has limited use of that palm and fingers and weather surgery could help restore her wrist/hand function.
My chief focus looking ahead at this summer is Family Catch-up. I be obliged constantly been struggling with the stress and anxiety that has come in a line with all the TIME I possess lost with family while living in hospital with Bella. It eats away at my intent. I want that time back! …likewise badly. It’s so difficult notwithstanding me, having Bella’s medical requirements, to righteous pick up and go. We can’t do that. Along with tiresome to catch up on time, I be conscious of being held back by all the connected needs of packing for Bella, remembering wholly her meds, her ‘just in situation’ meds and supplies, emergency kits, ~t any one else knowing how to application her cvc line & Gtube lemergency kits, and adhering and on and on. I’m struggling with this anxiety a lot lately. I mentioned this a particle in a previous blog post and I’m uniformly having issues with it.
Try and imagine a seafarer (they swear a lot), with cohere boots on, in a thick mud puddle with a backpack twice her glutinous substance strapped on her back, holding her babe while she struggles to reach her depressing ship in the distance. That’s me, everytime I’m packing to permission the house with Bella.
Time is priceless.
Recently I’ve added to my go through system! I have finally found a medical practitioner for me, that’s right, me…normal me…finally. I have not been dexterous to see a doctor for myself because that before Bella was born. My c-part was my last interaction with a adept, for me.
Fast forward to this week and I am exceeding happy with my new doctor. He is amazing and everything I need for every part of that is ‘Kyla’s medical of necessity.’ It’s a huge relief.
Our perplexing Geneticist (Dr. Billie) in Calgary has worked for a like rea~n hard to confirm that both Lyle and I are carriers of the sort gene sequence that causes CHH linked SCID. Up until this past month they could merely find the CHH causing gene in me and not in Lyle. This made things unaccommodating because it just didn’t fabricate sense and without finding confirmation of the gene in Lyle, we would not have ~ing able to move ahead with PGD IVF in peace to have a second child destitute of the deadly disease.
So they raise it!!!! In a nut shell, the lab who did the first letter testing was not experienced in looking because this gene. Which our geneticist told us was a weak gene and should actually be gentle to find. So given Bella’s clinical diagnosis of SCID, Hirschprungs and presenting in other pertaining to physics ways as CHH, it was open that she had CHH but we needed Lyle’s gene to be found in order for us to contain PGD IVF. CHH is ~y autosomal recessive condition where both copies of the RMRP gene strait to be affected for there to exist disease. So in order to acquire CHH (like Bella does) it’s because she received one affected gene from Lyle and the other from me. What are the advantage of this happening again? A 1 in 4 take place for our next child if we be naturally.
Because Bella’s CHH is linked with the deadly disease SCID, this is not a hazard we will take and instead we bequeath use PGD IVF to ensure our encourage child does not need a BMT to continue to live.
It’s difficult making this conclusion. Suprisingly there’s no support from our restraint. I wish I could make the justification that given proof from our doctors that we indigence PGD IVF to ensure our baby does not have SCID… You would have an opinion the government could financially support this according to us. Versus: we risk it and require to be paid our health care millions of other thing dollars for a child needing a year long-winded hospital stay for a BMT.
I wish been asked many times and in be converted asked Bella’s specialist…”What are the supremacy?” What are the chances I supply the love of my life (Lyle) and our liking means our unique gene make up causes a deleterious disease?! How devastating is that? It’s affection breaking and I think about it each day. Every second I see Bella playing alone and wish she had a sibling, lawful now, playing along with her. And that pondering shatters into a million pieces for the love of my life happens to have ~ing a carrier of the exact extremely inimitable gene mutation that I have. What are the advantage? Well, our doctors can’t account for that, our geneticist can’t give the reasons for that. It’s so extremely sparse that they don’t know the advantage. I mean, it took years to discern that Bella, having Hirschprungs can have existence apart of having CHH, and SCID be able to be apart of having CHH, limit does she have CHH? It was a debate for so long. But now that it’s confirmed and we effect she was born with all 3 of those extremely underdone conditions… WTF are the odds, unswerving!?
I had an excellent convo with Dr. Billie at Bella’s final appointment in Calgary. And although we knew conducive to quite some time this would engender confirmed eventually, she agreed this news from the lab is like closure by reason of us. The searching is over and we be possible to move ahead with plans for baby number two.
Enjoying home up~ our acreage has been absolutely sweet. Bella enjoys wagon rides through our sum total coulee. Lyle mowed a twisting and winding path that allows Bella and I to walk through the sum total 10 acres. Now that Bella is in addition agile and tolerating grass, she is disposed to walk on the paths considered in the state of well! She used to hate painful to walk through thick grass, it was very difficult for her. If she bring to the ground she would sit with her hands in the aspect, not wanting to touch the reason and could actually stand from sitting without touching the ground! Quite overpowering. Now, she can stomp along bearish terrain with no problems. She loves core outside.
Links to Our Lives
I indubitably love SnapChat. If you understand or employment this app on your cell phone, you’ll comprehend what I’m talking about. The ~ duct reason why I like it is for the reason that it uses photo and video you be possible to share with others, without making you rescue a photo and clogging up your wile with a large amount of photos. I also love SnapChat because it’s hither and thither being in the moment. I fall short to worry less about saving this photo, or excepting that video, or spending money forward devices that save all the thousands of photos I take. Sometimes it’s okay to bear a fun moment captured, and give leave to it go. Memory. SnapChat is like that.
It’s besides so much fun using all the humorous faces the app has and I be pleased with to make jokes. Life is with greater advantage when you’re laughing! If you are a snapchat user, you be able to follow me @kylakcco.
In May I was asked to exist apart of a promotional video arising from traffic for the Calgary Ronald McDonald House. You may be seized of already caught this on my Facebook boy-servant but I’ll add the step to the video on this blog placard as well. These commercials were made through a Calgary film crew, to exist shown in Calgary Cinemas/ Movie Theatres to forward support for the house. Once the at the beginning commercial was made, the crew gracious. approached me and asked if I would mind doing an interview commercial as a back video for the house. It worked deficient in so well. During one of Bella’s naps I was accomplished to talk with the crew and proportion how this house held me up while I was broken by my daughter’s sanatory needs and hospital stay. As near as it is to share the annoy in our journey for Bella, sharing our fiction means more support for RMH.
Here’s the bond:
Family photo at my dads shed.
Bring on the Best Summer Yet!
I intend my mom saw the upset in my eyes and proper thanked the event coordinator for her time.