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Another milestone! Another 100 days added to our tally.  Almost 7 months post transplant and here we are. Madelynn is non stop talking and moving. Her PICC line is out, our daily med count is significantly down and we only visit the hospital every two weeks.  Most amazingly is Madelynn herself. She’s happy and I mean really happy, when she isn’t having a tantrum of course. She’s come into her own! When I look at her I’m in total awe of this amazing kid and to be honest in shock that things have changed for the better. When you’re living in perpetual fear the great moments can sometimes pass you by, but I’m happy to say that while we still have a ways to go I’m finally able to enjoy these moments.  Oh and guess who’s going to nursery school in September!  Here’s to the next milestone and to our amazing team @sickkidsvs @sickkidstoronto. 
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#sickkidsvs #bonemarrowtransplant #raredisease #amazingkid #parenting #toddlerlife #milestones
We did it! She did it! We officially made it 100 days post bone marrow transplant!  Today is a big day. I’ve thought about this day and how I would feel and now that it’s here I am still not really sure. I’m beyond proud and in awe of my little girl. She is growing taller, talking, eating and thriving and I’m so grateful. She doesn’t sit down for a second. She has a wicked sense of humour and she’s super smart. She shows patience and sits still when I have to do her daily line care. She takes so many meds a day and doesn’t give us a hard time. You amaze me.  I’m enjoying doing so many little things with her, things we missed out on early on, and developing a bond closer than I could have imagined.  To my sweet lady Happy Day 100!!  #sickkids #sickkidstoronto #bonemarrowtransplant #day100 #kickbutt #daughter #proudmom #blogger #toronto #girls #newbeginnings
KIDS: I have written and rewritten this about a dozen times. I’ve been MIA lately and with family day upon us I thought I would give an update. Mostly trying to digest the year that was 2020 but also what awaited us in 2021.  Becoming a mom was one of the greatest things but I was not and am not still fully able to digest what my life has become. Madelynn the love of my life has a rare genetic mutation causing what’s called an immune disregulation. How rare? So far only 7 cases recorded worldwide.  Spending the first 3 months of her life @sickkidstoronto was rough, not having a diagnosis for 7 months was tough, but seeing this amazing tough opinionated 22 month old little lady blossom and continue to have medical issue after medical setback, yet smile and laugh on the daily, has been devastating.  Having a rare medical condition means there really isn’t a reference for anything you’re facing. You quite literally are the first. This means speciality after speciality weighing in. It means lots of doctors, opinions and tests. It means keeping everything and everyone straight while trying to keep everyone on the same page. It’s having to think quickly, remember numbers, and past results and continue to ask questions and challenge the advice being given. And worst of all it’s watching your child be poked for blood, IV starts, joint injections and daily medications and not be able to do a thing about it. Parenting a @sickkidstoronto child is like no other kind of parenting.  Here’s what I know for sure, I would be a crying ball in the corner if it wasn’t for the love and support I am given on a daily basis. I get out of bed and keep going, mostly exhausted because of my little girl. If she can keep smiling then you better be damn sure I can too.  I’ve been quiet about her health and our struggles as a family mostly because so much changes day to day but also it’s too painful to actually stop and think about.  I’m grateful for many things but mostly for our amazing and collaborative docs @sickkidstoronto. With all my heart I know everything is going to be OK #grateful #sickkids #littlelady
Truth! When I came upon this quote I thought it perfectly summed up our little girl!
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When I was pregnant my dad always told me that kids were resilient but I had no idea how right he would be or how much I would need to hear that. After an early battle we had been on a really good path with Madelynn’s health and while I knew bumps would happen I did not expect it to happen so quickly and feel so devastating.  While things are hopefully turning a corner and I hope they stay that way here’s what I learned: my kid is amazing! She’s tougher and stronger then I will ever be and I couldn’t be prouder.  And the chalk drawings.. one of the amazing things about my neighbourhood are companies like @davisville.chalkgrams. 20% of their proceeds go to @sickkidstoronto and they rock! #supportlocal #grateful #girlmom

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