It's been a whirlwind of activity, big changes and lots of learning since the last time I wrote an update on our family. I can't believe I've neglected our blog for over a YEAR. However, that should tell you that life has been more than a little busy. Update on the kids Both of the kids are doing well. Hudsyn continues to battle seizure activity. We had zero seizures for almost a year exactly. Then, unbeknownst to us the manufacturer of her KetoCal (the special formula she has to have for her ketogenic diet) was changed. The powder all of a sudden had a vanilla flavoring added to it and after many weeks of narrowing down causes, we figured out this was the only thing that had truly changed in her routine. We immediately asked to be put back on the non-flavored powder and were told they didn't make it anymore. BUT...they did make it in a liquid. Once the new order arrived, we learned just how much easier the liquid was than the powder...no more measuring/weighing and adding water was a CINCH compared to the shaking and clotting that kept happening before. A win-win! We're happy to report she's still off all seizure drugs/medications.
Since being on the new/former formula, her seizure activity has decreased again. We aren't back to the zero days, but I believe we'll get there again eventually. We'd like to get Hudsyn back to Panama for a third round of stem cell therapy. Obviously this comes at a high cost ($15,000 for the treatment plus travel costs out of the States for a week), so we've partnered with BonfireFunds.com again to offer some awesome new t-shirts...just in time for Christmas! Be sure to get yours ordered today as they're available for a limited time: https://www.bonfirefunds.com/hope-for-hudsyn-1
Miss H goes to school four days a week at a public preschool (photo taken above in her specially ordered desk where she sits eye level with all her peers). She rides the bus each day with an aide and LOVES her teachers/therapists and friends there. We're constantly getting hand-made drawings and craft items from her friends saying how much they adore her. Makes me teary every time I see how well those kiddos accept her. I wish she could stay in the 3-5 year old room forever;)
Damek - Mr. Twelve (as we like to call him) is flourishing. He's loud, he's busy and he's such a BOY. Seriously, no one told me how boys were going to be...and to have one that's not only typical but full of energy and blatant defiance...some days I wonder how we manage it all!
Some of his favorite things right now are sweet potatoes & tater tots; being chased around the house; playing outside as much as possible (even in the cold); trucks and anything that resembles an electronic device (remote controls; computers; cell phones and key fobs). The boy is obsessed with carrying that stuff around and then hiding them where you can't find them. He hates anything that's really cold (ice cream; frozen stuff; snow; etc). HATES bananas....as in he sees one and runs the other way. And although he is demanding, he's the best little brother a girl could ask for. He's constantly running over to Hudsyn, giving her a kiss or patting her chest to help calm her down when upset.
He's our little man and we love him so much. We've watched him walk, run, play, dance and attempt singing this year. Such a dichotomy to Hudsyn's development, but we love and respect each of their journeys equally.
Our 3rd Baby: My Business The absence of my writing hasn't been because I haven't wanted to update you all. On the contrary, I just haven't had the time. I can officially say I have a highly successful financial planning practice that serves a variety of clients, many of whom have special needs kiddos like ours. In fact, I've been awarded several honors this year that beyond just helping clients (which I adore) have validated why I changed careers last year. I'm in the top 15% of my peer group nationally for what I do...and have been named the top new financial representative in our network office (KS/MO) this year. I'm so thankful for the crowd of mentors, joint-work partners and training Northwestern Mutual has provided me both locally and nationally.
Becoming an Advocate On top of these events, I've also started volunteering again. Through the original parent support groups I found on Facebook, I've joined a large network of moms and dads who are trying to gain more awareness, support and education for HIE babies and kids by creating an international non-profit called Hope for HIE. HIE is Hudsyn's original diagnosis if you don't remember...it stands for Hypoxic Ischemic Encephalopathy. In short, it means oxygen deprivation of the head. Please help us find other parents (like Dan & I) who didn't know where to turn and didn't get any direction on where to go those first few years. Donate, volunteer or simply forward this website to someone you may know facing the same situation with their new baby: http://www.HopeforHIE.org.
I've also started volunteering more at Children's Mercy Hospital on the Family Advisory Board and as a Parent Mentor to other parents facing an HIE diagnosis locally. It was a way for me to give back to the place that quite literally saved Hudsyn's life early on and has continued to be a place for her development to flourish.
From our family to yours - we wish you a Merry Christmas and a Happy New Year! May this season be filled with just as many blessings as we've had this year!