Haley’s Giggle

June 26, 2012: Haley Turns Six!!

June 25th, 2012

hi everyone! this is haley. i haven’t been writing so often because i’ve been so busy! first of all, i had the best school year ever! all my friends are fun and nice and we all play. i had 17 other kids in my class and all of them i like. and my teachers are so wonderful, my parents say they walked right out of a fairy tale and into my classroom. i learned so much, and i grew so much, and even though now it’s summer and i’m in camp and at the pool and having so much fun with anna and my friends, i can’t wait for school to start again! speaking of camp, i get to go to a regular camp this year because i’m potty trained (i wasn’t last summer, because of all my tummy problems, but i worked really really really hard and my parents were very patient and anna was the best cheerleader and we did it!). i am do really well with my orthotics– they help my legs grow straight, and help me run and twirl without falling down.

I still go to Jaye, best PT ever, to help me walk straighter and straighter, and Jaye says i’m getting better all the time. I also now to go Hilary, best OT ever. she’s from South Africa and is very bright and bubbly and makes me do lots of very adventurous things in order to help me with my handwriting and letter-forming. she’s so much fun, i love going to OT. the latest news is that i got glasses! they’re purple and pink with butterflies on the sides, and it’s to help me see because i’m farsighted in one eye. i heard that another kid who used to have CAMT also is farsighted in one eye. i wonder if there are more out there. best eye doctor ever Dr. “Vike” has a special chair that only goes up when i press my nose. i like going to him, he’s a lot of fun. plus mommy and i go to cupcakes store nearby. sometimes i’ll eat it sometimes i won’t. speaking of food, i am now eating chicken! well, chicken nuggets, but that’s a new food! and i’m eating almonds. this summer we’re working on yogurt and fruit and veggies. i’m trying though nothing really tastes good to me still.
well i should go now. tomorrow is a very fun-filled day at camp, then grammy and gramps come with a strawberry shortcake and a balloon, grammy’s annual tradition. also, mommy wants me to tell you that she’ll be writing more and more coming soon so you should stay tuned. bye everyone!

March 15, 2012: Happy 5th Anniversary Haley!!!

March 15th, 2012

It’s almost a year since we last posted and so much has happened that more posts will be coming soon. But wow what a year and wow what a girl! she’s been through every test and testing imaginable. She has started occupational therapy, with a therapist just as good as Jaye her fantastic PT. She also now wears orthotics, which Jaye already has noted has made her legs grow a bit straighter (they at the moment cave in a bit at the knee). Her bloodwork is great– her iron is back to normal, as is her vitamin D. we go back for a second round of tests in May. She’s finally able immune-wise to start her vaccination regimen. She’s also expanded her diet to include chicken nuggets. we’re slowly adding yogurt (though she’s slightly allergic to milk, her allergy to it is getting more miniscule by the minute). She still loves purple, but also pink and now yellow. She loves to play Just Dance and loves Winnie the Pooh and the Swedish Chef. She’s the luckiest girl to have a sister like Anna who treats her like any normal kid, doesn’t have her kid gloves on unless Haley is really upset.

We are very lucky and we show our gratitude every day, today in particulary, to Hiltrud her donor and all the doctors, nurses, technicians, therapists, family and friends who has gotten Haley to where she is now.

Haley: Book II

May 10th, 2011

This past round of check-ups at Sloan Kettering were quite positive: 1% in height, and 2% in weight. Haley’s just on the growth chart, but it still counts, which means no need to contemplate a feeding tube again.  Her bloodwork is stellarly normal, with a bit but only a bit more help with her Vitamin D levels (her levels have always low– the Tacrolimus she was on to prevent her bone marrow from being rejected gave her a higher risk of skin cancer, so we kept her out of the sun most of these past few years).  Her EEG was also particularly strong.  Haley still has many issues since her bone marrow transplant– allergies, constant diarrhea, and inturning of her toes and feet making it hard to walk, jump, run and balance.  And her latest symptom– burning sensation in her fingertips– has made us realize that though she is cured, she’s still a ways to go.  Her path out of old conditions is still unclear, and the new latent complications from the chemo regimen she was on — a phenomenon called “late effects”– make that path even more uncertain. We’re working hard to tackle these things as they come, amassing an impressive entourage of specialists including a neurologist, dermatologist, and endocrinologist.  As the parent, you feel like you’ve been on a marathon, and when you reach 26.2 miles, you then only find out that the end isn’t there, but rather 100 miles further down. It’s a daunting because there’s less familiarity with the complications– every kid responds differently to the chemo and other drugs and it’s impossible even if two kids had the same exact regimen, how they will do.

We’d like to all resume our daily normal lives, but we’re realizing finally that such is not the plan for us, not yet anyway.

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