September 1, 2012
Hi, Everyone! Thanks for checking in...
It's been awhile since my mom updated, so I asked if I could do it this time.
I am 12 years old now- I am done with 5th grade, and now in middle school. I love math, but I do NOT like gym and science.
This July, I went to a sleep-away camp for the first time with my friend Maddy, who has Hurler Syndrome. It was called Camp Korey, near Seattle. It was so fun; I wish I could go again next year!
I am 4'8" now! I had surgery last fall to lengthen my left tibial tendon and remove the staples in my knees. I might get botox injections in my muscles to help in between surgeries, as my tendons aren't growing with my tibial muscle. (This was a result of a bruise my brian suffered way back when I got a VP shunt put in as a baby.)My knees are now pretty much aligned. I am still using a walker for my balance, and I continue to go to Speech, Occupational and Physical therapies.
I also go swimming 3 days week for exercise. My big record is 36 laps! I have been working with my personal trainer, Heidi, 3 days a week, to stay strong.
I got an ipod touch for my 12th birthday. I really like music and all the apps. I am taking voice lessons, and love to sing- I tried out for the choir at school this year, and I made it!
I love the Food Network, and am taking cooking classes at Jr. Chef's Academy. I still like "Barney and Friends" and I watch Disney Channel a lot, too.
I enjoy emailing, texting, and skyping my family and friends. I can also do facetime on my ipod! We went to visit friends in Cleveland, Ohio this summer, and I met a girl named Natalia. She has Hurlers and also went to Duke for her transplant. We swam together at their local pool.
I am 11 years post- transplant, and doing well. This year for my annual check up at Duke, I had a sleep study done to make sure my breathing is good. Unfortunately, they told me I have sleep apnea. We are going to follow up with doctors in Chicago about this. Otherwise, reports came back good- I am 100% engrafted, and all my bloodwork is perfect. I might try an FM system at school for a slight hearing loss in my left ear. I'm going to get braces soon, too!
Thanks for checking in on me. I love you!
11/17/2022 07:46:10 pm
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