Here are some highlights and lowlights...

My mother came out for Julie's spring break in April. She was a great help and lots of fun.

In May, Julie got a pixie haircut! It was so much more comfortable for the hot weather.

My father came to visit in May. It was great to see him. He enjoyed watching Julie on the trampoline he gave her for her birthday in November.

Julie had a fabulous summer at The Frazer Center here in Atlanta. She loved spending time with other children and had the opportunity for lots of running around inside when it was too hot to go out. She played in the therapy room every day, made a little friend (Jasmine) and overturned the frog aquarium. Of course, she made many adult friends! It was a much better summer than last year when we were stuck at home all day, every day. She will go this summer as well.

Julie stayed with her grandmother, Babu, for a few days and nights in July while the rest of us went to Chicago to visit Uncle Bjorn for Alex's special birthday trip. It was a big deal for me to get on a plane and leave her behind. Of course, everything went well because my mother is an exceptionally competent and loving grandmother.

Julie was diagnosed with precocious puberty in July. The real deal. At 7. In October, she received an implant (Supprelin LA) to reverse and suppress puberty. "SUPPRELIN LA is a small, thin, flexible tube made of the same material as a soft contact lens that is placed just under the skin of your child’s inner upper arm. For a full year, SUPPRELIN LA continuously releases a steady flow of medicine (known as histrelin). SUPPRELIN LA lowers sex hormone levels and keeps them down for one full year."  It's the size of an inchworm! We were at the hospital for about 8 hours for a 10 minute minor procedure (ugh) and she vomited on the way home and TONS at home. It was a pretty rough day. She will be able to have it replaced a few times but at some point the risk of early and severe osteoporosis will be too high and she will have to go through puberty. The total bill was close to $20,000 for the implant, surgeon and hospital fees. It cost us only $30 with our insurance. We are so grateful to Agnes Scott College for providing such excellent health insurance for their employees.

Julie's class moved downstairs when school restarted in August in part to accommodate Julie's difficulty going up stairs. It's a much better situation (dedicated bathroom and near the playground.) She has the same teacher team as the year before and everything seems to be going well.

Julie stayed at our house with her caregiver, Kae, for two nights in September while the rest of us went up to a cabin in North Georgia. It was a big deal for me to leave Julie with someone other than Babu. Kae is great with Julie and the trip was a success. 

(Alex went back to public school about 6 weeks into the school year after we decided that the cyber academy was not for us.)

Julie's beloved geneticist died unexpectedly in September. A great loss for us and our community.

The Make-A-Wish foundation redecorated Julie's room at the end of October. She has a new TV, TV cabinet, bed, trundle bed, valances, wall stickers. It's beautiful!

Julie's dentist found 5 (?) cavities in November. She had to go back to get them filled so she had IV sedation twice in the same month! Her recovery period was very long after the sedation but at least she didn't vomit everywhere like she did after general anesthesia.

On Julie's birthday, our whole family went to the Georgia Aquarium for an MPS Family Meeting. We had a nice lunch (where Hal and I pioneered a new system for feeding Julie) and a lovely afternoon checking out the largest aquarium in the world. And it was free!

Our whole family traveled to San Antonio for Thanksgiving. It was our first trip with Julie in 2 years! My mom (with the help of some friends) retrofitted her family room to create the perfect Julie paradise. We spent lots of time with my entire family. It was a great success and we are hoping to go back soon.

Julie sprained her ankle in December just as she was getting on the school bus to come home at the end of the day. X-rays showed no break that evening but it was very swollen for over a week and she was quite pathetic. She did learn to tolerate an ice pack.

Overall, her stamina is reduced. She still enjoys her trampoline but no longer is able to go on the same walks without getting tired. She is more placid than she used to be and is happy most of the time. She really enjoys eating, playing in the bathtub, watching TV, tickle games, clapping games and chewing on everything. You will all be happy to hear that she is still trying to pull Hal's ears off.

We are going to stay in our house as long as possible even though it isn't ideal. We have wonderful neighbors (4 girls from 3 different families are over hanging out with Alex as I type) and we have decided that more space isn't as important as community. 

Thanks for checking in on Julie! Happy New Year!