Wednesday, September 30, 2009

Back to School

Emily is back to school full time. We realized that she had not gone to a full week of school since probably last November.

Full days are long, and she still runs out of energy by the end of the day, but she is doing really well, working hard, and keeping up. She is in AP/Honors everything, and has a very challenging schedule.

She has gone back to coaching with the Gators swim team this fall and enjoys working with the kids. She is an editor/contributor to the school paper, and is starting up on the Quiz Bowl team again.

Last week brought a trip back to Boston. The photo is from Children's Hospital Transplant Picnic at Kimball Farms in Westford, MA. Unfortunately I was unable to get any pictures of her soaking the doctors/friends from CHB with her bumper boat, although she was quite good at it. It was a beautiful fall day and lots of fun. I was amazed at the number of energetic young kids running around wearing stickers that said, "Liver Recipient" or "Heart Recipient." These transplant kids are miracles.

We recalled that last year at this time we had gone to CHB and met Dr. Blume for the first time. We expected to be sent away with, "She is not sick enough to transplant." But alas.

Everything checked out well at clinic. It is good to have the medical condition be almost a footnote.


Friday, September 11, 2009

Labor Day

After sharing Labor Day with the same friends at Center Lake in Beckett, MA for 22 years, we weren't going to break tradition this year. We stayed overnight at Cindy and Fred's lovely camp and enjoyed the best weekend of weather all summer. We went swimming and sat around a lot, making the kids deliver beer via kayak to the adults on the raft. The kids went kayaking and canoeing, and Fred took them all for tube rides. The tubing was a good test of Dr. Emani's surgical skills. She caught some big air and came crashing down. Nothing came loose so he must have done a good job.

This picture shows her new high fashion haircut, but of course she just came out of the water here. We'll have to find one when she's dry and styled.

The adults moved to shore and continued their inane conversations. At one point we insisted that anyone who sit with us could not say anything that sounded smart or provoked any thoughtfulness. A few hours of that can purge the mind and move one a few steps toward true enlightenment--at least nobody was driving.

The kids played board games and after dark sardines--hide and seek where once somebody finds a kid they hide with the original kid who's "it" until they are all hiding together and trying not to giggle. Emily was the oldest in the group, which is pretty interesting because I remember when she was the youngest. All the formerly oldest kids are off to school or adult life.

The next day we did some more swimming and sitting around. Emily was the one who had to show the other kids how to free a bluegill sunfish from a fish hook, as shown below.

She started school yesterday and has now had all her classes. A little stress yesterday with her AP Chemistry teacher (second year of chemistry), who had no large print materials for her and seemed resistant to helping. Her heart transplant did nothing to fix her other medical problems, and the low vision makes it impossible for her to learn from regular books and materials. Although the law requires the teachers to provide her with the tools she needs, we have found a very wide range in enthusiasm for compliance. With the help of her guidance counselor and other support people we elected not to fight an unsympathetic teacher all year and she moved to Physics today, where the teacher is hard but fair. Her other teachers seem great, and we are looking forward to a year that goes a bit smoother than last year.

Looking back from today, 9/11/09, I am first reminded of 9/11/01, when I was in Manhattan and saw the iconic Twin Towers crumble into rubble from a too-close vantage point in Midtown. I feel for the families of those innocent victims.

As I look back on our own last year I remember sending Jeff off to college as a freshman, worrying if he will succeed, and if he will have a good time, like I did in college. We were reeling from the news from Dr. Maron that we should make an appointment to see the team at Children's about a heart transplant, "just in case." Fortunately Jeff did great without parental input, because our focus left him for the year. We were deep in denial. Emily seemed tired a lot but otherwise ok. We made an appointment for October and began reading about transplants on line. Very scary stuff--much of it old, made us view a transplant as a desperate act that might prolong death. However, some of the new stuff made it sound like a transforming procedure that let somebody lead a normal life and could reset their life's clock. We had a lot to learn.

Friday, September 4, 2009

She's a Junior!

After a heart transplant only 7 months ago, and missing 88 days of school, today Emily is finally caught up on all the work for 10th grade. I remember last fall listening to Dr. Blume with some doubt when she said most of their transplant kids manage to stay at grade level and graduate with their class. Well, Emily had some awesome tutors, and a lot of support from her school, but mainly she worked really hard and did all the work to catch up. She has a little pre-reading for AP courses for the fall to finish next week (as do some of her classmates I imagine), but she should be able to start Junior year right on track with everyone else.

Emily had a great time in Chicago. Thanks again to Jamie & Rob, Rick and Bonnie and Susie & Jon for a great trip.

On the medical front, she has had to have blood tests about weekly and several changes in her meds to try to get her white count up a little. Although her immune system needs to be continuously suppressed to avoid rejection, it is a delicate balance with the meds to keep everything at the right level and not leave her too prone to infection (especially as she gets ready to head back to that germ-fest of a school).

We are going to Beckett, MA this weekend to catch up with some Colgate friends. Hopefully Kath will get a good photo of Em's new haircut, and we'll show you later. All of us out east here are supposed to have a beautiful holiday weekend. Enjoy.

Good luck with back to school everybody! Wash Your Hands!