Emma

Welcome to Emma's Web Page. Emma was diagnosed with MLD on December 30, 2003. After 3 weeks of testing, she was admitted as an inpatient to Duke University Medical Center on February 9, 2004. Emma had her transplant on February 19, 2004. Emma became an outpatient in late March. She returned to California on June 11, 2004.

This page is designed to keep our friends and family updated on Emma's progress.

For information on donating toward the numerous extra expenses incurred, please see the link to Emma's Foundation located near the bottom of this page.

Please feel free to sign the guestbook often. We would all love to hear from you!

Also, check out Emma's smile quilt at: http://smilequilt.com/emma.html

Journal

Monday, October 6, 2008 6:10 PM CDT

OK - the longer we go without updating the more there is to update, so here it goes!

Emma turned 13 on July 3. She is very excited to be a teenager! She began 7th grade this fall. She has the same teacher as last year, Mrs. Fox, and the same aide as last year, Mrs. Offee. They are both wonderful & we're thankful to have both of them in Emma's life! Emma continues with her therapies with many of the same therapists - some at school & some outside of school.

The botox didn't seem to work so well for Emma. It weakened her leg muscles (which really is what it is supposed to do initially), but hasn't seemed to get back to where she was pre-botox. Usually, you'll see a dip in abilities, then recovery & the hope is that the end result is better than where you started. It can be a dosage issue, but that is still to be determined. We have exercises to do with Emma to help her alignment & also to help her build her core strength. Though she often has to work hard during these exercises, she still loves the one on one attention. As we're told the MRI is still stable, we're just trying to figure out what we need to do to keep Emma's abilities stable, too. As she's put on some weight, it is a little bit harder for her to get around. We do have some video comparisons over the years, since transplant (Feb. 04).

We have a call scheduled this Friday for "Team Emma" to talk about her current state and what we can do to best assist her. Dr. Kurtzberg and Dr. Escolar will both be on the phone, as well as Emma's local physical and occupational therapists, and her teachers and aide. As some decisions need to be made regarding puberty, which likely isn't too far off, we want to do a 6 month push - to have her at her optimal health- before making any decisions. We do plan to have her get a g-tube. Dr. K has been clear that this is not because she is getting worse. Emma takes a very long time to both eat & drink. We know she is not getting optimal nutrition, calories, nor fluids at this time. The g-tube should allow her to get what she needs and allow her to get stronger. It will be used to supplement her regular food & drink intake.

Greg thought of putting this call together so that everyone is on the same page, knows where Emma is currently at, and our goals for the next 6 months. I'm sure it will be a very informative call for all involved.

Emma is also scheduled to see a pediatric endocrinologist in November. She hasn't grown much since transplant, so we'll figure out, with that doctor's help, whether Emma needs to be on growth hormone supplements or what.

Emma is happy to be back in school with her classmates. She had a couple of familiar classmates returning from last year. Emma also had a good summer. She again went to Camp Okizu for a week. We also took Emma and her sisters back to Minnesota again for about 10 days. We stayed with my aunt & uncle, who took wonderful care of us! The girls fished a lot and enjoyed going out on the boats. Emma caught a lot of fish! We were also able to see many more of my relatives at another party. When we were back in the Twin Cities, we went to the Mall of America for 2 days. Emma found a pink Roxy purse she just loves! She went on some of the rides in the amusement park in the mall, too.

There's a small update on the past few months. I'll try to update again next week, after the call.

Thanks for checking on Emma. Sign the guestbook if you have a chance. =)

Erin

Hospital Information:

Formerly: Duke Pediatric Bone Marrow and Stem Cell Transplant

Links:

E-mail Author: family@EmmasFoundation.org