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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
Friday, June 13, 2008 3:46 PM CDT
GREAT NEWS!!!
Emma's MLD has not progressed! Yeah!
We finished up at UNC on Wednesday morning, then headed back to Duke for Emma's MRI. She did a great job, needed no sedation, and finished about 35 minutes after we went in. Greg was shocked, as it usually takes much longer.
We loaded Emma up on liquids before heading to her blood draw after lunch on Wednesday. She also did a great job there. They had no problems getting her blood, which they usually do.
After the blood draw, we headed to the 5200, where Emma saw her primary nurse Jennifer, and where we met Sam Spraggins and his parents Rick and Jolene. I think it was great for them to see Emma and how well she's doing. We walked around the unit a bit. Emma remembered the halls, the rooms, and playing basketball in the halls.
We kept Emma up late on Wednesday night since she was supposed to sleep during her Thursday morning tests. She was pretty tired when she got up on Thursday. She did a good job during her Baer/Vep and EEG. She didn't fall asleep and they didn't give her any sedation, but they were able to get what they needed from the tests. We left the hospital at about 1:00 to get lunch. Emma didn't quite seem herself when we got to the restaurant, then she threw up! We got our food to go and headed to the apartment so she could rest a bit before seeing Dr. K in the afternoon. We got to the apartment and she threw up again. She was able to keep down a couple hydrocortisone pills and she laid down for a bit. We weren't able to reschedule with Dr. K, so we had to get her up in time for our 3:30 appointment. We got to the appointment. Emma was pretty miserable. After sitting there a few minutes, Emma threw up there, too. We had a nice conversation with Dr. K, then headed back to the apartment. Emma threw up once more. We gave her 4 hydrocortisone pills at about 7:15 and she headed to bed. She woke up this morning a different kid - she was joking and happy again. Whew!
Dr. K had good things to say --
Emma's MRI is unchanged.
She didn't have all blood tests back, but most looked great. There was a screening for growth hormone that showed she needed further testing, so we'll have to find a pediatric endocrinologist back home.
She had concerns about Emma's scoliosis, but felt that it's still at a manageable stage. With p/t, some of the scoliosis could be fixed. If not, she could need surgery in the future. However, then she likely wouldn't grow.
She "fell off" the growth chart during this visit. She had previously been hovering at the 5% range. Further testing with her growth hormone will help decide what future steps are needed.
They measured Emma's bone age by looking at the x-ray on her hand. Her bone age is under 8 years old, which is good. That means that she has more time to grow. Emma is currently about 4'5". If she were to continue the same trending (at the 5%, with growth hormone if needed, or something else), she may end up at about 5'1".
We brought up the fact that Emma doesn't have much liquid during the day. Dr. K said that Emma needs to aim for about 40 ozs of liquid per day - 30 at a bare minimum. Her low levels of fluid could be contributing to her fatigue, etc. Dr. K said that we should again give some thought to a g-tube for Emma. She said that it is not a negative thing, it does not mean that she's doing worse, etc. She said that it could make things better for Emma by supplementing her meals and liquid intake. It could also make it easier for the two households by increasing the speed of her intake, while ensuring she has proper nutrition.
A common theme, also mentioned by Dr. K, is that Emma needs to keep moving and do more on her own. We need to help her talk through the gross motor planning and assist her at the beginning sometimes (as her planning and initiation skills are lacking), and stay nearby so she is safe, but she needs to do more for herself to help build her skills and her confidence.
We told her that the cheer was on a hiatus and asked about continuing. She said she should definitely do it. She said we need to be creative in keeping her moving & that one therapy session per day isn't going to be enough. We need to get her back & core strengthened and may want to try theratogs (she has tried a version of these before, but we may try the full body version).
We discussed puberty briefly. Emma's hormones don't show that she's starting puberty yet, which is good. We're going to have a future phone conversation with Dr. K and Sam to discuss possible next steps.
Overall, it was a great conversation. We were very pleased to hear that the MLD had not progressed and that Emma's walking challenges can be improved with therapy and intervention.
Emma had an eye appointment this morning. We were there for about 3 hours. Things seem generally unchanged. The doctor suggested that Emma didn't need prescription glasses, but rather just needed non-prescription sunglasses when outside. She said we should be spending $20 rather than $200. Sounds like a plan. =)
We're headed home tomorrow afternoon.
Erin, Greg, & Emma
Read Journal History
Hospital Information: Formerly: Duke Pediatric Bone Marrow and Stem Cell Transplant
Links: http://www.MLDfoundation.org Good site for MLD information
http://www.EmmasFoundation.org Emma's MLD Foundation
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