I’m thrilled that the MLD Foundation has set this up for us. For those of us who are computer challenged and had difficultly setting up a caring bridge site this offers us a place to share our journey with everyone. So much goes on with us on a weekly basis and sometimes daily it’s so hard to keep everyone informed. This will be perfect!!!
Today is Danielle’s 3rd day of school. So far so good!!! From what I’m told she is sleeping through most of the 2 1/2 hours she is there. That’s ok Danielle, mommy feels the same way about school….lol!!! I am told Danielle has a leukodystrophy buddy in school. I believe Krabbe. I’d love to meet that child but as everyone knows HIPPA stops a lot of things these days. So unless the parents HAPPEN to run into one other……..
Our challenges at the moment are still the vomitting and retching Danielle is experiencing. This has been going on for almost 9 months. We’ve tried med after med after med. But nothing works for a long period of time. Last week she had another ultrasound of her gallbladder/liver and thankfully nothing has really changed since lasts Feb. She still has a gallstone and lots of sludge but it’s still in a position they don’t think is causing the vomitting. She is now on a med called Ursodiol, it’s suppose to help break up the sludge and gallstone. We’ll see. Until then she’ll go through 3-4 episodes of vomitting and retching a day. Absolutely horrible. To see her have to go through this every day so many times a day for months……and no one can tell me why. Yet through it all she still manages to smile every now and then. She still has the best personality ever!!!!
I am blessed to have such a terrible yet beautiful experience with Danielle. I’m thankful everyday for her and the things she has taught me and for Anthony being three. Who would have thought having a normal three year old is just the perfect medicine.
Thanks for checking in on Danielle today!
With love,
Megan