Bryleigh is here in Pittsburgh all week long for testing and also to go to the MLD Family Conference... And to go to a Pirates game on Sunday! We had a really great time getting here yesterday. Our friend Craig picked us up at 7:00 AM and we didnt arrive at the hotel until 9:00 PM! Even with the time difference, thats still 13 hours of travel time for Bryleigh... So we set a new record for her with the help of American Airlines and the Gremlins that must have gotten after our plane. Got a nice surprise at Hertz when we got there when we got a monster upgrade... We couldnt fit in the Ferrari(we travel with a bunch of stuff), but we settled on the Suburban by Chevrolet. Kinds sounds like Bryleigh is doing endorsements, doesnt it? Through all of that time we had such a good little girl... She s really getting good at traveling! Even Brixton, who cannot sit still was very well behaved and a big help along the way. It seemed for a minute that everything was going wrong, but we had to remind ourselves that it could be worse... Our kids were awesome and the plane didnt go down in a blaze of glory. You always have to remind yourself that it could be worse. Today so far, Bryleigh has already had a barrage of hearing and physical tests and she is now under for an MRI and a hip x-ray. She hasnt been able to have anything except apple juice today, and has done surprisingly well. Many of the tests yielded better scores than she received last year. We feel fortunate to have her doing so well at a point where many MLD kids are having so much trouble. It hasnt been easy, but it could always be worse. From here we are going to be attending the MLD Family Conference, where we will meet many other MLD families from around the world. We will also hear from doctors, scientists, and other people that are involved in the MLD community. We also look forward to bringing more awareness to the MLD Family Compassion Fund, which you guys helped us fund in conjunction with the MLD Foundation and others. We hope to use it as the major vehicle to provide support for families affected by MLD. Stay tuned for more updates on our Pittsburgh adventure!
Posted on: Wed, 16 Jul 2014 18:00:49 +0000
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