Never Stop Learning

Never Stop Learning - it's a great philosophy to use in life and we are learning to apply it everyday to our journey with Henley. 

Boston was very educational, despite how prepared and knowledgeable we think we are about SDS. Their doctors were wonderful and impressive. The trip really surpassed our expectations. There were several pieces of information we felt were extremely valuable and made the trip very worthwhile. One of those was learning that only low resolution HLA testing has been completed on Henley thus far. We thought that in order to do the high resolution testing, a large blood draw was necessary. We learned that isn't true. A swab can still produce high resolution test results - so we did that! Kyle and I were also tested, which had not previously been done.

Boston is on the same page as Minnesota - in terms of timeline to transplant. We are still thinking in the next 3 to 6 months it will be appropriate and necessary to move forward if a match can be identified. What Kyle and I are unsure about is, where we will do transplant. There are some factors about Boston and their expertise in SDS that make that location very appealing. This is something that we will continue to pray about and think about as we try to make the best decision for Henley and our family.

Kyle and I made time to go out for a nice quiet supper - Henley was kind enough to sleep through the whole thing. We went before the supper rush, plus it was a Monday night - so the place was fairly quiet. It was so nice to have a date night.

Henley's milestones - she's hit the 1 percentile for growth!!! She loves to play peak a boo and stand on her head in downward dog position. She is so mobile! Scooting around everywhere. It makes a person crazy when they are constantly concerned about germs!

Monday Henley will have her blood levels checked, it's amazing to think we are almost 1 month from her last transfusion again! We are so grateful. We will also do a weight check with her pediatrician. Her GI meds have been adjusted and we are hoping to have some greater numbers on the scale!