+2025 - Skin Rash and Fun Activities

FEBRUARY:  The rash around his bug bites (see photo below) is gone but he still has "bites."  They itch sometimes and are slow to heal.

We are tentatively scheduled to visit the NIH on April 15-17.  Anyone else going to be there?

One huge milestone is that he learned to ride his bike only two minutes after I removed the training wheels:

Michael, the girls, and I are preparing to hike up to Half Dome in Yosemite in June.  David and Jonathan will not go with us but they will participate in all of our preparation.  I started a blog called Hiking to Half Dome which chronicles our hikes and preparation.  Here are a few photos from the blog:

Castle Rock State Park.  David is on the far right.

Castle Rock State Park.

Pinnacles National Monument.  The boys collected the pine cones.

Pinnacles.  These stairs are leading out of the bat caves.
About a 3 mile hike.

Yikes!  A big buck!  Run for your life!

Año Nuevo State Park - Elephant Seals! - 3 mile hike

We took the kids skiing in Utah.  We put them in ski school but 45 minutes into the class David threw up because of altitude sickness.  He and I spent the day at the rental while Michael and the girls skied.  The resort was absolutely wonderful in rescheduling him and re-issuing my lift ticket.  Two days later we all went skiing again and David had a great time!

The backyard of our rental had these fun hills for sledding.

This is the Alpine Coaster at the Park City Resort.

The children worked for three days building this igloo ice castle.

This is Ben, David's ski instructor.  He said David was so quiet.

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After the ski school, David was not ready to go.  He wanted to ski with Michael and the girls.
Go David!

JANUARY:  He acquired some type of bug bite on this back.  He broke out in a rash and we were very worried it was GVHD again.  Before going straight to oral steroids (they really want to avoid steroids because of his past optic nerve swelling) the doctors wanted me to try topical hydrocortisone.  It worked!  The rash is gone.

DECEMBER:  David is doing very well.  He saw the eye doctor on Dec 7 and his eyes look great.  He saw his BMT NP, Karen, on Dec 14 and agrees that he is doing good.  He had his titers repeated and they all look normal.

OTHER WAS NOTES:  The WAS community is so amazing!  There are moms having baby boys even after knowing they are WAS carriers.  These women are stepping out in faith which I deeply admire.  Also, there are other WAS boys who still suffer from GVHD, like our friend Max.  He is a beautiful boy with such a wonderful smile and attitude.  He's parents rock (literally, his father plays in a band for fun) and are a joy to know.  We continue to pray for so many of the WAS boys.