STRONG!

Henley is really doing good! She seems to be maintaining an appropriate neutrophil count with the help of twice weekly shots of GNSF that we give her at home. We're still doing twice weekly lab visits, but so far have been able to do those from our home clinic and then consult with her doctors over the phone about the results. Although her red cells have gone up and down, they haven't dipped low enough to warrant another transfusion!

Last week we all traveled to the University of Minnesota to meet with a genetics counselor and check in with Henley's doctor. The twins were also tested during this visit to see if they are carriers or possibly also have SDS. There is a large spectrum when looking at patients that have SDS and although we don't think they do, we want to make sure.

Henley seems to be growing and developing normally in terms of strength and cognitive abilities. Next week she will be evaluated during an in home visit with some specialists. She isn't even four months old yet and she's strong as can be, rolling over and pushing herself up!

Some very generous women in our small community are planning a benefit for Henley. A flyer below gives some information about the event. They are also selling HEALING HENLEY bracelets.

Leah Rustan made the following post on Facebook:

For anyone wanting to purchase a Healing Henley wristband that is not local to the New England area...Cost is $5.00 per wristband. Checks can be made out to Kyle, Jess, or Henley Johnson. All profits will be given directly to the family. I will mail wristbands to the return address on the envelope unless otherwise noted. Please send payment to:  

Leah Rustan

1014 4th Ave W

Dickinson, ND 58601

Thanks so much for your support! Feel free to message me with any questions on getting your wristband