A Note on Our Recent Newsletter Pause

We recently encountered a technical issue with our blog feed, which temporarily halted the distribution of our newsletter. This interruption was unforeseen, and we sincerely apologize for any inconvenience it may have caused.

We are grateful for your understanding and patience as we worked diligently to resolve this issue. We are pleased to inform you that the problem has been fixed, and our newsletter will resume its regular schedule. Thank you for your continued support and engagement.

Catch Up on Our Latest Posts

2/5 Kylie

2/5 Kylie

Well, after speaking with transplant team and no improvement in Kylie’s oxygen needs. We are heading to Children’s National in DC by ambulance to see if their transplant team can figure out what is going on with Kylie. The fear Is this Is related to her rejection. If...

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9/17 Update on Brynn

From Tiffany Burk about Brynn: “We went to see her endocrinologist this morning to check the growth hormones. We found out that she has grown 2 inches since May. PTL!!!! (That's 1/2 an inch a month!) He's happy with her progress and frankly so are we. We will have...

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9/5 Update on Steve Hayes

Steve Update from Kim: “Steve is doing really well in Abilene; making lots of progress! He has been successfully off the ventilator since early last week. They have started the process of removing the trach. Today, they replaced the cannula with a smaller one. He is...

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