Wow…Hard to believe we are nearing the end of May! It’s been almost 9 months since transplant! We thank God for this season of rejoicing and living in a way with Ela we never were able to before. Such wonder and gratitude still accompany each little thing she does that we know wouldn’t have been a reality without her new heart.

Things like going to places that required a mobility device to get around before and now she can walk some of those longer distances a little better with pink cheeks and energy in her step. Or something like the freedom to walk/run/do during the day instead of being hooked up to her feeds and wearing a feed backpack for hours. And now, seeing her enjoy food by mouth to a degree in which she has never been able to before in her whole 5 years of life! Thankfully, now she is able to walk stairs independently too! Since her last setback with sepsis back in January and February, she’s actually been doing extremely well for the last couple of months!

Yes, there’s still multiple meds and we know some will be for life; there’s still overnight tube feeds; there’s still much work to be done with learning to eat by mouth well for the first time ever; there’s still GI challenges; there’s still the monthly trips to Philly; there’s still the knowing she will need another transplant later on; there’s still antibodies that had improved but are now rearing their ugly heads again. (This can happen with or without rejection, but is a concern that is being monitored closely as it could be potential rejection). BUT, every day is so precious and such a gift! God has answered so many prayers already and I know He will continue to do so!

Our family feels like we are entering somewhat of a new stage…Josiah graduated Kindergarten. This boy keeps a smile on his face and joy in his heart despite the difficulties our family has been through this year. Ela finished Pre-k and is hitting all kinds of milestones. Noah is officially a toddler but still likes mommy cuddles, super fast and into everything!

Thank you all for your prayers and continued support in our family journey. Thank you for your generosity through COTA or other means. You are very much a part of Ela’s success too because you invest in her:

therapies (like learning how to use her mouth muscles to eat), medical supplies (like the tubing needed to feed her at night and more), monthly appointments to Philly (cost of stay-hotel, parking, meals, etc.), sometimes medicines, and the list could go on. We can’t say thank you enough and rejoice in God’s provision through you.

“Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”
‭‭Ephesians‬ ‭3‬:‭20‬-‭21‬