Ela is out of the hospital and has been at the Gift of Life Howie’s House for the last week now. She is doing well overall! We are just so thankful and blessed beyond measure. She continues to have some stomach issues of unknown cause that could potentially land us back in the hospital, so please pray that doesn’t happen! Ela spends her days now making pillow forts, playing games with the fun things many of you have sent for her (thank you), helping me with laundry, going to appointments, and of course still singing!

She has several things coming up. First, she has at least 2 cardiology follow-up appointments a week for the next month. With her antibodies still high (but slowly coming down), she has an IVIG antibody treatment on Monday. This infusion runs 6-8 hours so we will be at the hospital most of the day. (She has these treatments once a month for at least another 4 months because of her early rejection and consistently high antibodies that can lead to more rejection). Monday she also has ekg, echo, blood work, and further imaging of her belly. Second, on December 4 she has another cath with biopsies to check for rejection. According to the medical team, rejection is most likely in the first year (which we already know from experience), but especially within the 3-6 month range after transplant. We are entering this range now and honestly a little nervous about it given her post-transplant complications. Learning to trust God with this too….Third, Ela remains closely followed by endocrine (for her hypo and hyperglycemia), nephrology (kidneys), and GI (stomach issues). There’s still a lot happening so we do covet your prayers, but so good to see her energetic and happy!

Some obstacles…

She is in need of several therapies which she should be getting outpatient right now, but there’s some insurance road blocks. I am doing what I can with her on my own, but she needs some PT, OT, and Feeding therapy. I hate that there is a lapse in these services for her. Pray that this can be worked out and she can get in this week for these services.

Medicines and equipment. It shouldn’t be so hard to get what’s needed for a post-transplant child, but it is. We need you to pray that we can get her enteral G-tube feeding supplies and formula, and remaining emergency meds as soon as possible. Many hours of phone calls and emails to no avail.

I would like to pause on the challenges and just give thanks for a few of so many wonderful things:

1. I am thankful for all of you! For your prayers, your cards, your words that encourage all of us and remind us that God sees and cares. Thank you for showering our family in blessings and love letting us know that we aren’t alone and you all are in this fight with us. It’s especially touched our hearts to read all the notes and look at the pictures drawn from other kids! Thank you.
2. COTA and gifts. Let me tell you…Those funds have helped us buy her formula, medicines when we are desperate and we can’t wait for insurance to figure it out because she needs it now, medicines that aren’t covered by insurance, supplies from syringes to hand sanitizer, certain appointment costs, and even to be able to entertain the thought of paying for therapies out of pocket, if necessary. From the bottom of our hearts, thank you for the role many of you have played to meet Ela’s needs.
3. Donor heart and family. We will forever be grateful to them. With the holidays approaching, we think of them even more and can’t imagine their grief and pain through this season. May they find comfort in the Almighty Comforter and in the hope that their child gave to ours.

Of course, this in not an exhaustive list by any means, the challenges are still big, but our God is bigger. There’s always much to be thankful for. I am reminded of the kid’s song that I absolutely love hearing my children sing:

My GOD is so BIG

So STRONG and so MIGHTY

There’s NOTHING my GOD CANNOT DO (For you!)