Ela has been in such better spirits since Christmas. We are off precautions meaning she gets to leave the room, go to the playroom, go for walks, and eat with us in the cafeteria. Miguel and I are alternating staying with her at night while the other goes to the Gift of Life House to sleep. We have had issues with our van again since being up here and had to Uber to/from the hospital last week; but thankfully the van is partially fixed… enough to hopefully get us home.
In other news, Ela is now a big 6 year old! Child Life helped us make her birthday as special as we could make it while being in the hospital. She’s also lost 2 teeth while being inpatient this time around. This makes her 3rd tooth in total being lost at the hospital (haha).
Ela continues to get her plasmapheresis treatments, along with bortezamib, and will hopefully have her last one today (Monday). Then, she will go for another heart catheterization with biopsy on Tuesday. We will probably get all the information back from the biopsies on Wednesday. Lord willing, if the rejection looks better, we will hopefully be back home by Thursday.
However, this second episode with rejection does set her back a bit. That part is disappointing. We will have to re-start the monthly visits (probably for the next 6 months) and re-start IVIG treatments. This means 3 day trips up here every month for the foreseeable future, more IVs, pokes and ouchies. She will probably go home on steroids again and a few additional meds that we were hoping to stay off of. We do appreciate your prayers for stamina, health, and strength as our family navigates these changes once again. Though all of this is not what we had hoped for or expected for her in 2026, we remain grateful for all the many ways that God continues to provide and sustain throughout the journey.
Praying that Ela can go home on Thursday and for your van.
She is so beautiful and finds joy in the goodness and gifts of God around her.
We love you all!
God’s healing and His power be with you all.
May God’s healing and His power be with you all.
Thanks for this encouraging update! We are praying for good results from the next testing and that your family will soon be home!
Continued prayers for the provision of the Lord in all that you need.
Praising the Lord for all His science that he’s permitted humans to discover and use to bring health and healing to human bodies. It boggles my mind!
I’m sorry you have to deal with all this, Leslee but your mind is sharp and you have learned so much! It’s overwhelming to read about it; i can’t imagine living with it day after day. God is and will continue to give you everything you need to get through these next weeks. I’m praying these first few months of 2026 will go quickly and that Ela’s body will respond to these meds quicker than anyone could have expected!! Hope you’ll be home this week. 💕🙏🤗
Prayers continue for strength, peace, comfort and healing for Ela’s body and for the family. Also for your van! Thank you for your updates, and prayers too, for all going home on Thursday!
Still praying for Ela and you two. May God continue to gracious to you all through this trial.
Praying for you/Leslee and Miguel for I know the heavy heart you have for Ela. Everyday is new and you never know what to expect. I do know that God is with you all, doing His good pleasure for each of you. So happy to see Ela’s smile and sending belated birthday wishes, sweet girl. God fold His loving arms around you and bring healing. Get your rest when you can. 🙏
We are continuing to pray for little Ela’s healing and peace, strength, and endurance for you all through the days and weeks ahead!
O brother More Hospital visits! That’s what my flesh feels/says. However, we are in agreement with you that God has provided much and sustained your family thru various trials (James 1:2-4, 25), in the last 6 yrs. Trent and Jan Hicks
Continued prayers for this precious child and the family! I love seeing her pictures! We pray for good results on Wednesday and even though the foreseeable future is more than wanted may you have a peace and confidence of God’s power in each step on this journey.
Continued prayers for each of you.