For starters, we have posted a new video on the right-hand side called, "Joella and Gi-Gi."
Joella is bottle-feeding once every six hours with a special, soft-nipple bottle with feeding through her feeding tube in between the bottle feeds. She needs a lot of calories since her skin is healing faster than babies without EB.
Her wounds are continuing to heal every day, and Katie and I are taking an active role in her daily bandage dressings (which is a very good thing).
We received a 2nd opinion on whether to proceed with plastic surgery on her feet that contradicts the plastic surgeon's opinion to go forward with the procedure. The leading EB expert in the US believes it would not be necessary nor helpful for Joella--he has seen many EB babies whose feet and hands take longer to heal than other parts of her body. In addition, a few EB parents around the country have weighed in with similar concerns. Therefore, we are in prayer for what to do. If we had to decide today, we would opt not to go through with plastic surgery.
Specific Prayer Requests
-Plastic Surgery for Joella's feet or not?
-Joella's continued bottle-feeding success.
-Many EB patients are covered through state Medicaid Insurance in addition to their primary insurance coverage. Medicaid coverage varies from state-to-state, so we pray that Virginia accepts Joella's EB condition as a covered condition. Our Blue Cross Blue Shield primary insurance is good coverage (it covers 90% of her medical supplies). Hopefully, Virginia Medicaid will cover the other 10%. Our preliminary estimates range in the $200-$500/month of out-of-pocket medical expenses that Katie and I will be responsible for covering if Medicaid does not kick in.
-Continued healing for her blisters and wounds.
-For her to come home soon. It could be a week to six weeks time! We don't know.
4 comments:
Dear KT and Joe,
Jim and I are praying for God's Wisdom right now as you try to make such an important decision about Ella's life. We encourage you to ask God to specifically show you what to do and to show you in such a way that you both know it is His answer to you. Isn't is hard to believe that He loves this little babe even more than you do! That's really something that you can trust in and hang on to. We know He is guiding you even now.
We know you two have had a monumental change in your lives in a matter of one split second (2 weeks ago you were deciding what to eat for dinner and what to take to the hospital - now a decision like this that is so vital) but remember that God has been working in both of you individually and also in your union of ONE to prepare you and bring you to such a time as this. He knew this was coming, He has gotten you ready and He is carrying you through each step. Praise God for His Mercy and Grace.
We love you guys.
In His Grip,
Nancy Jo and Jim Garbutt <><
Hey Guys-
That's why we get second opinions. I believe that at this point you should not do any thing. Have you thought about getting a third opinion? Sometimes doctors want to more aggressive than necessary, and I would proceed with caution before putting that precious baby through more right now.
Stay strong,
Joanne
Dear KT and Joe,
Thank you for sharing your daughter with all of us--it is such a blesing to hear about and to see your wonderful baby girl, as well as to witness all your love, hope, courage and strength, and that of so many others.
You are in our thoughts and prayers every day,
Ebba & Michael
Thomas and I continue to pray for little Joella. She has already fought so hard! I love watching the video-- what a precious little girl. Like all babies, Joella just wants the love and comfort of her parents. We will be praying for Medicaid coverage and all for the day that sees Joella home.
Rene Harrell
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