Nothing is totally set in stone yet. We thought we were going to transport to Houston today or tomorrow, but now it looks like it might not happen till next Monday. I've been busy trying to pack what I absolutely need for four months and get the house in order so Jerry will feel cared for while he is here by himself. This delay will at least give me a little more time to get things organized. It's hard to think of everything I could possibly need to get done between now and February, especially with Thanksgiving, Zane's baptism, Christmas, and Zane, Mitch, and Jer's birthdays all happening in the next two months. It's all a matter of figuring out which transport company the insurance providers and the doctors can agree upon. The insurance understandably wants the cheapest and the doctors want the best capable for a pediatric ICU patient. The twain do not necessarily meet.
In the meantime, Kiera has actually been doing pretty well. Her new thing is sticking her finger in her nose and the noses of others. She does not discriminate. She likes all noses. She is also kicking and playing with her legs a little more. She likes to laugh these giant belly laughs, often at things that really don't seem that funny. Her whole body moves when she laughs. I wish we could hear it.
Keep praying that Kiera stays well enough to transport long enough for everyone to come to a consensus. All the doctors and nurses have been so sweet and have been stopping in to visit Kiera before we leave, some on their days off. Everyone loves Kiera and has grown quite attached to her, so it will be hard for all of us for her to leave. The Presbyterian NICU and PICU have been outstanding in their care of her and us. I don't think we would have her here with us today if we hadn't been with this group of wonderful dedicated professionals who have gove above and beyond in her care. We are extremely grateful for her pulmonologist, Dr. Glasser, and his dedication to Kiera's care. Like me, he's hardly missed a day of seeing her in 15 months even coming in on weekends and checking in while out of town. We hope we will get to come back to visit with Kiera healthy and breathing easily with her new lungs.
Love,
Therese
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Hi to Kiera Rose, Mom & Dad,
You don't know me, but you have recently talked to my daughter, Janice McKellips. Her daughter, my granddaughter, Kali Grace McKellips was also born prematurely (3 1/2 months early). Kali had a double lung transplant at Texas Children's hospital back in April of this year. Kali will be 16 months old on the 11th of November. Both Kiera and Kali are amazing little miracles who have defied all of the odds.
I pray that your little one becomes another wonderful miracle just like Kali. The ups and downs are always there, but oh my gosh the smiles totally light up the room. You will like the transplant team at Texas childrens Hospital. They are great. Kali will go back again the middle of January for another checkup with the transplant team. Maybe my daughter and her husband Eric will see you there.
I felt I needed to write to you, to let you know you are not alone and also to tell you that it helps my daughter a lot to talk to other mothers who are going through the same situations. It's good therapy to talk to other mothers and the caring bridge website is a god send for her as I believe your blog is also great therapy for you and your family.
My prayers are with and your upcoming trip to Texas. Take care and know Kiera is in great hands. God loves your little angel very much. She is a beautiful little girl. Her pictures are adorable.
Cindy (Kali's Grandma here in Minnesota)
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