Friday, April 15, 2011

Update on my Marlee Girl



Most of you know that my Marlee Girl has been through some rough trials this past year. But be of good cheer! She is an amazing spirit and has bore her testimony of how much her Father in Heaven and her Savior love her!!! She has had two surgeries, one involving tonsils and adenoids and clearing her airway of lymphoid tissue, and in December she had a whopping nasty surgery involving drilling a hole in her beautiful tiny back and taking out the most massive kidney stones they had ever seen! Turns out she has this super rare genetic kidney disease. So we will be visiting our great doctors Dr Ahn and Dr Copelan alot. But we love childrens hospital in st louis, so we are blesed. We visited the geneticist in st louis couple weeks ago and we have also found out that Marlee has a rare disease called Neurofibromatosis ( google it, its fascinating yet scary!) She is now going to be visiting Dr Guttman in the NF clinic at childrens also. We go on May 12th to visit them. While Marlee has been in the hospital we have been super blessed by an amazing child life team and super great nurses. They pampered her and spoiled her! They do that with every patient there, and it is amazing. We are actually holding a fundraiser for the child life team-- you go to www.youravon.com/keithkaylor or www.tinytillia.com and search for representative Kaylor in Missouri. Whatever you order from those two sites, the entire profit will be going to Childrens Hospital! www.stlchildrens.org - when we go to visit the hospital on May 12th, we will be stopping to purchase all kinds of goodies to donate! Crafts, books, movies, stuffed animals ( the nurses love to leave presents on the patients beds after a particularly rough night, so the patients have a surprise when they wake up!) and ill tell you what, the parents rooms need some new magazines hahaha! We are gonna load up the wagon and roll all the goodies right on up to the patient playroom where we can shower everyone with gifts!!!! I cant wait!!ok, i am going to upload some pics in the next few posts, of Marlee and the patient playroom and all that kind of thing. Thank you so much to everyone who has prayed for Marlee girl. Your prayers are so appreciated. ;)

5 comments:

Melissa said...

Oh, sweet photo with the teddy bear. glad she is okay and we have technology that can help her.

Melissa

mom288.blogspot.com

Tammy J. said...

:) Thanks for sharing, Jaelle!!!

gusDon said...

Interesting note's and honest. Life always has a plan, we live it. And there are always surprises in the future...
Interesting picture... Marlee is cute, hope she's better!

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Cynthia said...

I just started volunteering with the child life program near us in CA. I am so glad that it made such a difference! It is also wonderful what you all are doing!! Glad to hear that your little one is okay.
Cynthia
http://www.adreamadoption.blogspot.com