Tuesday, February 14, 2012

Update on Marlee Sarah Beth feb 2012

Marlee with Dylan and Syd on her baptism day 2011

Marlee had her renal ultrasound and checkup with Dr Ahn in st louis friday. She has one kidney stone but its stable thank goodness... so with her medicine etc, her kidney disease seems to be stable. Unfortunately we got news we weren't yet prepared for. We've known since Marlee was born there was a slight chance she would have Neurofibromatosis type 1. We found out a few months ago at the geneticist that she probably did have it,but we hoped for a couple of years before we would have to start treatment. Friday we found out Marlee has her first neurofibroma ( tumor- benign this time thank goodness) and she has 6 of the other "markers" for the disease, so she is starting treatment at the NF Clinic at Children's Hospital in St Louis in April. The pamphlet they gave us explains Neurofibromatosis as this " a set of complex genetic conditions that can affect nearly every organ system in the body. NF causes tumors to grow on nerves throughout the body and in the brain. Other problems can include learning issues and bone deformities."  We have dealt with the learning issues and she had been diagnosed as autistic when she was 3 and a half... now we are wondering if it has to do with the NF. Weirdly, her Kidney Disease ( cystinuria) is completely unrelated to NF. As a mom, I have no idea how to deal with this. I feel like Marlee-girl is a ticking time bomb. As a human being I feel the need to help others thru this somehow. So we are hosting a collection of used and new books and games, and new coloring books etc to take to Children's with us in April. Children's hospital is amazing. They have been so wonderful to us, and when Marlee had her big surgery last year and consequent hospital stays, the nurses, doctors, and childlife teams have been amazing. The playroom for the patients is always stocked with crafts and toys and games, and they take donations.... so we would like to be able to give them a bunch of good stuff. The registration areas are stocked with donated books, new and used, that the kiddos get to choose to take with them. So we would like to stock those up also! Plus, if you have magazines or books for parents, or little shower gels etc.... I know from experience the parent lounges are in desperate need of some new reading material and us parents who have to stay overnight etc, could use some smelly good stuff to shower with. If you are interested in either donating money for us to purchase things for the collection, or sending stuff, please text me at 573 795 9735 or email me at jaellekaylor@gmail.com I will be setting up a paypal button on here soon and also, you can mail a check etc. The only way I feel that I can get thru this is knowing that somehow, we can help others along the way. Your prayers are also appreciated!!! With Love, JL the momma.

2 comments:

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Amy said...

We love the Children's Hospital in STL. While we were there in Nov they wheeled a Wii into Lane's hospital room. The other two were brought fun toys to play with. I've working on making blankets to take with us the next time we have to go there.