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.

Romance in the air

The kids decided Keith and I needed a romantic dinner :) So they made us this lovely dinner and even provided entertainment! :) I LOVE THEM!!!
notice the two straws in the chocolate milk? hehe! :)

Sledding at Grandma Ulry's

We have had the mildest winter ( which I am TOTALLY ok with!!!!) but it finally snowed just enough that we could take the kids sledding, and it melted that night! Here are some pics of Keith and the kids sledding down Grandma Ulry's giant hill at her house! Grandma Kaylor went sledding too, but I was laughing to hard to get pictures, everyone was cracking up laughing having a great time! What happy memories!

Christmas 2011

We spent time at Nana and Pop Pop's with Aunt Vonnie also, on Christmas Eve. Then we set out our cookies and milk for santa ( inside for the first year ever.. Marlee has decided its ok to let santa in the house now) and then Christmas Morning we had a wonderful day together as a family! We are blessed to be able to celebrate the birth of our Savior , whom we love!!!!

Halloween 2011

We actually went " trick or treating for real" that's what the kids called it lol!!!! We had a really fun night!!! Marlee was Gary from Spongebob ( she always thinks of the most unique costumes!), Sydney was a vampire, and Dylan was Optimus Prime the Transformer. :) It was fun!

Dylan's Faux Hawk Part Two

This was taken January 2012.... a few months from the first one... see how the Faux Hawk hath grown!!!!!
I think he even has the same shirt on as the first pic lol!!! :) I love this boy!!!!

Dylan's Faux Hawk Part One

Dylan decided to go with a new hair do... the faux hawk... I love it! He looks so grown up and handsome in this pic. sheesh.

This was taken around November?? Check back soon for part two!!!!

Aunt "Lan's" Birthday

Well, her birthday was in august, but I just had to post this cute pic of Marlee, Aunt Sandy and Aunt Lan.... Marlee's getting smooshed kisses!! Lucky girl! :)