New Writer! Jaelle's Daughter

Hello! This Is Marlee! If you have read this blog before you may have heard of me. I am Jaelle's Middle daughter. as of now I am 15 turning 16 this July. I have been looking through the two old blogs and realized we have not kept up.

So I will start Catching up to now. in hopes to be caught up by summer. I am so excited to start this. With Mom's permission of course. I am now an Author and I love to write so this will be perfect for me. Things like this are important.

A LOT has changed. for one thing we are a lot older. it has been 5 WHOLE years! that's insanity. We are still pretty fun. It will be a change for me. and new perspective. and since it is still Mom's blog she may post one day. No clue. but to make things simple I will make sure to say it's me at the beginning. makes more sense that way. This will be fun.

So join me for this crazy project if you have been wondering how things have been going. My Mom has a newer blog that she writes on : ldsparenting.blogspot.com

I Hope you guys will enjoy these posts and hopefully I can do almost as good as My Mom has done. Love that woman to death. So here goes nothing. I will start from Where we left off. well after this post. just wanted to update you guys if we still have an audience.

No clue honestly. that's all for now! - Marlee <3 p="">

April 2013 bbq at friends farm!

Wow... so behind as usual... going to try and go thru some pics and upload them here so that I can keep memories of my babies alive!!!!!

This is Dylan's butt ... hahaha.... We had a bbq at our friends Kristen and Kyle's farm... Dylan was fascinated by the tiny little serama chickens they have! So he climbed right into the chicken tractor with them!

Marlee getting ready to eat at the bbq! woot woot!!!!

Our friend Kristen with the yummy food for the bbq!!!!

Our friend Kyle taking Dylan and Keith for a ride on the ranger around the farm!!

Girls turn on the ranger!!!!

We really enjoyed our time at the farm... it is relaxing and the kids love to play and explore. They have a big pond and Dylan and Keith and Kyle found a big turtle!

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.

spending the night with cousin angie

dylan and marlee went to cousin angies and spent the night with her and andrew and alex. they had alot of fun from what i've heard!!! they stayed up really late and played hard! of course Marlee came home with fancy hair, she loves when angie does her hair! Im so thankful they get to play with family and spend time with them.

Tropical Girl....

this is what marlee looks like before she hops in the pool :)

Marlee's Birthday continued

For Marlee's actual birthday, we went to barry and had dinner with aunt sandy and uncle bob and then went to grandma odie's where she had prepared a special pink angel food cake for marlee!!!

Marlee's Baptism

My beautiful daughter marlee sarah beth was baptized!! It took her a long time to do it, because she has autism and is terrified of water, but her sweet spirit is strong and her testimony is strong! It was one of the most spiritual baptisms i have ever attended and the fact that it was my daughter made it even more special!
here are some pics!

My Marlee is getting baptized!!!

Well the time has finally come. I knew getting the pool would help! My Marlee girl has several physical health problems and autism. She was scared to death of the water and to afraid to get baptized. Now that shes been in the pool for about 3 weeks off and on, she asked daddy to practice baptizing her. Then she announced a couple days ago that she was getting baptized on sunday! LOL!!! Thank goodness it all worked out ok! Worst weekend of summer but she says its cool cause its fourth of july weekend and she said she prayed and God was happy. Those of you that know Marlee know she is one of Heavenly Fathers most precious spirits with a very close personal relationship with Christ. I would love it if you would comment and write a note to her, so that we can print this out and add it to her baptism book that my sis is making her. She made one for Dylan and it is one of his ( and my) most cherished possesions! Everyone is invited, regardless of your faith, tomorrow at the LDS Chapel on Centerville road, around 1 pm!! Don't forget to comment and leave her a note! :)
with love, Marlee Sarah Beths momma :)

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. ;)

A School Day :)

My girls are so cute. Not only do we homeschool daily, but they like to "play" school! It was so funny this morning, as I was doing the dishes and Dylan was helping me cook dinner to stick in the fridge for tonight, the girls were sitting at the dining room table. Marlee was saying things like " After prayer, we will go over our family rules and then we will read from the scriptures" and they had a little prayer, read over the family rules, then Marlee read a verse from the scriptures. The whole time Sydney was sitting like a little angel. Why doesnt she do that for me?? LOL. After that Marlee decided to help Sydney work on her reading and writing. Marlee has been so wonderful in helping Syd to read. I am so proud of both of them. It was just so darling to watch them as they played and to realize that I am just such a proud momma, because my kids are so cool!
Im thankful to be a momma, and Im thankful I have the three beautiful children that I do, and Im thankful we homeschool so I dont have to miss a minute with them!

Marlee's Surgery

Wow, it has been 5 days since Marlee-girl had her tonsils and adenoids removed! She is finally doing a little better! Yay! Even though I was really nervous about the surgery, Im very thankful we had it done... we found out the day after her surgery that a test they did confirmed that she had terrible sleep apnea! Also, right after the surgery her doctor told us that she not only had the lymphoid tissue on her tonsils but also her adenoids! He was able to make her airway much more open! Two reasons that Im thankful we had this surgery done! Also, the worry of the tissue turning into lymphoma is now gone! This was basically the first "trial" on our journey with Marlee's neurofibromatosis. We are going to go ahead and treat her as though she defintely has it, because it is much safer that way, and it takes a blood test from a geneticist to confirm it and the fastest they can get her in is JULY!!!
Here are some cute things from her surgery journey. The first thing she did when she woke up from recovery was take a piece of paper and write " popsecle" lol. We had to wait for the throat numbing medicine to wear off then she could have her "popsecle" LOL!! I probably wouldnt have been able to spell it either if i was just out of surgery! The second thing she wrote was " I have the free credit report.com song stuck in my head" she was VERY unhappy about this!!! It was the last commercial she saw on tv as they were wheeling her into surgery! I laughed so loud when I read that and the nurses were laughing and she just got a grumpy look and shook her head no. Then she wrote " NOT FUNNY" :)
The first night was horrible... neither of us got a wink of sleep, but that is very understandable. The second night was also horrible as she developed a nasty cough, ouch!!! We ended up back at the dr on friday, he was afraid she had aspirated on blood during the surgery, but thank goodness no pneumonia! Everyones prayers worked so well! God is good! She did have a ton of swelling and irritation and she was trying so hard not to swallow she would end up gurgling and coughing. So we were able to add delsym to the lortab and she has done so much better sleeping at night. We are already seeing improvements in her sleep and she is still recovering! AMAZING!! I just can't get over how amazing our Heavenly Father is! He loves my baby girl so much! She is finally starting to eat a bit of solid food, and is still drinking well and eating her "popsecles" lol. For the most part she is doing great, but you can tell when her meds start to wear off poor baby! I just tucked her into her own bed, and she is wearing her little bed buddy ice pack, and is ready for hopefully another good night sleep! Im just thankful to be able to say we made it through this trial and now we pray and wait for Dylan to go to St Louis on the 23rd.
Thank you so much for your prayers for my beautiful daughter. I appreciate it! If anyone wants to... please pray for my handsome son for the 23rd!!!!!
Love, JL

Marlee's honking tonsils...

Marlee is having her tonsils removed on wednesday... they are full of lymphoid tissue that has built up and since he cant promise that it wont turn into lymphoma and because of her difficulty in eating and sleeping, we are gonna yank those suckers out!!! Please continue to pray for her... sounds like we will be having a long road ahead of us for Marlee... this is just the beginning, but we have lots of people praying and she is soooo worth it!!!!! we love her so much and we are thankful that she has lots of doctors who are being cautious and taking good care of her!!!!! Love, JL

Emergency Fast for Marlee...

Asking for prayers.... EMERGENCY FAST... if you can get ahold of anyone in your ward... please pass this around... We are holding an emergency fast for Marlee.. she goes tonight to the ent and its quite scary... please either pray or pass around the news and fast until tonight... i will update everyone tonight as soon ...as i know more... it will be late though. Thanks sooo much!! Please pass this around!!!

My blog is www.momtothreebabies.blogspot.com and it has more info.....

THANK YOU!!!!!!!!!!

Update: They thought marlee had mono.... but her blood results have come back negative and there are some other things going on... the ent is seeing her in an emergency status... we have no idea what is going on.. with the possibility of her having neurofibromatosis, we are terrified because tumors are such a big part of NF. Please pass this around and pray for my baby. I love her so much.

Will the tonsils come out???

Here is the big update for today.... Marlee is headed to her favorite Dr-- Dr Knorr, she LOVES him, and we will see if today is the day for those big ole honkin tonsils to come out!!!!! She has struggled for almost 6 months now, four rounds of antibiotics, shots and more, and they are still SOOO big and swollen she cant hardly eat ( we are talking applesauce, sherbert, and yogurt. yum.) and now when she tries to lay down to sleep, she gags all night and cant sleep. Oh yeah The joys of being a momma to a gaggy child. Poor baby. Another little update... the doctor is struggling to get her into a geneticist.. so she is working hard and calling all around and faxing letters right and left, working hard for my marlee girl! A big shoutout to Dr susan meidl and Dr David Knorr! We love you both!! The nurses have been awesome about calling us and updating, and so we wait. We know that it is all going to be in HEavenly Fathers time, and that He will take care of it. So for now, we get those big ole tonsils out and let the girl eat and sleep!!!!!! Im thinking lots of ice cream, a bubble bath, movies... oh yeah, and maybe i will share with marlee :) hehe

A Conversation Between Barbie and G.I. Joe

This is what I overheard today as my babies were playing....
Marlee ( In Barbies voice)--" Oh GI Joe, thank you so much for the gift of these beautiful high heels!"
Dylan ( In his own voice) -- "GI joes dont buy high heels Marlee!!!!!!!"
Marlee ( In Barbies Voice)-- "Oh bumblebee ( transformer) Thank you so much for the gift of these beautiful high heels"
Dylan ( In his own voice)-- MARLEE!!!! eyes roll at this point.

How fun it is to have both a boy and girls. I am constantly amazed at the difference
in each of my children, and never thought I would have a boy, lol, but I must say I quite like having both!!! They are both super fun!!! ;) especially with days like this!

Update on Marlee Sarah Beth...

Marlee's appt was yesterday.. what a long day! We have felt everyones prayers so much, and we thank you so very very much. We still have a long road to go it seems... we got a few answers, meds to help keep her comfy, and today we received a phone call from the dr, who talked to Marlee's regular doctor this morning, and they both agreed 100% that Marlee needed to get into a geneticist immediately. So we will find out today, where we need to take her... and go from there. Your prayers are still very much needed and appreciated. We are so thankful for good doctors and the prayers of many. :) Will try to keep everyone updated here and on facebook.... if you arent my friend on facebook... im Jaelle Garner Kaylor :) With Love, Jaelle

My Marlee.. a prayer request

Hello to all my friends. I have a very special request. My 7 year old daughter Marlee goes to the specialist tomorrow. Its a very important appointment.. we find out if she has cancer or not. We have been waiting for this appt for 4 long weeks now, hoping the medicine will do what its supposed to do. If you could all just take a moment and say a prayer for her, I would just appreciate it so much. She is amazing, gorgeous, smart and the sweetest little girl you will ever meet. We are asking for prayers, because we know they work!!! Thanks again, and if anyone needs prayers, please contact me, I will be happy to add you to my list of people I pray for each night. It really does help.
With Love,
Jaelle Kaylor
jaelleerica@yahoo.com
www.momtothreebabies.blogspot.com

Marlees Birthday

Marlee's birthday was fun! she invited her favorite cousin/best friend for a date at the mall! They had a blast!

Since her birthday is on pioneer day, she also got a bonnet from nauvoo and her favorite, lots of care bears!!!!! and a pretty new my little pony comforter for her bed! So much fun!

Marlee's wiggly tooth, and update on my grandpa

Well, Marlee's "buck tooth on her top shelf" as she calls it, finally came out! She was getting a drink of water and accidently bumped the glass against her tooth, then she said she thought she had a nut in her mouth! Lo and behold, it was her tooth!! She looks darling!!!

Now for some sad news.... My grandpa's very valiant fight with cancer seems to be drawing to an end. Now, I still think he wins, because he is very loved and is one of the most christian men i know, so he wins by getting to be held in Jesus' arms, but we lose because we will miss him. Im thankful I know that families can be together forever, and that our Heavenly Father loves us and holds us when we need it. The radiation is not working, his blood pressure is down again, and he suffered a light heart attack last week. This morning he had another episode of almost blacking out and they just told him there was no way to get a feeding tube in him, cant open his stomach because that is where the tumor is , cant go down the nose, there is no room in his stomach. He has lost 6 lbs since last week and is just to weak to even walk. My parents are thankfully able to stay with my grandparents and help out, but we wait. Please keep him in your prayers and also keep my grandma in your prayers, they are truly "in love" and she will be very lonely. I am so thankful for our family. We are strong we will get through this, but it is very sobering and sad to lose the patriarch of this great family. Love, JL

On the subject of TEETH

so... Marlee says that her tooth hurts, we take a peek and WOW it is ready to come out! So Dylan, her amazing big brother reaches in her mouth and POOF- out it comes!

The first pic is Dylan working on the last tooth Marlee lost a couple of months ago. Then the other pic is the trio after today! Notice Sydneys gorgeous makeup, lol.