Happy Birthday, Fletcher!

It's hard for me to believe my sweet boy is three years old. What a journey we've been on. What a blessing you are to your family and to so many other people! I love you more each and every day. You are an inspiration to me. You are a wonderful boy who is very smart, very funny, very sweet and very loving. As I sit here and think of you and your life I am so grateful to be your mommy. I have learned so much in these three years. I have learned I can do a lot of things I didn't think I could do. I have learned that the Body of Christ in action is a beautiful thing. I have learned that life is precious and should not be taken for granted. I have learned that you are truly a gift from the Lord and He trust me to be your mommy! I pray that your day is filled with love, family and lots of fun!

Fletcher's first birthday

Fletcher's second birthday

Fletcher's third birthday

I love you best, I love you most, I love you high, I love you low, I love you deep, I love you wide, I love you THIS MUCH!

Fletcher's birthday invitation

My niece Amber, (you know, party planner extraordinaire) put this e-invite together for Fletcher's 3rd birthday. Isn't it the cutest? That Amber she's the best! I do wish I knew how to make it bigger so you can see it better. Oh well, you get the idea!

A Great Day...

I couldn't have asked for a better Christmas! Fletcher spent the night with us on Christmas Eve and all of us woke up under the same roof! How great is that? Some friends brought us Christmas dinner so I didn't have to cook! That was pretty great as well! They brought more yummy food than we could eat! Craig's parents and his sister's family came over to spend the day with us! Santa brought Kayleigh Guitar Hero 3 and it proved to be the highlight of the day with everyone joining in on the fun! Maddie got the wooden dollhouse she wanted and she spent quite a while playing with it in her room. Fletcher received some books and a portable DVD player. He's never watched TV before but one of his friends, Andrew has a little DVD player and he watches home videos, isn't that a great idea! I thought it might be fun to have Kayleigh and Maddie make some videos for Fletcher. I'll let you know how that works out! We truly had a wonderful time being together. Fletcher did really well and slept most of the night. Craig and I were exhausted though! It is a lot of work taking care of him. We brought home 20 different bottles of medicine and 3 different kinds of breathing treatments! Craig spent about 2 hours getting all of the medicine ready. WOW! I have posted a few pictures, the first one is of the kids in their Christmas pj's, Fletcher was not wanting his picture taken and this is the best one out of three. Oh well! The second picture is our brother in law Rodney and Craig taking their turn at Guitar Hero! It was hilarious watching these two tall, big men play this game! Look how little the guitars look! All in all it was a fabulous day. I now have a birthday party to plan! Fletcher will be three on Sunday, so we are having a party at TCC. I'll fill you in on that one later!

Maddie, Fletcher & Kayleigh Christmas Eve 2007

Silly boys!

Annual Milgrim Family Christmas Party

Last night my side of the family, the Milgrim's, had our family Christmas party. We have 23 grandchildren so many years ago they started drawing names just like we did as children. As our families have grown, instead of making each kid wait until the person who drew their name arrived at my parent’s house on Christmas day, we started having a Christmas party. We invited Santa and he would bring the gifts and pass them out to each child. This was also an opportunity to have your picture taken with Santa. It is always lots of fun to get together with my family. We love each other and we love to make each other laugh, a lot!

My niece, Amber has taken on the role of event planner and does such a great job. For this party she planned games and the kids decorated sugar cookies. She also put together little goodie boxes for each family! Amber is very sweet and thoughtful and we’re so thankful that she’s willing to plan these wonderful parties for us! Last year Amber had the fabulous idea of bringing the party to TCC so Fletcher could be apart of the fun! Well, yesterday afternoon it started to snow, right after it had been sleeting. So, the road conditions weren’t the best but everyone made it to the party! I really appreciated everyone traveling to TCC even though the roads we bad! They’re the best! Fletcher attended the party for about two hours and did really well. He enjoyed watching all the kids play. I think he had a great time with all of his cousins, aunts and uncles and of course Grandma Jill!

Amber, event planner extraordinaire!

Garrett, Kyle & Kaleb

Ryan, Craig & Fletcher

The gang waiting for Santa!

Kayleigh

Marcos, Sylvia, Cynthia & Carmen with Santa!

Kayleigh, Maddie, Fletcher & Santa!

Merry Christmas!

Well, here's the ONE picture where Fletcher smiled! He was quite a toot through the whole picture taking process! There is also a color version which we used for our Christmas cards. I liked the black and white and Craig and the girls liked the color version, so they out numbered me this time! But, this is MY blog so I will share the black and white one with you all! :)



Here is a picture of the way Fletcher acted through the whole process. This one being the worst, look at him, he's so mad he's trying to hit me! Like I said he was being a toot!

Maddie's Christmas program

This morning Maddie and all her friends at church put on their annual Christmas program. Maddie had about four lines and remembered each one and said them when she was supposed too! We were really proud of her! Maddie played a girl named Maria and her first line was 'Hola, Pablo!' It was pretty hysterical! She wore a pink fleece poncho (with lots of static electricity!) I think the poncho was her favorite part of the whole process! The director of the play very graciously let Maddie have the poncho, she wanted to sleep in it today during her nap!

Twelve Days of Christmas...

Okay, so it's time for a more upbeat post! Christmas is just around the corner and we are getting ready. I finished my shopping today! Boy does that feel great! Just a few more packages to wrap and stockings to stuff and we'll be all ready. Kayleigh's grandparents and her Aunt Jackie put together Twelve Days of Christmas for us. We started opening presents on December 13th and we will get to open one gift each night until Christmas Eve. Can you imagine the thought and preparation that went into making this happen for our family? Monna, Pops and Aunt Jackie are so thoughtful and we're so grateful to them for helping us make time each evening to spend with each other!

I have several blog friends who have posted pictures of their Christmas trees so I thought I'd like to do the same thing. Last year I found a seven and a half foot pre-lit tree on clearance for forty bucks! It is gorgeous. It was fast and easy to put up, too! Growing up my family always had a 'real' tree. After Craig and I were married we purchased a fake tree, much to my chagrin. But I quickly fell in love with that tree when I didn't have to water it, vacuum dead needles, and received NO bloody scratches upon taking it down! I'll never go back to the real thing! I have slowly converted a few of my sisters to go the 'fake' route also. I believe they're convinced!

We are planning to bring Fletcher home on Christmas Eve for an overnight stay. We're very excited to have him for a whole night. I can't think of anything I'd love more than to have all three of my children waking up in our home on Christmas morning!

MRI Results

Well, I've been putting off posting about this for nearly three weeks. I am still struggling with the results of Fletcher's MRI and I am really not sure that I understand what's happening to my sweet boy. It's one of the main reasons I stopped to blog about the Lord's faithfulness because I needed to remind myself of all that He's done for Fletcher thus far. One of the first things that the MRI showed is that Fletcher has bone overgrowth in his skull. The overgrowth has 'obliterated his para nasal sinuses', now we know why his nose runs constantly. They are worried now about his optic nerves and his ears wondering if the bone growth will cause hearing and sight problems. They do not know when or if the bone growth will stop. And the hardest news of all...the MRI also showed that Fletcher's brain has atrophied. I just don't get it. I have just recently let my guard down about my dreams for Fletcher's life. He is tolerating (very well) the weaning of steroids, methadone and valium. I honestly thought our next big thing would be conquering the ventilator, knowing that could take years, but that was okay with me. But now, his future is uncertain. I guess it really always has been just like mine and yours. Two weeks ago we went to the dermatologist, he's one of the few doctors Fletcher has that knows anything about Epidermal Nevus Syndrome (ENS). When he was reading the MRI report he told us that all this goes hand in hand with ENS and so does the phosphorus problems. Wherever the nevus is the overgrowth of bone can happen, well most of the nevus is on sweet Fletcher's head, thus the misshape of his head. Also they believe his eyes are protruding because of the bone growth. At this point, no one really knows what to do, so they are researching and educating themselves on ENS. We are working with Fletcher's endocrinologist to help get his electrolytes back to normal. The dermatologist is seeking the advice of one of his colleagues to find out how we can help Fletcher and maybe have some kind of idea of what to expect. We are also waiting for a meeting with the neurologist to see what he has to offer.

As I'm sure you can imagine my heart is breaking. I'm struggling with how to pray. Do I pray asking the Lord to stop the over growth of bone? I know He can do anything, but will He? I'm afraid to ask. I'm afraid to pray for His perfect will, because I'm afraid it won't be what I want for Fletcher. I keep having these conversations with myself. Telling myself that perfect love cast out all fear, telling myself that His ways are higher than my ways, telling myself not my will but Your will be done. But still I'm afraid. I'm afraid of what the future holds for Fletcher. When they gave me the news about the MRI I said to myself, 'this is the worst news EVER!' Then I reminded myself that the worst news ever would be Fletcher not being here with me. Please pray for Fletcher and for Craig and me. We've decided to just enjoy Fletcher and take each day as it comes. That's all we can do for now. He's such a sweet boy. Today I took a few pictures of him while he slept. Craig also took a picture of him playing tonight.

Christmas Program

Yesterday afternoon Fletcher was in a Christmas program at TCC. He seemed to enjoy himself and the program was really cute. His little group played the drums. Kayleigh, Maddie and their cousins Devon, Megan and EmiLee also came to see Fletcher's performance.

Right before the program as I was waiting with Fletcher a camera crew kept filming him interacting with us. A few minutes later a woman introduced herslf to me. She works for OETA, which is our local PBS station, she is working on a documentary about Music Therapy and she wants to follow Fletcher through his therapy. Well, he loves music and he loves Friday's because that's music day in his classroom! So, I agreed to let him be a part of the documentary. I don't really know what that means yet, but I'll keep you posted.

Fletcher's story Part 3

I can’t continue to tell this story without pausing to reflect on all the amazing things the Lord was doing for us during these times. God has provided for us each step of the way. Besides giving us the privilege to be Fletcher’s parents, He provided us with family, friends and an amazing church family. I want to take this time to tell you the ways the Lord provided for us and showed Himself in ways that seemed impossible to us. You know when you’re in the hospital you have to pay a co-pay and a deductible? Well, our sweet church took up an offering for our family and raised $3000.00, which was the exact amount of money we needed to pay Fletcher’s bill and mine! One day I went out to check the mail and I found an unsigned card with five one hundred dollar bills in it! The church Craig’s parents attend wanted to do something for our family so they had a car wash and garage sale. They raised $800.00! During Fletcher’s first summer the air conditioner in our house kept breaking down and a friend at church who owns a heating and air conditioning company sent one of his guys to our house to repair it every time it broke down. At no cost to us! Remember the home health VP who helped us tremendously? Well, before he helped us, friends and family heard how much it was going to cost and we received three or four checks, each for the amount of $350.00! One of my best friends, Laurel wanted to do something worthwhile for our family so she organized two months worth of meals, babysitting, hang out time for my girls, and errand running! One of my other girlfriends had my house cleaned twice a month for at least 8 months! We had two scholarships to two different Mother’s Day Out programs for Maddie, allowing me to be with Fletcher each time he was in the hospital. Many of my friends would come and sit with Fletcher in the hospital so I could do other things. In August of 2005 my sister Dawn organized a 24-hour prayer vigil it was such a blessing to know people were praying. During the spring of 2006 our air conditioner broke again, I called our friend from church, he sent someone out to fix it and decided we needed a NEW heater and air conditioner. Do you know what he did? He GAVE us a brand new system for free! WOW! That one still amazes me! I could sit here for hours and tell you of the wonderful things the Lord has done for us and is still doing for us. What a blessing to see the Body of Christ in action.