Bye sweet friends!

This has been a week of good byes for Fletcher. His favorite teacher's assistant Mrs. Sybil and his PT assistant Mrs. Jenni have left their jobs at TCC. We are sad for us, but we are happy for them because we know that God has big plans for the two of them. We want them to know how special they will always be to us and how grateful we are for their love, dedication and hard work!

Fletcher and Mrs. Jenni his physical therapist.

Fletcher and Mrs. Sybil his favorite teacher's assistant.

Well, Fletcher had his appointment with Dr. Hildebrand on Wednesday. It went okay I guess. Fletcher will be having surgery on his eye again. We don't have a date set yet. Fletcher is having a CT scan next Thursday and Dr. Hildebrand wants to wait for the results of the CT scan before he makes a decision on what to do surgery wise. I'll keep you posted.

Fletcher also got new glasses today. This is his third pair. The last ones were way too small for him and I think that's why he didn't like them. So, we'll see if this pair is any better. I really don't know how to chose glasses for myself let alone my 2 year old! The picture I'm posting is from today. He drove his power chair to school and then he got new glasses, went to school and had OT immediately after class. He was pretty tired when I took the picture. If you look closely at his mouth that's what we call his 'sleepy mouth'. He always does that when he's starting to get tired!

Fletcher sportin' new glasses!

Happy Father's Day!

Yesterday was a day devoted to dear ol' dad! We started the day by picking up Fletcher at TCC and taking him to church with us. He was a bit grumpy and we weren't able to sit in the service with him due to the beeping and crying! Craig and I were shocked, normally we can't hear him cry! Craig and I had to alternate holding him as he slept in our arms. Craig's parents and his nieces joined us for church and for lunch afterward. Great food and family time how fun is that? Kayleigh made Craig a lemon cake (his favorite) and decorated it with cream cheese frosting (also his favorite!) and added lemon drops to top it off! It was yummy and daddy really liked it!After everyone left Fletcher took about a three hour nap! And the rest of us napped as well and we just hung out for the rest of the day. We took Fletcher back at about 7:30. Thanks for your prayers, it ended up being a terrific day with our family!

Today Fletcher had an appointment with his endocrinologist, Dr. Domek. Fletcher is on an extremely large DAILY dose of steroids and they are going to start weaning him off of them. They did try weaning him last year at this time and they weren't successful, maybe just not aggressive enough so, here we go again. Would you all mind praying that we would have success in getting him to a reasonable dosage? Dr. Domek is concerned about the long term effects of long term steroid use, one that he mentioned a lot today was osteoporosis. Anyway, it was a good appointment and since we were at Baptist we were able to go up to the PICU and see our friends there. How fun! Fletcher even warmed up and showed all of his latest tricks. He's very good at his body parts these days! Ask him where his head, ears, nose, tongue, mouth, hands and feet are and he'll show you! What a smart boy!

Last month Fletcher had an appointment with a neuro opthamologist, Dr. Siatkowski. That appointment didn't go like I hoped it would. As you all know Fletcher's right eye hasn't opened completely since birth and we have literally spent his entire life trying to get it fixed. As you may recall he had surgery on his eye on October 18, 2006 with Dr. Hildebrand. And as you can see the surgery was not a success. He basically only got a scar out of the deal! UGH! Well, when we saw Dr. Siatkowski he said the surgery needs to be done again and he referred us back to Dr. Hildebrand! So, on Wednesday we have an appointment with him. Don't get me wrong, Dr. Hildebrand is a good doctor, but I have this feeling that there will be some 'reason' why the surgery didn't work other than the doctor didn't do it correctly! I'm really not looking forward to this appointment. Please join us in praying for resolution to this eye drama!

An update and an invite!

Well, Fletcher's surgery went well this morning. We arrived at about 8:30 and we were back at The Center by 11:30, not too bad. This is the first time I can recall that we've sent Fletcher into a surgery and he cried as they wheeled him away! I believe he knew something was up and he did not like it. It made me cry as well. What a helpless feeling. It was so difficult to let him roll away with people who do not know him. He, of course survived and the replacement of the new Broviac line went well. Fletcher was smiling when we met him in the recovery room. What a brave boy he is!


On Saturday, June 9th TCC and Mark Harmon (CBS TV series, NCIS) is hosting the 7th annual celebrity baseball game at the Redhawks. It's a great fundraiser for The Center and sounds like a lot of fun. We are planning on being there. We'd love to have all of our friends and family join us! It starts at 3p you can buy your tickets at the Redhawks box office (I think they're about 5 or 6 bucks) the ticket you purchase will also be good for the Redhawks game that evening.


Another exciting thing that's happening at TCC is the Farmer's Market! It is open on Thursdays 3:30p-7p and on Saturdays 8a-12p. It also benefits the children at TCC. Last year I went every Saturday morning and I bought the best tomatoes and fresh fruit! We were really sad when it was time for the market to close! Be sure to check it out when you get a chance!

Fletcher is driving!

Last week Fletcher's physical therapist hooked him up with a power chair! And he can really drive it! Yesterday was the first time I was able to see him drive and it was such a hoot! He drove to school and as he was taking his time getting there he saw a lot of his friends so he showed off for all of them! I am amazed at how smart he is, he knows how to maneuver the joy stick to make it go forward, he still needs help to stay away from the walls, but for the most part he's got it down! Fletcher LOVES that chair and he's obviously proud to be independent. If we can figure out how to get video on this blog we'll load the video I took yesterday. I gave Fletcher a haircut today, a summer cut, a burr basically. After I finished cutting his hair I cried, saying what I have done? And that made Fletcher cry! It's so short, but it's so cute! Tomorrow Fletcher is having outpatient surgery at Baptist. He has a central line called a Hickman, which we use to give him IV meds, well the tubing has a hole in it so the line has to be surgically removed and replaced. The surgery is a 10:00 am tomorrow. We'd appreciate your prayers.

Kayleigh has been at camp since last Saturday and is on her way home right now. We can't wait to see her. Craig is sure he's forgotten what she looks like because she's been gone so long! Maddie has been praying every night for her sister to come home safely on Wednesday! And me? I've been praying for her to know Jesus in a more intimate way! And for a safe trip, of course!

Maddie has been busy this week. On Monday she was able to play with two of her friends, Annaliese and Justus and she came home with a new pair of old crocs! Yesterday and today she was able to stay with her cousins and play, play, play! She loves her cousins Devon, Megan and EmiLee! Tomorrow she'll get to stay at home with Kayleigh while we're at the hospital with Bubba! She's also been able to see Fletcher a lot since school is out. I think he really enjoys getting to hang out with Maddie. She loves to play with him and she loves to be in his bed with him!

Happy Birthday, Maddie!

Maddie turned 5 years old yesterday! When she was about 3 she wanted to chew some gum and I wouldn't let her, I told her when she was 5 she could then chew gum. Well, Maddie held me to that promise. Craig, Kayleigh and I woke up early and went into Maddie's room to wake her up and say happy birthday, Maddie's first words were, 'after I eat some cereal, I'm gonna chew some gum!' So, true to her word, the moment she finished her breakfast she chewed the gum Kayleigh got her for her birthday! Maddie had a great day. I took cupcakes to her school, after school she got to have lunch with three of her favorite friends, Carder, Max and Zeke. They went to Chic Fil A and had a lot of fun together. I picked her up and took her to the doctor for her 5 year well-child appointment, Maddie got one shot, probably not the best part of her day! What was I thinking making her well-child appointment on her actual birthday?! We also went to church, it was a very busy day. Saturday Maddie will have her first 'real' birthday party, which means she gets to have friends at her party not just family! We are having it at PUMP IT UP a really cool party place with tons of inflatables! I have invited about 24 children! WOW! What was I thinking? Really, it should be lots of fun. I'll post some pictures after the big day! Need to go for now. Thanks for stopping by!

That Maddie!

Just a few Maddie funnies, before I completely forget them! Tuesday morning when I picked Maddie up from school she was sitting in the back seat telling me about her day, what she wanted for lunch and then out of the blue she says, 'One day this week let's go to Disney World.' I told her I thought that was a fabulous idea! As she thought about it some more she decided she wanted to wait until Bubba wasn't on oxygen and that would be in about 100 days! So thoughtful, thinking of Bubba that way!

Last night Kayleigh was working on a paper for school about the Dust Bowl. Well, Craig was working with her on the computer and a discussion about all the dust came up. Somehow out of that conversation Maddie says to Kayleigh, 'Don't you know people are made out of dust, bones and ribs, Kayleigh!' I said to Maddie, 'How do you know that?" And she said, 'because my Bible tells me so!' I said, 'where does it say that?' She promptly went and got her children's Bible and found the page that the story of Adam and Eve was on and it said God made Adam out of the dust. 'See, Mom I told you so!' You go girl! As funny as it was I was really proud of her incredible memory!

May already?

I can't believe it's May!! I am ready for warm weather and spending time outside with my kids. This week has been busy. Monday Kayleigh came home with pink hair! Her school is having a cancer drive so each day this week they get to do some fun and crazy things! Pink hair being one of the craziest! Kayleigh has also been busy with softball, mostly practices since it has rained on every scheduled game she's had so far! Hopefully tomorrow it won't rain and she'll play her first game. We love going to the ballpark, having a hot dog and enjoying the game!




Maddie is getting ready for her first dance recital on May 12th. They are working on a tap routine to 'I Will Follow Jesus'. Hopefully we've been paying attention and the recital will be a success! Tuesday was picture day at the dance studio, it was chaotic but I'm sure we'll have some great pictures. Here's Maddie in her recital costume. She's very excited to wear it, I hope she'll be as excited when she realizes she'll be dancing in front of an audience of parents, granparents and lots of family and friends!

Fletcher had a great day today! We started the day with speech therapy and after that off to school we went. Fletcher had a blast in school where they sang songs and played games. Today they gave him a baby doll and he loved it! Craig wants us to call it an 'action figure' but this baby doll is far from an action figure! She is all baby doll, soft and cuddly and PINK!!! Fletcher lights up the minute he sees her, he kisses her and smiles the whole time he has her! I had used up all my film BEFORE class so I didn't get a picture of his baby, but I'll get one soon! Maddie wanted to see her Bubba so we went up there after she got out of school. She had a picnic in his bed and played with all his toys! Fletcher also had PT on his schedule today so we stayed for that. Boy am I glad we decided to stay! Today his physical therapist brought a gait trainer to his unit, which is basically a walker. How exciting to see him in a standing position where his feet touched the floor! This was a new sensation for him, first she took his shoes off, then his socks! I don't think his feet have ever touched the floor. I cried like a baby today watching him in that thing. He couldn't move the gait trainer today, but I believe one day he will. Maddie and I pray together every morning and we are specifically praying for strength in his lungs, neck, back and legs. Maddie always prays for him to be able to crawl and walk. What a joy to be able to see what the Lord is doing for him. Fletcher is now able to hold his head up on his own for 5 to 7 minutes at a time. I am posting a picture of me holding him supporting him only by his waist.