Buddy Walk 2007

Yesterday Maddie and I went to the Buddy Walk at the Bricktown Ballpark. Every year the National Down Syndrome Association puts on a Buddy Walk. It is a fundraiser to raise funds for local Down Syndrome children. They have all kinds of fun things for kids to do like inflatables, games, pony rides and much, much more. If any of you know anyone who has a DS child and they seems lost and don't know what to do or who can help, be sure to tell them about the National Down Syndrome Association. They would be able to help them find support of all kinds, it's a truly wonderful organization. I have a niece, Kylie who is 14 years old and she has Down Syndrome. Kylie is an absolute joy to our family. She loves music, cheerleading, her brother Kaleb, being with her mom and dad and Hannah Montana! She's a hoot, I tell ya! Maddie and I stopped at TCC before heading out to the ballpark. Every year we all have matching Buddy Walk t-shirts so Maddie and I put Bubba in his t-shirt and took a few pictures. Someday I'm going to be brave and take Fletcher with us to the Walk...maybe next year. Kayleigh didn't go with us this year because she wanted to spend the night with her cousins and Craig stayed behind to be with Fletcher and watch the OU game.

Mommy, Maddie and Fletcher

Mom, Kim, Kylie, Kaleb, Kevin, me and Maddie

Maddie riding a pony

Kylie riding a pony

Fun Times...

Tonight my sister Dawn invited Maddie and me to a big picnic at her work. Dawn brought her grandsons Gabe and Ryan and Kim and Kylie came also. We had a great time! There were four big inflatables, games and lots of food. But the most fun was a hill that all the kids loved rolling down over and over! As soon as it got dark they showed the movie 'Charlotte's Web' on a GIANT outdoor screen. We only stayed for about 30 minutes of the movie but I bet it was a lot of fun watching it outside! Tomorrow we'll be at the 'Buddy Walk' for all of our sweet Down Syndrome friends. I'll post some picture from that tomorrow evening. Hope you all have a great weekend!

Mommy and Maddie

Maddie sliding down the hill

Maddie and Gabe heading up the hill

the whole gang

Sweet friends...

Today I got to see my dear friend, Susan and her family. Susan and I have been friends for nearly 20 years! Susan is a wonderful wife and mother and treasured friend to me and my family. She is also a missionary in Creel, Mexico. I get to see Susan and her family usually once a year sometimes twice a year. She always makes a special trip to see Fletcher. Today Fletcher loved playing with Susan and her daughter Jaynie. After I picked Maddie up from school we all had a fabulous lunch a McDonald's! When you live in the mountains of Mexico you don't get to have McDonald's!!! Maddie and Jaynie played on the playground at TCC under the supervision of Susan's husband, Luis. They really play well together. It was so wonderful to see Susan and her family and hear of the blessings they are to the people of their city. They will return to Mexico on Saturday. Oh how I'll miss her!

Fletcher had a great day and seemed to be back to his old self! We skipped school today since Susan and her family came to visit. I fed Fletcher at noon and I think I have figured out the secret to feeding him! Distraction is the key! Yesterday and today there were people around him and I would just sneak the food into his mouth and he would swallow it and sometimes even smile! Fletcher HATES for anyone to try to restrain him or make him do anything he doesn't want to do. So, I tricked him! It was fabulous! I also let him hold the bottle and just play with it and somehow he ended up having 15cc's of apple juice! Way to go, Bubba!

Old Fashion Tent Revival

Last night our church had a tent revival and ice cream social. So, Craig and I decided to check Fletcher out of TCC and enjoy the revival and the ice cream. We had a great time! Craig's parents are such a treasure to us, sometimes I don't know what we'd do with out them! Our family doesn't fit in our van when we have Fletcher and his wheelchair and all his 'stuff'. Trudie and David brought Maddie so we could all be together! Thanks! The music was awesome, thanks Kyle! The preaching was fabulous, thanks Lance! The kids had a great time, thanks Jason and my many friends who helped make it possible for me to go to the revival with my family instead of pastoring kids! And the ice cream was delicious, even Fletcher had a few bites! I am so grateful for our church family we are so honored to be serving the Lord with such wonderful people! Here are a couple of pictures from last night, I'm sure you've noticed Kayleigh is not in the pictures. She got to go to Six Flags this weekend with her cousin Megan for Megan's birthday. Now talk about fun, those girls had some fun!

We had Fletcher's post op appointment today. The doctors first words when he saw Fletcher was, 'Oh, that eye is not open.' But it is still swollen so we'll go back in 5 weeks and see what he has to say then. When Fletcher had this surgery last year Dr. Hildebrand did not follow up with Fletcher, so I am hoping follow up is the key. And the doctor will see the progress or the lack there of and be able to know how to proceed. That's all for now sweet friends! Thanks for stopping by and please continue to keep sweet little Ashley in your prayers.

Happy Birthday, Mom!

As most of you know I am number 6 of 7 children, the 5th daughter. And Friday was my mom's birthday. So, for her birthday we took her to lunch at Nonna's in Bricktown. It was a 'girls only' lunch. Not all of my sisters or nieces could be there, but we still had a great group! My mom's sister, Iris and one of her daughters, Heather came also. We had a lot of fun. There were a lot of stories and a lot of laughs!

Here's mom with three of here five daughters:
Kim, Mom, me and Dawn

Here's mom with some of her granddaughters and great-granddaughters:
Kayleigh, Mom, Amber, Chevaun, Cynthia, Maddie, Kylie, Sylvia and Carmen

Mom and Aunt Iris

My cousin Heather and Aunt Iris

A little update on Fletcher. His eye is looking okay, we have our follow up appointment tomorrow afternoon. Until yesterday I was very skeptical about the effect of the surgery but yesterday his eye looked pretty good. It seemed to open up a little more. So, we'll see. This is a picture I took of him Friday right before he went to school. Friday was the first time this week he made it through an entire class. It was music therapy day, Fletcher loves Friday's at school!

In my last post I asked you all to pray for sweet little Ashley, please continue to do so. She is truly in the battle of her life. Please pray for her parents and siblings. Craig and I can empathize with this sweet family we know how hard it is to try and balance 'life' and all that goes with it with a critically ill child. But, we didn't have to do it with Fletcher in a different state than us. Anyway, if you haven't checked on Ashley lately her mom has posted specific prayer request on their blog. Thanks for being the Body of Christ to this family!

http://www.ashleyadamsjournal.blogspot.com/

Please Pray

Would you all please pray for this sweet little Ashley? She is literally fighting for her life right now. I do not know her personally, but as a mom of a medically fragile child I find blogs that touch my heart. Ashley's story has really moved me and she needs our prayers. I know you all are so faithful to pray for Fletcher that I just knew you wouldn't mind adding one more precious baby to your prayers. You can read about Ashley and check up on her at this link.

Thanks, Denise

http://www.ashleyadamsjournal.blogspot.com/

Happy Birthday, Craig!

Happy day to you! You are wonderful and I am so grateful to be on this journey with you! I love the way you love me and the way you love our children. I don't tell you often enough how much you mean to me. You are truly a gift from the Lord. I am a better person because you. Today you started your day at 4:45am in order to get our sweet Fletcher to the hospital for surgery. I love this picture of the two of you. I was so happy that we were all able to be together after you got off work tonight. It's obvious your daughters adore you as well. You are amazing and we love you so much!

Well, Fletcher had eye surgery this morning. Like I said earlier we started our day very early. We arrived at Children's Hospital at about 6:15am. I feel like it went well today. His eye is still pretty swollen and it's hard to tell if the surgery did what it was supposed to. Fletcher has a follow up appointment Monday so we'll see. He sure was a trooper today I was so proud of him. The pictures below are the before and after shots I took this morning. Look at him in that little hospital gown! Such a sweet boy! Thank you all for praying we always know we can count on you all to pray for Fletcher and it means the world to us! Thanks!

A busy Saturday...

Today was a beautiful day in OKC! The temp was a wonderful 75 degrees. I spent the the first part of morning with Fletcher and then I went to a women's brunch at our pastors home. It was so nice to be with my sweet friends from church. After the brunch I went back to be with Fletcher. Since Craig went to the game the rest of us went to Mimi's to 'watch' the game. The weather was so beautiful we spent the rest of the afternoon outside. Here are a few pictures of my girls with their cousin Megan. All in all it was great day!

Here we go...

Thanks to everyone who commented or emailed about my last post. That post was written by a heart that was hurting. I have struggled a lot today about how I feel about how you all feel. Some have said I should educate those who have a hard time seeing Fletcher, others have been shocked like I was at the reaction we received yesterday. (Unfortunately, yesterday was not the first time we have encountered people like this) I KNOW I should take the higher ground and say sweet things to ignorant onlookers and hopefully I will. But on the other hand, why should I have to teach people that it's not polite to stare, didn't their mothers teach them that? Mine did. So, here are a few things I've thought about that I'd like to teach people, 1) Do not stare, instead smile. 2) Do not pity us, instead respect us. Fletcher is my child I love him as much as I love my other children, he's not different to me. I love my child just like you love your child. 3) Please feel free to ask me questions. As I'm sure it's obvious I love to talk about Fletcher, he's one of my favorite subjects, so I really don't mind when people ask me questions about him. But, think about the question before you ask it. An inappropriate question would be: 'WHAT HAPPENED TO HIM????' or 'WHAT'S WRONG WITH HIM??? and please do not say, 'Poor baby!!!' Please do not feel sorry for him. Fletcher is great! He's fun. We are thankful he is alive! An appropriate question would be, 'How old is he?' That is probably what I would ask you about your child. Then we can start a conversation and you can find out more about my son. 4) Please don't take this opportunity to be thankful that your child is NOT like Fletcher. Even though Fletcher has medical problems, doesn't mean we're not thankful for him. We wanted another child when we had Fletcher, he just happened to be a sick little guy. Again, we are thankful he is alive. We are thankful to be his parents, honored actually. I would like for you not to take your child for granted and enjoy every little thing, like a crying baby, oh how I miss the sound of Fletcher's voice. When they walk and are into everything, oh how I wish Fletcher was getting into everything. When they talk too much, oh how I wish I knew what Fletcher had to say. When they want to eat all the time, oh how I wish Fletcher enjoyed eating! Please know that I'm not trying to make anyone feel bad and I'm not being sarcastic in the things I'm saying in this post. I've obviously thought about this a lot today. I feel like I can't gripe about something if I'm not willing to offer a solution. So, here it is, please don't treat us any differently than you would anyone else. The Bible tells us, 'Do unto others as you would have them do unto you.' That's all I'm asking.

Fletcher's sweet heart...

Today Fletcher had an appointment with his cardiologist, Dr. Razook. He had an echocardiogram and an EKG. And Fletcher's heart is doing great! Praise the Lord! For some of my new blogging friends, Fletcher has IHSS (Idiopathic Hypertrophic Subaortic Stenosis) and on November 10, 2005 when he was just ten months old he had open heart surgery to repair the stenosis. The surgery was a success and literally saved his life. There is always a chance that the stenosis could come back so he has regular echo's and EKG's. Fletcher was a toot today at his appointment and Dr. Razook asked him, 'do you treat all doctors like this?' and I said, 'yep, pretty much!' Anyway, when we go to the doctor an EMT takes us in a handicap accessible van, drops Fletcher, an RT and me off at the appointment and when we call him he comes back for us. Today we had a bit of a wait after our appointment so we waited in the lobby. As we were waiting two little girls about 8 and 10 years old noticed Fletcher. So over they came and just stood there and stared at him. This is, of course, very annoying and heart wrenching all at the same time. Soon their mother came over and said, 'See, it's a baby. Don't worry I'm sure it's mother is used to people staring.' Unfortunately I said nothing hoping they would just go away. But they didn't. I wish I would have said, 'I will NEVER get used to people staring at my sweet son!' One of the sad things about this few minutes in our day is that Fletcher was extremely mad and it didn't help the staring and the asking of a million questions that we're being thrown in our faces. I'm guessing that when people see Fletcher they are shocked, they don't have any idea of 'what happened to him' they are afraid maybe (of a two and a half year old?) I don't know. I don't know how I want them to act or ask or look. Sometimes I just want to scream and say he's a baby please quit staring at him, he's a person just like you with feelings. Stop staring! I DO want people to look beyond his skin, beyond the tubing and wires and ventilator and see him. He's amazing, he's smart, he's funny! That few minutes made me forget the good report we had just gotten from the doctor. That few minutes dashed a lot of my hopes and dreams of Fletcher having a normal life. Sometimes I imagine that Fletcher will be able to breathe on his own and that he'll come home to live with us, that he'll go to the same school with Maddie and make friends and that things will be normal for all of us. That few minutes crushed that dream today. It made me ask a lot of questions that I don't and probably won't have answers until the time is right. All evening I've been telling myself, to be in today and trust Fletcher to Jesus. Only the Lord knows the plans He has for Fletcher. I have to hang on to that and know that the Lord loves Fletcher even more than I do.

One more thing before I close, Fletcher WILL have eye surgery on Monday, September 17th at 7:45 am. We'd greatly appreciate your prayers. Fletcher had this same eye surgery on October 18, 2006 and that surgery wasn't successful please pray that it will be this time. Thanks so much!

Feeding time...

As we all know feeding time hasn't been going so well. Last week I asked if I could try feeding Fletcher at a different time of day, thinking maybe too much is happening in the morning. So, today we fed him at noon and it went extremely well! Maddie fed Fletcher most of his food and he loved it! And she loved feeding him! Fletcher was so happy and he laughed and ate almost all of his food. What a great afternoon we had!

Fletcher still isn't back to his normal happy self but he seems better than he was. He's been to class the last two days and it's been pretty tough, today being better than yesterday. He starts out okay but by the time it's time for me to leave he's starting to get fussy and today they had to bag him two times. Anyway all that to say please continue to pray that things will get back to normal. I hate that he's having a hard time in class. Each day they sing songs and each child gets to pick which song they want to sing. The teacher will ask, 'who wants to go first' and Fletcher almost always raises his hand! I was able to get a picture of him raising his hand yesterday!

We've lost tooth number two!

Maddie has been wiggling one of her bottom teeth for a few days. Craig tried about four times today to pull it and it just wasn't ready. Well, right before bed Craig gave it one more try and sure enough Maddie has lost her second tooth! That was about an hour ago and she's still awake, too excited to sleep. Note to self, don't pull teeth right before bed! Maddie also wanted to call her cousin EmiLee to let her know she had 'another gone tooth'! Her words not mine!

Let's see...

It's been a busy day! Fletcher had a dentist appointment this morning so I arrived at the Center at about 8:15. When I got there they told me Fletcher and all his little buddies were moving to different units. Fletcher is now in Unit 7 right next to our friend, Andrew! Yea! Okay, so back to the dentist, Dr. King comes to the Center once a month to see TCC kids. Fletcher has about 3 loose teeth, yes, my two and a half year old son has several loose teeth! Dr. King said 'Fletcher's alveolar bone seems mobile.' Well, Fletcher was not really happy to be at the dentist and I was just trying to get him out of there before we had a situation on our hands, so I did not ask the appropriate questions. For instance, what the heck is an alveolar bone? And should it be mobile? Will his permanent teeth be mobile also? Are you kidding me? So, I talked with one of the nurse practitioners and she was clueless also and said she would look into it. So, we'll see. Dr. King said Fletcher's teeth are loose, but not about to fall out unless he gets hit or we tug on them. I told him we would stop hitting Fletcher. (j/k) I did tell Dr. King that I was NOT emotionally ready for Fletcher to loose his teeth, he said they would only pull them if he thought they were so loose that Fletcher might swallow one. You guys, I was not ready for Maddie to loose her first tooth and she's five! I keep telling myself, this is not about me. I really don't want him to be in danger, so if they have to come out so be it. Not my will, but Yours be done, right? Right! Here are a couple of pictures of Fletcher from today, during one of his 'good moments'. He's such a hoot!

Well, it looks like the 'EYE DRAMA' might be coming to an end. Fletcher will have surgery on September 17th at 7:45 am. Please pray with us that the doctors will have wisdom and this time the surgery will be a success, that it will open his sweet little eye. He deserves for his eye to be opened! I will also be praying, like I always do, that the people who come in contact with Fletcher that day will treat him like they would treat their own child with compassion, respect and dignity!

Kayleigh has had a busy week also. She had two test this week and feels like she knew the material and did well on each test. She is also very involved with the youth at church. Last week she went to a football game with a friend and had a blast. That was a hard one for Craig and me, letting her go and hang out with friends, but she's a good girl and we trust her. Tonight she is spending the night with one of her best friends.

Today at Maddie's school they had 'Hat Day' she paid a dollar and was able to wear a hat. Also, today she was able to hang out with her Aunt Kristi. Kristi was off today and offered to pick Maddie up from school so I could spend some time with Fletcher. It turned out to be great day for her to go with her aunt, seeing how busy today ended up being! Thank you, Kristi!

Where did that come from...

When Maddie was in PreK she experienced anxiety almost everyday when I would leave her. Since she started Kindergarten she has been such a big girl. She hugs and kisses me goodbye and then I leave. Until this morning, when I TRIED to leave she would not let go of me, she told me she didn't like Kindergarten and she said she wanted to stay with me. She had a complete meltdown! I had to leave her crying with her teacher. It was heart wrenching! When I picked her up she was perfectly fine, of course. I asked her what happened this morning and she said, "I think since I got to be with you all day for four days I just wanted to stay with you some more. I guess." Maddie just cracks me up sometimes!

Fletcher is still having some hard times. He is not desating, but he is having moments of being mad, irritable, sad (crying with real tears and a puffed out lip) and he has started hitting! My sweet baby boy is hitting! When he is in the middle of one of his 'moments' he will hit whoever is trying to soothe him. Craig and I were able to spend a lot of time with him this weekend and he was grumpy for most of the time we were there! Here are a few pictures of us trying to make Fletcher happy. As you can see it just didn't happen. I think he is going through withdrawal from the weaning of the Methadone and Valium. Craig and I would appreciate your prayers on behalf of Fletcher. We have gotten so used to the 'Happy Fletcher' and the way he's acting now reminds us of when he was little and very sick. That makes us really sad.