A New Day...

I would like to thank all of you for the sweet emails and encouraging comments. Please know I am better today. I went to the Center this morning as always and Fletcher was NOT having his tube feeding, praise the Lord! So, I got him dressed and held him for a few minutes and then put him in his wheelchair to feed him. As we all know, he's not a big fan of 'the chair' so he wasn't too happy with me putting him that thing. I decided to use a little tough love in hopes that he'd just power through it. He really didn't enjoy eating and I feel like something is wrong. This week has been a big week for him. Remember last week when they made some vent changes? Well, they made a few more this week. Also, he has a new PCP (primary care physican) Dr. Khichi. Dr. Khichi is one of PICU doctors at Baptist and he knows Fletcher VERY well. Dr. Khichi has taken over all the vent patients at TCC. Craig and I are very happy to have him taking care of Fletcher. We know he will be aggressive in vent and med weaning. Anyway, Fletcher is also being weaned off of Methadone and Valuim. So, let's think this through: serious vent changes, PO feedings and we're weaning some pretty hardcore meds. That's a lot to deal with, don't you think? I do. Tomorrow I am going to The Center at 8:15 am and I'm going to try and feed him one more time. Fletcher's speech therapist will be there so hopefully we can come up with something. I feel like I'm asking too much of him right now. Please continue to pray that we'll have wisdom on how best to help him. When Craig was with Fletcher tonight he said Fletcher's the worst he's seen him in a while. So, if Craig is worried, I'm worried!

Last week was the Treble Makers concert and News 9 was there to do a story on a little girl who had been a patient there. The story aired today, if you missed it you can click on the link below and see the story. They did a really nice job with it. Channel 9 News Coverage Okay,when you see someone you know, please realize she didn't have fair warning that she was going to be on the news! Because trust me, if she knew she would have looked a lot better than she did! :)

Okay, one more thing. I have a sweet mom friend at The Center and she has a little boy named Andrew. Andrew is going to go home for a day trip tomorrow. He is eight months old and hasn't ever been to his family home. After he was born he went straight to the NICU and then when he was about three months old he came to TCC. One reason I love you all so much is because I know you pray for me. I'd like to ask you all to pray for sweet Andrew and his family tomorrow. It's their first trip home so Catherine and Eric are feeling a little anxious but all at the same time they are extremely excited. Would you all please pray that their trip would go smoothly and it would just be a sweet time at home for them all under the same roof. If you'd like to see pictures of Andrew and read all about him click here. Thanks so much!

First feeding, kind of...

Yesterday we started on the road to feeding Fletcher by mouth once a day five days a week. He is officially a part of the 'feeding program' at TCC. The picture below is a picture of his first food tray. The cafeteria will bring a tray very similar to this one every morning for his 9:00 am feeding. I will say that it hasn't gone off without a few 'people problems'. Like I said earlier we started the feeding program on Tuesday, he wasn't 'supposed' to get his normal tube feeding until after I fed him orally (aka PO), well when I got there yesterday he was having his normal 9:00 am feeding! UGH! I did feed him a little bit, it was more for me than for him. Of course, I complained and everyone was very sorry and now there are signs everywhere that tell them to hold his 9:00 am tube feeding. Today when I arrived at 8:50 am again Fletcher was having his 9:00 am tube feeding, when I saw this I will say I lost my cool and I said rather loudly, 'Why is he eating?' Have you seen the commercial about using your debit card and how it makes things go smoother and faster and then there's the lame person who has the audacity to pay cash for something and everything comes to a screeching halt? Well, that's what happened today when I kind of yelled, 'Why is he eating?' Everything and everybody came to a standstill and just stared at me. Again, UGH! If my sweet husband or Kayleigh had been there they would have left the building out of sheer embarrassment. I did feed Fletcher a little bit today but it didn't really seem enjoyable to him. I will admit I was very discouraged this morning. I have been looking forward to feeding him and it is not going at all like I thought it would. I spoke with Fletcher's speech therapist today and questioned if it's a good idea to orally feed him, maybe he's not ready. She encouraged me not to give up and give it a little more time. So, we'll see. As I type this I am in tears I can't express how sad I am feeling over all of this. It is, of course, compounded by a realization I had a few weeks ago. One day someone asked me how old Fletcher was and I told them two and a half and then it donned on me that in December he'll be three! And then I began to focus on the fact that my toddler isn't toddling. I began to focus on all the things he can't do. It's sad I know, but I'm just being really honest here. I've been struggling with this for weeks now. The other day I was in my van all by myself and I was having some prayer time and I began to weep to the Lord about all this and tell Him of my hurts and my unmet expectations. I listed a few things very specifically: I had dreamed of taking Fletcher to school everyday, I dreamed of him playing with Maddie and enjoying his family. Well, guess what the Lord reminded me of? I DO take Fletcher to school everyday it's just not Will Rogers Elementary and Fletcher DOES play with Maddie and he definitely ENJOYS his family. I will say I'm still struggling, but when I do I'm trying to remember all the positive things that have happened with my sweet boy and how much I enjoy being with him. I would definitely covet your prayers for the struggles I'm having and for us to have wisdom when it comes to feeding Fletcher. I want him to enjoy eating. I don't want it to cause any health issues for him just because I have a maternal need to feed him. Thanks.

Treble Makers Concert

Today Fletcher participated in the 2nd Annual Treble Makers concert at TCC. The theme of the program celebrated Oklahoma's centennial. Fletcher and a little girl in his class played the drums (sort of) to 'I've Been Working on the Railroad.' He started out happy but after too long of a wait in his wheelchair he got grumpy! After his performance Craig took back to his unit and when I went to check on him he was out like a light!

Before the performance...

During the performance...

and after!

Yesterday one of Fletcher's doctors made some changes to his ventilator, meaning he is having to work a little harder to breathe. The changes are very small attempts to weaning him off the vent but, we have to start somewhere! Hopefully he'll be able to handle these changes and we'll continue to work on him getting off the ventilator. I believe that's why he was so tired and grumpy this afternoon. Breathing is hard work!

This morning I was able to feed Fletcher! Oh how sweet that was for me! He did pretty well. I think he enjoyed it as much as I did! Fletcher ate some carrots, fruit and some kind of meat, all baby food, of course. He really liked the carrots. Since his swallow study I have been cleared to feed him once a day until we see how he tolerates eating. I'm there every morning so I'll be feeding him each day before he goes to school. Sounds kind of normal, huh?!

eating carrots, I think...

signing the word 'eat'

Back to school

Today Kayleigh started the eighth grade and Maddie started kindergarten. Kayleigh told me she was thought today went better than she thought it would. She's been worried because she is on a team without any of her 'old' friends. Craig and I tried to encourage her that this could be the year of the new best friend, the friend she's always wanted. Sounds like it went well today for her and that this is going to a fabulous last year in middle school! I'm sure she'll make the best of it! When I picked Maddie up after school I asked her how her day was she said, "It was okay, kind of boring, though. I don't know why they have all those toys if they won't let you play with them." I assured her that there would be plenty of time to play with all those toys! Right now Kayleigh is watching TV and relaxing after a long day and Maddie is still napping. Hopefully we're off to a good start with getting back into the whole school routine. Aren't these girls gorgeous?

It happened!

Last night Maddie came into our bedroom saying her tooth was loose. I've heard this story before so I didn't get too excited. Well, when I looked at her tooth sure enough, it was loose! I began to cry, of course. My baby daughter is growing up, her first loose tooth! We both went through quite a few emotions. At first she was excited, then she noticed a little blood, so the tears began to flow, then she was worried it was going to hurt and then she decided she didn't want to lose her teeth! Craig was at the movies with his dad so we waited until he came home so he could see the loose tooth. Maddie was once again excited, but decided she did NOT want daddy to pull her tooth, he agreed. This morning she woke up excited that she hadn't swallowed her tooth in her sleep. We went to church and everyone now knew she had her first loose tooth! Tonight we went to Mimi & Papa's for burgers, Maddie was playing outside with her cousin and came in to say her tooth hurt. She showed Craig and asked him to pull it and he did! Oh, what a joy to lose your first tooth!

Maddie's first loose tooth

Look it's gone!

Last week was very busy, we had VBS at church every night. Our whole family was involved. I taught the Bible Challenge rotation which was a lot of fun, Kayleigh made her acting debut along with her cousin Megan, at the Bible Story rotation, Maddie of course was one of the many kids we were able to minister to and Craig showed up each night to help in any way he was needed. He was also a great chauffeur! Maddie invited her friend Lauren and we picked her up each night. They had a blast together. It was a fun experience for our whole family.

Kayleigh & Megan at VBS

Maddie also had another first this week. She had her friend Lauren spend the night. WOW! That was interesting. I made a palette for the girls on the floor in Maddie's room and they laid down at about 9:30pm at 11:15pm I went to check on them and they were still talking! I had to lay down on Maddie's bed until they fell asleep! And at 6:45am the were standing beside our bed staring at me! Again, WOW! All in all it was lots of fun.

Maddie & Lauren spend the night buddies!

Fletcher had a dysphagiagram (swallow functioning test) at Baptist Hospital on Thursday. When we began feeding him by mouth last October we always put his speaking valve on. He's not a big fan of the speaking valve, he tolerates it but he doesn't like it. Anyway his speech therapist wanted to see how he swallowed without the speaking valve and he did okay. We will not be able to give him thin liquids like apple juice because that came out his trach, not good. He did have a few problems swallowing and now his speech therapist will talk with Fletcher's doctor and the nutritionist at TCC. In all honesty, it was disappointing to me. I mean really, why does this have to be so hard? All I want is to be able to feed my baby some baby food. I do want to do what's best for him. And I'm sure it will be worth the wait. The best part of this trip to Baptist was that we were able to go up to the PICU and see our sweet friends there! Fletcher showed off for them and boy were they impressed! These are the very nurses and RT's that saw Fletcher at his worst and they helped nurse him to health. I'm sure it does their hearts good to see how far he's come from being a 7 lb, malnourished, failure to thrive, intubated little mess to a 21lb, smart as a whip 21/2 year old!

My sweet boy!

I'm sure there is a lot more to tell you but it's getting late. I'll blog again soon!

Here's a Little Funny

This doesn't happen every night at our house, but when it does this song is soooo appropriate!

Kayleigh's Home

Last Friday Kayleigh came home from Mississippi and her long time friend Marley came with her. What a blessing to have Kayleigh home. She and Marley went on a 'mini mission trip' with the youth from our church. They were able to help clean up an abandoned house, they also went door to door collecting canned goods. On Saturday they spent the night at the church and didn't come home until 6 pm Sunday. Sunday afternoon they went to my sweet friend, Carol's parents house and helped them pack and clean up for Carol's family's big move to Tulsa. They had a great time and learned a lot. And they realized how much they have to be thankful! On Monday Kayleigh and her grandparents, Monna and Pops took Marley down to the Oklahoma City Memorial Museum, then we went to dinner and then back to Bricktown for a canal ride. And of course we had to take Marley to Braum's for the best ice cream ever! What a great time we had! Monna, Pops and Marley left early on Tuesday morning we miss them already! Hopefully Marley can come again she was a joy to have around and Kayleigh really had lots of fun with her!

Kayleigh and Marley - 'the blondes'

As you can see, things have been quite busy around here. Last night was the premiere of 'Bourne Ultimatium' the new Matt Damon movie. It was here in OKC and along with it was a fundraiser for TCC. I believe they had a dinner and then everyone went to the premiere. The tickets were $150.00. They raised nearly $200,000.00 to benefit the children at the Center. Isn't that awesome? The Children's Center also made a trailer that was shown before the movie and guess who made their debut? You got it. Fletcher Burns and his mommy! Even though we weren't at the premiere ourselves we still got to be a part of something rather cool!