Friday, August 31, 2007
Thursday, August 30, 2007
Wednesday, August 29, 2007
Tuesday, August 28, 2007
This morning I feed Fletcher and he did better. It seems as if each day our feeding time gets a little better. Thanks you, Jesus! He also went to school today. He seemed to enjoy being with his little friends and especially his teachers. After our shopping trip Maddie and I went to see Bubba. He was sleepy! Fletcher and Maddie enjoy each other so much I just love to watch them together. Lately Fletcher has been extremely itchy so each day Maddie has made it her job to give him a 'massage' she gets his lotion out and just rubs his head. He loves it! She's also quite efficient when it comes to suctioning his nose! It's sweet and hilarious all at the same time!
Well, the EYE DRAMA continues...today when I got to the Center I was told that all of Fletcher's paper work at the doctors office and the insurance says that it's his left eye that needs surgery. Guess what? It's his right eye, it's ALWAYS been his right eye. So, now all the paper work has to be changed. So, who knows when we'll have surgery. Please join us as we pray for some kind of resolution to this complete and utter stupidity. Sigh...
Monday, August 27, 2007
Eye surgery update: Saturday I received the referral for Fletcher's eye surgery. Great right? No, not so great. Insurance is an enigma to me. First of all, I'm really not in charge of Fletcher's medical happenings (i.e. booking appointments, setting up transportation, etc) so me having the referral on a SATURDAY with an effective date of 8/30/07 and an expiration date of 8/30/07 (no, it's not a typo, you read it correctly! UGH!) doesn't really do anyone much good! So, today I talked with the TCC lady who does handle appointments and she was clueless about what was happening. And on top of it all the person who books appointments for the surgery at Dr. Hildrebrand's office is off and has been since last week. Guess what? It only gets worse. The TCC lady calls the insurance company and they say it's not a typo that is the day of the surgery! Since when has an insurance company booked a surgery for a doctors office? Did they also call Children's Hospital and book an OR? Guess what? They didn't do any of these things! So, who knows? He might be having surgery Thursday. Tune in next time as the EYE DRAMA continues! Obviously I'm a little frustrated and would truly appreciate your prayers. As I always say, we've been trying to get his eye fixed literally since he was born. It just seems so crazy to me.
Oh, yes I do have two other children, right? Friday night Kayleigh went to a lock in at church. She had a blast. She invited her cousins and they stayed up ALL night playing games and hanging out! Boy was Kayleigh tired when I picked her up on Saturday. At one point on the way home I was talking to her and I looked over at her and she was asleep! Good times! Tonight Craig and I went to Open House at Kayleigh's school. She seems to have some really nice teachers this year.
Maddie is enjoying Kindergarten so far. She isn't experiencing any anxiety when I leave her at school and she is tired and hungry when I pick her up. Today we ate lunch at 11:00 am! We usually go home for lunch and then head up to see Fletcher, because as soon as RSV season starts in October gone are the days of her being able to go up there with me. Tomorrow night Maddie starts tap and ballet again. We have been off since last May, she's pretty excited to get started again. I'll post some pictures tomorrow of her in her new leotard, which is blue this time. I still haven't purchased her tap shoes and ballet slippers we'll do that tomorrow after school. Need to go for now! Thanks for dropping by!
Thursday, August 23, 2007
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!
Wednesday, August 22, 2007
Thursday, August 16, 2007
Before the performance...
During the performance...
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'
Wednesday, August 15, 2007
Sunday, August 12, 2007
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!
Friday, August 10, 2007
Wednesday, August 1, 2007
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!