Monday, April 27, 2009

If you listen very closely...

...Fletcher has something very important to say! Today for the first time ever Fletcher Burns verbalized on command while working with his speech therapist!!! I was able to get it on video you do have to listen very closely but you'll hear him say 'uh huh'. What strides this boy is making!! He's sitting up, rolling over and now using his voice! The Lord is so good to us and I'm so amazed at His goodness to our family, especially Fletcher! Hope you enjoy the videos, in case you're wondering what he's playing with it's his speaking valve.


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Tuesday, April 21, 2009

Three days...

This morning Fletcher started the first of three days of Pamidronate. I called to check on him at about 8:00 and he was kind of having a tough time. Not bad, but tough. The nurse gave him some motrin and he was on his way to sleepy town, so hopefully he'll rest this morning and feel much better. Would you all be praying for him for the next several days? They say that the Pamidronate is painful but nothing a little tylenol and motrin can't help. But still we don't want our boy to suffer, right?! :) I'd appreciate any and all prayers! You all are the best! What would I do without my prayer warriors? Leaving you with a video from last week. Man, I love this kid! :)


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Sunday, April 19, 2009

Roll over, roll over...

Today Fletcher Burns rolled from his tummy to his back!!! Watch this...



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Monday, April 13, 2009

Surgery update and Easter...

Late Thursday afternoon I received a phone call from TCC that Fletcher was scheduled for surgery the next morning to remove and replace the port. So, Friday morning as we were loading up Fletcher, much to our surprise, we found out the surgery would be at Baptist Hospital! As you well know that's our hospital of choice and there wouldn't be any residents poking on our boy. We were elated! As far as we can tell the surgery was successful. They put another port in him which was exactly what the Nurse Practitioner DIDN'T want. Tomorrow will be the true test. Fletcher has blood work on Tuesdays so they will use the port to get the blood needed instead of sticking him. If it draws blood then were good. If not, I don't know what we'll do. Anyway, Fletcher was quite a trooper as always! He loved riding in the van and before surgery some of our sweet friends from the PICU came to visit him. He really showed off for those girls. That's one thing about Fletcher, he LOVES pretty girls! He was quite cranky after we got back to TCC but who can blame him? Not me!


On our way to the hospital

Amy and Kristin our friends from upstairs

Tired and cranky

We started our Easter activities on Saturday afternoon by coloring a couple a dozen eggs. The Easter Bunny came and hid the eggs while we slept and Maddie woke up early to find them. We went to church where we had yet another egg hunt. The youth hid the eggs in the sanctuary because it rained all day on Sunday. After church we headed up to TCC to get our boy! He was super excited to see his sisters. It was so cute watching him wave and blow them kisses! Craig and I loaded him up in the van and we went home to get ready for all of our company! Craig's family came over to help us celebrate Easter. I also invited my family and quite a few of them came. We were happy to see my niece Samantha and her son Story and my brother Brett, they came in from Houston. My sister Kim and her kids Kaleb and Kylie. My mom, another niece Chevaun and her four kiddos and husband came too. A lot more people were invited but couldn't make it. Which was bittersweet, since it rained all day Sunday we were stuck inside and my little grey house will only hold so many people. We weren't able to have an egg hunt either. And I missed my other sisters and their families! There's always next year, right?

Craig and the girls coloring eggs

Maddie finding the eggs EB hid while she slept ;)

Here we are at church minus Fletcher

Silly Maddie waiting for the church egg hunt to begin

All three of our children in their Easter duds

One of the many attempts at all five of us

Maddie and her cousin Story they hit it off well

a few of the Milgrim grandkids

Wednesday, April 8, 2009

Postponed...

Fletcher's surgery scheduled for tomorrow has been postponed. We don't have a new date as of yet. The Nurse Practitioner spoke with the surgeon about the placement of the new line and he has decided that a Radiology Interventionist (RI) needs to be involved and there isn't one available tomorrow. One of the first Hickman Broviacs Fletcher had was done by an RI and it lasted for at least a year and a half. I've mentioned using an RI many times but have been told they don't do surgery. Hmmmm....sometimes mommies know stuff, just saying. So, I'll let you know when I know. Thanks!

Tuesday, April 7, 2009

To port or not to port...

...that is the question. Today we had our quarterly Patient Care Conference (PCC) for Fletcher. He's doing so well in so many areas of his therapies and education. He's gaining strength and wisdom! What a strong and smart boy we have. At the end of our conference this afternoon I asked if we should try to access the port and it was their professional opinion to leave it alone. This is his second unsuccessful port so they're going to ask the surgeon to put in a Hickman Broviac, which is what Fletcher has had the most success with. Where they'll place it? I do not know! We asked them to communicate with the surgeons BEFORE we get there. So, we'll see. Thursday morning we'll leave TCC at 5:30 am. I'm guessing surgery will be around 7:45 am. Please be praying for Fletcher's safety, the success of the surgery. This will be the fourth surgery he's had since late December. Thanks so much and I'll keep you posted.

Thursday, April 2, 2009

UGH!

Today was the first day to access Fletcher's port. And guess what? It doesn't work!!!!!! He is scheduled to have yet another surgery next Thursday. Seriously? I can't believe we can't get this thing together!!!!! However, one of my dear friends told me today that she's praying that this port will work and that it won't have to be replaced. So, tonight our little family decided to make that our prayer as well. I'm going to ask them to try again. If you're willing would you agree with us in prayer that this port will work? Thanks! So here's a fun little video from yesterday... In the last six months Fletcher has mastered the whole 'sticking his tongue out' thing. So cute!


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