We have the pukies!!

Poor Lukester woke up at 1am today throwing up.....not keeping anything down. Throws up every few hours....Poor little guy!!! We need everyone well because we are leaving for Disney on Friday!!!

Nooooo more pukies!!!

If you see an explosion somewhere over North Alabama

It'll be coming from the proxemity of my house..............................

Mom can't take much more!

A PRAISE GOD UPDATE ON DEANA!!!!

WEDNESDAY, MARCH 04, 2009 08:34 AM, CST

Hello Family & Friends,

This is Deana posting. The doctors just came in and gave us the good news that the chemo seems to be working. My numbers are looking good and they are pleased w/ how things are progressing.

My parents left this morning to head back home to get the motor home. They have found a RV park nearby where they are going to come back and set up shop. We are talking to the boyz every morning & & every night. Tonight we are going to try and Skype w/ them w/ the help of Uncle Dennis.

It looks like I may be released as soon as Friday or Sat as out patient. We will wait and see what my numbers look like then. I may be out for about a week and then back in as an inpatient.I have been having some nausea so they give me some anti-nausea meds that make me real sleepy so that is why I am not on-line, or on the boards that often.

Jack is doing laundry today and then he has to take an IV class this afternoon to learn how to flush my line w/ Heparin while I am out patient so my IV does not clot. Will check in again closer to the weekend to let you know if I have been released or not.

Many, Many thanks for the prayers, cards, visits, goodies and posts of support here. They are working.

As Jack would say, hug your loved ones tight tonight.

xoxo~Deana

SURGERY DAY FOR SWEET YOUYOU!!! (UPDATED)

The first thing he said when he walked into the room was "This was a tough one." He gave us lots of details and here are a few.

The first "tough" part was that she had a fever of 101 after she was asleep. They will be keeping an eye on that over the next few days.

The other "tough" part was her developing a funny heart rhythm. They almost had to shock her heart. Right before they put the paddles on, her heart started beating normally. (Thank you for everyone that was praying for her during this unknown time...Praise the Lord!)

The VSD was very, very large. He was able to patch it and there is currently no leaking around the patch.

The cleft in the mitral valve was very peculiar. The tissue is normally very thick, but hers was very thin and this made things a little more difficult. He was able to stitch the cleft and it seems to be leaking less.

For some reason her tricuspid valve is now leaking a little more than it was before surgery. The head of cardiology looked at this and does not think it is because of the stitching around the VSD. It will need to be closely monitored.

They attached the wiring for the pacemaker. This was planned because children with L-transposition are at a higher risk for heart block.

She still has some bleeding that they will watch over the next couple of hours.
They had to give her a blood transfusion because she was anemic. (We knew there was a good chance of her needing a transfusion because she is so small.)

Lord willing, she will be waking up and off the ventilator around 5 tonight.

After the doctor was done giving us an update and answering questions, Aaron shook his hand and Erica gave him a hug. When he left we had a sweet time of prayer and thanksgiving. Thank you Lord for your loving care. We give You all the praise!

----------------------------------------------------------------

My dear friend Erica's daughter, YouYou (pronounced YOYO), is having her first open heart surgery this morning at Children's Hospital in Birmingham. Please keep them in your thoughts and prayers today. The surgery will last approximately 5 hours. Here is the link to YouYou's surgery blog. Please follow it and comment if you wish. They feel the prayers!!

I will update this post as details come in.......

YouYou in her "chariot"

YouYou just chillin' and waiting. Look at the way her little leg is crossed and her toe sticks out!! She is a prisspot for sure!!! I can't wait to get YouYou and Sydney together to play!!

Erica and I are in BIG trouble!!!

A Trip to the Circus

RINGLING BROTHERS BARNUM & BAILEY CIRCUS

ZING ~ ZANG ~ ZOOM

This was Sydney's first trip to the circus --- we went with Luke's pre-school. Mrs. Sharon got us some ROCKIN' SEATS!!! They were right up front!!!

We had a such good time!!

Syd was just fascinated by the goings on......but still wanted some snuggles!!!

This is Ivan......

He is a "REAL" circus clown. When asked if he'd take pics with us, he HAPPILY jumped the retainer wall and came up to our row!!!

Uhmmm, unfortunately, Sydney was NOT feeling it!!!

Neither was Luke - he wouldn't even go over to the guy!

Which one is the REAL CLOWN, again?

AJ thought it was too cool!!

Luke sat like this throughout most of the 2 1/2 hours!

The costume on the elephant and performer were BEAUTIFUL!!!

This big 'ol thing circled the arena as the National Anthem was played!


I wish we had a better shot of these flags - they were GORGEOUS!!!

Sydney kept pointing to things and saying ---

"THAT, LOOK, LOOK, MOMMA MOMMA!!!"

This guy was RIGHT above us on one of those weird wheels things.

AMAZING!!!

I JUST LOVE THE ELEPHANTS!!!

The horses were beautiful!! This one "bunny hopped" all the way out of the arena!

The cannons shot 2 areialists out onto 2 huge airbags!!!

On our way back to the car......we were ALL sooooo tired!!!

A HOPE-FILLED update on Deana....

Here is the latest from Jack ---

-------------------------

Dear family and friends,

Deana had a pretty good day yesterday, all things considered. We took her down to get out of that hospital room and she and her parents listened to a children's jazz band-of-sorts while I went back to the hotel to get showered up.

Deana's oncology team came in to reiterate the complex treatment facing Deana. At that time the doctors still didn't know exactly what treatment they wanted to pursue.

That has since changed! Deana begins her chemotherapy today. Today is a VERY big day for Deana. The doctors are going to try something DIFFERENT than what Scripps suggested, and this is giving us a lot of hope. Please keep Deana in your prayers today.

Deana's pain management is getting better too. Chronic pain doctors have spent a lot of time listening to Deana and have modified her pain medication. It's making a big difference.

Have a great day everyone,

Love Jack and Deana

DEANA NEEDS A MIRACLE

Here is the latest update on my dear friend Deana. This is what her hubby, Jack, posted on their Caring Bridge site.....please please pray for God's hand to be on this family. Pray for a miracle.

-------------------------------------------------------------

Deana and I met with her Lymphoma specialist today. The doctor agrees with Deana's previous doctor on the EPOCH chemotherapy protocol, and frankly shares his concern for its viability. The two previous protocols were much more promising.Clinical trials are most likely a not an option for us as Deana's central nervous system is under duress from Burkitt's and she has thus far endured a mixture of different chemo drugs. Most clinical trials are single drug trials.

STILL, we march forward! Deana and I will not give up hope, however slight our chances. We have decided to stay here in the hopes that the doctors see or experience something different that the Scripps team did not. We need your prayers, now more than ever.

Deana will be admitted tonight into the hospital as they begin more preliminary testing. Chemo won't start until this weekend. Right now it's focus on Deana's increasing pain and constant nausea.

We love you all and agreed now is as just as good a time as any to get this post out. We're devastated, but NOT beaten. We will not give up or in.

Our boys are being taken good care of and Deana's parents are working on travel arrangements to join us. Please keep them in your prayers as well. We love you Mom and Dad.

Love,

Jack and Deana