Surgery Day

Today was the day that Stephen had surgery to get a feeding tube put in. We were up at'em at 5am this morning packing getting ready to head to Duke.

  Of course, once we got to Duke we got to sit in the waiting room for about an hour before we were able to go into pre-op.  Once we got into pre-op, Stephen who was already exhausted from the morning got the sweetest nurse to help us get him ready for surgery.  

She was the best because she came prepared with bubbles and fun animal pens for us to entertain Stephen with while we waited for the doctors to tell us they were ready.  Stephen was in surgery for a total of about 45 minutes, start to finish.  The procedure itself only takes a few minutes to do. After surgery we headed back to recovery where he was just starting to come off an anesthesia. 

Recovery rooms are always so crowded and busy with people traveling in and out, we were hoping that we wouldn't be in recovery long and they would soon have a room for us- HA who were we kidding?!?  Almost 3 hours later, they had a room ready for us, Stephen was exhausted by this point and only wanted to sleep without disturbances.   Once we got all settled in the room, we got some fluids in him, got SpongeBob on the TV, and we were in business. 

His monitor

IV

Watching SpongeBob before dinner.

Overall, Stephen did great in surgery, he is having some pains so we are keeping him on medication to keep him comfortable.  He will be staying in the hospital tonight (with probably little to no sleep) and hopefully we will be released sometime tomorrow.  We will have a few days at home for him to recovery before we head back to start him on the ketogeneic diet next week.  

Thank you thank you thank you for all the sweet cards, emails, and messages.  We are so grateful for all the love, support and prayers we have been given- they have truly meant so much to us. 

Hopefully, tomorrow we will have pictures of us coming home! :)

Stephen come home! 

Julie's 29 again! :)

So as some of you know yesterday was Julie's birthday.  The kids and I wanted to do something fabulous for her and we came up with the idea to surprise her with a birthday party.  When she came home that afternoon, the house was completely transformed into birthday wonderland, she was shocked!

 SURPRISE! 

 Julie's mom, Nan Nan, even came in for the big celebration

Then we opened all her lovely gifts. 

We topped the night off with a dinner to Stephen and Lily Gray's favorite restaurant-Red Robin! 

We topped the night off with some yummy ice cream cake at home!

Happy Birthday Mom! We hope you had the best birthday ever!!!

HAPPY BIRTHDAY!!!

Today is the happiest of days!! We couldn't be more excited to say HAPPY BIRTHDAY to the BEST mama we know!!   

We are sending you all of our hugs and kisses today!! 

HAPPY BIRTHDAY MOM, WE LOVE YOU!!!!! 

*More to come later today, we just don't want to spoil the surprise! :) 

G-tubes, hospital stays and more

Hopefully ya'll were able to begin to wrap your head around the ketogenic diet process.  Along with this transition we have made the decision to get a feeding tube, g-tube, for Stephen. We came to this decision because on this diet he will need amply liquids, much more than we can sit and give him in a day.  This will be a great solution for us to be able to get liquids in him quickly when needed.  It will also provide us with a mean to get medicines in Stephen if he has a seizure so we aren't playing catch up the next day.  We are still planning on feeding Stephen by mouth and giving him liquids by mouth, the g-tube will just be for supplemental fluids when needed.  

The tube will go right into his stomach and be able to deposit liquids directly to him.

This is what the tube will look like and for the first few months he will have a tube sticking out of his side.  Once he has completely healed from this surgery, we will be able to get a button placed over the tube and he will no longer have to have the tube sticking out. 

Lily Gray refers to this as a balloon hole, thinking that once you open it, it will start to inflate like a balloon :)

So when is all this happening?

This Friday, July 22nd, we will go to Duke Hospital and have the surgery to get the g-tube placed. Stephen will be in the hospital till Saturday.  Then on Monday, July 25th we will go back to the hospital and stay for the week most likely, to start the ketogenic diet process.  During this week, we will be transitioning Stephen and monitoring his levels and also getting intense schooling on the diet.  

This is a big week for us! Oh yeah, and someone has a birthday tomorrow... :)

Keto 101

So as many of you know, we are about to begin the process of transitioning Stephen to the ketogenic diet in hopes to help control his seizures.  We are very excited and thankful that this is an option for us but we are also nervous because this is a HUGE undertaking and change. 


So what is the ketogenic diet?   
The diet is a high-fat, adequate-protein, low-carb and low-sugar diet (similar to the Adkins diet) that has seen great results in the improvement of seizures for kids whose seizures are not being controlled by medicine. 

Many of you know that Stephen currently lives off of carbs.  Most of Stephen's meals are composed of potatoes, noodles, rice etc. because they are easy to mash into a good consistence for Stephen to eat.  This is where the big change comes in! Once we take carbs out of Stephen's diet we will have to be creative in ways to make his food.  His portion sizes are also going to change dramatically. Currently, Stephen eats three times a day, just like everyone else- depending on when he is hungry and what we have going on that day. His typical meal I would say is the average size for a kid around 8-10 years old but that is all about to change.  The average meal size dramatically decreases on the diet because everything is so high in fat and protein. 

This is a sample meal consisting of 2 pieces of bacon, three cherry tomatoes, and 1 cucumber piece and the drink is a whipping cream and butter mixture.

Another big change for us with this diet is that we will have to measure everything out that Stephen is going to eat to the 100th milligram to ensure that he is eating the same amount of carbs. proteins, and fat ratio at each meal. He will continue to eat three times a day but they will be the same three times every day.  The object is to get his ketone level to stay completely level through out the day (similar to a diabetic trying to get their blood sugars level).

As if all of this didn't seem like enough to keep up with, there is also carbs in almost everything you put on or in your body. We have had to change toothpaste, sunscreen, lotions, shampoos, wipes, laundry soap...you name it we've probably had to change it! 

We are happy to make any and all of these changes if they help control Stephen's seizures.  We will be on the diet for a least 3 months to see if they help control things.  After three months if we haven't seen any improvement we can take him off the diet and start transitioning him back (fingers crossed it works though)  

We would love to eventually be able to cut down on medications!  

Please pray for us during this transition and pray that Stephen will do well on the diet and that we see improvement in his seizures.

Up Up and AWAY!!

Last week Stephen, Julie and I got the amazing opportunity to go up in a hot air balloon.  Lily Gray and Yogi were at the beach for the Flournoy family beach trip so they missed out but have no fear they will be around next year to join in on the fun.    


We got there early Monday morning because we wanted to beat the crowds and the heat, lucky for us no one else was there so we got to watch them set the balloon up. 

Getting the basket ready. 

Blowing the balloon up

Almost ready.

Stephen LOVED this part.  It was so awesome to be able to watch them set up the hot air balloon!

Stephen getting excited to go up! 

Almost ready. 

The balloon is up, we drew quite a crowd. 

This hot air balloon is the world's only handicap accessible balloon! Amazing!!

And we're up!

It was the perfect morning to go up in a hot air balloon

Stephen had the BEST time up there. 

We were so excited after we got down that we wanted to do it again the next morning. 

While Julie and Stephen loved every minute of being up in the balloon, it wasn't quite Danielle's thing.  She was a trooper though and made it all the way through. We have a video that we will post later this week of while we were up in the air! 

All in all it was an awesome experience. The man who owns the hot air balloon, called Serena's Song, has a special needs daughter, Serena, who also has severe CP.  Serena was non communicative and non verbal until the age of 2 when they had the opportunity to take her up in a hot air balloon, it was up in the balloon we she started to laugh and squeal for the first time.  Ever since then they have been traveling the US, giving other specials needs kids the same opportunity and experience.  Here is their website if you want to check it out. 

Hello hello anyone out there....

Ok so I know its been ummm....6 months since our last post. Somewhere between holidays, spring break, end of the year parties, Danielle going back to grad school and summer starting we haven't had the time to keep up with the blog but that all changes today.  We are officially back in business.  While I don't have anything exciting to tell you today, I can entice you with great pictures of Stephen, Mom and I riding in a hot air balloon this week.  It was such an amazing experience and as soon as I get my camera cable fixed, you all can see it! 


To do list for tomorrow:
  - Get a camera cable


Until then, be happy to know that we are back and excited to share with you all of our upcoming adventures. 


love. love. love.