Peace and Quiet!!

As you know, Lily Gray headed off to Camp Cheerio this week! We have missed her so much and can't wait for her to come back and tell us about all the awesome times she had a camp.  Stephen and I decided that while Lily Gray was gone, this was the perfect opportunity to kick Mom and Dad out of the house and have some Stephen and Danielle fun. 

Yesterday morning, we quickly said good-bye to Mom and Dad and headed off for a day full of adventure.  Our first stop didn't turn out as planned (more on that in a minute) so we headed over to the Science Museum for 'Meet the Animals.'  If you've never been, it's a live show, every day at 11 and 11:30, where they teach you about different animals and then you get to pet them.  It is always so interesting and tons of fun.  We were able to learn and touch a box turtle, a snake, a hedgehog and a blue tongued sleuth.  While we weren't able to snap any pictures with us and the animals (note to self: Meet the Animals is 100x more crowded in the summer!) we were able to get some pictures of our other favorite things we saw at the museum. 

We ran into this statue playing the guitar and explaning to us how they create coffee.  Stephen was diggin the music! 

 This was by FAR his favorite place though, the lime green snakes!  

YUCK!

Lastly, he loved this albino poison dart frog who was jumping all over the place. 

After the museum we came home, had some lunch and headed to the park with the dog.  Note to self: Bella and Stephen together at the park is a bad combination! 

Last night, we snuggled up and watched SpongeBob the Movie, we had such a great time staying up past bed time and being silly.

This morning we were up bright and early for round two of us trying to see our dear friend Walter.  We had tried to see him yesterday but he wasn't feeling it.  Some of you many know, Walter goes to church with us and is part of the 'in-crowd'; Walter also has CP so he lives at a healthcare facility in Raleigh.  Walter is stubborn and always gets his way (kinda like Stephen :)  It's Walter's way or the highway! Walter loves Stephen and loves when we bring Stephen up to visit him, they have a shared love of SpongeBob.  This morning, Stephen and Walter got to finger paint! While it was the sweetest things I have ever seen, Walter being 68 and Stephen 10, finger painting together Walter was insistent on NO pictures.  When we first told Walter what we were going to do, he was a little leery but we quickly won him over with a handful of chocolate bars.  Both of the boys did such a great job on their paintings, Walter asked if he could keep all of them in his room as decorations.  What a great way to start the morning.

Stephen and I have had such an awesome time being parent-free, the only thing that would have made it any better is if Lily Gray were here to have fun with us.  With that being said, we have decided that Mom and Dad you guys need to leave us alone for an entire week, we want to have the house to ourself and do fun things parent-free for a whole week, so look at your calendars and let's find the time!

Lily Gray goes to camp!

Today is a bittersweet day for us at the Flournoy house, Lily Gray headed to her first overnight week camp today!  While I know she will have the absolute BEST time at camp, we are sure gonna miss her around the house.  Before she left Lily Gray gave me a best friends necklace, she's got one half and I've got the other. 

My half (of course, she thought I should have the pink one) 

Lily Gray's half

Lily Gray, we miss you already but we are so excited to hear about all the wonderful fun things you did at camp!  Have a great week but don't have too much fun because we will want you to come back home! 

We love you LG!

Movies by Moonlight

Last night Lily Gray, two of her bestest friends Sophie and Aldyn Penn and I went to see Up! at Koko Booth's movies by moonlight; we had the best time!

 How precious is Ms. Aldyn Penn?

 Sweet Lily Gray

 Adorable Sophie Penn 

 We packed blankets and snacks and set up camp once we found the perfect spot to watch the movie

 Excited to see the movie

 Before the movie started, the girls we able to meet Muddy the Mudcat! They were so excited to meet this 'celebrity' (as they called him), they even got his autograph!! 

 There was a hula-hoop contest while we were waiting for the sun to go down and Lily Gray did a great job! 

 She ended up coming in second place out of about 100 kids! Go Lily Gray!! 

 Aldyn snacking on an airhead 

 They had a misting station for people to cool off, obviously these girls spent quite some time under the tent! 

We had such a great time watching the movie, thanks for coming with us girls! 

No news is good news

They say that 'no news is good news' and it couldn't ring more true in our situation right now.  Thankfully, Stephen has been adapting wonderfully to the diet since our brief hiccup last week and things seems to be on the right path.  We have learned to adjust to our 'new' normal and each day is getting a little easier.  Danielle finished up her summer semester of grad school yesterday, she took 23 grad hours in 10 weeks!  We are so excited that she is done and that she won't have to start back up till the spring semester!! 

Stephen went back to school this week, he loved seeing all of his teachers and friends again, they missed him greatly while we was out!  It was overwhelming, as you can imagine, for his teachers to learn his new routine, but they did a GREAT job with everything and jumping into things.  We are hoping that we will be able to get one more beach trip in this summer before we start back to school in the fall- we are still trying to process that Lily Gray will be going into the 3rd grade and Stephen will be in 5th grade!!! Where did the time go?!?

These last few days we have been having some fun getting use to all the new products around the house for Stephen, we learned the other day that his new shampoo has remarkable capabilities for holding cool hair-dos. :)

 Check out my sweet new do! 

 It looks even better when I flex my muscles with it! 

 This shampoo could provide us with hours of entertainment! 

 We had so many style options to choose from

 Of course, we had to do the typical alphalfa 

 Bella decided that she wanted in on the action in the tub too.

 He loved every minute of it

 Don't you know Lily Gray then had to test to shampoo in her hair

 Looks like it worked. 

The good and the not so good RECAP

These last few days have been a roller coaster, Danielle has finally finished 4 of her 6 grad school summer class so here is the promised update from the last couple of days! 

Stephen started the ketogenic diet on Monday and has done great with the diet since then.  We have been told by multiple doctors that we were being seen by at Duke that he was the best child they had seen adapt to the diet; he tolerated everything wonderfully.  We have had such a great outpouring of support and love that we appreciate so very much.  We have also had many questions about what exactly goes into preparing a meal for Stephen so here is a little synopses from the hospital. (which we have since learned was MUCH easier than at home!!)

His meals consist of a meat and a vegetable or fruit along with a host of fats that we add to the meal.

 We have our scale and measuring supplies out and ready calculate the percentages of each component of the meal he gets

We were given a list of about 15 recipes for Stephen to choose from and the exact gram amount that everything must be in (We have to be exact down to the 100th of a gram for the diet to be successful)

 Then we start the weighing process, we have to weight out each container, then set the weight to zero and then add the exact gram amounts of the foods. 

It can be quite tedious and time comsuming even when you have everything out and ready (We have since learned from coming home that this was nothing at the hospital, it is way more time consuming at home)

We then line everything up and try to figure out how we are going to mix everything for him to eat. The key is that he has to eat EVERY drop of food that we have measured out, no piece can fall or be left behind or else his carbohydrate/fat/protein ratio will be off.

 On top of all of that we still have to get all his seizure meds and now a slue of multivitamins and minerals also in him

He usually tops a meal off with a syringe full of cream. Another key element of the diet is that he must eat everything within a 30 minute time period or else his body will start metabolizing the foods at different rates.

Stephen has been such a tropper through this whole experience, just as happy as he can be! :)

 This was the precautionary IV that they put in just in case his blood sugar levels got too low when we started the diet (a common symptom for many kids)

His g-tube looks fantastic and has been healing wonderfully. He loves watching water go down his tube and playing with it. 

Stephen had some special visitors while we were at Duke who showered him with gifts, love and prayers.  Mom and the rest of the family have also been showered with love, support, and gifts at home that we are so grateful for. 

 We had the most wonderful teams of doctors who watched after Stephen during our stay, he was monitored by neurology, GI specialist, general peds teams and his dietitian.  They were all so great with Stephen and getting his diet started, we couldn't have asked for better teams! 

And we were able to head home a day early from the hospital because Stephen was doing so great on the diet!! :) 

Like I said, Stephen did great while we were at the hospital and we are so thankful that he tolerated the start of the diet well. Coming home has been quite a reality check, taking care of Stephen, managing his meals, medications, water intake and blood test has turned into a full time job for both Julie and Danielle.  Just to give you a glimpse of what we have to do, Stephen has to be given 240cc of filter water every 2 hours through his g-tube, we have to test for ketones in his urine multiple times a day, we have to test his blood for glucose levels and ketones once a day, along with changing his entire diet and measuring out all his foods precisely- it is overwhelming to say the least! 

Unfortunately today Stephen hasn't been doing as wonderfully as he has been. Stephen hasn't been able to keep down foods or liquids for most of the day.  We are concerned about possible diet complications (him being in severe ketosis) which we think we have ruled out, complications with his g-tube, shunt failures or hopefully just a virus.  We have been in constant contact with all of his doctors and specialist at Duke and we will continue to monitor him overnight. Pray that he will start taking fluids again and that this won't be a complication that ends us up back in the hospital. 

Please continue to pray for patience and guidance and that we get adjusted to our 'new' normal on this diet

Pray that Stephen will continue to be healthy and thrive on this diet

Pray that today was just a sick day for Stephen and he will be back to his sweet self tomorrow. 

Lily Gray's Great Adventure

Lily Gray has had a wonderful week in the moutanins with the Clarke family, she has been having so much fun with Emma Kate and Redding that I'm not sure she's going to want to come home. Here are some of the highlights of her week. 

She got to go to tennis camp this week which she absolutely loved! 

The kids got to go tubing down the river and play in the river twice this week.

They had smores night where they roasted GIANT marshmallows and had a great time!

 Lily Gray and Vandy (the Clarke's sweet dog) sitting on the couch talking to Mommy on the phone

The girls on their way home from the mountains!

Lily Gray we are so glad that you have had such a fun week with the Clarke family and we can't thank them enough for letting you go but we are so excited for you to be home with us! WE MISSED YOU!! SEE YOU SOON!! :)

We're home but need prayers

We have been so busy these last few days with learning everything and getting into a "new" normal.  We are so happy and thankful that Stephen was able to come home yesterday afternoon!  I've got a post and tons of pictures from our time at the hospital but for right now the thing we are asking for is prayers.  Stephen is having a little bit of difficulty at home adjusting to the diet and it is a 24 hour job for both Julie and Danielle to manage everything...

Please pray for patience and guidance and also for Stephen to remain healthy.  

Day 1 of the ketogenic diet

Today was the big day- Day 1 of the ketogenic diet!  We are excited, overwhelmed, nervous, grateful and hopeful that this diet will be the answer to all of our prayers.  Before we get into everything with Stephen, Lily Gray is having an adventure of her own this week.  Lily Gray went to spend the week up in the Blue Ridge Mountains with the Clarke family, yesterday Julie and Lily Gray headed up there and today was Lily Gray's first day of tennis camp in the mountains.   

Here is Lily Gray and Emma Kate with their tennis instructors.

They also headed down to a lake today and saw these sweet baby swans with their mother.

And of course a Blue Ridge must is Kiliwins Ice Cream- YUM!! I hope you girls had a scoop for us! :)

Lily Gray we miss you terribly and are so happy that you are having such a great time, you haven't missed much being gone, this is what we did today....

When we got the call mid-morning that a bed was ready for us we packed up and headed straight to Duke. Stephen was just as excited as we were to start this whole process. 

Once we got to Duke and got settled in, we had a fairly quite afternoon.  We have the most wonderful team of doctors looking over us, who have checked in on us multiple times already (I know!!) We spent most of the afternoon watching TV and playing games on the Ipad. 

This is Stephen's favorite game! 

Once dinner time rolled around that is when all the action started, the dietitian came in to get us started on the diet, the IV team came in to put Stephen's IV in, and they came to collect blood all at the same time. There definitely isn't enough room for everyone in our tiny hospital room.  We got an IV in and blood drawn quick and easy, thanks to the peds IV team!  Tonight for dinner we had applesauce and bologna (for the first time). He did great with his first "ketogenic" meal!  We have started tracking his blood levels, every four hours, we get a lovely finger prick, along with giving Stephen 240 cc of water every 4 hours.  He seems to be tolerating everything great so far, we are looking forward to a peaceful night in the hospital (HA, is there such a thing?!?)

We wanted to say a very special thank you to whoever left us the yummy chicken, mushroom and pasta meal along with the beautiful gladiolus!   Thank you thank you thank you whoever you are!