12.23.2013

Yay!

We're on the way to some Christmas festivities but I wanted to do a quick little update.  First if all, thank you so much for all of your prayers for our boy!! Y'all are awesome!

Today went well.  Derrick looked and sounded good and there's NO FLUID!! Yay!! That means he's free of yucky chyle and he can eat and continue I to heal and grow! 

 Speaking of growing....

It was so awesome to clean out the fridge and get rid of these yucky things!



Derrick is up four pounds and 1.25 inches since his post op check up in the middle of October!  What!?  That's HUGE growth for Derrick.  Huge!


His sats were at 92 today.  We haven't been checking them at home at all, so I have no idea where he's been since our last appointment.  92 isn't bad, it's actually very normal for a fenestrated Fontan, but he was at 96-ish the last two times we were there and we were thinking the fenestration may be closed.  We're thinking now maybe not.  That isn't an issue at all, it's very normal, but I have to admit I had an ick feeling after that.  Felt a little let down, which I know is silly.  They couldn't see his fenestrstion on the echo today, but couldn't see it on the discharge echo at the hospital either, probably because of his funky placement in that wild little heart of his.  

Anyway, all went well and we celebrated by letting him spend his doughnut money at Krispy Kreme!   D's friends know how much he loves KK, so thank you Ms Beth and Jack!!  They both sent him doughnut money while he was in the hospital and he loved spending it today!! :). Thanks y'all!!





We also stopped to see Santa but those pics are in the big camera so they'll come eventually.  

Thank y'all SO much for praying for our boy!!!!  

Merry Christmas!! :)

12.22.2013

A Prayer Request!

I know I've been a little MIA lately, but just know that from us, no news is good news!  😃

We've thoroughly enjoyed the last two weeks of not counting fat grams and eating like normal people.  Ok, maybe way too much, but that's neither here nor there.  Tomorrow is a big day, and once again, I would really appreciate your prayers for my boy. 

Tomorrow he has his cardiologist follow-up.  He'll have a chest X-ray to make sure his chylothorax has healed.  Please pray that he gets the "all clear!" to continue to eat normally!  We've seen a great improvement in his appetite and desire to eat since having surgery and I can't stand the thought of limiting his foods again.  It broke my heart when he told me, "Mommy, it isn't fair that you won't let me have fat."  I desperately don't want to do that again.  We can do it if we have to, but what a wonderful Christmas gift it would be to be released from all worries of all that is the Fontan...the anticipation and the aftermath.  

Thank you, friends, for praying for our boy!!  Just knowing that he has extra prayers gives us a level of comfort that I can't explain.  

We had dinner tomoght at Lizards Thicket...you know, just in case.  😉



11.26.2013

A Reason to Celebrate and a Prayer Request

It's November 26th!

It's finally here!

We're six weeks post last chest tube pull!

Derrick can have some FAT!!  

Woo hoo!!

Seriously, I never thought I'd be so happy to give this boy some fatty food again.  We're taking it slow, only one "regular" meal a day for the first week, but it feels good to be able to cook a real meal for my family!  Although when we asked Derrick what his first meal was going to be he said, "Chick-fil-a!  With dip and TEN chicken nuggets!"  So I didn't have to cook after all. The boy requested CFA so that's what we had.  
 And he got TEN nuggets and Chick-fil-a sauce. 

He only ate 6, but having 10 on his plate made him a happy boy!  I don't think he's ever eaten six in his life so that was a win! :) 

These last almost eight weeks have been so against everything we've ever done as far as feeding Derrick.  He's had butter slathered on everything possible for the past four years.  We've offered him bites of everything we've eaten since he started eating real food, so this was a real adjustment for our whole family, grandparents included.  I've been on edge about every bite that's gone into his mouth and almost every morsel of food he's eaten has gone into My Fitness Pal so it could be counted.  We stayed well below the allotted 12 grams of fat per day just to be safe.  

He walked in the kitchen the other day as I was cooking dinner and said, "Mommy, it's not fair that you won't let me have fat."  Broke. My. Heart.  He really has done so well with this.  He's way more understanding and cooperative than I think many four year olds would be.  I guess he just knows.  But even my mature little guy had issues with it every now and then.

BUT...we're taking baby steps back into the real world of FOOD!!  We're stoked!! 

As excited as we are about normal food, I'm so paranoid about this.   There's no way for us to know if he's completely healed or if he's still leaking chylus fluid without a chest x-ray.  If we do notice anything it will be that he's having trouble breathing, which will probably mean there's a good bit of fluid which of course would be bad.  We go back the week of Christmas for a check up and an x-ray, which gives him time to be back to a full fat diet.  

Please, please pray that he's healed!  I would SO appreciate it, and so would he!  

Actually, the whole family would because I can promise you, Derrick isn't the only one who's missed Chick-fil-a sauce!



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11.19.2013

30 Days of Thankfulness :: Days 18 & 19 :: Self Defense & Kiddie Accomplishments

30 Days of Thankfulness :: Day 18 :: Self Defense

My friend Shannon recently got certified to teach a women's self defense course called SASS, and she invited a whole bunch of her girlfriends together to be her first class.  All of the maneuvers are built around the strength and movement of the female body, and are highly effective.   The local police women, SWAT team, and State Trooper women have all gone through SASS, so it's pretty serious!  The class was awesome, she was awesome!  I never would have pictured this sweet, cute, southern girl to be so fierce!  It was empowering to be there.  It was eye opening, and honestly kind of scary to think about all of the different ways in which a woman can be attacked.    I need to be practicing on Justin!  Pretend, of course.  :)  Shannon, I'm so thankful you asked me to be a part of this class and am grateful for the knowledge and power you've given me! :)  

(No pic for this one...we were kicking booty, no time for pics!)

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30 Days of Thankfulness :: Day 19 :: Kiddie Accomplishments

We enjoyed soaking up some vitamin D today while never getting out of our pj's.  :)  My girl has very recently learned to pedal her bike!  She had absolutely no interest in it what so ever until we cleaned out the garage.  Once the kids had room to ride around "by themselves" while I cooked dinner, she decided she was ready...right after we put her "big bike" away because she had absolutely no interest in it.  Now she's always asking to go ride and is so proud of herself!  I love it.    And all of the credit goes to Bubba for teaching her.  Even sweeter!

And Derrick, with his self proclaimed obsession with Spider Man, has decided he's ready to climb trees.  We had to walk around the yard looking for a tree for him to climb.  I have no doubt that he'll be climbing trees with no low branches very soon.  After all, he is a super hero waiting to get his powers.  He's asked me countless times in the last week when he will get his powers...maybe tree climbing will be included.  And shoes just get in the way in case you were wondering.  What he doesn't realize is that he is a super hero, just not in a way he realizes. 
I love being able to watch these babies grow!!

11.17.2013

30 Days of Thankfulness :: Days 16 & 17

30 Days of Thankfulness :: Day 16 :: Family Time

We had a fun Saturday morning.  Since the kids wake up so doggone early now, by about 9am we're looking for something to do.  We decided to see what treasures we could find at the thrift store (I seriously love that place!!).  I didn't find anything I just had to have, but JK found a baby doll pack-n-play, D got a Spider-Man, and Justin got some organizers for his tools.  For a total of $5.50 I'd say it was a successful trip!  

After that we went to the library.  It was the first time we've been to the library since before surgery, and the first time Justin has been with us in a really long time, so it was a fun trip.  

They love to sit and preview their books before checking them out.

JK was very happy that she found a good book and that it was her turn to check out a movie.  My poor girl knows all kinds of super heroes, ninja turtles, and monster trucks, but she doesn't know much about the princesses at all!  Tinkerbell was definitely a hit for her first girlie movie. :)

D was stoked that he found a Spider-Man book.  We had already read it three times before we'd had it three hours.  A winner for sure!
After that we stopped at the Wired Goat for a peppermint mocha and an eggnog latte.  For sure a perfect way to end our fun little morning out and about.  :) 


30 Days of Thankfulness :: Day 17:: Game time

Some good board game time with the fam is good for the soul.  As much as I don't like my babies growing up so quickly, it sure is fun now that they can play some real games! Well...maybe not Jenny Kate so much yet, but she tries....sort of.  :)

11.15.2013

30 Days of Thankfulness :: Day 15 :: Being in the Kitchen

I love to cook. I hate to clean the kitchen, but I really do love to cook. This past month has been a bit of a challenge considering Derrick's uber low fat diet (12 grams of fat per day), but I've been determined not to go the fat-free mystery meat route all the time.

Tonight we had stuffed shells with pumpkin cream sauce that had less than 1 gram of fat per (Derrick sized) serving.  It actually tasted really good!  I have a list of recipes to share in hopes that they'll help the next chylous victim, but I need to write up the changes I've made to the recipes first.

Anyway, the second half of my day always seems to be spent in the kitchen, and I sure love it when my family joins me. Even if it is to count down the minutes until dinner comes out of the oven.  :) 

Tonight for dessert we made pumpkin muffins.  This is a "recipe" I've used for years.  It's seriously the easiest muffin recipe there ever was.  Whoever came up with it was genius!  All you need is a box of spice cake mix and a can of pure pumpkin.  Mix together and bake until a toothpick comes out clean.  Easy and SO good!!  We've made these at least five times in the last month and everyone who tastes them loves them!  Including Mr Uber Low Fat himself.  He begs for them!

The awesome thing is, if you put them in mini-muffin liners they're just under 1 gram of fat and 52 calories each.  I have been known to whip up some fat free icing to slather on these and take a couple of them to a birthday party so my boy could have cupcakes like the rest of his friends.  They're awesome...you totally need to try them.  But they're addictive, so consider yourself warned.  (And as a side note...they come out the exact way they go in, so if you put the batter in the liner with a spoon and it looks all spiky and lumpy, that's how they'll look when they're done.  I use a ziplock bag and pipe the batter into the liner so they'll look smoother.  Not that it really matters, but it matters to me.  :)

They're so easy, in fact, that D and JK made them themselves.  Well, sort of. 

They're equally as good raw as they are cooked.  And there are no eggs, so it's just fine to lick the  beater!

I must admit that I'm so ready to have some butter and red meat, but this whole low fat/ fat free thing has been a challenge I've tried to embrace.  I'm just thankful to have a kitchen to practice in and willing mouths to to test the sometimes interesting concoctions. 

And PS, if you think you lose weight on a fat free diet, I'm very sorry to burst your bubble....NOT true!  We are all four living proof of that one! ;)


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11.14.2013

30 Days of Thankfulness :: Day 14 :: Generous People

Back in August I was invited to speak at the W.I.R.E. meeting for the Newberry Electric Coop about Hope for BraveHEARTS.  Let me start by saying I hate public speaking.  Like...despise it.  I can talk in front of kids all day, but put a group of adults in front if me and I'm a nervous wreck. A shaky, babbling mess. Anyway, I went, but only because I love HBH.  I was greeted by some sweet, welcoming ladies and the experience  ended up being a great opportunity to spread the word about CHDs and precious heart babies.  

Fast forward three months and they invited me back, but this time to collect some goods.  And boy did they have a lot to share!!





There were four six foot tables FILLED with goodies for baskets!!  What a blessing!!  Thank you, NEC WIRE for your generosity!! You all rock!!

And I must say, we have two amazing women who shop for BraveHEART Basket goodies all year long and we're insanely grateful for them too!  Getting donations for baskets means we get to donate more to research! :). That's definitely a win-win! 

11.13.2013

30 Days of Thankfulness :: Day 13 :: Warmth



It's been chilly here.  Way too chilly for this southern girl, anyway.  They're calling for temps in the 20s tonight, which is way too cold for SC in November!  I'm so thankful that I can sit on my couch (shhh, the kids are sleeping!!) and enjoy the warmth of the fire as I wait for Justin to come home.  We were preparing to put our Operation Christmas Child boxes together earlier and I was talking to Derrick about why we were making them.  As we looked through the socks we talked about how the kids who receive our boxes may have cold feet and we could help them stay warm by giving them socks.  It's heart breaking to think about children being cold.  It almost feels unfair to sit here by the toasty fire with kids upstairs snuggled in their warm beds.  Being warm is one of the many things I often take for granted.  So tonight, on this frosty November night, I'm extra thankful that we're all (almost) home, warm and toasty.

30 Days of Thankfulness :: Day 12 :: Six Weeks

Today Derrick is six week post op.  SIX weeks!!  Yay!  Gosh it's always good to reach this time after surgery.  He can be picked up under his arms now, he's free to run and play and be a kid as much as he wants to now.  :)

We also happened to have a check up today that went wonderfully!  He looks great, sounds great, and...wait for it....

He weighs 28.6 pounds!!

That's a 2.2 pound weight gain from three weeks ago!  Y'all, that's unheard of for Derrick.  Especially since he's still on this blasted uber low fat diet!  Yes, it's a sugar weight gain, but we'll take it.  :)  We'll be working on healthy weight gains in a few weeks. 

JK sat still and quiet through the whole visit.  I guess she's getting used to this kind of thing. 

Clearly Derrick is used to it.  He isn't phased a bit. 

Every time the kids know we're going to the doctor they go pick out a ring pop.  They're not allowed to have them any other time, so sadly, they get a little excited to go to the doc just so they can have a ring pop.  Last time we were at Dr. S's Miss Helen said she'd never had one so we took one for her this time too.  She loved it! :)  I mean, who doesn't love a ring pop? 

We go back again in 6 weeks and will have an echo and a chest x-ray.  Derrick has two weeks left fat free (or 12 grams of fat per day, which is pretty darn low) then we can add one regular meal a day each week for the next month.  We're praying when we go back in six weeks there's no sign of chyle and my boy can eat whatever so he can grow big like Spiderman! :)

We are so, so, so thankful for your prayers for Derrick.  We will never be able to thank you enough, but I'll say it anyway, thank you!! :)

11.11.2013

30 Days of Thankfulness :: Day 11 :: Productivity & Fire Pits

Today we had the most productive day we've had in a really, really long time.  Our garage has been a nightmare since we moved here 3 years ago.  We've never had it clean.  We unloaded the moving truck right into the garage and there were a few boxes that were still sitting in there untouched until about last week.  The entire fifth grade classroom that was boxed up in there has finally been gone through for the last time and almost everything has a home now as of today. Almost.  There are a few things piled on shelves but we have a clear, clean, and almost organized garage for the first time ever! Woo hoo!! (Y'all who've seen it aren't going to believe it!!)

After conquering that feat we put a new roof on the dog house and had dinner.  Leftovers, thank goodness because I was too pooped to cook.  Then Justin got a wild hair and decided before the kids went to bed he wanted to roast marshmallows.  I'll admit, I wasn't excited, but I'm glad he was determined to do it anyway.  

I'm thankful for productive days, but I'm more thankful for seeing these sweet faces so excited to sit around a fire on a cold night, snugly and chatty.  This is what the best days are made of.  :)


D has his six week post op check up tomorrow! 

11.10.2013

30 Days of Thankfulness :: Day 10 :: AWANA

My little Cubbie finally got to go back to AWANA tonight. :)  

I'm so thankful for the AWANA program at our church (and some pretty special ladies that made it happen!).  It's fun, exciting, and a perfect way to get children into God's word.  I love hearing Derrick's little voice quoting scripture. :)

And at AWANA tonight a sweet friend brought us enough fleece to do the last four blankets we need for our delivery in December.  So awesome! Thank you!! 

11.09.2013

30 Days of Thankfulness :: Day 9 :: Hope for BraveHEARTS


Today was blanket making day. What fun we had tying those cozy, colorful, and incredibly cute fleece blankets for the heart babies!  Today, because of generous friends and family, we made 13 blankets and we have 9 more on the way...which means we only need 4 more to reach our goal of being able to put one on every bed in the PCICU and 8D. We're so excited to deliver them in December!

I love being a part of Hope for BraveHEARTS.  It has been such a blessing for our family.  It's therapeutic.  It's humbling. It's Gods work. Our goal is to carry it out according to His plan.  I'm so thankful for the special relationships I've been given through HBH and for the wonderful people who make HBH possible through their generosity. 

 Our hearts are full...of gratitude and HOPE!

11.08.2013

30 Days of Thankfulness. :: Day 8 :: Visits with Gong Gong

30 Days of Thankfulness :: Day 8 :: Visits with Gong Gong

We had a fun visit with Gong Gong today.  Gong Gong is my grandmother and she's the only great-grandparent our kiddos have left.  I'm so thankful to be able to spend time with her, and for my kids to enjoy her too.  

Jk refused to take a pic with D and Gong Gong, but she would pose by herself.  Rotten much?

We enjoyed trying to pet the chickens,

and taking a ride with Bill on the Gator.  We'll never be able to visit again without riding this thing!

Right before we left Derrick took off running. I loved hearing Gong Gong say, "I've never seen him with so much energy!"  That totally made my day. :)

We loved our visit, Gong Gong!!  See you again soon.  Just be sure you have gas in the Gator. ;)

11.07.2013

30 Days of Thankfulness :: Day 7 :: Good Times

30 Days of Thankfulness :: Day 7 :: Good Times

I've had lots of good times.  Lots of different kinds of good times.  Looking back over all the years, I think the best good times consist of being with people I love with lots of laughter and conversation.  The picture above was taken on one of Derrick's "Bucket List" dates (which I really will blog someday).  This photo screams good times to me, so it seemed perfect for today.

Some of the best conversations I've had have been with our kids.  Derrick likes to have deep conversations at night.  It's probably really a procrastination tool, and we typically fall for it, but it's important and often entertaining.  A few snippets of recent conversations:

D: When am I going to get get my kids?
Me: What do you mean, get your kids?
D: You know, my kids.  Like me and Jenny Kate are kids.  When am I going to get mine?  I'm ready to get my kids.
Me: Well, you usually don't get your kids until after you get married.  Who are you going to marry?
D: You.
Me: Nope, can't marry me.  I'm your mommy, plus, I'm already married to daddy.
D:  Jenny Kate?
Me: Nope, she's your sister.  You can't marry your sister.  
D:  Well, then I'll marry Katelyn.  (We're guessing from preschool last year??)
Me:  Ok, where are y'all going to live?
D:  We'll live here.  You and daddy have to move out.  We're going to get three kids and I will work at Rite Aid like daddy.  I'm just ready to get my kids.

He's got a plan and he won't need us.  I can't argue with that!

D: When you're dead are you alive like us?
Me: No, when you die you go to Heaven.
D:  Well how do you get there?
Me: You have to love Jesus.  When you die your body is buried and you get to go to Heaven and live.  
D: You don't drive there?!
Me: No, you don't drive to Heaven, God takes you there.  
D:  But snakes can eat you if you're in the ground.
Me: No, you're buried in a coffin and nothing can get to you to eat you.
D: So nothing can eat you?  Oh, ok.  

It's getting deep here...

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