Wednesday, April 30, 2014

Medical Update (Warning: This is Long!)

We got some not so great news yesterday. Our pulmonologist called last night.  (That concerned me right there--it's usually a nurse!). We got the results back from Abby's sleep study, and it showed "severe upper respiratory obstruction." She had an average of 12 episodes an hour where she stopped breathing, as well as 2 central apneas. . We have never had anything like this show up on previous sleep studies. Our pulmonologist is recommending cpap and /or getting her tonsils and adenoids removed--before veptr surgery! Previously, our pulmonologist was very hesitant about VEPTR. She said last night that this is all showing us that we really don't have a choice but to go for the VEPTR.

We were not expecting this sort of news at all!!  This sleep study was supposed to be just baseline information for her surgery, so we were pretty caught off-guard with the bad news.  It makes me want to sleep in her room!  We have also been told to monitor her oxygen levels continuously while sleeping again, which is something we haven't had to do in over a year.  :(

After lots of phone calls with various doctors yesterday and today, the deal is that we know that the real reason for her apneas is her small jaw, which causes an obstruction.  Her reduced lung functioning is just making it worse because she can't breathe deeply enough to get past the obstruction.  Taking out her tonsils and adenoids isn't going to help much, if at all.  What we really have to do is an extensive jaw surgery called a mandibular distraction in order to solve the problem, but that will involve a month of turning external screws.  We don't have that much time before her VEPTR surgery (it's 3 months away, but between an evaluation, scheduling surgery, recovering from it, 30 days of screws, then removal of the plates and recovering from that surgery, we don't have that much time!).  We can't postpone the VEPTR surgery either because of her lung functioning...but we want her to be at her best so that she will recover well from this major surgery.  It's a catch 22!   Basically, something needs to be done, but we don't have time to do it.

She'll be evaluated for the jaw surgery in June. If we go that route, it will probably be scheduled for after the VEPTR surgery.  But, there is also a possibility that the VEPTR surgery may be moved up out of which case, our whole schedule and my meticulous planning will go right out the window!!  :)  We won't find that out until the beginning of June though, when she finishes her next round of tests at CHOP.

The only "easy" fix they could offer is to put her on a nasal spray and asthma/allergy med to try to keep her airways as open as possible.  She's had a constant dry cough as a result of the reduced lung functioning, so we are hoping this will help that.

I'm trying to focus on positives, and there are definitely some!  

1.  A new surgeon just started at Hopkins who specializes in the kind of jaw surgery Abby will need!  This surgery is not exactly simple either, and we want someone really great to do it!
2.  Our ENT is awesome, and I trust him 100%.  He is so protective of Abby's airway.  Today, he called back (in between surgeries!!) just 15 minutes after I called his office!
3.  The surgeon doing Abby's VEPTR surgery created the device, and is the absolute ONLY person who has ever done this surgery on a child with Abby's syndrome.  
4.  Abby is still as spunky as ever.  Her zest for life gives me so much strength and hope as we face this!

We would so appreciate your prayers, as this already stressful situation just got a lot more stressful.  I tend to worry as it is, and Matt jokingly said that God must have felt like I didn't have much to worry about right now.  I beg to differ!!  :)  We are hanging in there though.  Thanks for praying!

Wordless Wednesday

Tuesday, April 29, 2014


Abby's phrase of the day is, "Oh!  That's so wonderful!!!"  

examples of how this phrase has been used today:

"Chloe!  You didn't poop in the house again! Oh , that's so wonderful!!!"

"I have a blue dress?  Oh, that's so wonderful!!!"

"I folded a napkin!  Oh, that's so wonderful!!!"

Monday, April 28, 2014


Testing out the new blogger app I just downloaded.  I think this could really come in handy in the hospital this summer!!!

I Love These Kids!

Saturday, April 26, 2014

Red Shoe Shuffle Recap

The Red Shoe Shuffle was on April 6th.  This is the third annual Shuffle, and this year we were Shuffling for Smiles!  All of the money raised will go to the McSmiles Fund, which provides special events and activities for the families in the House.  

As always, this was not  your typical 5K!  They have people cheering at every corner holding encouraging signs.  

A boy recovering from a kidney transplant was too sick to come out, so everybody cheered for him as he waved out the window.  Kids are EVERYWHERE, and it's like a family reunion with everybody running up and hugging friends they'd made during their stay at the House.  

Everybody is wearing red, and The Redder, The Better!  There are heart headbands, boas, sequins, sunglasses,'s a sea of red!  

Of course, we have to be different and wear our purple!  :)  It's Abby's color though, and it does certainly make it easy to spot each other (and in the sea of people when we're looking at pictures!)

The race officially started, and my sister was nowhere to be found.  Turns out, her little ones were being uncooperative and she didn't feel like she could go.  Dad and I helped her out and got the kids going.  

Meanwhile, Matt had Abby up with him.  It took us a while to catch up!  She rode in the stroller just about the entire time.  She didn't want to walk or really do much of anything.  We found out that night that she had Flu B. :(  It knocked her out for about 4 days!

Our wonderful adopted grandparents, the Reeds, walked with us again this year.  They are the SWEETEST people and truly love our family.  In fact, they had team day at their school and wore their Joy Runners shirts.  :)

Sara and Caleb ran quite a bit off and on, which helped them pass the time during the long stretches between encouragers.

Poor Abby.  You can see in her face that she's not feeling well.  I wish we had known!

Some of our team!  We also had a group from a local middle school join us this year.  They did a great job raising money too!  Sadly, they weren't here when we took this picture just before the race started.

During the opening ceremony, they honored the children who lost their battle and weren't with us any longer.  We are honored to have known Malachi and Brooke!

Once we got going, the kids were pretty good.  Lucy didn't particularly love riding in the stroller, but she eventually got over it.  Anna was actually really sweet with her!

Uncle Matt rescued her from the stroller now and then to walk.

There are lots of characters around, but the only one we got pictures with this year was the Oriole Bird.

These are two of the girls from the middle school who joined our team!  They ran the whole way, which I find pretty amazing!

Thank you to all of you who attended fundraisers, donated money, bought tshirts, and supported our family!  The House That Love Built most definitely appreciates it, and so do we!!

Thursday, April 24, 2014

History Alive!

Way back in October, a Living Social deal came up for 50% off a ticket to see all 4 historic ships in Baltimore:  The USS Constellation (a Navy fighting ship), USS Torsk (a WWII submarine), the USCGC Taney (survived Pearl Harbor), and the LV116 Chesapeake (a lighthouse boat).  The only one we'd visited was the submarine, and that was like 5 years ago!  We try to do fun activities that incorporate something educational when we visit places, so I figured this was right up our alley.

My 7 year old history buff was 100% in his element.  Totally.  As in, running all over the ships and exploring every nook and cranny and pretending to load and fire the cannons and yelling for pirates and the helm and reading every plaque and information sheet he could find and asking tons of questions he had that weren't answered on the plaques.

He was also extremely cooperative when I took pictures.  I was shocked at some of the good ones I got of him, considering how much he usually fusses!

Abby, on the other hand...I think she could take or leave the ships.  She liked the Constellation because it was big enough for her to run around and explore, but the others didn't keep her attention.  We spent a lot of time looking off the boats into the water or harbor!  It didn't help that she was fairly grumpy all day!

Her favorite way to travel is on her daddy's shoulders, gripping his tiny little hairs for dear life!  That would explain the grimace on Matt's face!

Many more pictures to share!  Stay tuned!!

Wednesday, April 23, 2014

Monday, April 21, 2014

Team Kurtz!

Caleb's teacher has just begun chemotherapy and will be out for the remainder of the school year.  While the long-term sub is very good and we know the kids are in good hands, we will definitely miss Mrs. Kurtz!  Today is the first official day without his teacher, and I think it will really hit him when he walks in and she's not there.  One of the parents in the class made these shirts for everybody, and Caleb decided to write "Team Kurtz:  Game On!" on it as well.  He's been praying for his teacher every night!  

Friday, April 18, 2014

Noah and the Mighty Ark by Rhonda Gowler Greene

Have you ever read a book whose story is so familiar, but the author has such a fabulous take on it that makes it very entertaining?  Noah and the Mighty Ark is most definitely one of those books!

While it does follow the basic well-known biblical story of Noah and the Ark, what I like about it is all of the onomatopoeia and text features the author uses to engage the reader.  Here's one of my favorites (with attempts at similar font sizes!)

The tiny gnat,
From far and wide, he called each pair
That crept or crawled
Or hopped or flew
Or stomped or tromped, or s-s-slithered too.

While I wouldn't be able to read a story like this to teach literary devices in the public school, this would be an awesome book to use if you home school or work in a Christian school!  For now, this will be a fun one to read to my daughter and a great group of little ones in the nursery!

I'm a Book Looks Blogger and receive complementary books in exchange for an honest review.  All opinions are my own!

Battle of the Beltway

Check out my Smile Box of our recent event with The Starlight Foundation to The Battle of the Beltway!

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Thursday, April 17, 2014

What Have We Been Up To?

This has been a busy Spring Break for us!  Pictures are coming soon (I had a brief panic attack when I couldn't find my camera to load my pictures, but Matt found it in Abby's backpack from our day trip the other day!), but for now, I'll fill you in quickly:

*  Saturday, Caleb played a GREAT soccer game that included not just connecting with the ball but kicking it toward the (correct!!) goal several times and almost getting a breakaway!!  We were so excited!  He got to pick lunch (Greene Turtle) and got froyo!

*  Sunday night, Abby had a sleep study. I believe all went well, but we haven't gotten results.  This was a study to show her baseline before surgery so they can make sure all is okay post-op.

*  Matt and Caleb played lazer tag with the youth group on Monday, so Abby and I had some fun Mommy-Daughter time at the board walk and playing with Peeps Playdough.

*  We got to meet sweet little Baby E on Tuesday!  He is so sweet and tiny!  Both Caleb and Abby "held" him, but Abby really loved on him.  It was pretty cute.

*  Tuesday was supposed to be our day to visit the historic ships in Baltimore after meeting Baby E, but it literally started thunderstorming as we pulled into the harbor.  So...we took the kids to the Science Center instead.  They love that place (we are members) and we haven't been there since January, so they were fine.

 *  We've had lots and lots of fun cousin time this week. They've been back and forth just about every day, including today when Sara helped me weed and clean up the yard to get ready for Spring! She was a huge help!

*  Today, Caleb went over to a friend's house.  When I went to pick him up, Abby asked if he could just stay a while longer so we could have more Mommy-Abby time!  :)

*  Tomorrow, we are going to experiment with dyeing Easter eggs with shaving cream.  Should be interesting!

*  Saturday, we are going to try the ships again!  The weather is looking good, so we are hoping to be able to visit all 4 in one day.  This was a Living Social Deal, and we have been putting it off saying we have plenty of time...until now we are close to the expiration date!  It should be a fun day though.  Caleb is thrilled...Abby could probably take it or leave it, but she'll like exploring for a few minutes, at least!

Pictures will come soon!!

Monday, April 14, 2014

Along Came You by Karona Drummonds

We drove home to see a package on our front porch.  Abby is beginning to recognize the packages my Book Looks books come in, so she ran to the porch to retrieve the package.  We opened the door and she immediately asked me to open the package.   (Good thing this book was for her!)  When she saw it was a board book, she begged me to read it.  I obliged.  :)

With a title and cover picture like this, you can expect this to be a sweet book about the love between a mother and daughter, and it doesn't disappoint.

You know the phrase, "Having a baby changes everything" that Johnson and Johnson coined a few years ago?  That's the basic premise of this little book.  Each page shares something the mom used to do before her daughter was born, and then what she does now with her.  While each activity is done a little differently now than before the little girl was in the woman's life, it's obvious that the mom wouldn't change any of it for the world!

I love the soft illustrations of this book too.  This would be the perfect little book to get a mom-to-be as a shower gift.  I think all moms can relate to this!  If you're a mom, you'll love this book.

**I'm a Book Looks Blogger.  I get complimentary books in exchange for an honest review.  As always, all opinions are my own!

Thursday, April 10, 2014

Stream of Consciousness

I haven't done one of these in forever, and probably some of you newerish readers don't even know what it is.  Basically, I write whatever I'm thinking without trying to formulate it into an eloquent statement. It will go from one thing to the next without warning.  Fun, right?!  (My sister loves these!)

As a mom, it's hard when your kid feels like he doesn't fit in.  I see what a great kid he is, and I love his passion for knowledge.  But I also know he's pretty much on a different plane than most other kids his age.  He's had a lot of experiences that have shaped who he is, and a lot of those experiences aren't typical for a 7 year old.  I just hope that other kids can appreciate him and accept him for who he is.  My dog is lying on the couch.  Don't tell my husband.  She really loves the couch.  :)  I'm really ready for Spring Break.  Even though we had like a bagillion snow days, very few of them fell on days I was working...which means I have to make up days that weren't really my work days to begin with.  Oh well.  It's been a really busy year at work and I am ready for a break.  I am currently in the process of testing some adorable pre-k kids.  They're my favorite to test because they're just so little and cute.  I love that age.  I also love Swiss cheese.  We have some in the fridge, but I'm too lazy to get out of my chair and get some.  It's already cubed up and everything.  My mouth is watering.  My tulips are starting to pop up.  I haven't seen any bulbs yet or anything, but the leaves are coming.  I love tulip season.  I have them planted all over my yard as a reminder that Holland can be beautiful too.   Abby has been sick with the flu.  She was diagnosed in the ER on Sunday night and went back to the ER on Tuesday for dehydration.  After switching her nausea medicine, she's much more willing to drink fluids and even ate a decent amount today.  She's acting pretty normal and hasn't had a fever since Tuesday morning, so I'm hoping she will be ready to go to Mom's Morning Out on Friday.  I find myself sometimes forgetting what we are facing this summer.   Or when I talk about it, I feel like I'm talking about someone else's life.  Does that ever happen to you?  I think I take myself out of the situation as a way of coping with it. But then something will hit me and I'll feel the magnitude of this surgery.  Someone on the VEPTR site mentioned how much they hate the spiel anesthesiology gives them each time before surgery about the ramifications of doing/not doing surgery.  The fear of a spinal cord injury is very real...and so is the fear of a collapsed lung or respiratory distress if we don't do the surgery.  So do we choose the prospect of a spinal cord injury, or the prospect of a lung transplant?  It's not an easy decision, to say the least.  And we've already made the decision, but that doesn't mean I don't second guess myself when I start worrying.  A friend in college told me worrying is like a rocking chair.  It gives you something to do, but it won't get you anywhere.  I find that's true and I'd love to stop worrying so much.  Is there a pill for that?  Maybe.  Enough for tonight.

Wednesday, April 9, 2014

To Thine Own Self, Be True

That moment when your child realizes he is "different" from the other kids because he really isn't into sports, loves to read, finds history interesting, and adores school...

I didn't think I'd be dealing with this sort of angst this early on, but I climbed on into his loft and settled in for a heart-to-heart.  We talked about a lot of things, but I shared with him how he shouldn't apologize for liking history or reading!  Love what you love and don't let anyone tell you that you shouldn't!

We watched this little video clip together.  I'd seen it last week on Facebook, and I thought it was appropriate.  Will Wheaton, a sci-fi actor, answers a little girl's question about how to deal with being called a nerd.

Although some of it was over his head, I paused it periodically and we talked about what he meant.  I think he got it.

I have You Are Special by Max Lucado.  I think it's time to read it again!  "You are special because I made you, and I don't make mistakes!"

Tuesday, April 1, 2014

Fabulous News!

I know I've been really quiet on here recently.  But my "free" time has been filled with JOY bags!!!  I am happy to tell you that we have had 132 bags sponsored!  This project has just taken off.  We started out just praying that we would get 50 bags, and we met that goal in TWO hours!  After buying more of the 31 Bags Drawstring Bags multiple times, we finally settled at 132 (we bought 30 more and got 2 free, which is how we got to 132!)

Cathy and I have been busy buying the bags, as well as LOTS of toys to fill those bags!  Each bag will be filled with fun stuff like play dough, several books, bubbles, a dry erase board, twistable Crayola crayons, a coloring book, a cuddly stuffed toy, and much more!  We are also including a sponsor card so that the recipient will know who lovingly sponsored their bag.

Our plan is to deliver some of the bags when we go to CHOP in May.  Then we will give the orthopedics department some bags to keep on hand and give out as they see VEPTR patients.  They will let me know when they begin to run low and we will bring more!

THANK YOU to all of you who sponsored a bag (or more!)  We were blown away by the faithfulness of God as we began this project.  It has been so fun!