Sunday, July 28, 2013


I have had this rolling around in my head for over a week now and couldn't even fathom writing about it until now.  That's how tough this is for me to write.  As it is, I have been working on this for over two hours.

Back in May, we participated in a Canadian genetics study where researchers are trying to confirm that they have found the mutated gene that causes CCMS.  We were really excited about the prospect of being a part of a such a big (well, for about 10 people!) study.  All that was required was a saliva collection from Matt, Abby, and me.  It was painless and easy!  We got a little bit silly during the process, took pictures for posterity, mailed off the collections, and really didn't think too much about it after that.

The Thursday before Abby finished feeding therapy, I had a message from our geneticist saying she had some news about the study.  We played a little phone tag and she finally caught up with me on Saturday morning on my way home from RMH.  

I was fully expecting the first bit of news we heard:  Abby has the mutated gene that they feel causes CCMS.  This supports their research and means that they are more than likely correct!

What I wasn't expecting was the next piece of news:  

I do too.


The next few minutes of conversation were rather surreal, with little doctor jargon snippets floating in and out:  chest xray...high soft palet...affects future children...more research needed...asymptomatic CCMS...

But none of that really reached me, because all I could think about was that


I ended the conversation as quickly as I could with the poor geneticist trying to reassure me that this wasn't my fault and apologizing for giving me this news over the phone.  (I didn't fault her for that, because she knows we live far away and were doing feeding therapy at the time.  She didn't really have an alternative, although I would have preferred to get that information in person with my husband there!)

I then promptly completely lost it on the Baltimore beltway with a van full of stuff we'd accumulated over the past six weeks and a little girl in the back innocently asking, "You okay, Mommy?"

How could I reassure her that I was okay, when I was completely overwhelmed with the new-found knowledge that I was the one who gave her this horrible syndrome that nearly cost her her life?

Matt was in Indiana at the time and unable to easily answer his phone, so I decided against calling him.  Normally he would have been my automatic first phone call, but I don't call him while he's on work trips unless it is an emergency.  Instead, my poor sister was completely blindsided by my hysterics and was pretty sure we had gotten in a horrible car accident or something.  It took her a while to piece everything together and kept apologizing that she didn't know what to say. In retrospect, I probably should have calmed down a bit before calling anyone!

After listening to my sister reassure me that it wasn't my fault, I did what any rational woman would do:  I bought a strawberry smoothie at McDonalds and downed that sucker!

I know what you're thinking, because it is the same thing that the very few people I have told up until now have said: it's not something I could have avoided and it doesn't change anything.  Abby is still Abby and the same genes that gave her beautiful chestnut hair and eyes gave her CCMS.  It's not my fault.

Excuse my frankness, but unless you have been told the genes that you have (NOT your husband or a combination) were the cause of a horrible syndrome that has put your two year old through 7 surgeries with many more in the future, two near-death experiences, and a life of chronic respiratory illness, you can't truly understand how I am feeling.  (Geez, I thought I was over that initial reaction...but that all just came flowing right on out!)

Okay, now that that's out of my system, the more rational side of me knows that I couldn't have known.  It's not like I knowingly smoked or drank while pregnant.  But for a girl who was so careful about what I put in my body during those 9 months to the point that I completely changed my vegetarian diet to avoid all soy because excessive amounts have been known to cause birth defects, it's frustrating to know that I was still the cause of a life-changing illness.

So, what does me having this mutated gene really mean?  Well, they really don't know.  It could mean that I am simply a carrier, or I could actually have a very mild form of CCMS that was undetected because I never had symptoms.  I will have a chest xray in the near future to check my ribs (I have never had major respiratory issues other than mild asthma, so I've had no need for an xray), which will help the researchers' understanding.  Interestingly enough, the mom of the other child in the study also had the mutated gene.  If a third family shows the same results, they will go ahead and publish the findings.  (Yes, usually you want a much bigger group in a study, but we're talking about just a few kids who live long enough to actually participate.  You take what you can get!)

But it could also mean that future children...or grandchildren...could have CCMS.  We don't know if Caleb has the gene, as he wasn't tested.  That is one of the questions I have for the geneticist when I get the chest xray done.  I imagine that they will want to test him to see if he has the mutated gene as well.  They really have no idea if CCMS is passed down from a symptomatic person to his/her child because CCMS kids haven't had kids yet.  While it seems that most CCMS kids are girls, I do know several boys as well.  But it was a hard pill to swallow hearing that our grandchildren could be potentially affected by this.  I think I liked it better when CCMS was just considered some crazy-rare, fluke thing that happens once in a blue moon.

With the timing of this news coinciding with our upcoming visit to CHOP for a consultation about Abby's ribs, I felt utterly responsible for the pain and suffering this poor child has already endured.  Would we have tried to have children if we'd known that this could happen?

I may not have taken that chance...and, as a sweet friend reminded me, we wouldn't have that sassy little brown-eyed princess who everyone adores.  I may not have taken that chance...and I wouldn't have been able to witness so many miracles in one little life.  I may not have taken that chance...and I would have missed out on having that deeper understanding of selfless love that comes with parenting a special needs child.

So, once again, in God's infinite wisdom, He knew exactly what He was doing when He caused that gene to mutate in my DNA so many years ago.  Abby was being fearfully and wonderfully made, so many years before we even met her!

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8:28

Thank you for faithfully loving and praying for our family.  And thank you, Lord, for meeting me right where I'm at--in the good, the bad, and the ugly!  This is such an incredibly difficult, but amazingly beautiful journey we are on.  Can something be difficult and beautiful at the same time?  I believe it can.  That's where joy comes in.

Friday, July 26, 2013

A Boy and His Dog

"And thank you, Jesus, for Chloe, and for her foster mom who took such good care of her before we got her."  
~Caleb's prayer last night

Thursday, July 25, 2013

Thankful Thursday

After being home for nearly a week, this Thankful Thursday goes out to the many friends we have at RMH.  Here are just two of many!!  

It makes being away from home SO much more bearable when you are among people who "get" you...people who understand what it's like to be in and out of the hospital...people who realize the necessity of being germ-cautious...people who celebrate every little accomplishment right along with you...people who see kids, not disabilities.

So thank you to our RMH family--ALL of you.  You all hold a special place in my heart, and we have a bond that most just cannot understand.  

In related news, this article just came out sharing that research shows that Ronald McDonald Houses help kids heal faster.  I firmly believe this.  

If you have never volunteered at RMH, please consider doing it.  Join us the next time we go up for an activity hour.  Make dinner.  Sort soda tabs.  Fill the mailboxes with treats for the families.  Clean the playroom.  Whatever you do, you won't regret it!  If you go, you'll see why we call it The House That Love Built.

Wednesday, July 24, 2013

Tuesday, July 23, 2013

It's a Girl!

A doggie girl, that is!  

Meet Chloe!

Chloe is a 4 year old Boxer who we adopted from Adopt a Boxer Rescue.  (There are lots of dogs who need love, if you are interested!)  She was an owner surrender, supposedly because of allergies, but they had 4 other dogs of various, we're not really sure what that was about.  We do know she was tied to a tree all day and crated at night.  She doesn't know how to play with toys and seems to be craving love!  Her given name was Cleo, but the foster mom didn't think she looked like a Cleo and called her Chloe.  We agreed that Chloe was a good name for her!

I got an email from the rescue coordinator on Friday saying she thought she had a great dog for us.  We traveled a few hours to Western Maryland to meet this little girl that was described as a "laid back Boxer."  If you know anything about Boxers, you know that "laid back" is not usually a term used to describe them!  I love Boxers and my family has always had them.  Their energy is contagious and they are eternal puppies.  But with small children, we needed a dog a little calmer.  She certainly sounded like a good fit for our family, so we went to check her out.

It was love at first sight.

The kids loved Chloe, and she loved them!  She was so gentle and loving with them, so it made our decision easy.  We signed some papers and loaded her up in the van!

She started out in the back between Caleb and me.  I eventually moved up  to the front once I felt comfortable that she would sit nicely.

Chloe eventually decided that she wanted to move up too!  She sat next to Abby for the last leg of the trip.

Chloe is fitting in perfectly!  She is such a calm girl.  (Yes, you read that right, Boxer lovers!  I said calm!)  She takes her treats very gently, loves to be near where her people are, and slept in her bed all night.  She hasn't barked at all yet, isn't jumpy, and has been nothing but sweet to my two kids who don't understand personal space.  

What makes Chloe stand out from the rest is that she actually has a tail!  Almost all Boxers get their tails docked at just a few days old.  We're not sure why she kept hers, but it's already provided a lot of entertainment!  We're not used to tails, and especially not the strong whip she has!  Her tail is very, very strong and she has given all of us a couple of good whacks!  The kids shriek with laughter every time.  I have to admit, it is comical to hear her tail thump, thump, thumping on the floor. 

(picture courtesy of AABR)

We are so excited to have a dog again!  In Caleb's words, "Life is better with a dog!"  We are all enjoying giving her the love and affection that she has been missing.

Welcome home, Chloe.  We love you!

Friday, July 19, 2013

The Graduate

Today is Abby's last day of Feeding School!

The back says, "Abby Joy:  Master Chewer"

Overall Feeding School thoughts?

The Positives:
She has most definitely increased her volume.  She is drinking 4 oz of Pediasure 1.5 at 3 out of 4 meals and generally doing well.  Because the 1.5 is calorically dense, it's not such a big deal if she doesn't drink every single drop.  We want her to, but her weight gain has been good regardless.

Abby is also eating a lot more solid food.  It's still mostly purees for volume, but she is much more interested in table foods (she ate 2 whole green beans and 3 pieces of elbow macaroni the other day!!).  We've decided to stop pushing the stage 3 lumpy puree because she just doesn't like it.  Although this is typically the next stage in feeding development, we all know that Abby doesn't do things the "typical" way!  She is much more cooperative when we just give her table foods, so we're going with it.  She will continue to have purees for volume.

We have a plan.  I have a protocol to follow, but have permission to deviate from it if the protocol isn't working for that meal (this is something I struggled with for a while because I felt like I was stuck!)  It's not perfect, but we do have a plan and a routine.

The gross motor development has really been coming along!  There are lots of stairs at the hospital and at RMH, so Abby is now alternating consistantly going both up and down stairs without reminders.  I'm now starting on getting her to alternate just holding onto the railing, instead of the railing and my hand.  She doesn't love that so much.  :)

The Negatives:
She is throwing up a lot.  That happens when you try to stretch someone's stomach and push the volume.  But it's not fun.  Especially not out in public.  I'm learning her cues and figuring out when I have pushed her far enough.  It's frustrating though, because she has never been a throw up kid.

We still deal with a lot of behaviors.  A lot. 

Eating three meals a day in a quiet little room one-on-one with the feeder has made it next to impossible to feed Abby in a "normal" setting.  Unless we build a sound-proof feeding room in our house, we are going to have to work on this a bit.

The playroom drama.  'Nuff said.

There has been definite speech regression from said playroom drama.  And I hate it.  We work too hard with her to lose ground.

I have been less than thrilled with the speech and physical therapy she has been getting while here, and I haven't noticed it to be very beneficial.  I really have no idea what they work on because I don't get any reports...despite repeated requests.

Are we happy we made this big committment?  Ehhhh...ask me in three weeks once we transition back to home.  I'm not quite sure yet!

Thursday, July 18, 2013

Caleb and Momma Time

Because of the way this summer has gone, I haven't had nearly as much one-on-one quality time with Caleb as I had hoped.  It's just not that exciting for him to be at the hospital all day, but I have needed to be.  

We have been able to do a few fun things though.  We snuck away a few weeks ago to the Science Center for a few hours, and he had a great time!

building moon cars...

 ...trying to feed the baby bird like he's the momma bird...

 ...simulating an earthquake..

...creating a cool track...

...pretending to be a ship's captain...

...admiring turtles, because they are his teacher's favorite animal...

...pretending to be a Teenage Mutant Ninja Turtle...

...playing on the underwater simulator and chasing down a sea turtle for his teacher...

I was also able to take him to Port Discovery again last week...but I purposely didn't bring a camera so that I could have even more quality time.  :)

Wednesday, July 17, 2013

Heading Out of State

Matt and I decided to pursue something that we have been thinking about for a while.  It's a big, big step, but I think it's needed.

As you know, Abby has a rib-gap anomaly that has caused her ribs to be in pieces.  The concern is that the ribs won't expand properly to allow the lungs to grow.  Until now, we have been very occasionally followed by a thoracic specialist at JHH.  I felt comfortable with him, but he has now taken a position at a hospital in Florida.  Sadness.  Now, our other doctors can't tell us who we should see instead.  They've basically said to just wait and see if she starts to have respiratory issues and deal with the ribs if she does.

That didn't sit too well with us, so we made the decision to go visit Dr. Campbell at Children's Hospital of Philadelphia (CHOP).  Dr. Campbell is the creator of the VEPTR rib, and he is one of the only people who has actually seen what CCMS ribs look like!  Here is a video that actually shows the surgery (it's a little bit graphic!)

We are really hoping to avoid the VPTR rib, but we want Abby to be followed by someone who is knowledgeable and capable of helping us make the decision if it comes to that.  I'd much rather have her already known by Dr. Campbell if she begins to have respiratory problems.

Our appointment is August 12th.  If he feels that further testing is needed, we will go back up to CHOP for three days for multiple appointments and diagnostic tests.  From there, a multidisciplinary team will get together and make the decision as to whether the VEPTR rib is needed or not.

Along with going to CHOP comes a whole host of other getting insurance approval for going out of state, getting xrays and medical records transferred, and dealing with a whole new hospital.  We're hopeful that insurance won't give us a hard time, since CHOP is by far the closest hospital where the VEPTR rib surgery is performed.  JHH doesn't do it, so we really don't have a choice.

Please pray for our appointment, and for all of the red tape that comes along with it!

Wordless Wednesday

Tuesday, July 16, 2013

Local Tourism

We decided to celebrate Matt's birthday a little early with a day in DC.  Caleb has been itching to go to the Vietnam Memorial (although he was disappointed he couldn't find Paw Paw's name on there, no matter how many times we tried to explain that (thankfully!) his name isn't on the wall!), and we got tickets to a Nationals' game.

Of course, the day we went was the hottest of our relatively cool summer.  It was close to 100 degrees, complete with the typical DC humidity.  We had planned to do the monument circuit for the day, but we didn't last long.

We went to the Vietnam Memorial first.

Caleb just kept on looking for Paw Paw's name...

After a picnic lunch, we finally gave into the heat and made our way to The Museum of Natural History.  Of course, so did every other tourist that day.  It was ridiculously in, admire the exhibits from across the room because you can't get any closer than that kind of crowded.  

We did manage to find quite a few examples of evolution being taught as truth.  Nothing like a little indoctrination, which is fine as long as it's not Christianity...

Caleb and I waited in a pseudo-line for 20 minutes to get a glimpse of The Hope Diamond.  He really wasn't that impressed.

And this is what Abby did pretty much the entire time we were at the museum!

By the time we got to the game, the kids were just done.  We were hot, sweaty, and sitting right smack in the middle of the row.  And we didn't buy Abby a ticket because we figured she could just sit on our laps.  What were we thinking?!  We finally left at the seventh inning stretch.

Moral of the story:  stay away from DC in the summer!!  :)  We are planning to go back in the early fall when it is cooler, but still pleasant to be outside. Hopefully, that will improve the overall experience.  Plus, Caleb wants to ride the Metro next time--cuz, you know, the Metro is totally awesome...or something...

Sunday, July 14, 2013

Calebism AND Abbyism!

Caleb was singing away in the car, as usual.  He just loves to sing!

Abby:  Caleb, can you please stop?

Abby:  Caleb, can you please stop?

Abby:  Caleb, STOP it!

Caleb:  C'mon Abby, I was just praising God!

Abby:  Not our God!

Saturday, July 13, 2013

Friday, July 12, 2013

Therapy Lifestyle

We learned early on that the best way to help Abby with her development is to just adopt a therapy lifestyle.  We don't "check off" her therapy when it's done each day.  That could limit her therapy to just 10 or 15 minutes a day, and she needs much more than that to be successful.

Instead, we incorporate therapy into our daily activities so that they are embedded into everyday life.  Most of the time, Abby doesn't even realize she's working!

Here are a few examples of ways we incorporate therapy into our day to day activities:

*  We have Abby push any doorbells and elevator buttons (she has to stand on her tiptoes, which strengthens and stretches her leg muscles and improves the arches of her feet)

*  At the grocery store, we have her call out the names of the fruits and vegetables she sees.  We discuss the color, the shape, and the size.  We'll also compare the sizes of different types of produce.  It's amazing how much language you can get in at the grocery store!

*  We encourage Abby to switch her feet as we go up and down the stairs, so that she is taking alternating steps.  She also counts the steps as she walks.  We try to build a language component into just about everything!!

*  The bath tub is a great place to work on fine motor and language! Abby loves to pour water from one cup to another.  We have a game where we see how long we can keep a cup of water going...the less she spills while she is pouring, the longer the water will last!  She counts each time she pours.  She also has a water toy that spins and funnels the water as you pour it, which is also good for her fine motor skills.  We have spray foam soap and bath tub paint that she loves to practice writing in.  She'll write her name (with help) or I will write letters for her to name and give the sound.

*  I keep crayons and a coloring book in the diaper bag.  Coloring is a fabulous fine motor activity! We have her (whenever possible) color while she is lying on her belly so that it strengthens her core muscles.  Sometimes, I will do leg stretches as she colors...until she notices. :)

*  We sing all of the time!  She especially loves songs that have motions!  Seriously, I can sing while I'm scrubbing the bathroom and she is perfectly happy.  I like to sing as an eating motivator too.  She has to finish a certain cup of milk before we finish the next verse!

*  One of Abby's gross motor goals is to walk on a line.  At home, our road has a kind-of line going right down the middle.  We will often walk on it going to and from the bus stop.  Her goal is to put one foot in front of the other, but she still needs a hand.  In Baltimore, we have lots of curbs for her to walk on.  She thinks it's so funny to walk on the curb while I'm below!

*  Abby loves the idea of bowling with this little plastic bowling set they have at RMH, and it's good for her to work on throwing or rolling a ball in a particular direction.  She wasn't feeling the rolling the other day, so she kicked the (plastic) ball to knock down the pins.  I'm good with that!  Kicking is good for her muscles too!

For those of you who have a kiddo with language or motor delays, I hope you have allowed yourself permission to avoid the therapy check-off list.  I'm sure you already do so much for your child already--just be intentional in the activities you do and look for ways to build in language, fine, and gross motor activities.  I personally think that therapy is so much more effective when in the context of every day activities, rather than as a separate component.  Plus, then that's one less thing on your already huge "to do" list!  Just build it in.

I would absolutely love to hear other ways you build in therapy to your lifestyle!  Feel free to share them!!


Happy Birthday to my awesome husband!  Welcome to your late 30s!  :)

In all seriousness, I am blessed by this man.  He is a fabulous husband and father.  Thank you for loving us!!

Thursday, July 11, 2013

4th of July

Our 4th of July celebration started a day early with some special activities at RMH.  They made American Flag snacks (break with strawberry jelly and bananas for stripes, and blueberries for stars) and fireworks in a bottle (glitter, pipe cleaners, and beads in water and baby oil).  They also went on a hunt for stars hidden around the playroom and won some fun prizes.

Caleb obviously took the hunting very seriously...

On the morning of the 4th, we went to Port Discovery and were pleasantly surprised at how not-crowded it was!

Abby and Caleb both loved the car, although I fear the gender roles are already forming in these 2 pictures...

There was an awesome drumming room there, which both kids loved.  The man in charge owns all of the drums and was so proud of his collection!  It was, ahem, kinda loud, but they loved it!!

Abby's favorite place was the grocery store, where she "shopped" for quite some time!

She also really loved the infant and toddler room, which had some awesome gross and fine motor activities!  They had several types of flooring to practice walking over rough terrain, and this peg board was perfect for working on fine motor skills!  (Therapy lifestyle, folks!  This is what we do!)  Matt and I said we both want a therapy room like this in our house.  Where's Extreme Makeover Home Edition?!

Caleb's favorite areas were the climbing structure (which I got no pictures of because I was climbing with him!) and the diner.  He absolutely loved playing waiter and getting the food ready!  Although, he dropped our food on the floor and told us to pretend we didn't see that.  I'm pretty sure that's a health code violation, buddy!

For our Paw Paw!

After a relaxing family nap, we gathered some of our RMH friends and headed to the Inner Harbor for the fireworks!

We learned a few things about fireworks in the Inner Harbor...

Like, there are no bathroom anywhere, everyone walks in the middle of the streets like it's one big pedestrian zone, and it is cheaper and a million times easier to take a cab.  

But it was still a fun night with friends, and a fun day in general!