Monday, April 30, 2012

Wait Time, Exam Glove Balloons, and Hair Cuts

Today was Abby's big orthopedic appointment.  We realized very quickly that one of the downsides of seeing one of the best orthopedic surgeons in the world is that he is in very high demand!  Dr. S. was called out for an emergency, which certainly wasn't his fault, so we had to wait about an hour and a half before we saw him.

What to do, what to do, with an hour and a half of wait time in an empty exam room with no toys because we already had a lot to carry in and we figured it wouldn't be that long?  Well, after exhausting the standard peekaboo-in-the-mirror-of-the-exam-room game that we usually play, we let Abby stand in the large windowsill and people-watch...her favorite!  They'd told us to take her pants off for the exam though (before we realized we'd be waiting for so long!), so I'm sure passersby looking up at the 5th floor window got a chuckle out of a half-naked baby banging on the glass with a huge smile on her face!  When that turned into a much more fun game of throwing herself backward into the hopefully-waiting arms of one of her parents, we decided to entertain her with the less dangerous iPod.  She played on that for a while before beginning the Go Fetch game, we sang songs until she stopped signing again, she whacked Daddy on the head for a bit, and then...I was out of ideas.

Enter:  exam gloves!!  My OB blew up an exam glove and made it into a chicken once for Caleb.  He loved it, so I figured why not?  I quickly blew one up, drew a face on it, and tossed it to Abby.  It entertained her for the remainder of the time until Dr. S. got there.  Success!!

As far as for what Dr. S. actually said about Abby's hips...the problems we are seeing are not caused by hip dysplasia.  He feels it is a muscle issue and that we just have to keep working hard at the walking. He didn't see anything that was a cause for concern, so no surgery or braces are needed.

I turned to Abby soon after and said, "Alright, Girlfriend!  You hear that?  There's nothing wrong, so now we're going to make you work even harder to get you walking!"

It was great news to hear, but I was really hoping Dr. S. had some miracle cure to make kids walk.

No such luck.

So, we celebrated with Menschies and got Abby a haircut she desperately needed!  Here are a few pictures of her new hairdo!

She's got a lot more curls now, and the stringiness is finally gone.  Thank goodness!  :)

Thank you all for praying us through this appointment.  Now you can pray for my patience during this walking process, since it seems to be a slow one.  :)

Sunday, April 29, 2012

Big Appointment Tomorrow

Matt and I would appreciate prayers tomorrow for Abby.  She has a big appointment at orthopedics to see about her hips.  They seem to be causing her some problems, as she has hit a brick wall with the walking.  We seemed closer 2 months ago than we are now.

While we're hoping to get to the root of the problem and do whatever need to be done to fix it, we're also feeling a little anxious about what that might mean for Abby.  We really have no idea what our doctor will say, but we feel confident in knowing that he is truly one of the best out there.  We trust him.

Please pray for us.  I'm more anxious about this than I have been about an appointment in a long time--probably because this directly affects the walking, which is a sensitive subject for me.  We're hoping that fixing the hips will help Abby to be able to walk easier, even though it may mean delaying the walking a little while longer.

I'm trying to keep things in perspective, because I know we have been through tougher things and Abby has had much more serious concerns.  It's actually kind of progress that we can start looking at these "lesser" issues, because there was a time when this would have been on page two of her list of concerns!  We're just pretty far away from that now, and this is the first "surprise" issue that has popped up in a while.  It caught me a little off guard.

Her appointment is tomorrow at 11:30 in Baltimore.  Like I said, we're seeing one of the top pediatric orthopedists in the world, so we should hopefully have some good information when we leave.  As we do with all of the "big" appointments, Matt and I are both going.  Thank you for praying!

Saturday, April 28, 2012

We Are Family

Matt and Abby walking in the Red Shoe Shuffle

I'm so thankful for my parents, who have been so incredibly supportive and willing to pitch in these last 18 months!  (And always, but especially since Abby came into our lives!)

Our family, ready to Shuffle!!

After the race...not looking too terribly tired!

Matt did most of the stroller pushing, except for when Caleb rode on his shoulders.  

Sisters, cousins, and best friends all around...pre-Shuffle

Anna gets her We Choose Joy button

Caleb was so proud of his button that he wore it the next day on his field trip as well!

Friday, April 27, 2012

I Knew it Was Too Quiet...

Does she look guilty, or what?!

Thursday, April 26, 2012

Tweet, tweet

At our local organic market where we picked strawberries, a little birdie thought right in the middle of the gravel would be a good place to build a nest!  She laid her eggs there, so the staff put up cones and a sign to stay away.  (I'm not nearly as close as it seems!)  Caleb was enthralled!  :)

Wednesday, April 25, 2012

Just in Time

As I exaggerated the word ooooooooooopen for the seventeenth time in an effort to get Abby to give me some kind of vocalization, I couldn't help but wonder why everything has to be so hard.  Speech, feeding, walking...Abby works so much harder than most other kids and it just doesn't seem fair sometimes.

Then I checked my email tonight in the quiet after the kids went to bed, and I opened up a message from a fellow CCMS mom--a new one!  I actually read several online newspaper articles about this family right after Abby's diagnosis and emailed the writers in an effort to contact the parents, but they didn't have any information.

Isn't it just like God to not only send a CCMS mom to me, but to also send her on a day I could really use a little encouragement?  :)

I have already emailed her back and am looking forward to getting to know her better.  I'm especially excited about the prospect of meeting them one day, since they are fairly close by.  Imagine...Abby will actually meet someone who has the same diagnosis as her!!

Wordless Wednesday

Tuesday, April 24, 2012

Go Nationals!

The other half of our great weekend was spent at a Nationals game, thanks to some great friends who gave us their season tickets!  We ended up having a lot of fun, despite the rocky start.  When we were about an hour away from our house, Matt realized that he left the tickets at home!  Oopsie!

This is one time when I wasn't the one upset because I didn't really care whether we saw warm-ups or not...but Matt did!  I chuckled quietly to myself in the backseat while he fumed in the front.  We missed the first few innings, but all of the exciting baseball happened at the end of the game anyway.

Stephen Strasburg is one of Matt's favorites, so he was very excited to see him pitch.

Abby bounced back in forth from my lap to the seat, but she thought she was hot stuff sitting in her own chair.  She got some of her best people-watching done sitting here--forget the baseball!

I have no idea what they're studying, but they both appear to be deep in thought.  Is Caleb a baseball guy in the making?

This guy got whopped with a flying bat and had a huge welt on his arm.  The staff wouldn't let him keep the bat and required that he leave the stands to be examined!  If he's going to miss half the game, at least let him keep the bat!!  

Also, if you look very closely under the railing, you'll see a stream of liquid.  At the exact moment I took this picture, the guy adjusted the ice pack and dumped his beer all over the guy
 sitting across from us in the process!  I can't believe I got a picture of it.  I wish you could see the guy's face who got the beer bath.

The Nats won in overtime (Do they call it overtime in baseball?  I have no idea!) and we were so close to the action that Caleb really paid attention.  The only thing I didn't like was having to watch out for the fly balls...or fly bats, as the case may be!  

Monday, April 23, 2012

Another Great Weekend!

Our family has had two fabulous weekends in a row!  Between the Shuffle last weekend (and the zoo on Monday, which still felt like the weekend to me) and our adventures this weekend, we have had a very good time as a family.

On Friday, we went to a local museum that was only open to special needs families.  We've been to this museum many times, but it is usually pretty crowded and crazy.  This time, it was much less-crowded, with lots of volunteers to answer questions and chat with the kids.  They even had a "calming room" for kids who got over-stimulated.  I loved how thoughtful and understanding they were.

As I mentioned in an earlier post, it was also really nice for Caleb to get to do something fun because of Abby's special needs for a change.  That may not make much sense to you, but that's because you're not living it.  Too often, Caleb can't go to parties because I can't drive alone with Abby, or is shuffled from one family member to another while we go to doctors' appointments, or is away from his parents for several days in a row while Abby is in-patient, or is told to "wait" when he wants to show us something and we're changing Abby's trach ties.  We are aware of this and try really hard to give him his time, but sometimes Abby has to come first.  So it was good to finally be able to give him something fun to do because of Abby.

We also went to a baseball game, but I'm going to save that for a separate post because this one is already kind of long!

Here are some pictures from our excursion!

Caleb and Abby in the lighthouse

This is a floor-to-ceiling fish tank that Abby LOVED.  We hung out there for a long time while she signed fish over and over and over and over!  :)

The museum has a hands-on room where the kids can learn about turtles and horseshoe crabs.  Abby's checking out the turtles here.

There's a sailboat for the kids to play on.  Abby and Caleb both loved it!

It's not really on her head...but it looks like it!

 They both really loved the jellyfish.

This sweet man was there teaching kids how to tie knots.  I really didn't think Caleb would be interested, given that he usually throws a fit if I try to work with him on tying his shoes, but he LOVED this.  He learned every single knot the man taught him, and was really good at it!  Maybe I can use this as a springboard for the shoe-tying...

They have one of those coin spinner things that Caleb loves to do.  They each did one, and they put one down at the same time and let them race.  Ah, the little things!

The lighthouse

Lovely evening at a lovely place!

Munchin' on a Strawberry

I gave Abby a strawberry in one of those little mesh feeders.  I didn't expect much, but thought maybe she'd taste a tiny bit of the juice.  I certainly didn't expect for her to go to town on it like she did! She ate almost the entire thing by the time she was done.

My favorite part of this video is the adorable grin she gives right about at the 1 minute mark.  It warms my heart.  I took this video on what was a rather tough day for me, and then I replayed it about 10 times just to make myself smile.

Sunday, April 22, 2012

Strawberry Pickin'

Our favorite local market has strawberry fields that are officially open for picking!!  This is also the farm where I have my CSA (Community Share Agriculture), and those veggies should be coming soon too!

We went the other day to pick some strawberries.  The therapist in me (okay, I'm really not a therapist, except that I am) thought that this could also be a good opportunity for Abby to do some good bending and straightening as she picked the berries.  I was right!  She performed quite well!  :)

I thought this was a nice one of Caleb and me.  He doesn't pose too often!

She loved picking the strawberries...a little too much... :)

Saturday, April 21, 2012


I was introduced to this blog the other day.  It's written from the perspective of Avery, a baby with Spinal Muscular Atrophy, Type 1.  This is a degenerative disease that is incurable and lethal, and type 1 is the worst.  It's one of the more "common" primary diagnoses of CCMS, so I'm pretty familiar with it.

This family could be devastated and heartbroken, and I'm certain they have their moments.  But instead of dwelling on their daughter's disease, they are choosing to focus on her life.  They are trying to fill a lifetime into the short time she has and have created a bucket list.  One by one, they are crossing things off of the list, taking lots of pictures, and having lots of fun making memories.

Read it, cry, and smile at the bravery of this family.

Friday Funny

Just to make you smile! :oP

Friday, April 20, 2012

How to Encourage Your Child to Talk

We are off to a special needs night at a local museum tonight.  It's nice to be able to do positive things together as a family because of Abby's special needs, instead of always having to say to Caleb "We can't do____because of Abby..."  He is excited to see the otters at the museum tonight and so are we!

In the meantime, here is a link to a good article written by a speech-language pathologist about encouraging speech with your child.  While it is geared toward children with speech delays, the list has good reminders for all parents.  (Say it with me now...NOOOOO baby talk!!)  :)

Caleb, the Rock Star

This pretty much explains my son!  He cracks me up.  The team loved him!

This was a little over halfway, and Caleb was in good spirits.  He really did very well throughout the race, considering it was 3.1 miles. 

Thursday, April 19, 2012

Better Than Any Toy

Abby and Anna discovered the fun of the empty kitchen cabinet while we were on vacation.  Anna started it, but Abby caught on really quickly.


Silly girl!

When Abby came in, Anna kept trying to push her out

These girls are two peas in a pod...

...or double trouble!

drumming on the shelf

She thought this was the best game ever!

Here's a little video of their antics....

We Went to the Zoo, Zoo, Zoo...

Caleb's preschool went to the zoo a few days ago.  Two of his best buddies are in different classes, so he was really excited to spend the day with them.  "The 3 Cs" had a great time running around together!

This C is such a funny kid!

Of course, my C had to one-up him...

Caleb inherited my double-jointed elbows.  You can really see it here!

This C is hanging upside down/sideways on the sign...see his foot?

The 3 Cs!

Abby really liked the petting zoo--especially the goats!

Apparently, I was in this one's way.  No problem--just step right on over me!

Inside the turtle shell :)

2 headed turtle!!

My favorite picture of the day :)

It was nice to have a family day and hang out with a few of my friends.  Our kids got along really well and it was a really fun day!