Life as a Leach

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 mo...

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 kn...

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!

Does she look guilty, or what?!

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!  :)

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.  Ima...

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...

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...

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.

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... :)

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.

Just to make you smile! :oP

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!!)  :)

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. 

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. Peekaboo! 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....

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!