Happy Easter!

We have been continuing to enjoy unseasonably warm temperatures in central Pennsylvania.  I’m not complaining.  We had the most gorgeous Easter weather in recent history, with temperatures that were over 80 degrees!  I seem to remember snow on one miserable Easter weekend not too long ago, so I am thrilled about the heat.

We went to church and arrived just a little late.  Usually it’s not a good thing to arrive late on Easter Sunday.  We ended up parking miles away from the front door, but we did find somewhere to sit in the sanctuary.  Church was good, Nate and Ben behaved themselves in the nursery, and the big boys had candy in Sunday school.  Then we went home.

I decided to do a small Easter egg hunt in our yard this year, mainly for Nate.  Since he’s not yet two, I just scattered the eggs around and really didn’t hide them.  But we found that the big boys had trouble finding brightly-colored eggs that were in plain view.  Go figure.

I wondered if the big boys would be interested in gathering eggs, and guess what!  They still were!

Ben doesn’t eat candy, so we got him an Easter pinwheel instead.

Later that evening, we all went to the park.  We took Isaac’s bike (which he has outgrown) and tried to get the big boys used to the idea of riding without training wheels.  I hope this is the year we finally get them to learn how!

Ben loves being outside.  We’d like to bring his gait trainer to the park the next time we visit.

Nate was fascinated with these railroad ties for a few minutes…and then he became more interested in the small stream that runs through the park.  Why is he always interested in the one or two areas that are unsafe for babies??

I’m not sure why Jonny’s face looks like that.

Because we spent so long at the park (and because I had a great Easter afternoon nap!) I ended up starting dinner late.  The boys had noodles and chicken nuggets for dinner, and Mark and I didn’t eat our Easter ham for dinner until nearly 10 pm!  Oh well.  Maybe I’ll be more organized next year.

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One Hand Clapping

OK, so Ben doesn’t make a sound yet (the faint clapping you hear is actually Mark in the background), but he certainly enjoys himself!

Warm Winter Clothes

All shopped out

Two weekends ago, while we were in Pittsburgh, we had a chance to leave our two older sons with their aunt, uncle and cousins.  We were therefore able to take Ben to a REAL mall to get some new clothes for the fall and winter without hearing “I’m bored!” and “Can you buy me a video game?” every five minutes.  Ben actually fell asleep halfway through, and didn’t care what I tried on him.

I don’t usually care much about clothes, but both Mark and I feel that we should try to dress Ben as nicely as possible.  It isn’t always easy.  We have a couple of issues:

  1. Ben has a MIC-KEY button for feeding, and so each article of clothing should allow easy access to his abdomen.  That means it either has to have snaps all the way down, or it needs to be a two-piece outfit, and the shirt can’t be a onesie that snaps at the crotch.
  2. Ben has a congenital malformation of the right arm (which the CdLS Foundation diplomatically refers to as a “limb difference”, and should not be confused with a “deformation“).  He isn’t able to extend the right elbow at all, and the entire right arm is much shorter than the left.
  3. In general, boy clothes aren’t as cute as girl clothes.

The first issue is relatively easy to address, although it can be challenging to find non-onesie shirts for kids under a 24 month size.  (Ben is currently in 3-6 mo or 6-9 mo clothes, depending on the manufacturer).  We found lots of  front-snap sleepers for bedtime, and we did manage to find quite a few nice two-piece outfits.

Two piece outfits

The second issue has proved to be a lot more difficult to manage.  We have tried rolling up the long sleeve on the right arm, but it gets bulky and uncomfortable for Ben, and he isn’t able to move the entire arm well at all.  What we really need is a short sleeve on the right arm, except for sweaters and outerwear.  

Anybody know a good seamstress?

So, some of the shirts that we bought Ben will need to be altered (by someone other than me!  We’ll probably have to take them to a seamstress).

We got lucky with these shirts.  The sleeves are in two parts, so we can alter them ourselves with some pinking shears:

Brown outfit we can fix ourselvesSleeves we can fix ourselvesPants

Here’s how we do it:

Cut sleeveMuch better now

I think we did a good job of resolving the third issue.  We got the clothes from Target, Baby Gap, Gymboree and Kohl’s.  Of course, Mark did buy one outfit for Ben (when I wasn’t even around) which disregarded just about everything I’ve just written about here!

This was ALL DADDY

Pennsylvania CdLS Gathering

Ben at CdLS gathering 

This weekend we attended our first ever CdLS family gathering!

On Friday I rearranged my schedule to work just a half-day, thinking that we would be ready to leave as soon as Isaac got home from school at 3 pm.  I should have known better – we are not the world’s most organized family, so we actually set out closer to 5:00 pm.  All three boys tolerated the car ride amazingly well.  The older two are quiet as long as their Gameboys are charged, and Ben slept most of the way there. 

The family gathering took place the next day at the Center for Creative Play in Pittsburgh, PA.  What a neat place that was!  I wish we had something like that in our little town.  We were surprised at how many people were there.  There were about 14 individuals with CdLS (and I think Ben was the youngest one there; the oldest person with CdLS was 28 years old), and lots of friends and family.  We met some truly wonderful families and parents, and enjoyed meeting all the kids.  It was surreal seeing all these kids whom we’ve never met before who look so much like Ben.  (BTW: I’m not posting any of their photos here because I didn’t ask their parents’ permission to do so.)

Isaac and Jonny castle 

Mark spent most of the meeting time out in the play area with the boys, while I stayed and listened to the speakers.  Ben really loved this wooden activity center.  (I wonder where we can buy one like it.)  Ben enjoyed being held by lots of different people, and he was quiet and content for the most part.

Ben at CdLS gathering 2

The food was good.  They even had our favorite pizza with basil and tomato!  And it was nice to see all of these kids with CdLS who were eating by mouth!  🙂

Eating

Truthfully, before we went to the family gathering, both Mark and I approached this weekend with some trepidation.  We weren’t sure how we would handle seeing some of the older kids and adults with CdLS, and we worried that it would be too overwhelming.  For me, anyway it turned out not to be as scary as I expected (although Mark’s experience was a little different, so I won’t speak for him).  I have a sister with developmental disabilities who is now 24, and the older kids reminded me so much of her. 

I hope we get the opportunity to attend more meetings in the future.  Mom: you will have to come and bring Maryam too!  😉