Happy Halloween!

We had such a nice time! 

Isaac was a very scary skeleton (eventually he found the mask a little uncomfortable), Jonny was Link from the “Legend of Zelda” (but most people thought he was Robin Hood), and Ben was a penguin.  The weather was unseasonably warm, just like it was last year.

Mark took all three boys trick-or-treating this year.  Ben was in a cheery mood, laughing and “talking” up a storm!

The boys got way too much candy.  Mark mentioned something about a parental tax on their takings.  Sounds good to me!

We ran out of candy after an hour and fifteen minutes.  We had chicken noodle soup for dinner, and the boys went to bed exhausted, without a fuss. 

Can’t wait for next year!

A Halloween Tale

Isaac decided to write a Halloween story last week.  Well, it’s sort of “Halloween meets Legend of Zelda”:

Even when he’s not playing video games, he’s still thinking about them!

Preschool Halloween Party

This last Friday was Jonny’s Halloween party at preschool.  I had the day off, so I was lucky enough to be able to go along with Jonny, Mark and Ben.  Isaac asked us to give him the day off from school so he could come too, but we quickly nixed that idea.

Jonny went as Link from the “Legend of Zelda” series of Nintendo video games.  Yes, we are all Zelda geeks in this household (I’ll have to do a post about that sometime).  This costume is actually a hand-me-down; I’d actually made it for Isaac two years ago.  Ben got to wear his costume too:

 

It was a little warm, so we took it off after about 30 minutes.  The party was so much fun.  I enjoyed seeing all the other little kids all dressed up.

 

I’m not sure if I mentioned it before, but my mom was visiting from Trinidad these past two weeks.  We didn’t get to spend as much time together as I’d have liked because I worked just about every day she was here, but we all went out to dinner at our favorite Japanese Hibachi restaurant on Friday night.  The food was excellent, and the boys enjoyed the show.  We all had some green tea ice cream for dessert.  Isaac really loves that stuff.  Even Ben had a little taste and didn’t mind it too much even though it was cold.

Mom went back home today, and made it back to Trinidad safe and sound.  We can’t wait until her next visit.

Eyes and Ears

 

Ben had a formal eye exam for the first time in his life about two weeks ago.  For months we’d been noticing that his eyes tended to drift outward at times, but I couldn’t really tell which eye was the most problematic.  (You can see it just a little bit in the photo above – look at the little points of light on his eyes). His pediatrician made the referral to our favorite tertiary care center, which is an hour’s drive from our home.  We really loved the doctor who saw Ben.  She was a wonderful lady who had obviously done some reading on CdLS, and knew what to look for.

 

She agrees that Ben has exotropia which is a kind of strabismus.  He is also a little nearsighted.  The good news is that he isn’t really favoring one eye over the other, the exotropia is intermittent, and he doesn’t need glasses yet.  We’ll be patching alternating eyes for an hour each day, and rechecking his vision in about six months.  Our doctor gave us a box of patches to get started but we promptly lost them.  We have to order some new ones, and hopefully Ben won’t mind them too much.

After that we went to have Ben’s earmolds for his hearing aids resized.  Jonny got to play with the squishy molding material. 

 

Today we had Ben’s hearing tested again.  We didn’t have an ABR, but rather they tested his ability to turn toward sound at different decibel levels and different frequencies while he was awake.  He did very well, and certainly it seems that his hearing is not deteriorating at all.  He won’t need to have another test for about 6 months. 

In fact we don’t have ANY appointments scheduled at our favorite tertiary care center until April of next year!!!  Let’s hope it stays that way!

It’s Been a Good Year…

 

Today was my one year blogiversary.  How time flies!  When I first started this blog, Ben was only 5 months old and 9 lbs, and had just had his Nissen fundoplication/g-tube surgery.  We were still reeling from the shock of having a new baby who had so many medical and developmental issues.  I started this blog mainly to keep in touch with friends and extended family.  I also hoped it would help me remember to be thankful for all the happy, funny and silly times that we have, even though life is difficult sometimes.  I think blogging has definitely helped, and it has been therapeutic for me.  Best of all, I have met so many other awesome people who are also sharing their stories online, and that has helped me alot on my journey.   

 

We’ve been busy lately.  My Mom is paying us a visit all the way from Trinidad, and the boys have ALL been very excited to have her here.   Isaac is thrilled that she enjoys hearing him play his Legend of Zelda piano solos, and Jonny has someone else to bother since Auntie Rhoda isn’t here anymore.  And Ben enjoys having someone else to spoil him.

Last weekend we went to the pumpkin patch.  The weather was actually not too cold, so Ben didn’t mind at all this year, and actually enjoyed being in the stroller.  The older two had a great time (Isaac is still wearing his soccer uniform from the morning’s game).

 

We did carve the pumpkins, but perhaps we did this a little too early.  We had 70 degree weather and rain all week, so I fear the pumpkins will be nothing but mush by the time Halloween rolls around!

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

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.

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.  

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:

Here’s how we do it:

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!

Bad Parenting Tale #1

Mark and I had tickets to the musical “Gypsy” for months.  We had it all planned; my sister Aliyah was going to babysit, and Mark and I would have a date night.  Unfortunately, Aliyah had to go to Trinidad at the last minute (hi Aliyah!), and so we were left babysitter-less.  Since Ben is g-tube fed, there aren’t too many other people around whom we trust to manage his feedings.  Our state doesn’t provide respite care for children with special needs until the age of three, so it looked like our expensive tickets were not going to be used.

Or weren’t they?

Mark had the great idea that I could still go and take Isaac, our seven year old son, as my date.  After all, he’s our musical kid who likes dancing and singing.  We didn’t know anything about this particular show at all.

 

I enjoyed the show.  It was quite entertaining, but some of the content was, shall we say, not entirely suitable for a seven year old.   But Isaac thoroughly enjoyed himself, and thought the performance was quite amusing.  It let out quite late, and he fell asleep on the way home.  Surprisingly, he awoke at his usual time this morning asking for cereal.  I sent him off to his Catholic school praying that he wouldn’t act out any scenes from Gypsy for his classmates.

My only consolation was that we didn’t have FRONT ROW SEATS like some of our dear friends who also took along their seven year olds!!!! 

So what lesson did we learn last night?  Always check Wikipedia before seeing a show with your child! 

(On a side note – don’t feel too sorry for Mark for missing the show.  He’ll be taking Isaac to see the Steelers play in Pittsburgh this Sunday!)