Where has the summer gone?

Good question, since today is the first day of fall.

Let’s see…we visited our family in Pittsburgh and went to a very cool museum…

Jonny Isaac Stegosaurus

Ben digs the dino bones

We visited Washington DC for a day…

Washington Monument

And the next morning visited Mount Vernon and learned all about George Washington…

Jonny and Isaac Mount Vernon2

We took a brief trip to the Jersey Shore (which the older kids LOVED even though the water was much too cold for my Caribbean sensibilities.  Ben agreed.)…

Isaac and Jonny Cape May

Babies under rain umbrella

Meanwhile, Jonny turned six…

Jonny 6th bday

Isaac turned nine, and Natey turned one.  Isaac decided on hermit crabs for his birthday present…

Isaac and Nate

Isaac and hermit crab

Mark had a birthday this summer too, but I forget how old he is!  😉

Benji had his last home-based Early Intervention sessions with his awesome therapists, and got to visit his new preschool…

Benji preschool

…we played too many video games, learned some new piano pieces and read a couple of Narnia stories and Charlotte’s Web and tons of books for the school reading list, cooked with lots of fresh veggies from our local CSA, and before I knew it fall was here, and I hadn’t updated my blog in months!

I hope everyone had as much fun this summer as we did!

One Sunday Afternoon…

We actually had sunshine!  We’ve had so much rain this June that I’ve been wondering if it’s really summer!

We got home from church, had lunch, and decided to have the big boys turn off the video games (after all, they can do that if it rains), and play outside.

First, we got out the bubbles.  We got Jonny a Zome Tool Crazy Bubbles set for his birthday (because I am a chemistry geek at heart), and it really is very cool!  It’s neat to see how the bubbles form within the structures you build, but then the wind takes over and it acts just like a large traditional bubble blower.

Tetrahedron bubbles

Both big boys loved it.  Nate giggled every time  there was a long stream of bubbles.

Jonny with pentagon bubbles

We got out the Slip ‘n Slide for a bit.  The big boys enjoyed it but the water was frigid!

Jonny slip&slide

Isaac slip&slide

The babies watched intently.  I know from past experience that Ben doesn’t much care for the cold water.  I tried Nate and got an almost identical reaction.  Can’t say that I blame them.

The spectators 2

The big boys practiced their gymnastics.  Mark and Isaac tried to teach Jonny how to do a cartwheel.  I think he almost got it.

Isaac handstand

Jonny cartwheel

Mark and the big boys even washed both vans!  By the end of it all, Ben fell fast asleep in the grass.  He really does like being outside.

Ben asleep in grass

I am really hoping that this summer we can spend more time outdoors.  We are actually going house-hunting over the next few days.  We are hoping to find a home with a bigger, safer yard for all our boys to play outside more.  Wish us luck!

The Last Days of Summer

The month since Nate was born has gone by quickly. Along with the usual demands of taking care of a new baby, and Ben’s therapy sessions, the big boys have been home all summer. Even though this year we didn’t really do anything interesting or really fun, we still enjoyed each others’ company. And since I normally work full time, this summer was especially wonderful for me. I rarely have the opportunity to spend this much time with Mark and the kids.

In the last couple of weeks we have had some doctor and dentist visits:

Isaac and Jonny both had their regular dental checkups. We are ever so pleased to report that NEITHER ONE HAD ANY CAVITIES!!! That is especially a relief since Jonny has had FOUR cavities repaired in the last 6 months or so. We were so thrilled!

Then they both had their regular checkups at the pediatrician. They are both growing well and perfectly healthy. Jonny didn’t do too well with his vision screen at the pediatrician’s office. We had his vision checked yesterday at the optometrist and he doesn’t need glasses. Isaac needed a booster on his varicella vaccine, and poor Jonny got FOUR shots in preparation for entering kindergarten. They were both very sad to get shots, but they were troopers. I felt so sorry for them that we got them lots of Pokemon video games as rewards…but that’s another story.

Nate had his one month checkup. He is now gaining weight nicely, and was up to just shy of 10 lbs. He is healthy, and his only issue is a bad case of neonatal acne.

Ben had an audiology checkup to see if his hearing aids are at the right setting. They tried checking his hearing by using his behavioral responses to sound, but that wasn’t too helpful at the lower decibel levels. We therefore have to arrange an ABR under sedation to get a better idea of what he can actually hear. He hasn’t had an ABR since his first year of life, so I’m curious to see if his hearing has improved as he has grown, since this is something that can happen with kids with CdLS.

We also made him an appointment to see the pediatrician to talk about his feeds and some other issues. Ben seems to have gone through a growth spurt this summer! He is now almost 19 lbs, and we know he has grown an inch or two in height. So his tube feeds are going well, but we had been having some awful constipation problems. We are changing his formula to include some fiber, continuing his prune juice, and increasing his water intake, and already we are seeing an improvement.

This weekend we went to the open house for Isaac and Jonny’s school, except that it wasn’t. A teacher hasn’t yet been hired for Isaac’s 2nd grade class, and much to my disappointment, the classroom was locked so we couldn’t even see it. So we headed to the library instead. Ben had a great time getting out of the house – we haven’t been on too many outings this summer. That’s how boring we have been lately.

I am sad that summer is ending and the big kids will be back to school next week. I will miss them.

I do hope that next summer we can do some more interesting things than we did this year!


We have a really tiny yard.  Last summer I wanted to buy the boys a wading pool, but Mark said it would take up too much space, and it would kill the grass.  Instead I talked him into buying a Slip-n-Slide since it can be easily rolled up and stored in the basement between uses.  But for some reason we never used it last summer at all.

Today was my half-day off work again.  It was a beautiful 93 degrees outside!  Perfect weather for finally breaking out that Slip-n-Slide!

The big boys had a blast.

Here they are demonstrating what NOT to do.

Mark and I took lots of pictures, then sat in the shade to watch with Ben.  I got the bright idea to put Ben’s feet in the little pool of water that had accumulated at the end of the slide.  I guess it wasn’t such a bright idea after all.

The big boys played for a long time.  They are already asking to get it out tomorrow again.  Who needs the beach or a pool?  😉


I get a half-day off work once a week. Lately, that half-day has been spent sleeping! Last week, however, was quite different. Mark picked me up from work and we drove to Hershey, which is about an hour and 15 minutes away. Mark thought it would be nice to visit the lovely Hershey Gardens. I’d never been there before, although we’d once lived in the Hershey area for 4 years.

It was early afternoon when we arrived, but the temperature was probably in the mid to upper 70’s and quite pleasant. We began at the Children’s Garden where Jonny’s found his favorite attraction – the Hershey Kiss fountain.

We visited the Butterfly House. We learned so much about the life cycle of butterflies!

If you look closely at the photo below, you’ll see Isaac has caught a butterfly on his card.

We did lots of walking, but fortunately for my swollen ankles, there were plenty of benches around. Ben slept for most of the beginning of our trip, but eventually awoke. He really enjoyed seeing all the trees and flowers.

Finally, the big boys began to get whiny and hungry, so we headed to Friendly’s for dinner and some ice cream.

What an awesome afternoon! It felt more like a mini-vacation than a typical half-day, although I still managed to nap on the drive to and from Hershey!

Whatever Works…


This week I’ve been off work yet again.  I’ve been enjoying this time with Mark and the kids, even though we haven’t gone anywhere fancy.  In particular, I got to spend a lot more one-on-one time with Ben.  I am realizing just how much of his daily routine I am missing.  He is continuing to progress – he can sit unassisted for about a minute or two at a time now (but still can’t catch himself if he topples over), and here he is shaking a rattle for the first time (we don’t have too many that his tiny little hand can grasp).  He was so proud of himself!

Ben with rattle 

Here he is playing with a new spinning toy.  He loves it.  He scooted himself up very close to it so he could play with it with both arms:

Ben with spinning toy 

This week I was able to participate in all Ben’s Early Intervention sessions which is a rare treat.  Mark usually tells me what happens in the sessions, and I read most of the little yellow notes that his therapists provide, but it’s not the same.   For me it is so much better when I can be there in person.

One of Ben’s goals with Occupational Therapy is to eventually eat by mouth.  We have been working on this for a year or more, but hit a roadblock of sorts a few months back when Ben rejected having anything placed in or around his mouth.  His OT, however, is so patient and so good with him.  Slowly, she has persuaded him to start taking small tastes of food by mouth again.  This week, I mentioned to her that Ben seemed to tolerate objects (e.g. toothbrush, washcloth, fingers, etc.) in his mouth during bathtime.   So she suggested bringing his bathtub down to the living room to see if he would be more receptive to eating.   “Whatever works,” she said.  She was very patient with him…and he did great!  

So the first and last photos in this post were taken of our oral feeding session last night…in the bathtub, and with his singing flowers that Auntie Dawn gave him for his birthday (he also loves these, thanks, Auntie Dawn!)  Again he did very well; he did not fuss or gag once, and by the end he was smiling and giggling.  I hope we can get back on track with his oral feeds.

“Whatever works” is going to be my new motto!

Ben eating in bathtub

Hamburger Buns and Nectarine Cobbler

Ben at Farm

It’s been quiet around here lately.  I’m off again this week, but mighty disappointed at the cold and rainy weather we’ve been having for the last 3 days.  Why couldn’t it be like that when I was at work last week???

Aliyah returned from Trinidad on Sunday night, and the boys are very happy to have her back.  Isaac is boring entertaining her with his Legend of Zelda music.  He already knows how to play several melodies on the piano, so I’ve officially signed him up for piano lessons.  I hope he enjoys them.

We went to the farm of a friend on Saturday for a party which is where I took these pictures of Mark and the boys.  We saw lots of corn, but no animals.  Isaac wanted to explore the cornfields, but Jonny was having a meltdown…

Mark Isaac Ben

Isaac and Jonny

I decided to try a couple of recipes this last weekend.  First, I made these hamburger rolls which turned out GREAT.  They were very hearty:

Homemade hamburger buns

Then I made a nectarine cobbler which didn’t turn out quite like I expected (this being my first time making cobbler).  The crust puffed up HUGE and somehow swallowed up the nectarines.  It was still quite tasty coupled with vanilla ice cream and Mark’s delicious dulce de leche:


Here’s the recipe for the hamburger buns:

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