When I grow up…

 

“I want to be a video game maker.”

The drawing shows Isaac holding a “Legend of Zelda” video game. 

My son’s got ambition!

First Tooth!

Happy Memorial Day! 

Ben has been chewing on his fingers for a couple of weeks now.  Mark noticed that he’s been working on a tooth, and guess what!  Saturday morning it poked through!  Lately, Ben has been his usual good-natured, content self, so if it weren’t for the chewing we’d have never noticed.  He is almost 13 months old, so I suppose kids who have CdLS must get their teeth a little later than typical kids do.  Isaac was 5 months old when he got his first tooth, and Jonny was around 10 months old.  I guess we need to buy Ben a toothbrush!

The above photos show Ben fast asleep in his brand new Exersaucer.  He is tolerating it for longer periods now, and it does help to strengthen his trunk muscles.  We have to pad the seat with a blanket or a soft toy because he is so small that he tends to accidentally smash his face into the toys in front of him when he gets tired or frustrated and pitches forward.

He is also starting to be mobile!  That is, he wiggles and turns to both sides (not all the way over on his tummy yet), and somehow manages to move himself away from where you put him.  Recently, I’ve been putting him on his back on a blanket on the living room floor, and 15 minutes later I’ve come back to find that he is no longer on the blanket.  He seems to really enjoy moving around, even if it’s not exactly purposeful movement at this point.

He is doing MUCH better with grasping and pulling at toys, and I think he’s realizing that he can have more fun with them that way.  His Auntie Aliyah bought him a rag doll with long red yarn hair to pull, and he loves pulling on a fuschia Koosh ball someone got him from the dollar store.  He is also doing much better with “tummy time”. 

We are back on track with his tube feeds now that he has recovered from his bout of strep.  We have decided to transition him a little more slowly from infant formula to Nutren Jr than before.  We also have restarted his oral feeds which we had stopped for a few days when he wasn’t feeling well.

We recently got him some new ear molds for his hearing aids – a sure sign he is growing!  His hair is also growing – I’ve had to give it a trim this weekend. 

It really does seem that Ben’s development occurs in fits and starts.  He seems to go months without doing anything new, then at other times it seems that he gains a couple new skills all at once.  I suppose that’s just the way it’s going to be…we are glad for ANY progress he makes and never take anything for granted.

 

Here’s a picture of the boys this morning at our local Memorial Day parade.  It was quite enjoyable, even though it rained.  Isaac was sorry that it was only 15 minutes long, while Jonny kept asking when we could go home.  Ben sat in his stroller and enjoyed the outing.  He’s such a good baby boy.

Dinner and a Movie

Tonight we decided to spend some family time together and neither of us wanted to cook dinner.  We also had a late evening thunderstorm, so we had to pick an indoor activity.

We ended up having dinner at our brand new Red Robin.  Dinner was OK.  I had a very good, spicy blackened chicken sandwich, and Mark had a mediocre bacon cheeseburger.    Here are the kids - Aliyah wasn’t with us because she was spending time with a college friend (or friends – I’m not sure who…some big sister I turned out to be!) 

Then we went to our TINY local movie theater (which is a part of our tiny mall) to see Shrek the Third.  The ticket prices were ridiculous ($5.50 for kids 3-11 and $8 for adults), and the concessions even more so.  I paid $3.10 for a bottle of water!  Now I remember why we don’t do this very often!  By the time all is said and done, you’re out $50.

The movie wasn’t even very good!  The first two Shrek movies were much funnier.  Jonny got bored about 90 minutes into the movie, and Ben was fussy.  Jonny, Ben and I actually left early (and didn’t see the end of the movie) and went to the mall’s toy store to look around.  We enjoyed looking at the toys more than the movie, I think.  I almost bought Ben a set of pom-poms – he had great fun grasping and pulling on the strands in the store.  I think I will buy him a doll with long yarn hair instead so he can practice his grasping… 

Next time I think we’ll have to think of something better to do to spend time as a family.  Any ideas for rainy evenings?  Here’s one idea: with the same $50 we could have bought a new multi-player game for our Wii and had fun playing it at home! 

One thing is for sure: there’ll be no more movies in the theater for a long, long time.

The Soccer Blues

 

Isaac has had a rough couple of soccer games.  The other teams had very energetic coaches and well-defined strategies, and completely blew Isaac’s team away (even though at this stage the games are not officially scored, the kids ALWAYS know who won).  Not surprisingly, Isaac has been a little discouraged, because, well, it’s more fun when your team wins every once in a while.

So on the way home after his last game, I tried to give him a little pep talk.  I told him that winning wasn’t the most important thing, and what mattered most was that he played with his teammates, had a good attitude, showed good sportsmanship, and never gave up.  He seemed to cheer up a bit.

Later that day, I was relating all this to Mark, and feeling rather proud of myself for passing on some valuable life lessons to my offspring.  I asked Isaac, “What’s more important than winning?” 

Without hesitation, Isaac said, “Losing?”

I guess I wasn’t that good a communicator after all. 

In other news, Ben has caught the strep throat I had last week.  Poor baby.  He’s now on antibiotics and doing a little better.

Isaac had to take “a sign of spring” in to kindergarten class for “Sharetime” today.  I gave him three suggestions: a picture of the bunny we found in our front yard, a photo of him in his socccer uniform, and ants (we know for sure that warm weather has come when these appear in our house).  Guess which one he chose?

 

The picture above was the bait we set out to catch ants.  Note that they weren’t at all interested in frosted flakes, but swarmed over the apple skin.  Go figure.  Mark captured several of them in a small plastic bottle and Isaac proudly took them to school this morning.  I am told show and tell went well, and there were no escapees.

Outtakes!

This post is dedicated to everyone who commented on how cute the boys looked in their church clothes in the last post.  This seems to happen every time I try to take pictures of more than one of them at a time.  Out of twenty or thirty shots, I only get one or two that are decent!  At least this time they didn’t have poor Ben stuck in the middle of their antics.

The End of an Era

 

Since July of 2002, we have had a large train table filled with countless little wooden train engines and freight cars and little wooden tracks and bridges.  We got them for Isaac’s 2nd birthday (I remember I worked an extra shift to be able to pay for them), and Jonny started playing with them when he was about 1 year old.  They were by far the best toy investment we’ve ever made.  They have been a fixture in the two houses we’ve lived in.  In our first home, they took up a large chunk of our living room, and in our current home, they have lived in the upstairs playroom.  Isaac and Jonny played with them every day for years.

But the boys haven’t played with them for several months now, so we decided to pack them all away, table included, to the attic.  In their place we have moved my computer desk and chair.  This way, the playroom will be more of a family room, and hopefully it will inspire us all to keep it tidier.  We have noticed that when the playroom is a mess that the boys won’t play here!

Jonny was a little sad to see Thomas and his friends go (even though he has ignored them for months).  And I can’t help feeling sad because if Ben were a typical child, chances are he would have really loved playing with those trains at this age, and his older brothers would have probably enjoyed building elaborate track setups for him.   But who knows?  Maybe we’ll get them out again for him in a few years. 

In other news, Ben isn’t feeling too well.  He seems to have caught Jonny’s cold and is coughing incessantly.  We also have switched him over to a mixture of Nutren Jr and Enfacare formula for his G-tube feeds, but he hasn’t been tolerating the switch very well.  It’s taking him AGES to digest his food and he has had lots of stomach bubbles which we have to vent for him since he can’t burp.  I’m not sure if it’s because he’s sick (we’ve had this problem in the past with his regular infant formula) or if the Nutren Jr is not agreeing with him.  I figure we’ll give it some time, and see if we are still having the same problem once he’s feeling better.  If so, we’ll talk to his pediatrician about possibly changing his formula.

Ben’s been slowly getting better with his oral feeds.  Still has a tendency to push food out of his mouth with his tongue, but that seems to be improving a little every day.  We are also working on teaching him to grasp objects.  He seems to be getting the hang of that too, and lately has been pulling on his MIC-KEY extension tube!  I just hope he doesn’t pull too hard.  He is also starting to sit unsupported for VERY brief periods (20-30 seconds at a time).  We’re so proud of all his progress.  He’s such a good little guy, even when he’s not feeling well.

The two big boys are doing well as usual.  Here is a picture of them before church this morning.  Isaac wanted to wear his Spider Man tie, but the neck of his shirt was too small, the tie choked him and he took it off.  I can’t believe how fast these two are growing up.

Overheard #2

 “If I wear my mask, no one will know it’s PJ’s.”

What a great (cheap) idea for Halloween!

Happy Mother’s Day!

 

A belated “Happy Mother’s Day” to all the Moms out there! 

I had a great Mother’s Day weekend. 

On Saturday we went to a used book sale at our local college where Aliyah is a student.  It was a gorgeous morning, which was a good thing.  For the first time since we’ve been here, we weren’t allowed to park on campus but had to walk a long way to and from our cars.  So I broke out the stroller for Ben, Isaac walked and Jonny rode on Mark’s shoulders.  Mark and I should never be allowed to go to used book sales.  We must have bought 50 books!  (OK, so most of them were kids’ books).  Heaven knows where we’re going to put them!  As it was, Ben lost his stroller for the trip back to the van.  I carried him in his front pack carrier, and the books rode in the stroller instead.

Then we went to Isaac’s soccer game.   There was a scheduling mix-up and the other team didn’t show.  Isaac and his teammates actually had a great time playing against each other for a change.  Ben slept for a long time on a blanket on the ground:

 

On Sunday we went to church, and I actually got there on time.

Mark made us ham and eggs for after-church-brunch, and prepared a lovely dinner later that evening.  He made Beef Wellington, sauteed potatoes and green beans.  The highlight of the evening, though, was creme brulee that he made the day before, chilled in the refrigerator, and caremelized using the tiniest blowtorch I have ever seen:

 

The final product was just like it looked on “Amelie” (which is a great movie, BTW), and it even made the same cracking sound!  It was PERFECT and very rich.  I know I gained about 5 lbs from just that one dessert!

Mark got me a digital LCD picture frame for a Mother’s Day present.  Who knew such a neat gadget existed.  I’d post a photo of it, but it’s already at my office showing photos of the boys all day long.

In other news, both older boys seem to have caught some sort of GI bug.  I hope they aren’t sharing…

New Sandals and One Year Well Child Visit

 

Yesterday was my half day so I was able to take Isaac to gymnastics and go to his soccer practice.  Unfortunately, the beautiful sunny day we were having up to that point was rapidly changing into a thunderstorm.  Soccer practice let out early, and Mark had to go to church for worship team practice.  I decided to take the 3 boys to our local (very small) mall to buy them some sandals for the summertime.

We braved the weather and went to Payless and after trying on at least 10 pairs of sandals between them, we were successful in finding some for Jonny and Isaac.  I saw some for Ben too, but although they were cute, they cost $11 and they wouldn’t stay on his feet, so I didn’t get them.  We were a rowdy bunch, I suppose, because the saleslady asked us 3 or 4 times if we were finding what we needed!  Jonny chose some very sensible sandals, but Isaac had his heart set on Spider Man light-up flip flops (for my Trini family, “flip flops” = glorified rubber slippers).  He loves them although he can’t seem to walk very fast in them.  He looks so cute trying to keep up with us wearing those silly things!

Today I went to work as usual, but the sore throat that I’ve been nursing for the last 3 days has been getting worse (maybe because I was out in the rain last evening).  I had it checked out, and it turns out I have strep throat.  And I shared my drink with Jonny and Isaac last night!!!  And I am always kissing poor Ben!  Let’s hope they don’t catch it.  Now I’m on my amoxicillin and hopefully I’ll be back to normal in 24 to 48 hours…

 

This afternoon was Ben’s one year checkup.  Jonny and Isaac were both there with us.  We didn’t see our regular pediatrician, and I felt sorry for the doc who saw Ben because we had so many issues to discuss.  Here’s a recap:

• Ben weighs 12 lbs 2 oz which is just under the 50th percentile for baby boys with CdLS, so his growth has stayed right on target.  For his G-tube feeds we are switching him to big-boy formula now, and the Feeding Clinic suggested that we try Nutren Jr. instead of the Enfacare he currently gets.  We’ll see how that transition goes for Ben. 
• We are continuing to encourage oral feeds every day!  He has been doing well with those so far.  He especially seems to love sweet potatoes and oatmeal with bananas.
• We are enrolling Ben in the CdLS Research Study through the Children’s Hospital of Philadelphia, and we need to have records sent there and forms filled out.
• Developmentally, Ben is still delayed in all areas.  He smiles and laughs, coos and has started babbling, reaches for and plays with toys but does not grasp things for long periods.  He sits briefly if his hips are supported.  He has started rolling from his tummy (if he is propped on his elbows) to his back.  He makes good eye contact if you are right up close to his face.
• His hearing is stable and we will continue to follow up with audiology regularly.
• Ben’s 1 year evaluation for Early Intervention is coming up next month as well.  We are hoping they will approve some speech therapy in addition to the physical and occupational therapy he already receives.
• And of course poor Ben had 3 vaccines (Pneumococcal, Hepatitis A and a combination Varicella/MMR).  Isaac was very sad to see Ben get his shots and said, “I think doctors are evil because they make people hurt!”

So it was quite a busy visit.  I’m a little sad when I think about just how far behind he is in his development compared to typical kids his age.   But I am thankful for what he CAN do and never again will I take any developmental milestone for granted!  Most of all I am grateful that he is healthy and happy and loved. 

Overheard #1 (Warning: Contains potty references)

 

You know you’re in a household with boys when you hear this exclamation coming from the upstairs bathroom: 

Isaac: “Jonathan, you’ve gotta see this!  I did a green poo!”

He seemed really proud, too!