Hiatus

Mark’s stepfather passed away unexpectedly in an accident last week, so we spent another weekend in the Pittsburgh area for his funeral.  We were all very sad, and the boys will miss their Pappy.  We have just returned home this evening, and I probably won’t update the blog for a few more days until things settle down.   

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!  😉

My Boys

I am hopelessly outnumbered!

Here are Mark, Isaac and Jonathan getting their photos taken for soccer this evening.  Mark is coaching Isaac’s team this year.  We finally found out that Jonny’s uniform is black, a very forgiving color for a little boy.  Today, to my relief, the weather was actually rather warm, that is, until the sun set.  Then the cold set in rather quickly.

Mark and Isaac soccer

Jonny soccer uniform

Look at this neat thing I found for Ben at Target!  A tray for his Bumbo seat!  I had seen them online before, but this way I didn’t have to pay for shipping.  It doesn’t hold him in the seat, but it is great for putting his toys right where he can reach them.

Ben Bumbo Tray

One of Isaac’s top teeth fell out this last weekend.  He now has a slightly snaggle-toothed appearance – very cute I think:

Snaggle tooth Isaac

Mark played his double bass for praise and worship at church last Saturday night.  I was desperately trying to arrive on time with the three little ones, but that’s when Isaac chose to lose his tooth (in the parking lot!!)  Church was running late, so we still made it on time.

Mark bass

And finally: the miracle story of the week!!!!!

Washing machine

This is our 6 year old GE washer.  It died last Saturday.  The repair guy told us on Monday it would cost $250 to fix it.  We only paid $320 for it, so we figured it wasn’t worth it.  However, my ever-resourceful husband managed to fix it for a fraction of the replacement cost, and it’s now running beautifully as we speak!

This weekend we are heading off to Pittsburgh to visit our extended family, and also to attend the CdLS family gathering in Pittsburgh.  We’ve never met any other kids with CdLS in person before, so we’re looking forward to meeting other families.  Have a great weekend!

Is It Fall Already??

Cold Jonny 

I was just getting used to the summer!

We awoke eagerly on Saturday morning, ready to go to Isaac’s soccer game.  We checked the temperature and the day’s forecast.  Would you believe that it was in the 50’s when we awoke, and the high was supposed to be in the 60’s all day???  It seems that fall is officially here.  The arrival of cooler weather always is a shock to me, even after living in a temperate climate for 15 years.  I guess I’ll always be tropical at heart. 😉

Cold Benji

We went to our soccer game.  Fortunately we had blankets for Jonny and Ben.  Eventually Jonny climbed into my lap and covered us both with his blanket, and I was so grateful.  Mark wondered why I didn’t take any photos during the game – I was trying my best to keep my hands warm!  Ben had a nice thick blanket all to himself.  He was perfectly comfortable, and managed to sleep through most of the game.

Gourds 

I went shopping later in the day, and the local farm had all their fall gourds and mums on display – very colorful.

Mums

This evening we went to dinner at the home of some friends from church.  They live out in the country (more so than we do), and their neighbor raises horses.  Isaac got to touch a horse for the first time, after a little encouragement.  He was much more interested in the horse than he was in the cows from a few weeks ago.

Horse 

Isaac also lost his first upper baby tooth on Saturday night in the parking lot right before church.  He looks so cute, but he won’t let me take a picture of him.  I hope the tooth fairy remembers to do her job tonight!

So, I’d better unpack all my winter clothes from the cedar chest, since the chilly weather is probably going to stick around for awhile.

Catsitting with Jonny

Emmie

We don’t have any pets.  I would love to have a nice kitty cat, but Mark and Isaac are very allergic, so I can’t.  Our neighbors went out of town last weekend, and they asked if we would take care of their little kitty named Emmie.  I happily agreed to do it.

Where is Emmie

Jonny came with me every day to take care of Emmie.  He really loves her!  She is not used to having kids around, so it did take her a while to warm up to Jonny, but she did.  He would ask to go and see her every couple of hours.  She certainly never had a chance to get lonely!

 Jonny and Emmie 2

Before long, she wouldn’t give me the time of day, but would play happily with Jonny.  He’d throw her toy mice and she’d scamper after them.  She even posed for him to take pictures of her! The first photo in this post was taken by Jonny – everytime I tried to get one, she would move away.

Jonny with Emmie 1

So if anyone needs a cat-sitter, we’re your team!

Posted in Kids, Pets. 3 Comments »

Little by Little…

Ben sitting unassisted

…we find reasons to be hopeful.  These photos were from last week’s physical therapy session.  Ben is doing so well with his sitting these days.

Ben with therapy ball

Each little gain Ben makes is so precious to us.

Ben with therapy ball 3

Soccer!

Isaac soccer game 

It’s that time again!

Isaac has played soccer with our local AYSO chapter for almost two years, and Jonny is finally old enough to play this time.  Both boys are so excited!  Mark has even signed up to coach Isaac’s under-8 team.  Jonny’s first practice was on Thursday, and Isaac had practice on Monday and his first game yesterday.

Jonny soccer game

Isaac’s uniform is blue which is his favorite color.  “Finally!”  he said.  He was purple last year and wasn’t too happy about that because he thinks purple is a “girl color.”  We don’t have Jonny’s uniform yet, so we don’t know what color it will be.

Ben at soccer gameJonny and Ben 2

Ben always has a great time being outside and watching, as long as it’s not too hot.  As usual, Jonny won’t leave him alone! 

Jonny and Ben 1

Isaac did very well in his game yesterday, going after the ball instead of just standing there and watching the game go by.   Jonny had a great time strutting around in his brand new cleats and shin guards.  I hope all three boys enjoy this season.