CdLS Awareness Day 2014

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So, here we are three and a half years after my last post, on CdLS Awareness Day.

Ben is now 8 years old.

We can hardly believe it ourselves.

He is doing remarkably well.   He still continues to enjoy exceptionally good health.  He is still a little guy, and weighs about 30 lbs.

He is eating all his daytime meals orally with a spoon (no more Nuk brush!), and he can drink liquids from a cup.  He is not close to being able to feed himself, however, and he sometimes plays games with the person attempting to feed him.    I have to say that he tends to eat beautifully for me.    What can I say?  He loves his Mom.  🙂    He still gets some supplemental formula tube feeds overnight.

He is still not walking, but he has learned how to get into a kneeling position and can pull himself up to furniture.

He still does not talk, but he hums and vocalizes a lot!  He has a very sunny disposition…most of the time.

It amazes me that he never seems to stop learning.

Life is good!

Benji smiling swing

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Welcome, Spring!

This weekend was chilly, and today was rainy, but what gorgeous weather we had last weekend!  The temperatures got up into the 70’s and we were able to get out and enjoy the sunshine.  I had the day off last Friday, so while the big boys were at school, Mark and I took the little ones to the park.

Ben and Nate both went on swings and slides for the first time!  They had an awesome time.  We really should go to the park more often.  They both took good naps that day.

Nate’s an old pro with slides now.  His Sunday School class at church has a little slide in the room and he’s so thrilled that he doesn’t mind me leaving him there during services.

On Saturday morning, Isaac had a piano recital.  After the recital the boys were able to run and play outside for a bit.  Saturday evening we were invited to some friends’ house for dinner.  The beautiful weather continued, and the boys were able to play with their friends in their large fenced backyard until after dark.

Nate was given this balloon by someone during Isaac’s recital.  We hoped it would keep him quiet.  It didn’t.

Jonny thought he’d try his friend’s skateboard and found it was harder than it looked.  In any case, his friend told him that he shouldn’t be skateboarding in his “handsome clothes”.

Nate found the chip bowl:

I am SO glad that winter is over!

Feeding Difficulties

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Ben has been tube fed since birth, and ever since then, we have been determined that he will one day learn to take most of his feeds by mouth.

Ben, however, has other ideas.

Our dedicated occupational therapist has been helping us to work with Ben for the last 2 1/2 years to get him to make the transition to oral feeds.  Unfortunately, we go through the following cycle over and over again:

  1. Ben does reasonably well for a few days,
  2. Ben then regresses and absolutely refuses all attempts at oral feeds,
  3. We back off for a few days to a few weeks.
  4. Repeat.

When Ben was a year old, we took him to a feeding specialist at our favorite tertiary care center.  Of course, he did really well during that session.  Our goal was to get him to eat at least 30 cc by mouth so that we could do a swallow study to make sure he wasn’t aspirating.  Unfortunately, we haven’t been able to get him to that 30 cc goal a year and a half later.

Finally, we visited the feeding specialist again 2 days before Christmas 2008, a year and a half after our initial visit.  We probably shouldn’t have waited this long.  Ben did reasonably well during that session again, the specialist was great, didn’t scold us for not bringing Ben in sooner, and he offered a lot of good, practical advice.  He instructed us to keep feeding attempts short (10 minutes) and consistent, offer very limited interaction during the feed itself, until Ben cooperates by opening his mouth for the spoon.

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At that point we are to praise him, and offer him a brief reward (e.g. getting to flip a few pages of one of the board books that he loves so much), remove the reward, and start again.

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We came home very hopeful, since Ben had done so well that day.

Unfortunately, we have hit another bump in the road; another period of regression.  Ben has started to open his mouth less and less, and he gets more and more upset with each attempt.  We have gotten to the point where he won’t even take one spoonful in the 10 minutes; he clamps his jaws shut tight, and he shakes his head from side to side.  Our feeding specialist is awesome; he is accessible by email.  I told him the problems we’ve been having, and he suggested offering Ben a single spoonful, holding out until he cooperates, however long that takes, and then rewarding him with praise and removing him from his highchair and letting him play.

Sounds good in theory, but unfortunately we are afraid that Ben can outlast us.   He is a stubborn little guy when he wants to be, and we do have three other kids to attend to.  Worst of all, since we started all this Ben hasn’t been his usual happy giggly self, and that makes me sad.

So I’m not sure what we’re going to do at this point.  I think we’ll pay another visit to the feeding clinic soon and see what strategies they suggest.  If we’re not successful in getting Ben to transition to oral feeds with a home-based program, we may need to enroll him in an intensive feeding program at the feeding clinic which itself isn’t an easy option because it is located an hour away from our home.

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Meanwhile, Nate has recently tasted his very first bites of baby cereal.  He made it look so effortless.  Ben was sitting just a few feet away in his highchair, and was completely unimpressed.

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Who knew that such a basic thing as eating could be so difficult for some kids.

December

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Thanksgiving weekend was REALLY busy, but fun.   Mark’s sister, brother-in-law and their two sons visited all the way from Pittsburgh.  We really enjoyed having them over.  Our boys were very excited to have their cousins here, and all the kids played well together.  It was nice to spend some time with family getting caught up.  We had our turkey with the usual fixings, and there are LOTS of turkey leftovers to enjoy this week.

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On Friday, I did a (very) little Black Friday shopping, and went to work for a few hours.  Nate had his four month well baby check that afternoon.  He is growing well (17 lbs 9 oz) and is developmentally on target.  His eczema was TERRIBLE, though, and the pediatrician prescribed him some triamcinolone cream to use along with the moisturizers we’re already slathering all over him.  He only got 2 shots (Prevnar and Pentacel) as well as an oral vaccine (Rotarix).

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On Saturday we made our annual trek out to the Christmas tree farm.  This proved to be a little challenging this year because we now have two babes in arms.  Initially we planned to just pick a pre-cut tree from the barn.  However, once we arrived at the farm, the big boys saw the tractor and really wanted to go on the hay ride.  In the end, we all rode on the tractor, and I waited with the babies at the drop-off point while Mark took Isaac and Jonny to get us a tree.

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This worked out well since the weather was fairly warm (around 50 degrees).  Ben loves being outside when it’s not too cold and he was in a great mood, and he smiled and giggled, and even stood up nicely for awhile, leaning back on my legs for support.  And surprisingly, Nate was quiet.

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The big boys came back with our tree, and we rode the tractor back.  They wrapped up our tree and we went home.  I’m glad we got the tree on Saturday because the weather has been colder and wetter since then.

Can you believe it’s only 23 days until Christmas???

Halloween and Fall Photos: “Where You Live”

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We had a very fun Halloween.  I had the day off from work which is ALWAYS a good thing.  The big boys were so excited to get in their costumes.

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Isaac had a grim reaper costume complete with a face mask that seemed to drip bloody fluid.  I can’t believe we let him get that!  He was under strict instructions not to drip any blood around little kids.  Not only was his mask scary, but he could barely see while wearing it!

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Jonny was a racecar driver.  I got Ben a surgeon’s costume at the very last minute for half off at K-mart.  It claimed to be a size 3T-4T, but it was a very tight fit on Ben.  Even the hat was close to the right size for him!  Nate got to wear Ben’s penguin costume from last year.

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We went trick or treating up and down our street.  Just a few houses after that, Jonny found a hornet crawling in his hair, and Isaac decided he’d had enough, and wanted to go home.  That was just fine with us!  We spent the rest of the evening handing out candy.

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We live in rural central Pennsylvania.  On Sunday we decided to take some outdoor family photos.  Unfortunately, the weather was cold and overcast and didn’t make for great photos.  We should have gone out on Saturday when it was sunny!  Still, quite a few of them turned out well.  We went to a nearby national park; a truly beautiful place.

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My dad was visiting and was able to come with us:

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Central PA isn’t too bad to live in.  I just wish it was warm year round!

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Memory Loss Meme

Whew!  I’ve had an extremely hectic couple of weeks.  I’ve had to work four late nights and both days last weekend, so that left very little time for blogging!  Hopefully things will be better next week.

I was tagged for this by Misty at A Day in My Life.  The instructions were pretty simple; open the 6th photo folder, then open and post the 6th photograph from that folder.  And hopefully you can remember what it is:

Since this is a relatively new computer, this was taken less than a year ago.  Jonathan got out ALL the plastic animals that he owned and spread them out on the playroom floor.  For some reason, they are migrating toward my computer chair!  I took the photo because they looked so purposeful.

I can also tell you that they weren’t very nice underfoot!

I’m supposed to tag 6 people.  I’m too tired to tag, so if you’d like to do this one, consider yourself tagged!

Goodbye Baby Carrier…

Ben in baby carrier

…hello big-boy carseat! After almost two long years, Ben has finally gotten too long for the baby carrier, although he still weighs well under 20 lbs.

Ahhh, much better!