On Saturday, Isaac scored his very first goal since he started playing in the AYSO Under-10 division!   He really has been making a good effort, even though it has not been easy for him.  We were so proud, and so was he!


On Tuesday the weather finally cooperated and Jonathan actually got to play soccer!  He was so excited since his last two games were rained out.  He did great, had a blast, and scored a few goals.  When someone asked him if his team won, he replied, “There’s no winner.”  I’m glad that he enjoys the game at this stage without needing to keep score.  And we were thrilled that he was able to burn off some of that extra energy.


Ben has had a few trips to our friendly tertiary care center.  He has been picking and pulling at his MIC-KEY button, so last week we saw his g-tube nurse.  We have determined that the tube size is appropriate, but we think he has a mild yeast infection at the site.  We are treating him with some Mycolog ointment, but I’m not so sure it’s doing much good…he succeeded at PULLING OUT HIS MIC-KEY BUTTON for the very first time a couple days ago.  For now we’re continuing the ointment and keeping his belly bound with an ACE wrap.  Poor Ben.  I hope he stops messing with it so he doesn’t have to sweat all summer.

Today we went to  have Ben’s hearing aids adjusted.  He got new molds, and I told the tech about the severe feedback (whistling) we were getting.  She had a neat device which actually was able to cancel most of the feedback (I’m not exactly sure how it works), but Ben will finally be able to wear his hearing aids again.


Lately, Nate has been doing lots of new things.  He has begun teething, rolling over very well in both directions (finally catching up to big brother Ben with his motor skills), trying to crawl on hands and knees and really wants to learn how to pull to stand.  He has been learning how to feed himself and has been scarfing down those little Gerber fruit puffs like lightning.  But he has also been sooo needy these days and cries if you just stand up…before you even have a chance to leave the room!  He really loves Ben and enjoys playing with Ben’s face, hair, arms, feet, etc.  Ben usually tries to roll out of the way, but this week he really seems to be noticing Nate and interacting directly with him for the first time.


BTW, Mark found these neat shirts for the little boys at Toys ‘R’ Us to help everyone see that they are not twins.


Ben turns three tomorrow, and Nate is 9 months old.  Right now Nate officially outweighs Ben.

I suppose it won’t be long before they won’t seem like twins anymore.

Our “Twins”

I haven’t been updating my blog nearly as often as I would like to lately – Nate, Ben and I are all fighting nasty colds.  I’ve actually been running a fever these last 2 days and actually was sent home from work early on Tuesday – something that has NEVER happened to me before!

So I’ve been spending a lot of my spare time cuddling with babies, napping, drinking lots of tea and juice and taking my ibuprofen.  I can’t wait for spring when this cold and flu season will hopefully come to an end.


Nate and Ben are almost like twins these days.  Ben will be 3 soon, and Nate is about 6 months old, and they both weigh around 20 lbs.  They are both in 12-18 month clothes, although they tend to be a little loose on Ben and a little long on Nate.  And they are similar in terms of their development, although Ben is ahead in his gross motor skills (can roll both ways and is starting to ‘army crawl’), and Nate is ahead with oral motor skills.  They can both now sit independently fairly well.


I have noticed that since Nate has been sitting more, Ben seems to have decided that sitting isn’t so bad after all.  Previously, he just enjoyed rolling around on the floor.  Of course, Ben’s better vision with his new glasses could be encouraging him to sit up and look around more too…


Nate hates to be left alone for any period, but he will often play happily if he is sitting with Ben.  That is, until Ben takes away his toys…


We had hoped that Nate would give Ben some positive peer pressure with his development, and I think he has.


I think Ben looks proud that Nate fell over before he did!

Benji-Ben Update 11/08


Ben is now two and a half years old.  He is usually a happy, easygoing little guy who loves attention and outings.  He continues to do very well overall, although we are still working through some challenges.

His overall health is excellent!  He is rarely ever sick (knock on wood).  The last two winters he got Synagis shots to ward off the dreaded RSV, but this year he won’t be getting those.  We’ll have to make sure the two big boys wash their hands thoroughly when they get home from school.  Ben still has a tendency to get constipated (it’s one of the few things that makes him truly miserable), but that seems to respond well to a combination of fiber-enriched formula, prune juice and the occasional dose of Miralax.

He is still basically 100% g-tube fed.  He gets 4 bolus feeds during the day, and a continuous overnight feed as well.  Recently, we have been able to increase his daytime boluses, and he has been growing well for a little guy with CdLS.

He still wears hearing aids, and soon we’ll be getting a detailed ABR test for him that will probably be done under sedation.  For now he tolerates the aids well, although every so often we’ll find him holding one.  We just had his eyes checked last week.  Unfortunately, it looks like his nearsightedness has worsened, so we’ll probably be looking into getting him some glasses.  I’m not so sure how he’ll take to those since he resists having things on his face, but it’s worth a try.  We are also supposed to patch his left eye for one hour each day because of his strabismus, but we’ve not been as diligent about that as we should be.  Ben does seem to tolerate the patches much better than he used to.


He seems to become more mobile every day!  He has been rolling for several months, but it has only been in the last month or two that he has realized that he can roll to (or away from!) people or objects.  He has just learned that being on his tummy can be fun.  Who knows?  He might learn to ‘army crawl’ soon.  We practice walking and cruising with him, but he doesn’t seem to quite get it yet.  He enjoys standing at his Exersaucer, but doesn’t seem to quite understand what he is supposed to do in his gait trainer.  He can sit very well, but has a tendency to throw himself backwards when he’s tired of sitting.  He is just learning to catch himself with his left arm when he tips over.

Socially, he is very interested in watching his big brothers run and play.  He is just starting to notice Nate more, and has started imitating some of his baby sounds!


He still gets physical therapy once a week, speech therapy once a week, and occupational therapy twice a week.  We LOVE our therapists.  They all do a great job with Ben, and can usually get him to cooperate with them.  A little over a week ago, we met with everyone to begin planning for Ben’s transition into preschool.  He will likely be attending a local preschool for children with special needs.  He will be having a formal evaluation for that in March of 2009.  I can’t even begin to imagine sending Ben to school in six months!


By far the biggest challenge we still continue to face with Ben has been getting him to transition to oral feeds.  We have been working on this almost since Ben was born, but with seemingly very little real progress.  There have been a few occasions where he’ll do amazingly well (see the photo above), and then the next few days will refuse to eat anything at all, and we’ll have to start all over again almost from scratch. We just went through another episode like that in the last week.

I find this extremely frustrating.  Our occupational therapist is great; she has worked with Ben since he was just a few months old, and we know that a lot of this is a behavioral issue with Ben (he can be quite stubborn when he wants to be!)  She is very gentle and patient with him, but persistent.  And I think that’s what seems to work best with him.


So our journey continues.  It’s not always easy, but all the same, I love being Ben’s mom.


Smiling Ben

Even though he hasn’t been feeling well for over 2 weeks, Ben is definitely showing some signs of progress with his gross motor skills. He first showed signs of grasping toys and other objects months ago, however he quit altogether for some reason shortly after that. He became very resistant to having his left hand touched for any reason, and he made little effort to grasp anything (although he would happily bat at objects and spin them).

We mentioned all this to his physical and occupational therapists, and they thought that maybe he was having some sensory integration issues with his hand. So we started some exercises to de-sensitize his hands and arms. We have three plastic containers filled with different things; one contains rice, one has black beans, and one has lima beans. We started having him immerse his hand in each of these. At first he hated all of them, but he has since come to enjoy the rice and the black beans. For some reason he still hates the lima beans! Then we placed small rings into the beans and rice (almost submerged but still visible) for him to pull out, and he’s been doing great.

Ben OT sensory integration exercise

Since we’ve started those exercises a few months ago, we’ve seen definite signs of improvement. He now readily reaches for and grasps toys and rattles, and gleefully shakes them. He even puts his toothette (that we use for oral motor skills) near (but not in) his mouth:

Ben with toothette

One of his favorite toys these days is this drum.  It’s made of real goatskin and makes a very satisfying sound:

Ben with drum

He has done the 360 degree roll a few more times – we will have to make sure he doesn’t get too tangled in his feeding tube:

Tangled in feeding tube

And he is still working on his sitting:

Ben with stacking rings

A few days ago we had dinner at our favorite Mexican restaurant.  We put Ben in a big-boy highchair for the first time (and wedged him in well with his coat).  He played happily with his toy for a few minutes, then decided he’d had enough!

Ben at Mexican restaurant

We are SO pleased with his progress so far!  Hooray for Early Intervention!


Ben PT

Ben is 20 months old, but is not exactly what I would call “mobile”. He does manage to move around somehow with a combination of scooting on his back and rolling from side to side. In the photo below, he has managed to escape his toys in search of something much more interesting to play with – the flap of cloth on the bottom of the living room chair. Santa could have saved his money!

Ben playing with chair

Four nights ago something very excited happened. Mark and I were watching “The Return of the King” for the first time on DVD, and Ben was lying on a blanket on the living room floor, playing with his toys. All of a sudden, out of the corner of my eye, I saw him suddenly roll over from his back to his belly…and then continued all the way over on his back again! Mark saw him too! He’d never done that before, and we were very excited. He had rolled off his blanket, so we put him back on it. Sure enough, he rolled all the way over again…and again…and again! He seemed very pleased with himself, and completely upstaged the movie.

Of course he hasn’t done it again since. We’re waiting with bated breath for him to do it again, which probably means he’ll hold out for another few months. I’m sure his physical therapist will think we are liars…we should have videotaped him.

Here’s Ben doing his abdominal crunches. He really enjoys doing these and he must have abs of steel:

Crunches 1 Crunches 2Crunches 3

In other news, we got a brand new refrigerator on Friday. It replaced our tiny 30 year old dinosaur with the metal shelves which used to randomly freeze our veggies for no good reason. The new fridge isn’t one of the fancy expensive ones, but it does have one nice feature. The freezer is on the bottom! I hadn’t intended on buying anything other than the cheapest fridge they sold at Lowe’s, but the more I looked at this, the more I couldn’t live without it. Never again will I have to grovel on the floor to get veggies out of the crisper. Thank you, Mark, for talking me into it.

New fridge

Popsicles in January

Popsicle 3 

Ben has been completely tube fed since birth, first with an NG tube, and then with a g-tube.  For much of his life we have been working on teaching him to eat by mouth.  It’s been slow going for the most part, and Ben will simply NOT be rushed.  Lately, though, we’ve been seeing definite signs of progress.  He’s been much more eager to taste different foods.  His favorite dishes by far have been ANY homemade soups that his Daddy makes! 

Tonight, though, he tried popsicles for the first time…in January!  The response was overwhelmingly positive.

 Popsicle 1Popsicle 2

The next step is for him to eat enough to make a swallowing study possible.  Only Ben knows when that will happen!

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!