CdLS Awareness Day 2014


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

Intensive Feeding Therapy: Ben update October 2010.

It has been quite some time since my last post.

Ben is now almost 4 1/2 years old, and weighs just under 30 lbs.  He enjoys tremendously good health, and for that we are grateful.  He attends preschool three afternoons per week.  He does not walk, but is quite skilled at “army crawling”.  Over the last month, for the first time, he has been venturing from room to room in the house.  He now makes his way to the foyer, dining room and kitchen from the living room!  This means that we now have to be much more vigilant since he no longer stays in the room in which he is placed.  He is able to stand and lean onto furniture for support, but for some reason he doesn’t enjoy doing this.  He also has a gait trainer, but doesn’t seem motivated to walk yet.

Ben doesn’t talk or use sign language yet, but he does make lots of sounds.  At preschool his teachers are trying to get him to use devices with simple switches and buttons to make choices with the idea of perhaps eventually getting him to use a picture exchange system or a communication device one day, but it seems like he’s still a long way from being able to do that.

He still wears hearing aids, and he doesn’t really seem to mind them.

He wears glasses, and it is quite a struggle to get him to wear them consistently.  He can yank them off with lightning speed, and then he enjoys playing with them by swinging them back and forth with his fingers.

By far our biggest struggle with Ben since birth has been with feeding.  He is still 100% g-tube dependent, and has been extremely resistant to transitioning over to oral feeds.  Sometimes he seems to do really well for a time, but more commonly he fights, cries, arches, and wants nothing to do with spoons and “real food”.  We have been through outpatient OT at home through early intervention for Ben’s first 3 years of life, and we have been following up periodically with the feeding clinic at our local university hospital with only limited success.  Ben’s therapists at preschool are great for most things, but  frankly they have not been all that helpful for feeding therapy.  This is surprising to me since he attends a school for children with special needs.

So basically we have made very little progress with outpatient feeding therapy so far.

This summer we began the process of having Ben enrolled in the intensive day treatment program at the feeding clinic he has attended since he was a year old, and getting the required insurance approval for the program.  Several months later we received approval from Medicaid (but we were denied by our private insurance carrier.  I can’t understand why they denied it; tube feeding is very expensive.  So far they have paid out thousands of dollars for his feeding pump, formula and supplies over the last 4 years.  You’d think it would be in their best interests to pay for a treatment program to wean him off tube feeds, but I digress.)  So with Medicaid approval in hand, last Tuesday Ben began a 4-5 week program of intensive feeding therapy.

We were extremely anxious about how Ben would react to this program.  I took the day off work to go to his first day there.  They’ve got a great kid-friendly, relaxed atmosphere with two rooms full of toys, a room for naps, a big kitchen, and a TV/DVD player.   This is fantastic for us since two year old Nate also has to spend his days with Mark and Ben at the clinic.  Both Ben and Nate enjoy playing at clinic.  Even with their happy, laid-back approach, the director and therapists are all business when it comes to feeding sessions.

Ben arrives around 9 am after a 1 hour drive.  Over the course of the day, he has nine or ten fifteen minute feeding sessions with breaks for naps and lunch for Mark and the therapists.  They wrap up for the day somewhere between 4 and 5 pm, and drive an hour back home.  The program runs 5 days per week, and is therefore quite tiring for Mark, Ben and Nate.  While Ben is here, he is of course not attending preschool.  Logistically having Ben at feeding clinic every day has been challenging since I still must work full time, and we have two older sons in school.  Fortunately we have good friends who have been tremendously helpful and willing to help us pick them up from school when needed.

Right now our first goal is to get Ben to willingly open up his mouth to accept food without fighting.  The first thing they did was to switch him from a spoon to a Nuk brush, and for some reason, that really seemed to help.  Each session so far is about 15 minutes long, and Ben is given small amounts of food on the Nuk brush.  He is reinforced with a toy or music or something else he enjoys after he takes each bite.  They videotape each session, and weigh EVERYTHING in an attempt to quantify how much food he takes in with each feeding session.  We also have stopped Ben’s daytime tube feed boluses (we still give him water), but we are continuing his overnight continuous feeds.  Of course they will also be weighing Ben regularly at the clinic to make sure he doesn’t lose weight during this process.

After just the first day, Ben started opening his mouth for the Nuk brush where previously he’d just clench his jaws tight for me with the spoon.  He’s had 4 days of therapy so far, and although he is still not thrilled about feeding (especially at the start of each session), he’s doing SO MUCH better.  He’s starting to open his mouth up when the brush approaches now, and even smiles sometimes during his therapy sessions.  Also, with the Nuk we are able to place food a little further back on his tongue, and this makes it easier for him to swallow, and more difficult for him to spit out.  He is not doing as much tongue-thrusting or gagging either.

This weekend we have “homework”: we are responsible for carrying out the feeding sessions at home just like he has feeding sessions at the clinic.  We were given a detailed list of instructions for the weekend sessions, and even the home phone number of the clinic director in case we run into difficulties over the weekend.  Today we did six sessions with Ben and he did GREAT!  Maybe he has resigned himself to his fate.  I hope so!

We are still working him up to taking an ounce of food during a session so we can do a swallowing study on him.  We have been unable to do one so far because of his extremely limited oral intake, but perhaps we’ll be able to do that next week sometime, and go from there.

Overall we are very hopeful that Ben will continue to progress in this program, and will begin to take at least part of his daily feedings orally.  Maybe he’ll be able to enjoy some of our Thanksgiving dinner with us!

I’ve Got Wheels!

Ben doesn’t walk yet, and I suspect that it will be a few years before he does.  Because he is so small, we’ve gotten away with transporting him most places in an umbrella stroller.  After all, they’re lightweight, ultra-portable, and cheap.

Lately, however, we’re starting to realize that they aren’t such a great long-term option for Ben anymore.  He is getting bigger, and his posture isn’t the best in an umbrella stroller.  Also, they are sometimes hard to steer, and they force the adult pushing them to adopt a slightly stooped posture (which is hard on the lower back).  We did have a larger Jeep jogging stroller, however the seat back is broken, and it was rather bulky and cumbersome to use.  Ditto with the double stroller that we have – it’s just not practical to take most places, and Nate is just not interested in riding in a stroller anymore.

The physical therapists at Ben’s school suggested that we look into getting him a more durable wheelchair or stroller.  We went with one of the local medical supply companies, and they came out to Ben’s school one day, measured him, and gave us some options that would fit his body.  His therapists at school recommended the Convaid brand, so that’s what we got a Convaid Scout.   We placed the order several months ago, and it finally came in on Monday!

The representative from the medical supplier came out to help us adjust the straps, etc.  At first Ben wasn’t too sure…

…but then he decided that he definitely liked it!

He was proud to show off his new wheels at school on Tuesday.  Nate was happy to demonstrate how easy it is to push.

So far, we really like Ben’s new wheelchair/stroller.

It is lightweight, folds up quickly and easily, and fits in the trunk of either of our vans.  It rides higher than an umbrella stroller, so it’s easier on Mom’s and Dad’s backs.  And it steers wonderfully!  The big boys love to push him around in it.  It is also “transit ready”, which means that it can be strapped on to Ben’s bus for transportation to and from school (via the red rings visible in the photo above).  We think we will start sending Ben on the bus this summer, so we’ll see how it goes.  We got Ben’s pediatrician to fill out a handicap parking permit for him, but I have yet to mail it in.

We were fortunate that between our private insurance and Pennsylvania Medical Assistance, we had no out-of-pocket expense at all.  It also appears that because Ben is so little, we’ll be able to use this wheelchair for awhile.

Of course, I’m still hoping that Ben will walk someday.  I suppose time will tell, but for now I think we have a good solution.

Happy Easter!

We have been continuing to enjoy unseasonably warm temperatures in central Pennsylvania.  I’m not complaining.  We had the most gorgeous Easter weather in recent history, with temperatures that were over 80 degrees!  I seem to remember snow on one miserable Easter weekend not too long ago, so I am thrilled about the heat.

We went to church and arrived just a little late.  Usually it’s not a good thing to arrive late on Easter Sunday.  We ended up parking miles away from the front door, but we did find somewhere to sit in the sanctuary.  Church was good, Nate and Ben behaved themselves in the nursery, and the big boys had candy in Sunday school.  Then we went home.

I decided to do a small Easter egg hunt in our yard this year, mainly for Nate.  Since he’s not yet two, I just scattered the eggs around and really didn’t hide them.  But we found that the big boys had trouble finding brightly-colored eggs that were in plain view.  Go figure.

I wondered if the big boys would be interested in gathering eggs, and guess what!  They still were!

Ben doesn’t eat candy, so we got him an Easter pinwheel instead.

Later that evening, we all went to the park.  We took Isaac’s bike (which he has outgrown) and tried to get the big boys used to the idea of riding without training wheels.  I hope this is the year we finally get them to learn how!

Ben loves being outside.  We’d like to bring his gait trainer to the park the next time we visit.

Nate was fascinated with these railroad ties for a few minutes…and then he became more interested in the small stream that runs through the park.  Why is he always interested in the one or two areas that are unsafe for babies??

I’m not sure why Jonny’s face looks like that.

Because we spent so long at the park (and because I had a great Easter afternoon nap!) I ended up starting dinner late.  The boys had noodles and chicken nuggets for dinner, and Mark and I didn’t eat our Easter ham for dinner until nearly 10 pm!  Oh well.  Maybe I’ll be more organized next year.

February 2010 Update

For a while I wondered if Iwas done with this blog altogether, but since it’s something I enjoy doing (and it helps keep my family in Trinidad up to date with what the kids are up to) I decided to start blogging again.  It has been so long since I last posted that I decided that I’d do another update.

Isaac is 9 and in 3rd grade.  He does GREAT academically, but if you ask him, he always says he hates school.  He loves video games, reading (especially manga and other graphic novels a.k.a. comic books), and playing the piano.  He doesn’t always enjoy the songs his piano teacher assigns, but often plays songs from the Legend of Zelda video game series just for fun.  Since I don’t play any instruments, I’m always impressed to hear him play the piano.  Isaac also plays soccer in the spring and fall because we make him.  He is a wonderful big brother to Ben and Nate (but just manages to fight and disagree with Jonathan on a daily basis!)

Jonathan is 6 and in the first grade.  He does fairly well in school, but is one of those kids who has trouble sitting quietly at a desk all day.  He does well with his schoolwork, however, and is an excellent reader.  He is an active kid who enjoys running around the house, playing video games, helping me cook desserts, and building with Legos and K’nex.  He is definitely a snuggler, and even now loves to sit on laps for hugs and kisses.  He talks non-stop at home (just like at school), and says such funny things sometimes.  I took the photo below after he asked me to give him a faux-hawk just like Ben’s.

Nate is 19 months old.  Wow.  I’d forgotten what it was like to have a “typical” toddler in the house.  Nate started walking at around 14 months, and since then we haven’t had a spare moment to ourselves it seems!   He is very sweet but manages to get into all sorts of mischief.  His favorite pastime lately is scattering things everywhere.

He enjoys emptying the contents of the dishwasher onto the floor.  He puts silverware into the trash.  He puts chalk into the bathtub.  He hurls toy cars and hard wooden blocks at our heads.  He sets the oven to self-clean.  He loves playing with DVD and video game cases, so we decided to get a cabinet that mounts on the wall.  Did that help?  Nope.

Thank goodness he has stopped splashing in the toilet for fun!

Nate says quite a few words as well, but still resorts to screaming when he’s frustrated or bored or tired or hungry.

Benji will be 4 at the end of April.  How time flies!  He still has a sweet, quiet, easygoing disposition and is such a joy to have around.  He loves playing with toys that spin, or anything long and skinny that he can hold in his “big” hand.  He weighs around 28 lbs and is in 2T clothing.  He has gained nicely in the last 6 months and is starting to look rather chubby!

Ben gets around by rolling or “army crawling”.  He can get from a lying to a sitting position by jamming his little feet under a heavy piece of furniture and sitting straight up with his strong abdominal muscles.   He can stand and use his arms for support on furniture, but he will throw himself backwards without warning, so he can’t be left in that position by himself yet.  He has been doing much better in his gait trainer, and finally seems to get the idea that he’s supposed to propel himself forward.  Nate also loves the gait trainer.

Ben still wears hearing aids and glasses, but is getting more opinionated about whether he wants to wear these or not.  I suspect that his glasses are a little uncomfortable these days because he’s grown so much in the past year and also because a certain little brother chewed the pieces that fit behind his ears.  In any case I think he’s due for a new pair even though his prescription hasn’t changed.

Ben is still g-tube fed, and is still very resistant to oral feeds.  Every so often, he changes his mind and willingly eats and tastes food that I’m feeding Nate, but that only happens once in blue moon.  We keep working with him, but it’s discouraging at times.

The biggest change that has happened with Ben over the past few months is that he has been attending preschool 3 afternoons a week!  We were so anxious about him going to school, but it has turned out to be wonderful for him.  He attends a local preschool for children with special needs.  The class is very small, and he has lots of one-on-one attention.  He loves going, and is full of giggles when Mark takes him in.  He has PT, OT, and ST at school, and they also work with oral feeds.  He also has circle time and playtime just as “typical” kids would in preschool.  He’s one of the smallest kids at school (if not the smallest), and everyone loves him!  I think I’ll have to do a post just about Ben’s preschool.

Ben continues to be wonderfully healthy, and we’re thankful for that.

Mark and I are doing very well, but we are tired all the time it seems.  I still work full time and Mark is home with the boys full time.  We still enjoy cooking together, and trying out new recipes.  “Santa” brought us a new TV and a PS3 this Christmas, and we’ve both been enjoying playing “Dragon Age Origins” after the kids go to bed.  We’d like to go to the CdLS conference in Dallas this year and are still working out the logistics of that.  We’re also planning a trip to Trinidad this summer…if we can get everyone’s passports organized!  We already struck out once; we got caught in a traffic jam on Friday afternoon and ended up not being able to get the boys’ done.  Maybe this week.

Hopefully I can keep this blog updated on a semi-regular basis.  We’ll see.

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!