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!

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…

We visited Washington DC for a day…

And the next morning visited Mount Vernon and learned all about George Washington…

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.)…

Meanwhile, Jonny turned six…

Isaac turned nine, and Natey turned one.  Isaac decided on hermit crabs for his birthday present…

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…

…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.

Both big boys loved it.  Nate giggled every time  there was a long stream of bubbles.

We got out the Slip ‘n Slide for a bit.  The big boys enjoyed it but the water was frigid!

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 big boys practiced their gymnastics.  Mark and Isaac tried to teach Jonny how to do a cartwheel.  I think he almost got it.

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.

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!

Has it really been a month?!?

More like six weeks!  I haven’t posted at all for May – I don’t think I’ve ever missed an entire month since I started this blog.  Since this is my “journal”, I feel obligated to at least mention where some of the last month has gone…

Isaac has just completed second grade.  He has also finished his soccer season with lots of improvement in his soccer skills and attitude (for the most part).  He’s doing GREAT playing the piano, and genuinely enjoys playing.  Everyone but Mark (who was horribly sick with food poisoning) went to hear him play in his spring recital.  Even my dad was here at the time, which was a blessing since he was able to help with Ben during the recital.  Ben and Nate were big fans of  Isaac and his classmates; both enjoyed the music, but were a little loud and had to be escorted to the back of the concert hall!

Tonight we all went to see Jonathan in his kindergarten concert which was so cute and very entertaining.  Jonny turned six on Saturday, and we had a great birthday celebration at home, and one of his friends from school was able to spend the night.  He has come a long way since he started kindergarten – he is reading very well, and his behavior in class is much better than when he first started.  Jonny and I put together a time capsule of his kindergarten year as part of a class assignment, and I really enjoyed doing that with him.

Benjamin is doing great, still has healthy and happy as always. He turned three at the end of April, and we celebrated by going to the beautiful Hershey Gardens for a walk and some photos.  After that, we went out for dinner.  Ben had a great time being out with the family.

We still struggle from time to time with getting him to leave his MIC-KEY button alone, so these days we usually have him in overalls or an ace wrap over his belly.   We’re still working on oral feeds.  For about a month we took a break and didn’t really push the issue at all, partly because I felt it was turing into a power struggle of sorts. We restarted in the last week or two, and there have been good signs of progress.  Ben has actually started opening his mouth for the spoon, has been mouthing toys and objects more, and has been willing to take tastes of foods or drinks that other people are having.  I am cautiously optimistic, and hope that this new curiousity about food continues.  I hope he realizes what he’s been missing out on!

Nathaniel is 10 months old, and growing by leaps and bounds.  We had his baby dedication on Mother’s Day.  He definitely outweighs Ben, and this week he officially has surpassed Ben with his gross motor skills.  He now crawls forward (after a month of crawling backwards and getting stuck in tiny corners), and can now pull to stand.  He is such a social boy and isn’t happy unless someone is either holding him or helping him to stand.  He loves Ben’s therapy sessions and seems to think they’re for him…Mark is constantly having to corral him during therapy.  He now shuns baby food, and loves to eat whatever we’re eating.

Let’s see – what else…

My dad stayed with us for a few weeks in May.  The yard never looked so good, and he helped out immensely with the dishes and the boys.  I’m afraid he spoiled Nate terribly!  😉  My sister Aliyah graduated from college.  The ceremony was outdoors, and we all attended, and then all went out to eat afterwards.

Mark and I celebrated our 14th wedding anniversary at the end of May, and my awesome sister- and brother-in-law watched the kids for us so we could have a rare evening out (we went to a restaurant called “Eleven” in Pittsburgh.  The food was amazing!)  What an awesome gift.

Well, let’s hope I do better with blogging this month.

Ben’s Latest ABR

Ben first got hearing aids at 5 months old based on results of an ABR.  When he was that little, the test was relatively easy to do.  We basically had to deprive him of sleep for several hours (although it was difficult to keep him awake during that last hour while driving to the audiologist!) and he would sleep peacefully during the entire test.  As he got older, a test like that harder to do since he seldom slept for long periods during the day.  So most of his subsequent hearing tests have been done by judging his responses to sound, but these have been somewhat unreliable.

After his last hearing test like this (shortly after Nate was born), his audiologist finally decided that he would need to have an ABR done again to get a more accurate result.  The only problem was that Ben would need to be put under general anesthesia to have the test.  Coordinating all of this was a little challenging, but Ben finally had his test a little over a week ago.   Ben is difficult to intubate, so the anesthesiologist decided to use an LMA for this procedure.

Everyone had to get up early.  The big boys went to school as usual on the bus.  Mark, Nate, Ben and I then drove an hour to our very favorite tertiary care center.  We fretted about being late, but it turns out that we actually misunderstood what time we were to be there, and we were actually 30 minutes early!   (Maybe they heard about our reputation for being late and misled us on purpose!)

Ben was in a great mood, but fell asleep while waiting for the procedure.  He looked so tiny in that great big gurney!  He woke up in time for them to wheel him back, and he laughed all the way to the room in which the test was to occur.

So we waited and waited.  Nate actually behaved very well.  We brought lots of toys for him to play with.  He played, laughed, ate his yogurt, and slept.  The test went much longer than we expected.

Finally they called me back to see Ben in recovery.  He was unhappy when I got there, and his g-tube needed to be vented, but then he quickly settled down.

We were able to leave about 15 minutes later.

We didn’t get the results of the test until the next Thursday.  Ben’s hearing has deteriorated somewhat; he has moderate to severe hearing loss bilaterally (moderate for low frequencies, and severe at higher frequencies).  His hearing aids were adjusted, but I think we need to have them adjusted again.  They are giving him so much feedback (high-pitched squealing) that he’s afraid to move when he wears them!

And I was hoping that the test would show that he didn’t need hearing aids anymore.  Oh well.  I am very thankful that the hearing loss can be identified and treated.

Ben’s Preschool Evaluation and First IEP

Ben turns 3 at the end of April, so he will be transitioning from home-based early intervention to having his therapies in a preschool setting.  In our county, most kids with significant developmental or behavioral disabilities go to a designated “special needs school”.   I understand that a lot of parents and educators disagree with this approach, but we think it’s the right one for Ben at this time.

Earlier this month (the same week as our vehicular fiasco), he had a formal evaluation at the Center.  He first had his hearing and hearing aids checked briefly by their audiologist.  Ben is difficult to test using behavioral cues, so the audiologist was relieved to learn that he’ll be having a detailed ABR under general anesthesia tomorrow morning.

Then we all went to a different room, and we met all the therapists that Ben would be working with in school, as well as the school psychologist.  The physical therapist went first, and she put Ben down on the mat to watch him roll, crawl, sit up and stand with support.  We were pleased that we’ve already met Ben’s therapist – she filled in for our usual physical therapist a little over a year ago when she was on maternity leave.  Ben did very well.

Then they sat Ben in a little chair and tested how well he was able to manipulate objects with his hands and arms.  Ben sat very well and cooperated with all the tasks.   The school psychologist asked whether we wanted Ben’s IQ tested.  We consented, and she did her evaluation.  Through the entire process everyone asked us lots of questions about Ben’s routine, his likes/dislikes, special abilities, personality, and what our goals were for him.

We generated his IEP for the year, and read over and signed it.  Since the preschool operates year-round, Ben could technically start attending as soon as he turns three, but we all agreed to keep up home-based therapies a little longer; until August.  We asked questions about the preschool itself.  We learned that the classes are typically small (6-8 kids per teacher), kids work individually with the therapists at different times during the school day (or rather half-day), we are able to communicate back and forth with Ben’s teacher and therapists daily using a notebook, and at least once a month, his teacher will do a home visit to meet with us and discuss any concerns.  Ben will be continuing PT, OT (including working on oral feeds), ST, and will periodically meet with teachers for students with visual and hearing impairments.

The prospect of sending Ben to school fills us with anxiety, but at the moment we feel a little reassured after our IEP meeting.   For now it does appear that his educational needs will be met in this setting; we’ll see how things actually work in a few short months.