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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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!

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.

Has it really been a month?!?

Soccer photo

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 recital

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!

Jonny's sixth birthday

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.

Ben at dinner

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.

Hershey Gardens

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!

Nate dedication

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…

Graduation

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.

Anniversary dinner

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

Ben’s Preschool Evaluation and First IEP

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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.

ben-rolling

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.

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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.

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nate-and-me

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.

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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.

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.

look-at-me-im-eating

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.

Benji-Ben Update 11/08

ben-and-me

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.

ben-and-his-ball

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!

ben-and-nate-sitting

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!

ben-eating

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.

ben-teether

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