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.

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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.

Some Doctor Visits…

mark-karen-ben-nate

We’ve had a few of these for both Nate and Ben in the last month or so:

Ben had a follow-up-tube-feed visit with his pediatrician.  He weighed just under 20 lbs and was 30 inches tall. His doc says that he is growing very well, and we can continue what we’re doing with his tube feedings.  Also, we seem to be doing OK with managing his constipation.

bens-checkup

Ben will need to have an ABR done under general anesthesia next month to adjust his hearing aids, so we recently had a “preop” visit with the anesthesia clinic earlier this month.  It took a VERY LONG TIME, but it went well, and Ben actually weighed 21lbs at that visit.  Hopefully Ben will have his test and will recover quickly from the anesthesia, and be able to come home right after the test.

nate-6-month-checkup

Nate had his 6  month well child visit.  He weighed 19 lbs 12 oz, and is doing well.  He had a cold at the time of the visit (which eventually required some amoxicillin since it lingered for weeks), and is on target in terms of his development.  He still has eczema which we manage with moisturizers and triamcinolone cream.  He got 4 shots (Pentacel, Prevnar, Hep B#3, Influenza), and one oral vaccine (Rotarix).

Both Ben and Nate will have well-child visits at the end of April/early May.  Right now they are both healthy, and I hope they both stay that way so that we don’t need to see the doc before then.

Feeding Difficulties

ben-feeding-therapy-1

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.

ben-feeding-therapy-3

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.

ben-feeding-therapy-2

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.

i-couldnt-care-less

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.

Ben’s First (Official) Haircut

Ben has the thickest, curliest hair out of all of our kids, which is a common trait for a little guy who has CdLS. Whereas Jonny and Isaac were well over 2 years old before they needed any kind of haircut (and I suspect Nate will be the same), it didn’t take long for Ben to need a trim.

Until now I have managed to cut Ben’s hair myself. Recently, however, he has become much too strong and moves far too much for me to safely use scissors to cut his hair. So Mark called up the hairdresser who normally does his and the big boys’ hair, and we made Ben an appointment. Remembering the hysterical screaming from Jonny’s first haircut there a few years ago, we told her to make it for a time that the shop wouldn’t be too busy.

So last Friday we took him in. He did surprisingly well! In the photo below he is being silly and floppy, not realizing what was in store for him:

At first he was understandably mad…

…but then he settled down and actually seemed to enjoy it. Or maybe he resigned himself to his fate.

He looks SO much neater and more comfortable now.

We are going to try to have him go regularly so that he gets used to the process. Wish us luck!

“18 month” Well Child Check

18 mo wcc Jonny gameboy
Last week we had Ben’s 18 month well child visit, even though he is technically 19 months old.  Jonny accompanied us to the visit, happily occupied as usual by his Gameboy.

Ben is just over 15 lbs now, and continues to be very healthy.  He has global developmental delays, and his motor skills are just about at the 5 or 6 month level.  We reviewed his therapies: he gets physical therapy once a week, speech therapy once every other week and occupational therapy twice a week.   Ben is still on a mixture of Nutren Junior and infant formula; this transition has definitely gone a lot slower than we anticipated.

This visit was fairly routine – I think this is the first time we didn’t have much to say, which is a good thing.  Ben got his 2nd hepatitis A shot and his 2nd Synagis.  We next see the pediatrician in 3 months mainly to track his growth and adjust his tube feeds if necessary.

I wanted Ben to see the developmental pediatrician at the university hospital where he gets all his specialty care.  We weren’t able to get him in, mainly because their practice is full, and partly because they deal mostly with kids who have ADHD and autism, and they assumed that we wanted Ben to be seen there for behavior management (which of course isn’t the case…yet).  However, the clinical psychologist from her office who helps with developing educational goals is willing to see him – we’ll probably make an appointment for that in another year or so.  This is one of the more frustrating things about living in such a rural area – sometimes it’s difficult to get the appropriate care for Ben within a reasonable distance from home.   I suppose we’ll have to travel to Philadelphia or Baltimore to see a developmental pediatrician if we need one in the future.