Welcome, Spring!

This weekend was chilly, and today was rainy, but what gorgeous weather we had last weekend!  The temperatures got up into the 70’s and we were able to get out and enjoy the sunshine.  I had the day off last Friday, so while the big boys were at school, Mark and I took the little ones to the park.

Ben and Nate both went on swings and slides for the first time!  They had an awesome time.  We really should go to the park more often.  They both took good naps that day.

Nate’s an old pro with slides now.  His Sunday School class at church has a little slide in the room and he’s so thrilled that he doesn’t mind me leaving him there during services.

On Saturday morning, Isaac had a piano recital.  After the recital the boys were able to run and play outside for a bit.  Saturday evening we were invited to some friends’ house for dinner.  The beautiful weather continued, and the boys were able to play with their friends in their large fenced backyard until after dark.

Nate was given this balloon by someone during Isaac’s recital.  We hoped it would keep him quiet.  It didn’t.

Jonny thought he’d try his friend’s skateboard and found it was harder than it looked.  In any case, his friend told him that he shouldn’t be skateboarding in his “handsome clothes”.

Nate found the chip bowl:

I am SO glad that winter is over!

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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.

Ben’s New Glasses

church

We all love how Ben looks in them!  Doesn’t he look cute?  The photo above was taken in our church nursery yesterday morning.  I think he’s finally starting to look more like a little boy than a baby.

As I mentioned on my post about Ben’s last ophthomology appointment; we were told that his eyesight had deteriorated considerably over the previous year.  He had become quite nearsighted and would need glasses.  A little over a week ago, we finally got around to taking him to the optometrist to choose some frames.    This optometrist, a very nice lady, specializes in pediatric and special needs eyewear, and is about 45 minutes from our home.  The big boys were in school, and Nate came along.  Ben wasn’t too happy with having several frames put on and taken off in rapid succession, but he was a trooper.

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number-2

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It was a tough decision, but we found some that we liked.  Nate was unusually fussy that day, and when we came home we found he was running a fever.  Fortunately, he ran a temperature for only 3 days, and he seems fine now.

This Saturday we made the trek to pick up his new glasses.  This time we had all 4 boys with us.  It turns out that the optometrist is very busy on Saturdays, so we had to wait a bit.  The boys occupied themselves with the toys…

toys

jonny-sphere

…and Nate and I just hung out on the couch.  Ben’s glasses needed some final adjustments (the earpieces had to be molded to ensure a snug fit), we fit his hearing aids over them, and finally we were done.

much-better

Afterwards, we went out for lunch, went to the mall for a bit:

double-stroller

Ben was VERY interested in looking around at EVERYTHING.  (Yes, Nate was missing a sock so we bought him some new ones!)  When we were sure we had tired everyone out, we came home.  All four boys fell asleep in the car.

So far, Ben’s response to his glasses has been overwhelmingly positive.  He has left them on, and he has been so much more interested in looking at more distant objects.  He even seems to make better eye contact.  I guess his poor vision was more of an impairment than we realized, and it makes us feel a little guilty for not acting on this before.

I really hope he tolerates his glasses for the long haul.

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.

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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.

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.

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Who knew that such a basic thing as eating could be so difficult for some kids.

Scotch Pines are Sharp!

big-boys-decorating

Last Saturday we got our Christmas tree, and we decorated it the very next day.   As usual, Isaac and Jonny put the unbreakable “kid” ornaments on the tree.  This year they were a little less than enthusiastic.  The reason?

Usually, we get a Douglas Fir.  This year, most of the Douglas Firs we saw were really, really tall.  So we went with a Scotch Pine instead.  And guess what?  Scotch Pines have really pointy, sharp needles!

jonny-decorating

The boys kept yelping “Ouch!” with each ornament!  Isaac tried to use his gloves, but that didn’t work.  Finally, Jonny gave up and would just toss his ornaments onto the branches, hoping that they’d stay on.

finished-product

The tree still looked very nice, but I think next year we’ll go back to Douglas Fir.

Ben lay on the floor playing with one of the ornaments.  Within an hour or so, he had scooted himself under the Christmas tree to see the lights more closely.

ben-helping

And Nate?

nate-santa-hat

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.

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