Snippets…

On Saturday, Isaac scored his very first goal since he started playing in the AYSO Under-10 division!   He really has been making a good effort, even though it has not been easy for him.  We were so proud, and so was he!

On Tuesday the weather finally cooperated and Jonathan actually got to play soccer!  He was so excited since his last two games were rained out.  He did great, had a blast, and scored a few goals.  When someone asked him if his team won, he replied, “There’s no winner.”  I’m glad that he enjoys the game at this stage without needing to keep score.  And we were thrilled that he was able to burn off some of that extra energy.

Ben has had a few trips to our friendly tertiary care center.  He has been picking and pulling at his MIC-KEY button, so last week we saw his g-tube nurse.  We have determined that the tube size is appropriate, but we think he has a mild yeast infection at the site.  We are treating him with some Mycolog ointment, but I’m not so sure it’s doing much good…he succeeded at PULLING OUT HIS MIC-KEY BUTTON for the very first time a couple days ago.  For now we’re continuing the ointment and keeping his belly bound with an ACE wrap.  Poor Ben.  I hope he stops messing with it so he doesn’t have to sweat all summer.

Today we went to  have Ben’s hearing aids adjusted.  He got new molds, and I told the tech about the severe feedback (whistling) we were getting.  She had a neat device which actually was able to cancel most of the feedback (I’m not exactly sure how it works), but Ben will finally be able to wear his hearing aids again.

Lately, Nate has been doing lots of new things.  He has begun teething, rolling over very well in both directions (finally catching up to big brother Ben with his motor skills), trying to crawl on hands and knees and really wants to learn how to pull to stand.  He has been learning how to feed himself and has been scarfing down those little Gerber fruit puffs like lightning.  But he has also been sooo needy these days and cries if you just stand up…before you even have a chance to leave the room!  He really loves Ben and enjoys playing with Ben’s face, hair, arms, feet, etc.  Ben usually tries to roll out of the way, but this week he really seems to be noticing Nate and interacting directly with him for the first time.

BTW, Mark found these neat shirts for the little boys at Toys ‘R’ Us to help everyone see that they are not twins.

Ben turns three tomorrow, and Nate is 9 months old.  Right now Nate officially outweighs Ben.

I suppose it won’t be long before they won’t seem like twins anymore.

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.

Some Doctor Visits…

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.

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 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

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.

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…

…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.

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

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.

Benji-Ben Update 11/08

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.

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!

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!

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.

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

The Last Days of Summer

The month since Nate was born has gone by quickly. Along with the usual demands of taking care of a new baby, and Ben’s therapy sessions, the big boys have been home all summer. Even though this year we didn’t really do anything interesting or really fun, we still enjoyed each others’ company. And since I normally work full time, this summer was especially wonderful for me. I rarely have the opportunity to spend this much time with Mark and the kids.

In the last couple of weeks we have had some doctor and dentist visits:

Isaac and Jonny both had their regular dental checkups. We are ever so pleased to report that NEITHER ONE HAD ANY CAVITIES!!! That is especially a relief since Jonny has had FOUR cavities repaired in the last 6 months or so. We were so thrilled!

Then they both had their regular checkups at the pediatrician. They are both growing well and perfectly healthy. Jonny didn’t do too well with his vision screen at the pediatrician’s office. We had his vision checked yesterday at the optometrist and he doesn’t need glasses. Isaac needed a booster on his varicella vaccine, and poor Jonny got FOUR shots in preparation for entering kindergarten. They were both very sad to get shots, but they were troopers. I felt so sorry for them that we got them lots of Pokemon video games as rewards…but that’s another story.

Nate had his one month checkup. He is now gaining weight nicely, and was up to just shy of 10 lbs. He is healthy, and his only issue is a bad case of neonatal acne.

Ben had an audiology checkup to see if his hearing aids are at the right setting. They tried checking his hearing by using his behavioral responses to sound, but that wasn’t too helpful at the lower decibel levels. We therefore have to arrange an ABR under sedation to get a better idea of what he can actually hear. He hasn’t had an ABR since his first year of life, so I’m curious to see if his hearing has improved as he has grown, since this is something that can happen with kids with CdLS.

We also made him an appointment to see the pediatrician to talk about his feeds and some other issues. Ben seems to have gone through a growth spurt this summer! He is now almost 19 lbs, and we know he has grown an inch or two in height. So his tube feeds are going well, but we had been having some awful constipation problems. We are changing his formula to include some fiber, continuing his prune juice, and increasing his water intake, and already we are seeing an improvement.

This weekend we went to the open house for Isaac and Jonny’s school, except that it wasn’t. A teacher hasn’t yet been hired for Isaac’s 2nd grade class, and much to my disappointment, the classroom was locked so we couldn’t even see it. So we headed to the library instead. Ben had a great time getting out of the house – we haven’t been on too many outings this summer. That’s how boring we have been lately.

I am sad that summer is ending and the big kids will be back to school next week. I will miss them.

I do hope that next summer we can do some more interesting things than we did this year!

Go Steelers!

Ben’s feeling better, so Mark got him all decked out in his little Steelers outfit.

I fitted Ben’s new earmolds for his hearing aids. It turns out you can get earmolds almost any color you can think of, and Mark picked these out for Ben a few weeks ago. The audiologist mailed them to us, and we get to trim them to size ourselves rather than driving an hour each way for a five-minute process. The tubes are still a little long – I still have some trimming to do. Here’s the right side (black):

And here’s the left side (yellow/gold):

Now we’re all set!  Hey, this isn’t the Steeler game!

Eyes and Ears

 

Ben had a formal eye exam for the first time in his life about two weeks ago.  For months we’d been noticing that his eyes tended to drift outward at times, but I couldn’t really tell which eye was the most problematic.  (You can see it just a little bit in the photo above – look at the little points of light on his eyes). His pediatrician made the referral to our favorite tertiary care center, which is an hour’s drive from our home.  We really loved the doctor who saw Ben.  She was a wonderful lady who had obviously done some reading on CdLS, and knew what to look for.

 

She agrees that Ben has exotropia which is a kind of strabismus.  He is also a little nearsighted.  The good news is that he isn’t really favoring one eye over the other, the exotropia is intermittent, and he doesn’t need glasses yet.  We’ll be patching alternating eyes for an hour each day, and rechecking his vision in about six months.  Our doctor gave us a box of patches to get started but we promptly lost them.  We have to order some new ones, and hopefully Ben won’t mind them too much.

After that we went to have Ben’s earmolds for his hearing aids resized.  Jonny got to play with the squishy molding material. 

 

Today we had Ben’s hearing tested again.  We didn’t have an ABR, but rather they tested his ability to turn toward sound at different decibel levels and different frequencies while he was awake.  He did very well, and certainly it seems that his hearing is not deteriorating at all.  He won’t need to have another test for about 6 months. 

In fact we don’t have ANY appointments scheduled at our favorite tertiary care center until April of next year!!!  Let’s hope it stays that way!

PT and OT Updates, and Speech Therapy Evaluation

 

Yesterday Ben had a very busy day. 

He started at 10 am with his weekly physical therapy session.  In PT he works on his gross motor skills – rolling, sitting, and standing.  He used to hate PT when he was younger, but lately it’s been his favorite.  Yesterday was no exception – he was happy and cooperative with his therapist.  He is doing much better with sitting unsupported, but he gets tired quickly and doesn’t catch himself when he tips over…yet.  Here he is practicing standing and holding on to his Exersaucer.

 

At 1 pm he had an OT session.  This one was a little different, because in addition to our regular occupational therapist, we also had a speech therapist and our family service coordinator visiting.  One of the reasons for the visit was to see whether Ben would benefit from starting speech therapy services.

Ben was surprisingly still awake and alert for the afternoon visit.  We showed his OT how well he can grasp toys now, and she was pleased.  She worked on sitting some more, and she is impressed with how much his upper body strength has improved.  The speech therapist brought a brand new mirror toy for Ben to look at which he loved…

She tried to get him to respond to his name, which he didn’t do for her (too interested in the toy perhaps), although he does for us sometimes.  We talked about his hearing loss, whether he tolerates his hearing aids (he does for now), what sounds he makes (mainly “aaaaaaaah” and blowing raspberries) and what our goals for him were. 

I told her that we’d be thrilled if Ben learns to talk someday, but what is more important for us is that he is able to communicate with us, and vice versa.  We talked about using sign language, pictures, and electronic devices.  It turns out that there is a place not too far from here where, when Ben is older, we might be able to borrow one of those devices to see if it would work for him.  We were very encouraged after talking to her, and so we’ll be starting twice monthly speech therapy sessions with her.

We have not been pushing Ben with resuming oral feeds lately because of the negative responses he’s been giving us.  His OT did manage to get him very relaxed on the floor, and was even able to put his spoon in his mouth!  As you can see, he was enjoying this, and fell asleep in the end.  So we will begin re-introducing oral tastes again.  Wish us luck!