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.



When it rains…


What an eventful week!    My husband Mark also blogged most of this, so my apologies for being repetitive.

Nate has been sick for the entire week.  Initially he had just a fever and a nasty cough, but by Monday night he started wheezing.  We took him to see the pediatrician on Tuesday.  The pediatrician diagnosed a viral syndrome, and started Nate on albuterol nebulizer treatments.  We did those faithfully, but on Thursday Nate was definitely worse.   The pediatrician started him on some oral steroids, and thankfully they seem to be helping.  But Nate hasn’t been sleeping well, poor thing, and neither have we.  During the day, he wants to be held and carried everywhere, so we also haven’t been getting much done around the house.

Tuesday was Ben’s preschool evaluation, but that will merit its own separate post.  Hopefully I’ll get to it later this week!


Meanwhile, for the last week and a half, my car (my previously trusty 1995 Oldsmobile) has been overheating.  On Wednesday we took it in to our mechanic to have it looked at.  Unfortunately, the problem was more expensive to fix than we anticipated.  We decided that night not to repair it, but to replace it.  After all, the car is 14 years old, and has been becoming less and less reliable with each passing year.  I just hated the thought that it might leave me  stranded somewhere on the Interstate.


The very next day, 0n Thursday I drove our van (1999 Pontiac Montana) to work.  About a block from my office it made a noise and it seemed to me that the accelerator wasn’t as responsive as it had been a just few minutes before.  I convinced myself it was just my imagination.  However that afternoon when I went to leave, I discovered I had a major problem.  It wouldn’t go into reverse AT ALL.  The transmission was fried.  So I was stranded at work, and Mark was stranded at home.

A kind co-worker dropped me off at the mechanic so that I could pick up my overheating (but at that time still driveable) Oldsmobile from the mechanic, and I made it home OK.  Unfortunately, I made the mistake of driving it to work on Friday.  It became dangerously hot on the way home that night, and I ended up returning to my office and getting a ride home from a dear friend of ours, who left her Lenten fish dinner to rescue me.   How embarassing!

So in a few days we had gone from two vehicles to zero.

The van was towed to our bemused mechanic, where it will undergo extremely costly repairs.   After all, we can’t afford to replace two vehicles in the same year, let alone in the same week!  On Saturday, Mark bummed a ride from our next door neighbor to the local car rental place so that he actually had a vehicle to use to go car shopping.  (We really like the rental car, BTW!  Isaac and Jonathan were extremely impressed; they’d never been inside a brand-new car before!  I’ve certainly never driven a car this nice.)


Anyway, on Saturday Mark bought us a used van to replace my car, while I stayed home with the boys.  We thought it made more sense to buy a van because there are now 6 of us in this family, and I can tell the Montana probably won’t hold up too much longer.  I hear the new van is very nice, and I’ve seen photos, but I won’t see it in person until it is delivered to our house tomorrow.  I hope it knows it has to last us for YEARS AND YEARS!!!

I hope this week is less eventful.

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.

Feeding Difficulties


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.


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.


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.


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.


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

A Very Productive Doctor Visit

Nate’s two-month well child visit was this last Thursday.  The big boys actually had the day off from school for some reason, so they ended up coming along.  Everyone was in a GREAT mood, especially Ben.

Nate is growing well.  He was 13 lb 11 oz.  He has just begun smiling and cooing.  He’s doing all the things a two month old should do.  So then it was time for his two month shots.

Nate is too young for flu shots, so she recommended that the rest of the family get flu shots.  So then she asked if we would like the other boys to get theirs while they were all there.

What a great idea!  We broke the news to the big boys that EVERYONE would be getting a shot, not just Nate.  They were understandably unhappy, especially Jonny who just recently got 4 shots in preparation for kindergarten.  I felt very sorry for poor Ben who was in such a happy mood when we got there.  Fortunately, he cheered up quickly after his shot.

The big boys were brave, and we made a quick trip to Target to get them a reward.  Isaac chose a Bakugan (from the reward cupboard at home since they were all sold out at Target as usual), and Jonny chose some Pokemon cards.  And we don’t have to think about shots again for another year!

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!

Nate’s One Week Checkup

On Tuesday we took Nate to the pediatrician for his first ever checkup. We took the other 3 boys along just for the fun of it. Of course we took along our trusty Gameboys for our older two.

Ben was quite content in his stroller. I think he was glad not to be the one being poked and prodded for a change!

Nate is doing well. He had lost some weight (normal for a newborn), and was mildly jaundiced, but otherwise his doctor had no concerns.

After the doctor visit, we went to Target and then had lunch at Fudrucker’s.

I think I overdid it that day because since then I’ve been too sore to do much of anything.

We took Nate back in to the doc yesterday to be weighed again, and unfortunately he gained only 1/2 ounce when he is supposed to gain about an ounce a day. So we are being more diligent with Nate’s feeds (he has a tendency to fall asleep 5 minutes into feeding sessions), and supplementing him with (a little) formula, and he’ll be back in for a weight check on Monday. I hope he starts gaining soon!