ABR and Behavior Chart Update

As I have mentioned before, Ben has mild to moderate bilateral hearing loss (which can sometimes go along with CdLS) and wears hearing aids.  Today we made the hour-long drive to the University Hospital where he gets all his specialty care for a follow-up ABR (Auditory Brainstem Response) test.   He is supposed to have these every 4-6 months to make any needed adjustments to his hearing aids.  He has to be in a sleep-deprived state for the test to be done.  Let me tell you – it is REALLY HARD to keep an infant awake for an hour in a moving car!  We managed OK except for a 15 minute power-nap that I just couldn’t rouse him from.

The test went well and he slept like a champ.  The audiologist said it looks like he might have had some minor deterioration in his hearing since his first test in July, but it might be because he had that (likely) ear infection last week.  She’ll call us with the full report when she compiles all the data from both tests.

Poor Ben has diarrhea, most likely from the antibiotics he was on. 

In other family news, the Behavior Chart has not been as successful as I’d hoped, probably because we haven’t been as consistent with it as we should be.  Isaac, however, has been faithfully putting magnets up for each night he’s stayed in his own bed.  It’s actually quite impressive.  Can’t say the same for the other goals:

 

I guess we’ll try again next week.  Anyway, since I promised a reward  for good behavior, I got out this paint-by-number set I’d been saving for just such an occasion (I get small items on sale from WalMart and save them in the “reward cupboard”).  The problem is, it is WAY too complicated for a 6 year old!  He seems to enjoy it, but I suspect I’ll be “helping” him by doing most of it.

Random Kid Artwork

Isaac and Jonny decided to draw robots today.  They did a great job.  The next picture is to show Ben in the cute new outfit I got from Target, and also to show how Jonny still can’t resist drawing on himself.  He is banned from markers until he is four!

And So It Begins…

Jonny, aged 3 1/2, has discovered video games.  Here he is playing our ancient (and hopefully unbreakable) Game Boy Color.  There’s no going back now! 

Blog Challenge: Angels Among Us

In many ways, this year has been the most challenging so far for our family, mainly because of the birth of our son Ben who has Cornelia de Lange syndrome and lots of special needs.  Since Ben’s birth, however, we have been showered with kindness from friends, relatives, and even some people who don’t even know us all that well.  This latest Blog Challenge has inspired me to mention some of these:

My sister Aliyah took care of the two older boys while I was in labor at the hospital.  Fortunately I was induced on the weekend so she didn’t have classes.  She also did alot of babysitting for them when Ben was in the NICU. 

My dad flew in all the way from Trinidad to hold down the fort here while we drove back and forth to the NICU which was more than an hour’s drive one way from our home.

Our best friends in town are a couple who have twin daughters Isaac’s age.  They were just wonderful.  They called each day to find out how things were, and even better, they gave daily updates to co-workers and other well-wishers and asked them (at our request) not to call us in those unbelieveably hectic days following Ben’s birth.  That simple act of kindness meant alot to us – we were spared having to go through the details a hundred times, especially when there were so many unanswered questions and painful answers.  They watched Jonny and Isaac a few days when we went to the NICU, and one day the wife even drove me down to the NICU when Mark went to pick up my dad from the airport.

Isaac’s best friend’s mom also babysat for us a couple days and entertained Jonny all day – no small feat!

The other parents from Isaac’s preschool were very thoughtful.  They made meals for us every day for at least the first 3 weeks after Ben’s birth.  What can I say?  It was nice not having to worry about such mundane matters when your baby is in the NICU.  They also gave us a basket full of preemie sized clothes, blankets and gift cards to local restaurants, etc. which were useful during the long daily commute.

My co-workers took up a collection and bought us some gas cards which were much appreciated with gas prices being as high as they are.

We stayed one night at the Ronald Mc Donald House and were impressed by the caring staff there too.  They gave us a hand-knitted blanket; one of many that had been donated by kind people in the community for babies who were in the hospital.

There have been others who I just know I’m forgetting, but we do have so much to be thankful for.   They all helped to make a difficult time a little bit easier for us, and I hope one day to be able to do the same for someone else in need.

Happy Thanksgiving!

 

We had a great Thanksgiving this year filled with family and friends: Mark’s sister Dawn and her husband and 2 sons (who are a little older than Isaac), my sister Aliyah and a family friend were all here.  We had a very enjoyable time.  Our kids spent lots of time playing with their cousins and stayed (mostly) out of our hair.  Ben enjoyed having so many people around to fuss over him!  Mark made some awesome cream of broccoli soup which Ben LOVED.  The rest of the food was pretty good too, if I do say so myself!

 

Isaac accidentally bit his tongue during dinner but in the midst of his wails managed to say, “I want some pumpkin pie!”  Must not have hurt TOO much.

Jonny and Isaac got their flu shots today and were both sad for a bit, but they cheered up nicely with post-shot “rewards” and of course because their cousins were here to distract them.  Ben had his OT today and did great with some tastes of butternut squash.

This morning Aliyah and I actually went out at 5 am “Black Friday” shopping.  It was the first and will be the last time I will ever go, trust me.  What a nightmare!  Aliyah bought a (strapless!) dress and some shoes to wear to next weekend’s banquet at her college.  The only thing that made the trip worthwhile for me was that I actually did manage to procure a Nintendo Wii at Toys ‘R’ Us.  We hid it away from the kids until Christmas (so “Santa” can officially bring it) but we plan to fire it up tonight for the adults.  We are hustling the kids off to bed as we speak! 

My Smiley Happy Self Again

Hi everyone this is Mark.  I’m helping out while Karen gets ready for work.  Just wanted to let you know that Ben had two doses of antibiotics yesterday and woke up this morning in a GREAT mood.  No fever and he smiled and laughed for the first time all week.  I think he’s feeling better.  Now let’s see… how do I upload a picture onto this thing?

Two on Antibiotics and One Failed Hearing Screen…

Ben’s fevers returned.  Last night he didn’t sleep well at all.  His temperature was over 102 again even though he acted fine all day yesterday.  (And yes, it was a rectal temp – the only way to measure a baby’s temperature if you ask me!)  He seemed to be particularly uncomfortable when we put his hearing aids in.  Since all this began with a runny nose, we suspected an ear infection.  Mark took Ben to the pediatrician today, and now he’s on amoxicillin too.  We’re not absolutely sure Ben has an ear infection since he has such tiny ear canals that we can’t really see his eardrums.  On the bright side Ben is 9 lbs 13.5 oz.  He has managed to gain a few ounces in spite of being sick.  He got his 2nd Synagis shot – his pediatrician thought it would be OK for him to get it today.

Jonny is feeling better on his amoxicillin and is back to his naughty self.

Isaac brought home a note from the school nurse.  It seems he failed his hearing screen at school.  I suppose it is not surprising since Isaac had a recent ear infection, and may have some residual middle-ear fluid.  So he needs to see the doctor too.

The two older boys are mere days away from getting their flu shots…..

We had no luck with getting the Nintendo Wii.  We have our copy of “The Twilight Princess” but no console to play it on!! 

Lazy Saturday

 

We’re all feeling better.  We started Jonny on some amoxicillin, but everyone else seems to be recovering nicely without antibiotics.  Ben is still not back to his smiley self, but he no longer has a fever.  He is also tolerating his regular feed volumes, which is a good sign.  He is still sleeping more than usual, but I expect he will soon be back to normal.

We didn’t do much today other than some grocery shopping.  We are trying to convince the older boys to clean up since we are having family over for Thanksgiving and I don’t want the house to be a pigsty like it is today.

We’ve been more faithful with doing Ben’s “tummy time” over the past 2 weeks and already we’re seeing an improvement in how much he can hold his head up.  We hadn’t done it very much in the weeks after his g-tube surgery because we didn’t want to hurt him.  Two weeks ago he couldn’t keep his head up more than a second or two; now he can for several minutes at a time.  Tonight we gave him a taste of applesauce, and he enjoyed that.  He still doesn’t suck well on a pacifier and has a very sensitive gag reflex.  He does a good job of standing if we support his arms.  It’s so cute to see such a tiny baby standing!

I made salmon tonight.  It was supposed to be baked, but the oven wasn’t working right.  I actually had to finish it off in the $30 toaster oven.  I really hope we don’t have to buy a new oven. 

Mark is contemplating going to EB Games at midnight to see if we can get one of those new Nintendo Wii consoles.  We have reserved “The Legend of Zelda: Twilight Princess” game but not a console.  I don’t know, are we getting too old for such nonsense? 

I think I have finally decided to buy a Palm TX….as soon as we get the money.

Fever

 

It seems that we’ve all managed to catch Jonny’s cold to some degree.  I just had a sore throat that fortunately lasted only 1 day.  Mark spent all of Saturday sneezing, but seems to be getting better.  Isaac woke up this morning coughing and saying his throat hurt and begging to stay home from school, but he seems better this afternoon.  (We did keep him home, but tried to make it as boring as possible so he won’t be too anxious to stay home unless he really IS sick in the future!)  Jonny still has a lot of head congestion and may actually need antibiotics with how long this has lasted.

Ben has had a runny nose for the last couple days, but today he’s crying during his feeds which is unusual.  I just checked  his temperature and it was 101.2 rectally.  He just fell asleep after a dose of Tylenol and I am feeding him at a slower rate than usual (it’s nice to be able to feed him while he sleeps).  I hope this is just a virus that will run its course.

Mark went to get his flu shot today.  He took Isaac with him to see that it wasn’t too bad.  We were hoping to talk Isaac into getting his today too, but he (not surprisingly) doesn’t want to.  That’s OK because both Jonny and Isaac are scheduled to get their flu shots the day after Thanksgiving.  Here’s what Isaac had to say about shots:

Isaac’s “Family Turkey Project”

 

Yes, we all participated, except for Ben.  Isaac, Jonny and I stuck the decorations on.  Mark made suggestions that were nixed by Isaac (he claims to have done some glueing too – I’m not so sure).  It actually was more fun than I thought it would be.  I am glad we did this on Sunday morning before church because it took ALL DAY to dry.  If we had waited until the last minute like we usually do, Isaac would have had a very soggy piece of paper to take to school this morning.  We await the next “family project” with bated breath….