Where has the summer gone?

Good question, since today is the first day of fall.

Let’s see…we visited our family in Pittsburgh and went to a very cool museum…

We visited Washington DC for a day…

And the next morning visited Mount Vernon and learned all about George Washington…

We took a brief trip to the Jersey Shore (which the older kids LOVED even though the water was much too cold for my Caribbean sensibilities.  Ben agreed.)…

Meanwhile, Jonny turned six…

Isaac turned nine, and Natey turned one.  Isaac decided on hermit crabs for his birthday present…

Mark had a birthday this summer too, but I forget how old he is! 

Benji had his last home-based Early Intervention sessions with his awesome therapists, and got to visit his new preschool…

…we played too many video games, learned some new piano pieces and read a couple of Narnia stories and Charlotte’s Web and tons of books for the school reading list, cooked with lots of fresh veggies from our local CSA, and before I knew it fall was here, and I hadn’t updated my blog in months!

I hope everyone had as much fun this summer as we did!

One Sunday Afternoon…

We actually had sunshine!  We’ve had so much rain this June that I’ve been wondering if it’s really summer!

We got home from church, had lunch, and decided to have the big boys turn off the video games (after all, they can do that if it rains), and play outside.

First, we got out the bubbles.  We got Jonny a Zome Tool Crazy Bubbles set for his birthday (because I am a chemistry geek at heart), and it really is very cool!  It’s neat to see how the bubbles form within the structures you build, but then the wind takes over and it acts just like a large traditional bubble blower.

Both big boys loved it.  Nate giggled every time  there was a long stream of bubbles.

We got out the Slip ‘n Slide for a bit.  The big boys enjoyed it but the water was frigid!

The babies watched intently.  I know from past experience that Ben doesn’t much care for the cold water.  I tried Nate and got an almost identical reaction.  Can’t say that I blame them.

The big boys practiced their gymnastics.  Mark and Isaac tried to teach Jonny how to do a cartwheel.  I think he almost got it.

Mark and the big boys even washed both vans!  By the end of it all, Ben fell fast asleep in the grass.  He really does like being outside.

I am really hoping that this summer we can spend more time outdoors.  We are actually going house-hunting over the next few days.  We are hoping to find a home with a bigger, safer yard for all our boys to play outside more.  Wish us luck!

Has it really been a month?!?

More like six weeks!  I haven’t posted at all for May – I don’t think I’ve ever missed an entire month since I started this blog.  Since this is my “journal”, I feel obligated to at least mention where some of the last month has gone…

Isaac has just completed second grade.  He has also finished his soccer season with lots of improvement in his soccer skills and attitude (for the most part).  He’s doing GREAT playing the piano, and genuinely enjoys playing.  Everyone but Mark (who was horribly sick with food poisoning) went to hear him play in his spring recital.  Even my dad was here at the time, which was a blessing since he was able to help with Ben during the recital.  Ben and Nate were big fans of  Isaac and his classmates; both enjoyed the music, but were a little loud and had to be escorted to the back of the concert hall!

Tonight we all went to see Jonathan in his kindergarten concert which was so cute and very entertaining.  Jonny turned six on Saturday, and we had a great birthday celebration at home, and one of his friends from school was able to spend the night.  He has come a long way since he started kindergarten – he is reading very well, and his behavior in class is much better than when he first started.  Jonny and I put together a time capsule of his kindergarten year as part of a class assignment, and I really enjoyed doing that with him.

Benjamin is doing great, still has healthy and happy as always. He turned three at the end of April, and we celebrated by going to the beautiful Hershey Gardens for a walk and some photos.  After that, we went out for dinner.  Ben had a great time being out with the family.

We still struggle from time to time with getting him to leave his MIC-KEY button alone, so these days we usually have him in overalls or an ace wrap over his belly.   We’re still working on oral feeds.  For about a month we took a break and didn’t really push the issue at all, partly because I felt it was turing into a power struggle of sorts. We restarted in the last week or two, and there have been good signs of progress.  Ben has actually started opening his mouth for the spoon, has been mouthing toys and objects more, and has been willing to take tastes of foods or drinks that other people are having.  I am cautiously optimistic, and hope that this new curiousity about food continues.  I hope he realizes what he’s been missing out on!

Nathaniel is 10 months old, and growing by leaps and bounds.  We had his baby dedication on Mother’s Day.  He definitely outweighs Ben, and this week he officially has surpassed Ben with his gross motor skills.  He now crawls forward (after a month of crawling backwards and getting stuck in tiny corners), and can now pull to stand.  He is such a social boy and isn’t happy unless someone is either holding him or helping him to stand.  He loves Ben’s therapy sessions and seems to think they’re for him…Mark is constantly having to corral him during therapy.  He now shuns baby food, and loves to eat whatever we’re eating.

Let’s see – what else…

My dad stayed with us for a few weeks in May.  The yard never looked so good, and he helped out immensely with the dishes and the boys.  I’m afraid he spoiled Nate terribly!    My sister Aliyah graduated from college.  The ceremony was outdoors, and we all attended, and then all went out to eat afterwards.

Mark and I celebrated our 14th wedding anniversary at the end of May, and my awesome sister- and brother-in-law watched the kids for us so we could have a rare evening out (we went to a restaurant called “Eleven” in Pittsburgh.  The food was amazing!)  What an awesome gift.

Well, let’s hope I do better with blogging this month.

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.

Spring Soccer

I love watching the big boys play soccer!

Isaac is on one of our local AYSO Under-10 teams, and Mark is coaching.  They’ve had two games so far.   Jonny still plays on the Under-6 team but hasn’t had a game yet.  So far, the cold, rainy April weather hasn’t been cooperating too well with practice days or Jonny’ s soccer games.

However, the weather was gorgeous on Saturday, and it was nice to get everyone out for a little fresh air and sunshine.  I loaded Ben and Nate and all their paraphernalia into their double stroller.  Both little boys were fighting colds and Nate wasn’t in the happiest mood.  Ben, however, loves being outside.

Jonathan was all set with his Gameboy and a snack.

It was a little difficult watching three kids under 6 without help (since Mark was coaching), but it was still fun.  Nate got fed up sitting in the stroller and wanted to be held.   Jonny also wanted to sit on my lap along with the baby, and predictably had to go to the bathroom during the game, but he eventually found a friend to play with on the sidelines.  Ben, good little guy that he is,  fell asleep shortly after the game started and slept for hours.

To my surprise, all the kids (except for Ben who was sleeping with the stroller canopy up) got mild sunburns.  I never thought the sun would be strong enough for that!  I’ll be sure to take sunscreen to future soccer games.

I’m really ready for a whole week of warm sunny weather!

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.

Our “Twins”

I haven’t been updating my blog nearly as often as I would like to lately – Nate, Ben and I are all fighting nasty colds.  I’ve actually been running a fever these last 2 days and actually was sent home from work early on Tuesday – something that has NEVER happened to me before!

So I’ve been spending a lot of my spare time cuddling with babies, napping, drinking lots of tea and juice and taking my ibuprofen.  I can’t wait for spring when this cold and flu season will hopefully come to an end.

Nate and Ben are almost like twins these days.  Ben will be 3 soon, and Nate is about 6 months old, and they both weigh around 20 lbs.  They are both in 12-18 month clothes, although they tend to be a little loose on Ben and a little long on Nate.  And they are similar in terms of their development, although Ben is ahead in his gross motor skills (can roll both ways and is starting to ‘army crawl’), and Nate is ahead with oral motor skills.  They can both now sit independently fairly well.

I have noticed that since Nate has been sitting more, Ben seems to have decided that sitting isn’t so bad after all.  Previously, he just enjoyed rolling around on the floor.  Of course, Ben’s better vision with his new glasses could be encouraging him to sit up and look around more too…

Nate hates to be left alone for any period, but he will often play happily if he is sitting with Ben.  That is, until Ben takes away his toys…

We had hoped that Nate would give Ben some positive peer pressure with his development, and I think he has.

I think Ben looks proud that Nate fell over before he did!

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.