Winter Already?


Yes, we had our first snowfall of the season on Friday.  Thankfully it was short, and most of the snow melted that same day.  But we live in Pennsylvania, after all, and I know more snow is sure to come.

We had an interesting weekend.  Yesterday we had family photos taken.  Everyone behaved well for the most part, but Jonny was a difficult subject.  He kept doing the opposite of what the photographer wanted him to do!  She kept saying, “Everyone had good smiles but Jonathan!”  We should have an interesting set of proofs to look at tomorrow.


Today after church we decided to take a road trip.  We needed some wine for the holidays, so we visited the Nissley Vineyards in Bainbridge, PA.  We used to go there fairly often years ago when we lived near Harrisburg, but now we average one trip every other year.  It’s a neat place with a self-guided tour of the winery, and in the summertime they’ve got music festivals on their large front lawn.

The big boys had their video games as usual, and Ben and Nate just sort of hung out.




The owners’ dog was very interested in the boys:


It’s so beautiful there, even if it was freezing today.




We didn’t stay long.  We tasted a couple of new wines we’d never seen there before, paid, got our precious bounty into the van, and left.  We really need to come back here when it’s warmer so the boys can run outside.

We made a couple of brief stops for photos on the way home.  The Nissley Winery is only a very short drive from Three Mile Island…


…and we even stopped so I could get a photo of the Star Barn before it is moved to its new location in Lebanon County.


We got home in time to make a quick dinner and get everyone off to bed.  Overall, the kids did well on the trip.  (Unfortunately, Jonny drank an entire container of one of those dreadful Nesquik milkshakes.  It didn’t agree with him and we had to make two emergency pit stops at area bathrooms, but he seems OK now).

I hope that as the kids get older we can take more adventurous day trips with them.


Nate Update 11/08


Nate will be four months old in a few days.  He is growing fast!  He weighs around 17-18 lbs (we think; we haven’t weighed him since his 2 month checkup), and he’s starting to look really chubby.  It won’t be long before he outgrows his carseat/baby carrier.  We used the same carrier for Ben for almost 2 years.

Nate is smiling and cooing a lot.  He has begun to laugh out loud.  If left in a room by himself, he will “call” for someone, and then listens quietly to see if anyone is coming to his aid!  He is a very social baby, and loves to be held all day (or at least entertained by someone!)

He has learned how to grasp objects, and already has started shoving them into his mouth.  Lately he has been looking at the food on the dinner table with real interest, but It will be another month or two before we try him with some baby cereal.  For now he nurses well, and also takes his bottles OK when I’m at work.


He seems to enjoy “tummy time”, at least for short periods.  He is healthy, but has a tendency to develop eczema like his daddy and oldest brother.  We will be keeping him well-moisturized in the winter months.


He is thoroughly entertained by his three older brothers.  He and Ben had their first fight over a toy last week…but you’ll have to wait for Mark’s Twosday Tuesday post to see that.  🙂

After having Ben, I almost forgot how quickly most babies grow and develop.


It makes me appreciate and enjoy Baby Nate since I know he’ll grow up too fast.

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.

Halloween and Fall Photos: “Where You Live”


We had a very fun Halloween.  I had the day off from work which is ALWAYS a good thing.  The big boys were so excited to get in their costumes.


Isaac had a grim reaper costume complete with a face mask that seemed to drip bloody fluid.  I can’t believe we let him get that!  He was under strict instructions not to drip any blood around little kids.  Not only was his mask scary, but he could barely see while wearing it!


Jonny was a racecar driver.  I got Ben a surgeon’s costume at the very last minute for half off at K-mart.  It claimed to be a size 3T-4T, but it was a very tight fit on Ben.  Even the hat was close to the right size for him!  Nate got to wear Ben’s penguin costume from last year.


We went trick or treating up and down our street.  Just a few houses after that, Jonny found a hornet crawling in his hair, and Isaac decided he’d had enough, and wanted to go home.  That was just fine with us!  We spent the rest of the evening handing out candy.


We live in rural central Pennsylvania.  On Sunday we decided to take some outdoor family photos.  Unfortunately, the weather was cold and overcast and didn’t make for great photos.  We should have gone out on Saturday when it was sunny!  Still, quite a few of them turned out well.  We went to a nearby national park; a truly beautiful place.



My dad was visiting and was able to come with us:


Central PA isn’t too bad to live in.  I just wish it was warm year round!