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!

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.

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.

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!

Random Events from the Last Few Weeks…

I’ve forgotten how tired I get when I’m pregnant. By the end of the day, I am usually too tired to do much blogging. I tend to fall asleep on the couch around the time the boys get tucked in bed.

So although a lot has happened over the past few weeks, I haven’t blogged too much lately. Here’s some of the stuff I’ve neglected to put on the blog (in no particular order):

• Isaac had his latest piano recital. He played a piece from his lesson book, and also “Plumm’s Minigame” from the “Legend of Zelda, Twilight Princess” video game. What a cool piano teacher he has to let him play video game music for the recital!

• Jonny graduated from preschool! They had a neat little ceremony, and we had punch and cookies afterward. It was a little crowded since Jonny’s preschool class is big (over 30 kids), and there were parents, grandparents and siblings at the graduation. We are so proud of our big boy!

• The big boys have decided they’re into Pokemon. Mark is not happy about this since he thinks Pokemon is nothing but a money-sucking device. I don’t mind so much since Pokemon seems to involve a lot of reading.

• Since we had to retire Ben’s baby carrier, we found a new way to carry him around stores, etc: the umbrella stroller! Ben really enjoys it since he can see more of what’s going on. The big boys especially enjoy pushing him around in it, which can be a big help (or a hazard depending on the day!)

• Ben has a brand-new Zevex Infinity feeding pump. This was supposed to be an upgrade from the Enteralite that we’ve had for a year and a half. There are a lot of things to like about the Infinity (it’s quiet, it’s smaller, it’s nicer), but there are a few things that we don’t like (the buttons are small and are all the SAME shade of blue. This makes it very hard to do any middle-of-the-night adjustments. Couldn’t they have at least put green and red LED’s on the “Stop” and “Go” buttons?) Ben of course doesn’t care, as long as he gets fed!

• We’ve been grilling alot lately. The weather hasn’t always cooperated. Both yesterday and Sunday Mark had to dash outside to save our food from sudden downpours of rain!

• Yesterday was our 13th wedding anniversary. Mark got me a Powerball lottery ticket for tomorrow’s drawing. I hope we win! I am so lucky to be married to my best friend.

We can’t believe it either…

Our new little one is due around August 3rd. The big boys are very excited, and Mom and Dad are speechless!  I guess we’ll have to change the name of our blog…

Salt-Crusted Tenderloin and Blueberry Tea Cake

 

My husband Mark and I are big Food Network fans.  One of our favorite shows is “Good Eats”, starring the most awesome cook in the world (in my opinion, anyway), Alton Brown.  Beef tenderloin was on sale at our local butcher shop, so we bought half of one.  Prior to seeing Alton preparing tenderloin on his show, we might never have attempted cooking it for fear of ruining such an expensive cut of meat.

We made Beef Tenderloin in Salt Crust; a great recipe we’d tried once before.  Basically, the tenderloin is surrounded by fresh herbs and wrapped in a crust made of flour, egg white and lots of Kosher salt.  Sounds crazy, but boy is it good!  On the outside, like Alton says,  it looks like an ugly loaf of bread, but the meat inside is to die for.

 

We were just getting ready to sit down to dinner.  The only thing left to do was to slice the meat.  Unfortunately, the electric knife jumped out of Mark’s hand, clattered to the floor and sliced his right middle finger in the process.  So dinner was interrupted for a couple of hours.  Three stitches later, Mark is doing just fine.

We finally sat down for dinner, and the meat was moist and flavorful.  And no, we don’t like meat well-done.

We had this Lemon and Blueberry Tea Cake from an Emeril Lagasse recipe afterward.  I was inspired by all the fresh local blueberries for sale in recent weeks.  I am not usually a person who likes fruit-containing desserts, but I thought it was very good, especially when served warm with vanilla ice cream.  I’d better hit the gym every day this coming week!

Curried Duck

We had a great weekend.  I was off for 3 days, which was especially nice.  On Friday night Aliyah babysat for us and we had a rare evening out without the kids.  We went out to a nice restaurant to celebrate our 12th anniversary.   We had a wonderful time and drank too much champagne!  Thank you Aliyah!

For some reason, I was in the mood for Trinidad food this weekend.  Yesterday we had doubles for lunch, and they came out great.  Today we had curried duck, curried potato and channa and roti.  It was the first time I made duck and it was quite good, if I do say so myself.  I also tried to make “buss up shut” roti, but it didn’t come out quite right – not ribbony enough, (rather like a sada roti actually) but still good.  I guess I will try again another time.  Mom, if you’re reading this, that means that you should send some of that frozen buss up shut for me when Aliyah returns!

The kids are well.  Isaac has an end-of-kindergarten concert, and there is a song where he is supposed to “strut his stuff” and do some sort of action onstage, and he doesn’t want to do it.  He says he’ll be embarrassed.  So we’ve been helping him think of things to do.  I’ll be curious to see what he actually does.

Jonathan has been really into jigsaw puzzles these days.  He can’t seem to get enough of them.  And he’ll build them over and over again.  His birthday coming up soon, and he is so excited.  He has been trying to read and write also.  He’s also been interested in the solar system (because that was Isaac’s very favorite kindergarten subject this year), and here’s Jonny’s little scrapbook with stickers of all the planets.  He wanted help spelling the names of the planets, but I was busy helping Isaac with something else.  He had a crack at spelling “Earth” by himself:

 

It’s definitely “ERF” when he says it! 

Ben has been getting better and better at rolling.  One day last week when I was at work, Mark was at the computer, and he had put Ben on his back on the living room floor.  Ben started to cry, and he was lying on his belly!  Mark rushed to get the camera and called everyone to clap for him.  Ben was so surprised by all the attention that he forgot that he was crying!

I have still been going to our local YMCA usually three times a week.  While my weight is still about the same (probably from too much creme brulee and duck), my blood pressure and cholesterol have greatly improved.

For anyone who is interested, here’s the curried duck recipe:

The Soccer Blues

 

Isaac has had a rough couple of soccer games.  The other teams had very energetic coaches and well-defined strategies, and completely blew Isaac’s team away (even though at this stage the games are not officially scored, the kids ALWAYS know who won).  Not surprisingly, Isaac has been a little discouraged, because, well, it’s more fun when your team wins every once in a while.

So on the way home after his last game, I tried to give him a little pep talk.  I told him that winning wasn’t the most important thing, and what mattered most was that he played with his teammates, had a good attitude, showed good sportsmanship, and never gave up.  He seemed to cheer up a bit.

Later that day, I was relating all this to Mark, and feeling rather proud of myself for passing on some valuable life lessons to my offspring.  I asked Isaac, “What’s more important than winning?” 

Without hesitation, Isaac said, “Losing?”

I guess I wasn’t that good a communicator after all. 

In other news, Ben has caught the strep throat I had last week.  Poor baby.  He’s now on antibiotics and doing a little better.

Isaac had to take “a sign of spring” in to kindergarten class for “Sharetime” today.  I gave him three suggestions: a picture of the bunny we found in our front yard, a photo of him in his socccer uniform, and ants (we know for sure that warm weather has come when these appear in our house).  Guess which one he chose?

 

The picture above was the bait we set out to catch ants.  Note that they weren’t at all interested in frosted flakes, but swarmed over the apple skin.  Go figure.  Mark captured several of them in a small plastic bottle and Isaac proudly took them to school this morning.  I am told show and tell went well, and there were no escapees.

Happy First Birthday, Ben!

 

And what a busy birthday it was!

The weather was sunny and gorgeous.  Ben had a 9:00 am appointment at our favorite tertiary care center for a Feeding Clinic evaluation.  Since the drive is more than an hour long, we all needed to be up very early.  We meant to get Isaac dressed for school and put him on the bus, but he awoke wheezing and coughing.   The wheezing did clear up with his inhaler, but I was uncomfortable sending him to school during an asthma flare if we were going to be out of town.  So we decided not to send him to school at all, and he ended up coming with us.

Ben had a very good initial session at Feeding Clinic.  The director of the program (who is a very gentle, soft-spoken person) spent a long time talking with us and getting Ben’s medical history.  Then we put him in a high chair (for some reason Mark chose a “manly” pink bib for him) and the director of the clinic fed Ben a mixture of apple, carrots and mangoes.  Yummy!  Ben ate a little bit with a minimum of gagging, and no choking.  Apparently Ben has what the director calls “a pathologic tongue thrust”, and we will have to retrain his tongue not to push things out of his mouth.    But he was pleased with how Ben did overall, and we are all hopeful that we can transition Ben to oral feeds soon.  We will be working with Ben about 2-3 times a day with oral feeds, and hopefully have him scheduled for a swallowing study in the next few weeks.

The older boys occupied themselves with toys and video games during the long feeding session.  The clinic has a very relaxed, kid-friendly atmostphere, and I was relieved that the older two weren’t bored and misbehaving.  After the Feeding Clinic we all went out to breakfast at the local Friendly’s.  I ate far too much! 

Then we went to Lancaster, PA to visit their Barnes and Noble bookstore.  We don’t have one of these near our home.  The boys had a blast, and we bought a lot of cool books, mostly about space and the solar system, which Isaac is really into these days. 

During Ben’s feeding session this morning, we had a revelation: the high chair at the clinic could recline, which would be a great feature for Ben with his limited trunk strength.  We’ve never had a high chair like that even though Ben is our third child, so we went to Toys R Us to buy him one.  We figure he’ll get years of use out of it.  While we were there we also got him a cool brand new Exersaucer, but we haven’t assembled it yet.

We came home just in time for Ben’s physical therapy session.  He wasn’t too happy at first (he had fallen asleep on the ride home and hadn’t taken a morning nap), but he cheered up thanks to big brother Jonny.

 

We had such a pleasant day spending time together as a family (FYI: Isaac didn’t wheeze once while we were out!)  I had worried that having to go to the same teaching hospital where Ben was in the NICU almost exactly one year ago would bring back nothing but painful memories, but today wasn’t like that at all.  I think that in many ways this has been the longest, most difficult year so far for our family, but today was all about sticking together, enjoying each other, and having hope for the future.