February 2010 Update

For a while I wondered if Iwas done with this blog altogether, but since it’s something I enjoy doing (and it helps keep my family in Trinidad up to date with what the kids are up to) I decided to start blogging again.  It has been so long since I last posted that I decided that I’d do another update.

Isaac is 9 and in 3rd grade.  He does GREAT academically, but if you ask him, he always says he hates school.  He loves video games, reading (especially manga and other graphic novels a.k.a. comic books), and playing the piano.  He doesn’t always enjoy the songs his piano teacher assigns, but often plays songs from the Legend of Zelda video game series just for fun.  Since I don’t play any instruments, I’m always impressed to hear him play the piano.  Isaac also plays soccer in the spring and fall because we make him.  He is a wonderful big brother to Ben and Nate (but just manages to fight and disagree with Jonathan on a daily basis!)

Jonathan is 6 and in the first grade.  He does fairly well in school, but is one of those kids who has trouble sitting quietly at a desk all day.  He does well with his schoolwork, however, and is an excellent reader.  He is an active kid who enjoys running around the house, playing video games, helping me cook desserts, and building with Legos and K’nex.  He is definitely a snuggler, and even now loves to sit on laps for hugs and kisses.  He talks non-stop at home (just like at school), and says such funny things sometimes.  I took the photo below after he asked me to give him a faux-hawk just like Ben’s.

Nate is 19 months old.  Wow.  I’d forgotten what it was like to have a “typical” toddler in the house.  Nate started walking at around 14 months, and since then we haven’t had a spare moment to ourselves it seems!   He is very sweet but manages to get into all sorts of mischief.  His favorite pastime lately is scattering things everywhere.

He enjoys emptying the contents of the dishwasher onto the floor.  He puts silverware into the trash.  He puts chalk into the bathtub.  He hurls toy cars and hard wooden blocks at our heads.  He sets the oven to self-clean.  He loves playing with DVD and video game cases, so we decided to get a cabinet that mounts on the wall.  Did that help?  Nope.

Thank goodness he has stopped splashing in the toilet for fun!

Nate says quite a few words as well, but still resorts to screaming when he’s frustrated or bored or tired or hungry.

Benji will be 4 at the end of April.  How time flies!  He still has a sweet, quiet, easygoing disposition and is such a joy to have around.  He loves playing with toys that spin, or anything long and skinny that he can hold in his “big” hand.  He weighs around 28 lbs and is in 2T clothing.  He has gained nicely in the last 6 months and is starting to look rather chubby!

Ben gets around by rolling or “army crawling”.  He can get from a lying to a sitting position by jamming his little feet under a heavy piece of furniture and sitting straight up with his strong abdominal muscles.   He can stand and use his arms for support on furniture, but he will throw himself backwards without warning, so he can’t be left in that position by himself yet.  He has been doing much better in his gait trainer, and finally seems to get the idea that he’s supposed to propel himself forward.  Nate also loves the gait trainer.

Ben still wears hearing aids and glasses, but is getting more opinionated about whether he wants to wear these or not.  I suspect that his glasses are a little uncomfortable these days because he’s grown so much in the past year and also because a certain little brother chewed the pieces that fit behind his ears.  In any case I think he’s due for a new pair even though his prescription hasn’t changed.

Ben is still g-tube fed, and is still very resistant to oral feeds.  Every so often, he changes his mind and willingly eats and tastes food that I’m feeding Nate, but that only happens once in blue moon.  We keep working with him, but it’s discouraging at times.

The biggest change that has happened with Ben over the past few months is that he has been attending preschool 3 afternoons a week!  We were so anxious about him going to school, but it has turned out to be wonderful for him.  He attends a local preschool for children with special needs.  The class is very small, and he has lots of one-on-one attention.  He loves going, and is full of giggles when Mark takes him in.  He has PT, OT, and ST at school, and they also work with oral feeds.  He also has circle time and playtime just as “typical” kids would in preschool.  He’s one of the smallest kids at school (if not the smallest), and everyone loves him!  I think I’ll have to do a post just about Ben’s preschool.

Ben continues to be wonderfully healthy, and we’re thankful for that.

Mark and I are doing very well, but we are tired all the time it seems.  I still work full time and Mark is home with the boys full time.  We still enjoy cooking together, and trying out new recipes.  “Santa” brought us a new TV and a PS3 this Christmas, and we’ve both been enjoying playing “Dragon Age Origins” after the kids go to bed.  We’d like to go to the CdLS conference in Dallas this year and are still working out the logistics of that.  We’re also planning a trip to Trinidad this summer…if we can get everyone’s passports organized!  We already struck out once; we got caught in a traffic jam on Friday afternoon and ended up not being able to get the boys’ done.  Maybe this week.

Hopefully I can keep this blog updated on a semi-regular basis.  We’ll see.

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…

Jonny Isaac Stegosaurus

Ben digs the dino bones

We visited Washington DC for a day…

Washington Monument

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

Jonny and Isaac Mount Vernon2

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.)…

Isaac and Jonny Cape May

Babies under rain umbrella

Meanwhile, Jonny turned six…

Jonny 6th bday

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

Isaac and Nate

Isaac and hermit crab

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…

Benji 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?!?

Soccer photo

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 recital

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!

Jonny's sixth birthday

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.

Ben at dinner

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.

Hershey Gardens

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!

Nate dedication

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…

Graduation

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.

Anniversary dinner

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

When it rains…

nateyneb

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!

olds

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.

montana

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.)

nice-rental-car

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…

New baby

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…