ECI 2 Year

Today was Matthew's 2 year developmental evaluation for early childhood intervention services.  Not a surprise, Matthew is delayed.  But with his recent developmental explosion, he's not as delayed as he would have been just a month ago.  

All told, Matthew is about 8 months behind.  That's a 35% delay, which is good compared to the 50% (6 months) he was behind at 1 year.  He's actually made great strides in language.  For receptive language (what he understands), he's on level-- appropriate for his chronological age!  He understands everything an almost 2 year old would understand.  

But his expressive language (what he says) is still greatly lagging (35% delayed- even with the onslaught of new sounds and signs of late), as are his gross and fine motor skills (52% and 48% delayed). His social and cognitive skills are just slightly delayed (22% delayed).  Overall, nothing too surprising to us.

The good news is both his therapists guessed that in this year, Matthew may be able to make up ground, and then may potentially not even qualify for PPCD (preschool program for children with disabilities) when he's 3 years old.  I'm thankful that programs like PPCD exist, and Matthew will utilize it if he needs it, but I am excited about the idea that maybe, just maybe, he won't need it!  I can dream about a year from now, when Matthew can walk independently, and talk... and maybe be mainstreamed into a preschool program! 

Enjoy the Ride

A few of my friends recently linked to a blog post entitled "Don't Carpe Diem", which is addressing the unsolicited advice of "Enjoy every moment. This time goes by so fast.".  I really liked the article.  I totally agree that parenting is hard work.  And I liked the author's metaphor of raising children being like mountain climbing...a tough but rewarding endeavor. 

What struck me about this article wasn't exactly the content, but how it relates to my life.  I never get unsolicited advice.  I wonder why that is.  Do I not look like someone who would be accepting of unsolicited advice?  Do I look too crazed to appreciate it?  Or do they see Matthew, realize that he's unique and not say a word?

Even as Matthew's journey has keyed us in to be more appreciative of the every day, and the gifts we have been given, I'm not beyond needing the occasional reminder.  Recently Darren and I have been lamenting about the fact that parenting is initially physically exhausting (feeding, wakings, diapering, bathing, etc) and then it starts to transition to mentally exhausting (dealing w/emotions, preparing them to be productive members of society, etc). We are learning this is a continuum.  Matthew is still primarily on the physical end, Jackson being somewhere in between, and Alyssa being more on the mental end. 

When I do take those moments to reflect--I'm awed by the neat beings that call me "mommy".  Alyssa is a sweet, confident, and secure young girl.  Jackson is an affectionate, funny, and cautious little boy.  Matthew is a strong, sweet, and active baby.  And just as I'm awed, I also can be frustrated more than I ever thought possible by Alyssa's sassiness, Jackson's mismangement of his emotions, and Matthew's revolting against anything he doesn't want to do.  Every day isn't rainbows and sunshine, but I know the journey is beautiful.  So maybe my slogan isn't "carpe diem" but is "enjoy the ride".

Car Show 2012

We go to the Houston car show every year, and it is a nice time to reflect back how much our lives have changed over the years.

Year 1- Darren and I had just started dating. He went to the car show with friends and took pictures of the highlights to show me later as I was staffed in Brazil.
Year 2- We were dating and were looking at the fun, dream cars--the Mini Coopers, the BMWs, etc.
Year 3- We had just gotten married, and came in from Austin for the show.  We were in the market for a 'family' vehicle as we knew we wanted to start a family soon. The 2 top picks- the Honda Odessey and the Ford Expedition. The Expedition is still in our driveway.
Year 4- We brought baby Alyssa (6 weeks old).  It was our first trip to Houston with the baby, and she slept in her stroller the majority of the day.
Year 5- We brought toddler Alyssa, and I was pregnant with Jackson.  We were living in Houston again.
Year 6- We brought 2 year old Alyssa in the stroller, and 6 month old Jackson in the sling.
Year 7- We brought 3 year old Alyssa and toddler Jackson in the big double stroller.
Year 8- Darren and I went sans kids, well, except baby Matthew in my belly. We went armed with our tape measure, looking for a car with good gas milage that could fit 3 car seats in the back seat. The competitors- the Ford Escape Hybrid, the Toyota Prius, and the Ford Fusion Hybrid.  We bought the Fusion less than 12 hours before Matthew was born.
Year 9- Darren and I went with just baby Matthew. 
Year 10- All 5 of us went this year.  The kids had a great time getting in the vehicles and playing around.  Darren and I looked at what may be the Expedition replacement when that time comes, as well as a few fun (not for the next 20 years) cars as well.

Matthew liked to 'drive'

Alyssa and Jackson buckled up.

The car show was just an amped up version of the kids playing in the garage.  They love playing in the '66 Mustang.

T-2 Weeks Until a Thumb

Matthew's hand surgery is scheduled for 2 weeks from today.  Matthew has been well for 3 weeks, and he needs to stay well for the next 2+ weeks. I can't remember a time in recent memory when Matthew was well for 5 weeks in a row, but I'm hoping and praying this will be the first!  Matthew has always seemed more susceptible to illness, and is considered 'medically fragile' by his pediatrician.  This surgery isn't urgent, and we'll postpone if we need to, but I'd really like to get his hands done and get him out of casts before the middle of the summer.  100 degree heat + a cast from hand to shoulder = no pool and probable stink.

I've always been borderline germaphobe--even Matthew reaches for the antibacterial gel at the doctors' offices and knows to rub his hands together after applying.  But I'm taking it to a new level in these 2 weeks.  Antibacterial gel in every car, the diaper bag, Darren's office, my pocket. The kids can't come or go without a squirt (or a hand wash).  No illnesses are welcome at the Hoy House!  Our sweet baby Matthew is ready for his thumb in 2 weeks!

Baby Steps

Matthew wants to walk.  He walks using his walker. He walks behind his push toys.  He walks pushing his ride on toys.  He walks holding onto my hands.  He walks holding only one of my hands.  With all of this walking, he is becoming much more stable, but we expect he is still months away from being to walk independently.  "Baby steps"-- literally and figuratively.

On Sunday, we took Matthew over to the path near our house so that he could walk a ways on an open stretch instead of walking the pin-ball game in our living room.  He didn't walk as far as I thought he would, but it was almost nap time and there were more than a few distractions.  I think we've found a nice stretch of smooth surface for him to walk.

I'm training to run my first 10k and run on this path.  This image is my motivation.  As I train to run, Matthew trains to walk.  Mathew's strength, perseverance, and spirit keep me putting one foot in front of the other, running down that path. 

Matthew walking down the path.

Matthew's Eating

Out of all of Matthew's latest tricks from his developmental explosion, I think that him eating 'real food' and drinking from his sippy cup is amongst my favorites.  (Though it is hard to rank them, as we love all his new tricks!)  With Mattie eating table food, we now can prepare 1 meal and the only extra effort is to cut it up in small pieces (nothing like the effort compared to feeding him jar after jar of baby food).  We can now go out to eat on a whim (instead of worrying he has baby food in the diaper bag).  It is delightful.  And Matthew seems to really be liking it too. He eats--a lot!  Bananas, blueberries, clementines, grapes, chicken, beef, salmon, noodles, eggs, bagels, cherrios, goldfish, grilled cheese, lunch meat, bread, animal crackers, corn, green beans, peas, carrots, etc. Pretty much anything we put in front of him, he'll eat.  He's the first one to sit down to eat and the last one to be finished.  Really neat!

But, yesterday's GI visit took a bit of wind out of my sails.  Matthew isn't gaining weight as quickly as the GI would like, and Matthew's growth curve has flattened out (not good when he wasn't on the curve to begin with).  Though the GI is happy with Matthew's subcutaneous fat (fat just below the skin) and that Matthew doesn't look emaciated, he recommends Matthew stay on the gastroperisis meds and that we feed him calorically dense foods as often as he'll eat them. We also hope that Matthew just being well will help with his weight gain too.  

Matthew eating spaghetti, messy but wonderful!

Different

We are slowly starting to unload our baby stuff.  Doing so has made me a bit morose, not because I'm sad that we are done having babies, but because our last baby experience was so very different than I had expected.  I looked at the baby slings that I used so often with Jackson, but couldn't use with Matthew because he would overheat. And the baby shoes that Matthew never wore because of they wouldn't fit with his braces.  And the pump that was used way more than I ever expected because Matthew never nursed because of his recessed jaw.  It has just been a different experience with Matthew.

On Friday I updated Matthew's speech therapist on his latest developmental explosion.  I was explaining how exciting it was to see Matthew walk with his walker when she commented how glad she was that we used it, that many families don't want to use it because they aren't ready to admit their little one isn't a typical 2 year old.  

We know Matthew isn't typical, and I can't even pretend that he is.  On the plane to Chicago for Thanksgiving, I told the person sitting next to us that Matthew was a little over 1, instead of almost 2.  I figured that Matthew was developmentally similar to a 1 year old and not that much bigger than about a 15 month old, so I could probably get away with it and I didn't need to go into Mattie's life story with a stranger. Within 20 minutes, my seatmate started to catch on that Matthew wasn't your typical 15 month old.  After coming clean and telling him that Mattie was almost 2 and was born with a rare chromosome disorder, he revealed that his youngest son was born with a more common chromosome disorder and was developmentally delayed as well.  It ended up being a great trip with a person who understood a little of what we have experienced.  

We can't pretend that Matthew isn't unique, and when I try it betrays our experiences and his journey.  I know walking with a walker makes Matthew look different, but he is different!  And some of the things he does will be or look a bit different too. I'm okay with that-- Matthew is perfectly unique!