January in a nutshell. February coming soon!

Hi everyone! I know this post has been a long time coming, but the accompanying photos and video will show that we have been busy! A couple milestones to celebrate this week: first, today is exactly 1 year post-surgery. I can't believe how fast this year has gone and how wonderfully healthy Coley continues to be. Second, Coley turns 18 months old tomorrow!!! It feels like just last week that I was setting up this blog. I'll probably be saying that for the next 18 years. Geez... I sound like an old person.

Enjoy the photos and videos!

With much love,
Anna


Coley has a new play structure. Thanks, Gaga!


The boy LOVES his books...

Sorry this one gets so shaky! And no, he does not often just sit and look at books. Wouldn't that be nice!


(More, Mama!)

We had a visit from a west coast-residing Bowdoin friend. Christo was kind enough to read Coley "Pat the Bunny."


Trying on Daddy's slippers:


And of course, he still loves his doggy:

Weeee!! Sledding!!

Merry Christmas everyone!!

Music by Pat Colyer Combo (from E/L).

Daddy's Old Vest

Mommy found this old vest of Daddy's from when he was two-years-old.


Reading about tractors with Daddy.

A bittersweet day in the life of Coley & Anna

It is a bittersweet day in our lives as we say 'so long' to our dear friends Heather and Nate. Today is their last day in Boston. They are moving on to the milder climes and nearby family in Davidson, North Carolina.

We met them in a baby development class in the spring and have been good friends and playground pals ever since. Heather has been a terrific friend and support to me (Coley loves her, too - climbs all over her in music class!), and Nate is just the sweetest and most energetic little boy!

We are so happy to know them and to have spent many quality hours together in music class, playgroup, at the playground, at JP Licks, in the Atrium play space, walking in the Arboretum, and so much more. So we are incredibly sad that they are moving. We wish them well in their new hometown and hope to see them again soon!!

Here are a few of us moms with our dear babes:
















And here's a funny video of Coley and Nate:


We'll miss you, Heather and Nate!!

Much love and luck to you,
Anna, Coley, and Ted

Lions and Seals are Cool

This afternoon I got to meet a real live LION named Christopher! He was pretty cool. He was roaring a lot which was kind of scary, but I didn't cry.

I also loved the Tigers and Tree Kangaroos, but most of all I think I liked the Peacock that let me watch him up close. The Franklin Park Zoo is not far from my house, so I hope I can visit these new friends again soon.

Also, Dad wrote this article about me meeting some Atlantic Harbor Seals at the New England Aquarium last weekend. They reminded me of Penny.

Roarrrr,
Coley "Bear" Wells

Three cute videos

Walking!

Our boy is walking! Coley's gone from drunken steps and regular falls to cautious walks across the living room. Watch!

We are so pleased to report that a recent check-up with Dr. Marx went well. His oxygen levels are at 88%, growth is good, developement is super, and his smile can melt a glacier. We're hoping to put off his next surgery to age three or three-and-a-half; the longer he can wait the better. Six months until the next check-up.

Tea time!

Happy 30th Mommy!!!

My Mommy turned 30 today!!! So I helped Daddy make this video all about how special she is to me. It's also all about our three weeks on Port Hood Island, Nova Scotia. This place is really fun! I hope you like our special birthday video. Love, Coley

Port Hood Island

Coley loves Port Hood Island. No surprise. Everyone does. Lots of good sleep, sand, and snuggles. His first dip in the Atlantic took place in one of the warm tidal pools out back by big rocks. He prefers playing in the sand or with rocks to being in the water, though. He loves the front porch where he can play blocks, pick flowers and leaves, or harass his big sister Penny.

Here's a slide show of our first week. Back to Boston around August 17th. Miss you all!

Love, PACT (PennyAnnaColeyTed)

MO and OH Trip June 2009

We had our first family trip to Annada, MO then Cleveland, OH the last week of June. It was a fitting first trip for Coley going back to his "roots" to see where my father grew up, then on to where Anna was born and where her mom and dad are from.

Coley was fine with his first plane flights! Slept most of the way on each flight. Below is a slide show of some of what we did. Coley's great grandmother - "Nonnie Nonnie Nonnie!" as she likes to be called - was wonderful to stay with and is in LOVE with her Coley.



PS - Coley slept through the night last night from 9:20PM to 7:30AM! Ten HOURS!! Way longer than anything he's done ever. We started the more strict "Ferber" method yesterday...and it's working. Not fun at first has he cries, but each nap got easier, and hopefully it keeps going well.

Using the baby's blog for my own (not at all) evil purposes

Here is a recent radio interview I did for Wilderness Heals. Be sure to visit the event's website and sponsor me!

pedi checkup and early intervention update

Yesterday we had Coley's 9-month check up with his wonderful pediatrician. He weighs about 19 lbs and is about 27 inches tall! That puts him at 35th percentile for weight and 25th percentile for height, which is where he was at his 7-month check up, so all is well there!

Today we had a routine evaluation of Coley's cognitive, fine and gross motor, social-emotional, self-care, and speech abilities. He measures in the 11-14 month range for everything!! They called him "brilliant," in fact. I could have told you that...

9 months!

Seriously?? 9 months?! I can't believe it! Last year, this milestone seemed so far away.

Hi everyone! Here's an update from the other side of 9 months! He's crawling and cruising around in his own special way: with one foot and one knee. Even so, he's speedy and curious - watch out, Mom and Dad! No more plopping him down on the carpet to play. The boy is on the move!

He is eating pretty much anything and everything in the way of food - fruits, veggies, grains, meats, yogurt and cheese - and still nursing like a champ, too. He tried salmon last night, and likes it almost as much as his daddy (which is not very much). He's growing lots and fast - check out those arms!

He has 4 teeth: two bottom middle ones, then the canines on top, but not the upper middle ones! It's a little strange... I'm afraid we might have Dracula-baby for a while. Hopefully the middle ones will come in soon.

And sleep, well... sleep will come some day. A good night is when he's only up twice. He's still waking up three or four times before 7am. And I'm lucky if I can get him to sleep before 9pm. He's just too excited by his new found mobility and babbling language to sleep for too long! Fortunately he does take a nap or two during the day. And overall, he's a really happy kid! So the lack of sleep (compared to what the "experts" say he should be getting) doesn't seem to be making him too cranky.

Thanks, all, for following our story here. Here are some pictures and some video footage since the last post (6-9months old).



Here's the video!

88%

Our next visit with our cardiologist, the amazing Dr. Marx, is not for six months! Yippee! We had our post-op check-up today and Dr. Marx was thrilled with Coley's recovery and health. So much so, in fact, that we don't need to visit Chilren's for half a year! A little scary, but very good news. We'll still see his pediatrician, Dr. Laster, regularly.

Coley's blood pressure was a little low (better than high, where it was after OR). Weight is up to 16 lbs, 4oz - he was stuck at 16 lbs for over a month, but is now growing again. 26.5 inches tall.

His blood oxygen level got up to 88% very quickly - they could have gone higher had we waited. This is great news (think oxygen to the brain, muscles, etc). Hopefully after the Fontan surgery in two years he'll be in the 90s% (most people are at 98% or higher, Coley was in the 70s% prior to surgery). Dr. Marx said because Coley handled the Glenn so very well, that the Fontan should also go smoothly.

Below are three new video clips. Some of the cutest ever, I think.

PS - This website can now be accessed at www.coleywells.com !

Coley and Penny - new video

Here's a little video of Coley at 6 months with his big 4-year-old sister Penny! Our boy's recovery continues to go well. He's energetic and active. He's able to play more and more independently (if only he'd sleep more independently). He's pink and smiley! He's also a very lucky little boy to have such a patient doggy sister, as you will see in this video...

Playing on Sunday morning

We're H-O-M-E!!!!!!

We were discharged this afternoon, and just arrived home at about 6:00 after a stop at the pharmacy for Coley's meds. We are so so so happy to be here. I'm a bit nervous to be out from under the watchful supervision of the nurses. But I'm sure that will pass soon. We're now looking forward to a balmy weather, some walks, some sleep, getting Penny back from New Hampshire, and just enjoying a couple of days together!

In case anyone is curious, his meds are: Lasix, a diuretic to help his body process any extra fliud that might build up around his lungs or heart; Captopril to keep his blood pressure in check; and a small dose of Aspirin as a blood thinner. They are all orally given. He will be on those for the forseeable future; he'll outgrow the dose of Lasix and Captopril and then they'll reevaluate their necessity. Aspirin he'll probably be on forever.

Here's a minute of video with Coley letting you know how he feels about being home (and eating rice cereal). In general, he seems REALLY happy for the time being. It's kind of weird; he's really quick to smile and laugh. He's been reaching for things and playing like never before, shaking the rattle on purpose and hitting things to make noise. Let's hope he keeps that up!!

Okay, more soon. THANK YOU for your love and support and thoughts and energy this week and beyond. Really and truly, we couldn't have done it without you all there.

Friday... and going home?

While Coley is happily playing with my mom and his Sesame Street balloon, I wanted to update you on what's been going on today.

He slept fairly well last night. Down at 9pm, then up at midnight and 4:30 for comfort and to nurse. That time he stayed up for a good hour and a half before finally falling back to sleep. But then slept until he needed his meds at 8.

He was doing great for a few minutes when he woke up, but then, of course when they wanted to come in and do an echocardiogram, which he has to be really still for, he got really cranky and gave the echo tech and Dr. Marx a bit of a show. Made a liar out of our nurse and Dr. Marx who both told the echo tech that he was "a really easy going baby." Funny... But they did do the echo and it looks good: good function and flow. My mom took him down to x-ray, which will show whether there is fluid buildup around the heart or lungs. I think they were not going to do the x-ray, but he was doing a little grunting breathing this morning in front of Dr. Marx, so he said to keep it. Not long after the doc left, though, he had a HUMONGOUS poop. And stopped struggling! Of course...

They also just did another blood draw to check white blood cell count, which was a couple points high yesterday. That could indicate infection, but he has not had a fever, which would also be a sign of infection, so they're not too worried about it, just doing it as a precaution. Hopefully the results of the x-ray and CBC are good. Then we'll be able to come home this afternoon! Of course I'm a little scared for us to be alone with him, no computer monitoring his breathing/heart rate/sats, but it will be nice to all sleep in the same place comfortably again.

He's being really good right now! Maybe he'll take a nap. Me too. I'll let you know our discharge status or any other test results as soon I find out.

Oh, and thanks to all our visitors yesterday and throughout the week. We've had many! It is wonderful to feel so loved and cared for. Thank you.

Good afternoon!

I thought I'd write a quick note since I can sign in at the moment... it's still spotty.

He's having a nice afternoon so far. He had a bit of a rough morning, starting with peeling off his bandages - ouch! - followed by a blood draw and just being poked and prodded a bit. All that combined with being exhausted made for an hour-long crying session. But he finally slept for a couple hours while my mom stayed with him. I went home, showered, grabbed different clothes and food, and returned to find a smiling, happy boy! And my sister-in-law is here; it's great to see her!

They told us we would be going home tomorrow or Saturday. I hope he is doing well enough to be let go.

Ok, more visitors are here - another update later.

He's himself again!

Grandma (Mary) here; I had my camera ready when he woke up yesterday. No more tubes, no more drug-induced sleep. I haven't heard yet how last night went, but these pictures (a mere 48 hours post-surgery!) are worth thousands of words! (I have some little videos, too, but they were taking too long to upload, so I'll try again later when I have a faster connection.)