Monday, August 30, 2010

Potty training, already?, William just follows me everywhere and imitates me!
I love the one shoe off look!

Sunday, August 29, 2010

But Mom, I never get to finger paint.....

August 23, 2010
Imagine after a busy morning outing, Mr. Nicholas decides not to nap (sigh).  Then, he escapes to the craft corner in the basement and insists on finger painting (trust me, there was insistent begging and even a pouty, "but Mom, I never get to finger paint anymore!")

William hasn't embraced his love for messy sensory play.  He stayed relatively neat (in comparison to Nicholas) but ever-so intently watched brother's every move.
One big mess + two happy boys = a success afternoon.

Popsicle Success!

Finally, finally, I've found something William will eat (kind of)...
Ice Popsicles!
It's provided him with something to keep him content during mealtime at the table...and he actually puts it in his mouth.  Score for Mommy, AKA oral-motor specialist.
Looks like one happy boy!
Nicholas is especially pleased with William's revelation, since he loves frozen orange juice pops.  Trust me, there's days we have popsicles with breakfast and lunch!

Outside Fun with the Boys

August 29th
It's so crazy to see how active both boys are in the back yard.  They just love running around...

and getting into trouble!

Yeah, William has been independently climbing the ladder of the playset for over a month now. I tell ya, this boy is half dare devil and half brute!
The result when big brother zips the tent, leaving little brother out!  And so begins the rivarly.
Nicholas being silly, while Will scores another stunt.

My boys!

I love those busy toes!

Saturday, August 28, 2010

Airport fun with Aunt Elaine

August 23, 2010

We just love it when Aunt Elaine comes over on Mondays!  This week, we took a pretend vacation to the playset and flight display at the airport!  William loved his repeated trips down the slide.

He also loved people-watching from behind bars.  I think he was trying to figure out why everyone was pulling big boxes on wheels.
The displays were great!  The kiddos took turns driving the cargo cart - and paused for a 'cheese!'
Afterwards, Nicholas told me his favorite part was "driving the airplane like Dillon's grandpa Ryan."
~ Captain Nicholas ~
He's been wearing his airplane slippers to bed every night since...

My Happiness Reminder

"Happiness is like manna;
it is to be gathered in grains and enjoyed every day. 
It will not keep; it cannot be accumulated;
nor have we got to go out of ourselves
or into remote placed to gather it,
since it is rained down from heaven, at our very doors."

~ Tyrone Edwards ~


August 22, 2010
I love these captures of William.  They remind me that despite all he continues to deal with, he is truly a 15-month old through and through.  With his healing shiner on his forehead from falling into the edge of the cupboard, to the snot from throwing one good tantrum after I prevented him from climbing on top of the kiddie table and right down to the finger in his mouth from teething....

he is one amazing boy!
Uh-huh....there's that look he makes when he's about ready to do something he knows he's not supposed to.
Can you tell what's on his mind?

Thursday, August 12, 2010

A Milestone & A Rather Tight Situation for William

As I rocked William to sleep this afternoon, I realized we've hit somewhat of a milestone, at least one in our book. Its been nearly 2 1/2 months since William has been hospitalized or even visited the ER for that matter. We've enjoyed relatively good health for the past 2 months, ever since William cleared his central line infection in mid-June. When I think about it, we've had very few doctor's appointments, no major threats or alarms, only about a month of obscure symptoms including being very cranky, clingy and excessively pale. William has had weekly bloodwork to check for anything obvious that could possibly attribute to these symptoms, but nothing has shown up. Good news, I know.

We've also thoroughly enjoyed a summer filled with Grammy's company on Tuesdays and Thursdays (and sometimes even an extra afternoon or two). This has enabled us to attempt many more fun activities out of the house, given me the opportunity to run errands and be out without kiddos in tow, taken off the burden of finding childcare for Nicholas when William has appointments and above all else, has provided me a tremendous amount of support from a Grammy who so desperately wants to take all my problems away, at least for a couple days of the week.

As much as this is a huge accomplishment considering what we have been through, I have to admit, it is still rather tough to get through the days here. Its like we're in this limbo state of 'we've beaten do you move on with all this baggage we still have going on?' Not only it is tough to know how to emotionally move forward, things are still exceptionally busy and all-encompassing to meet William's daily needs.

A big component is the fact that William is yet to sleep through the night. He never met that milestone of self-soothing. This means our dear William is rocked to sleep every time he goes to bedtime and for all naps. A lot of this has to deal with the fact that ever since he was 9 months old, he's been attached to an IV line every night. This provides tremendous fear for us to have him awake, upset and unsupervised with this line accessed. Let's face it, if William pulls on his line, if it gets wrapped around the end of his crib or a blanket it could mean a major problem. This line is attached to his superior vena cava leading directly to his heart - he could literally bleed to death within minutes if this line gets pulled out. A little scary, hun?

William wakes once or twice a night, other nights 3-4 times...guaranteed.  In addition to him waking up crying, there's many times a week that his IV pump alarms...making an obnoxious beeping noise until it is attended to.  This happens if William occludes the tubing in some fashion or if there is air in the line.  Some nights it seems like you have everything in its proper place and the darn thing still alarms multiple times.  Then there's the nights, like last night, William woke an hour after being put down and then again at 3am. Apparently, he thought he had slept enough by then and was ready to be up....yes, up at 3am. After an hour of rocking and singing to him, he settled down but stirred at every attempt to ever-so gently place him back in his crib. By 4:15am and four attempts at putting him down, I was feeling it. I tried to bring him (and his IV pump backpack) into the guest room to at least get to be horizontal for a little. William wanted nothing to do with that choice plan. A few minutes later we were back to our glider chair in his bedroom. Thankfully, William ended up falling asleep as long as he was laying on me... and so we slept until 6:45am, in the chair.

Once awake, the roller coaster of a day begins.

William has to be de-undergarmented: taking off his fully-saturated size 7 overnight diaper with 2 soaked Depends Boost inserts inside. The thing weights a couple pounds, at least.

Despite our best efforts for leak-proofing, every morning William is wet through to some degree. He gets a mini bath with baby wipes, a full change of clothes and nearly always a new set of linens for his crib.

By 7:15am, his 12-run of TPN is complete. That line gets flushed with saline and heparin-locked...all maintaining a sterile field when doing this attached to a short line on an active 14 month old. The opposite lumen of his central line needs to be sterilized, flushes and started for William's 4-hours of hydration and half hour of penicillin infusion. Gotta have another sterile field, too!

From there, our days are filled with changing William's many, many poopy diapers a day (which are especially eventful in the mornings, often three by 10am, usually requiring a full change of clothing once a day). All morning, its a dancing game of backpack on... backpack off. Backpack on while I shower and get ready for the day, backpack off to get in the highchair for a little oral play with frozen teethers (and an often failed attempt at trying to have William accept something, anything, by mouth). The entire 4 hours William has his pack on, you have to keep a close eye on him to ensure his lines are not getting tugged out, wrapped around his foot, a knee or a toy for that matter.

With William's latest endeavor of learning to walk there are many crashes, bumps and times he needs comforting throughout the average day. He also has a major obsession with the stairs....oh, the stairs. Hence the gate...which causes the tantrums at the gate!

By noon, William's hydration infusion is complete and needs to be sterilized, flushed and hep-locked. William continues to struggle with consistent napping. On average, he takes one 1-1 1/2 hour nap mid-day (usually between noon and 2pm). I try to coordinate Nicholas' lunchtime with when I will put William down for a nap. Nicholas eats lunch while enjoying an episode of Wonder Pets, all while I countdown my minutes to rock William and hopefully place him uninterrupted and comfortably in his crib. It's a far cry of how I'd expect to spend lunchtime with my two boys - but it seems to be the only way for us to meet everyone's needs at this point.

Thankfully, Nicholas still naps most days. A day is considered a big success when I have maybe 20 minutes to a half hour when both kids are napping. Once William is awake, I have him to entertain and keep safe while I'm a madwoman working on regular household upkeep, documenting William's medical needs and all contact with providers, making phone calls regarding insurance issues, doctor's appointment, emailing/faxing doctors, etc, etc, etc. Everyday there is a things to do list...and everyday, it remains unfinished.

By dinnertime, William is exhausted. We have a tough time just making it through dinner without a major meltdown. Most nights, the extreme fussiness begins around 5:30pm. Dinner is considered a success if William can be kept content in his highchair for half the meal - the latter half is nearly always spent on my lap. From there, its a rush to prepare his TPN and hydration pack for the following day (takes about a half hour), get him accessed to start the TPN infusion (oh, that lovely sterile field again, only this time on a cranky, over-tired wiggle worm), fully undergarmented, PJ'ed and once again, rocked to sleep.

Back downstairs, Nicholas needs to be attended to and on to the battle of bedtime.

Just because we have all this stuff going on with William does not make us immune to the challenges of life with a 3-year old. Sure, we have those days when big brother decides he doesn't really want the Kix cereal he chose, so he decides, like any 3-year-old would, to toss his bowl on the floor (except this one was glass, so it shattered all over the floor). We also have those days that are mixed with battles over turning off the tv, when to use the toilet, staying out of the garage, arguing over cleaning up one's toys, the random shove to little brother or grabbing away a toy, uncooperating with whatever...oh, and the worst of all, the naptime battle.  Oh, and if anyone knows Nicholas, they know the kid NEVER STOPS TALKING and moving!  He loves attention and is always yapping about something!

Over everything else, the juggling of daily management issues, the impact of our recent life changes on Nicholas and our family, the awkwardness of being out in public and people noticing William's central line, my personal exhaustion....on and on, I have to say it is most difficult to see William and not be able to make things better for him. As a mother, you naturally want to take away the pains, struggles, worries and just make things better for your babies. I want William to move past this, to just be free to be a play without a heavy tote on his back, to want to eat with us as a family, to sleep freely and comfortably and to no longer have to be poked, prodded and invaded by doctor after doctor.

I look forward to the day that things are different.

The day I will read this entry and remember how it once a distant past.

As I approach turning 34 tomorrow, I can only wish to have a year that bring peace to my family, myself and my dear, sweet William.


And so, to end on a lighter note...
I have a little trick I use with William for those days when, well... you just need a few tricks up your sleeve to get through the afternoon. I give him our biggest pot with about an inch of water in it, a few kitchen utensils and let him splash away. Well this week, a little splashing was not enough for "The Bruit" -
he went in all the way!


He was so content squeezed (and I mean squeezed) in there, clapped his hands when I asked him what he was doing...and oh so proud of himself.

Wednesday, August 11, 2010

We love the rain!

During a walk around the circle, we heard a clap of thunder off in the distance.  Nicholas exclaimed, "oh, let's go back home and get out our camp chairs to watch the storm in the garage!"  Seriously, who could turn down that plan!  We made it back just in time...
The boys relaxed with a drink and frozen teether...watching the rain.

William climed out of his chair and went directly to where he wanted.  He will do anything to get to wet...

He was so upset to be removed from the driveway.  So precious!

Sunday, August 8, 2010

The Best Weekend!

August 6th - 8th, 2010
With Daddy working in Watkins Glen for the NASCAR race, Grammy and Poppie graciously moved in for the weekend to help us out...and boy did we have a fun time together!  Friday night we enjoyed going out for ice cream and running some errands while Poppie tucked William in early.  Saturday, the boys snacked on some Doritos...yes, even William clenched on to a chip.
We took Poppie out for a round of mini golf for his belated Father's Day gift. 
(We all let him win as part of his present too.) 
William did remarkably well staying content in  his stroller through half of the game.  He loved watching all the water features at the course.
Out of the blue, Nicholas impressed us all with his putting skills! He legitimately got a few holes of near-pars!
Of course, his favorite hole was this water hazard.  He'd purposely putt his ball in it, only to have to fish it out.
William has not been this interested in food in months!

Sunday morning, the crew surprised me with breakfast in bed!  Not only did Grammy insist on waking with William throughout the nights and in the mornings, I got to sleep in AND eat in bed! 

Nicholas was so cute.  He kept repeating, "Happy early valentine birthday, Mommy!"
Tonight when I go to sleep in my bed with scattered sugar crystals, smelling of sticky Nicholas fingers soaked in syrup and spilled orange juice, I will forever cherish this weekend.  We had such a nice time, the kids seemed to enjoy all the time with their grandparents and I got a whole lot of pampering.  I just hope Grammy and Poppie recover from this one! 
Thanks Grammy and Poppie (aka Beep, Beep)....we love you!

Hangin with the Animals

August 3, 2010
With Nicholas enjoying a couple days with Great Aunt Susie and Uncle Charlie, we joined the HEMOG kids for an adventure at the zoo.  Our friends Kristin and Cooper, as well as Grammy joined us too.  William giggled at the penguins' antics and followed them intently with his pointer finger.  He even snorted when we were at the stinky penguin exhibit - this boy has a nose just like his Mama!
Clearly his favorite exhibit was the baby elephant statue.  William just thought this was a perfect friend for him.
He'd pat the elephant, tickle its ears and threw his leg over to hop on for a ride.

 Hey William, where is elephant's nose?
~ silly boy! ~

That's better!

Checking out the real elephants with Grammy.
All in all, it was a nice morning, despite the heat.  From there, we were off to spend the afternoon at doctor's appointments.  Oh, if only we could have hid in the monkey exhibit for the day!

Thursday, August 5, 2010

Proud As Can Be

I know all toddlers become infatuated with the stairs, but let me tell you, William could spend all day on them!  He was getting pretty good with turning around to go down backwards, but now his big thing is to step down and sit at the top of the stairs...
and just beam with pride for his latest dare devil feat!

Sunday, August 1, 2010

The Giant Sunflower Maze

This morning, the boys and I headed off to discover the sunflower maze that we've heard so much about.  It sure lived up to our expectations and was a perfect morning adventure!
All the way there, Nicholas was insistent the sunflowers would not be taller than him.  He was rather surprised to realize just how big they were...even taller than Mommy!

My little park ranger was concerned a sunflower was missing some petals.  He just notices everything.

Boy on a mission!
This maze reminded Nicholas of an episode of Curious George where George is in the Great Maze Race.  On the show, each set of contestants used their own strategy, some just running through as fast as they could, others with a map and one group with a GPS device (not like I watch the show - haha).  Nicholas pretended to use each form of guidance.  We came across a couple of chairs just as Nicholas' pretend GPS device ran out of battery power.  He tried to fix it, but to no avail.

Finally, back on track, this time with a 'map.'
As I was taking pictures, Nicholas said to me, "I'm just going to keep myself busy over here digging in the dirt to check on the sunflower plants roots."  10 minutes later, with 2 very dirty hands, we were all able to move on.

William was with us too, of course.  He stayed content in the backpack carrier, grabbing at any sunflowers he could possibly reach.  He was still on his hydration IV, (which was dangling from the backpack carrier attached to me) so it was nice to limit our possibility of another huge tangle of tubing that always seems to happen when we are in and out of the backpack.  Thanks buddy for cooperating!