31 July 2011

Pooh on the big screen

I wish I had had my camera last night.

It was too dark. But I took the picture with my brain and hope I'll never forget.

Bennett's first movie.

The little guy sat propped up in those over sized movie theater chairs (you know, the automatic folding kind that if not careful could, very well, eat your child right up in them).  I put the diaper bag behind him to assure the seat would not digest him completely.

The blue reflection from the gigantic screen shown on his face, defining an outline of his tshirt and shorts, and of the little wooden Thomas the Train toy which stayed clenched tightly in his hand the entire time.  Faintly, I could see the glow from his feeding pump tucked inside his tiny backpack, the backpack in which he wore because, inevitably, if we do anything of any substance outside of the house, we're forced to miss a scheduled feeding.

I wish that I could have saved this moment for forever.  My youngest is becoming a big boy.

At first, Bennett sat watching the movie "Winnie-the-Pooh" without any real movement.  He was transfixed by the experience.  Something so large and magical was happening on the screen before him.  This was something he had never done before. 

Then, something funny happened and he laughed. 

Then, he saw the bees and began to buzz, since he knows what bees say.  Eventually, he was pointing to everything and making sure both mom and dad nodded back in reply.

Not long after that, he wanted in my lap.  To sit backwards.  To watch the people behind us.  To point out my eyes, my nose, my hair.  After 40 good minutes, I knew it was my cue to take our exit.  Off we went to the lobby for the remaining 40 minutes of the movie.

But it was good while it lasted...the chance to savor the sweetness that comes from watching a child grow up.  These are the moments when I wish time stood still, if even for a moment.  I'm so blessed to get to experience this. 

30 July 2011

A Visit with Bennett's Godparents

We were delighted to enjoy several days with our best friends and Bennett's godparents this week.  Emily and Matt have been friends of ours since college.  We were married during the same summer and lived in the same apartment complex that first year.  Emily and Matt have finished up living in LA for several years and are now moving back to Missouri.  On their way from L.A. to Missouri, they decided to take a detour and visit us!

While Matt and Emily were here, we took them to a local National Night Out event.  (The boys oblige mom for a stand-by-the-firetruck picture.  Clearly, they were thrilled.) 

Brian and I seriously love this event as it's a free community event, especially for families.  The first year we did it, I was pregnant with Bennett.  The second year we did it, I was simultaneously tube-feeding Bennett.  This year, he was a ever-so-normal little boy!

I love how Emily took a picture of what I was doing during most the event: taking pictures.
Each year, all four of us look forward to watching the helicopter fly in. 

This year, Oliver really enjoyed looking inside the helicopter.

Daddy always enjoys the combat police booth.

The one thing we appreciate most about this event is the amount of free water and cold sodas given out.  This event is held every July and it's hot.  This year, it was so hot the tar was melting in the parking lot as we walked around the booths.

Bennett really enjoyed the event, particularly all of the free goodies he went home with.  In our little sleepy town, it's awfully fun to attend this annual event.

Each night, while Matt and Emily were here, and after the kids went to bed, we always pulled out our favorite trusty game, "The Bean Game."  This was our favorite game to play when we all lived post-college in Missouri.  And still, Matt and Emily, are our favorite partners to play with.

It brings out our competitiveness...

but it's guaranteed to bring out silliness.

Since Matt and Emily were willing to just come to hang out during a "day in the life" with the Gamels, Emily found herself helping us out in a pinch and watching Bennett during Oliver's play therapy appointment.

This is proof that Bennett had fun with her.

Who doesn't love iphone camera kisses?  We love you, Matt and Emily!  Welcome back to living in the Central Time Zone!

29 July 2011

Indoors and Offline

A few days ago, I had the feeling it was freezing cold outside.  I was in my pajamas, ready to snuggle in bed, wanting to curl up in a warm blanket.  I briefly dreamed of going outside, even if it meant getting bundled up and seeing nothing more than crisp hibernating plants bending to the cool winter breeze.

...until I realized all of this was true, except, instead of 36 degrees outside, it was 106 degrees.  It's wild how Texas summers (and really for many people across the states these days) are a bit like winters.  Either way, we're indoors and longing to enjoy the outdoors soon.

Thankfully, we haven't been couped up all that much, especially not due to any colds or respiratory viruses.  This week, our best friends (and Bennett's godparents) have come to visit us.  So, we have spent much time enjoying them and reminding ourselves while they are our best friends in the first place.

Bennett doesn't understand much about their visit.  But Oliver is just beginning to understand what it means to be or have a friend.  He seems to get that there are special people in life that one especially enjoys.  It is fun to be able to watch him develop little friendships, and it's fun for him to see Mom and Dad have special friendships too.

Bennett's day looks the same almost every day.  We are keeping him on his schedule fairly well.  Oliver has spent these past mornings at a local Vacation Bible School program, which he has loved.  We have seen his self confidence and overall emotional balance improve dramatically, especially coinciding with outside activities such as Mother's Day Out and karate.

All of the hustle and bustle, of rekindling friendships, teaching Oliver how to make new friends at Vacation Bible School, staying cool indoors and keeping Bennett on his feeding/treatment schedule has kept me offline recently.  And I like that.  There are moments in life when it just makes sense to unplug and be present in life.  I'm enjoying doing just that.

To unplug doesn't mean to disappear.  I think, sometimes, it means to actually appear. 

26 July 2011

Our silly monkey.

It's TOO HOT to go outside these days. So, we spend much of the time indoors. The kids mainly play with cars. Oliver is enjoying Vacation Bible School this week while Bennett stays on schedule at home. The pictures I have of them are few since we aren't doing anything out of the ordinary.   I'm already fantasizing about fall and the excitement of being outdoors again.  (By the way, this is day 25 of straight three digit weather in Texas.)

So, since my pictures are few, I thought I'd put up a cute video I took of Bennett a few weeks ago at the Baseball game. He was playing with the little hat that ballpark ice cream comes from. I decided to get a video of him just being himself and I happened upon a pretty impressive moment for a 21 month old.  He reminds me of a little show monkey in this video. :)

25 July 2011

Giving In

I have begun the process of surrendering. 

Until recently, life has felt like a monster, eating at me, nibbling pieces of me little by little.  I have been unhappy, frustrated, exhausted.  I felt bogged down - weighed down - as though every step I take is like moving a 100lb weight strapped to me.   

But I've felt conflicted.  I work so hard, trying to change the course of my experience.  At times, I gain traction.  Other times, I find myself stumbling over my efforts, even losing my grip, hitting the ground harder and harder each time.  This has caused me to feel trapped, unable to get out.  Unable to see how life will ever be different.

A few weeks ago, tired of this all, I just had to turn around.  My eyes glaring.  I looked this ugly no-good monster in the face, defiantly threw my hands up and said, "OK! I give up!  I'm not fighting you anymore.  I give in!"

As so, I did.  I began the process of accepting this is where I am, right now.  This is my life.  This is what I have been called to do.  This is the place where God has placed me.  Like it or not, want it or not, chosen or not, this is where I am.  And there is no point fighting it anymore.

I am a mother with a g-tube fed toddler with a very serious and time-consuming chronic life-threatening illness, a preschool son with minor needs and a husband in a very demanding school program. 

These three things alone affect our family's daily life in significant ways.  We move about our life according to these factors.  Sometimes, these things are assets, but many more times, they feel like liabilities.

But, I realized several months ago that instead of fighting where I am, I am going to accept it.  I am not only going to just accept it, I am going to embrace it.

Oliver's issues have and will improve.  The needs of young children will not always be so demanding.  Brian's schooling will eventually come to an end.  But the one thing about Cystic Fibrosis is there is no point in envisioning life will be much different.  CF is here to stay. 

Our life will change from time to time.  The disease will be more and less manageable at certain points.  But, all in all, there will be no life without Cystic Fibrosis.  CF is and now will forever be a part of our lives.

Treatments will always get in the way of other things.  Schedules will always be necessary.  Hospitalizations are only a matter of time.  Difficult transitions will be as common as the kitchen fridge. 

In the midst of my fatigue of fighting and despair, I sense frustration.  It's as though I have been living my life only in hopes to move to another part of my life.  Why, I have wondered, am I refusing to embrace this part of my life as though the next part of my life is going to be easier or more enjoyable? 

Tomorrow is not guaranteed.  And tomorrow is certainly not guaranteed to be better.  All I have is the here and now.  And so I can either fight against it, or go with it.  Surrendering is my only choice unless I want to keep wasting my time fighting myself. 

So, a few months ago, I decided to refocus my life.  I began asking myself deeper questions such as "What matters in my life most?" "What does God expect and want from me?" "What makes me feel fulfilled?" 

I was suprised to see a pattern emerge.  My responses to these questions have been that God wants me to be fully alive.  And I feel most fulfilled and fully alive being a good mother, a loving wife, a compassionate friend and by following my passions.  What matters in my life most are the people who are in it, especially my husband and my sweet sons, all who need me.

Why, I've wondered, have I not been experiencing life this way?  Why am I, in my heart of hearts, begrudging and bitter to the place God has called me?  Why am I kicking and screaming, wanting something different but being unable to see the blessings put right in front of me?

Really, I didn't know I was fighting.  In fact, this bitterness, anger and frustration within me has been like the nasty bacteria which is beginning to gather deep deep within the pathways of Bennett's lungs, nestling down with all intentions to stay awhile. There have been feelings deep within me that I have not recognized until I began surrendering.

As I stopped wanting something different, I began noticing I'm happy where I am.  When I stopped being frustrated over feeling trapped, I began not feeling trapped at all.  When I started to embrace that change will be consistent in our lives, I found I actually looked forward to change.

It's funny how we're made with a fight or flight response.  Why, oh why, am I trying to fight and flee from myself??  What I've got here is very very good.

23 July 2011

Mad Hatter Tea Party

:::EDIT: Now that things are starting to slow down here (just in time for them to ramp up for school to begin next month - ugh), I have begun trying to finish projects I had to put down before Bennett's admission to the Feeding Clinic.  One of those projects is updating pictures on our CF Walk blog.  One of the cutest activities at this year's Waco Cystic Fibrosis Walk was the Mad Hatter Tea Party for kids.  I wanted to document these pictures on Bennett's blog as well.:::

One of the most popular activities and fundraiser that went on during this year's CF Walk was the Mad Hatter's Tea Party. Not only did the kids love it but the parents did as well. The Mad Hatter's Tea Party was donated for free by Simply Events. Parents paid $10 to reserve their children a seat at the table.  And all proceeds went to the CF Walk.  I cannot thank Sandra from Simply Events for all of the work she put into this event (as well as the volunteer and Baylor Theatre Student Charles Easterly, who was the Mad Hatter, and Sandra's sister, who was Alice, who made this happen)!

21 July 2011

Swallow Study Pictures

I took a few pictures of Bennett during his Swallow Study this week.  I also went back and found some from his last Swallow Study.   I'm struck by how big he is now in comparison to his last study when he was two months old:  

Bennett, 2 months old, November 17, 2009

Cook Children's Hospital

Little guy had no idea what was going on.  Such big machines and baby is so tiny!

Bennett, 21 months old, July 19, 2011. 
Gosh, Bennett is looking so almost-two-year-old-ish.  He is wearing his hospital bracelet for the procedure since we technically have to be admitted to the hospital for things like this.   He is sporting two Thomas the Train stickers, one on each hand.  And he's got his paci...the paci that we use only for bedtime and special scary situations like the hospital.  His pacifer was the biggest reward he received for eating his bites!  He'll do anything for a suck on that thing!

Bennett has a little barium left over on his lips.  And we had to use a towel because I failed to remember to bring a bib with me and barium can be difficult to get out of clothes.  Bennett's left hand is ready and waiting for his sticker. 

Your insides, Bennett, are lookin' mighty fine!

20 July 2011

Results of the Swallow Study

Well, we now have proof.  Our little guy is a champ at swallowing.  Any refusals or coughing after fluids is due to a learned behavior, not due to pain.

Bennett did a *fabulous* job during the swallow study this morning.   The study consisted of Bennett sitting in a special seat near the Xray machine and my feeding him several familiar food textures mixed with barium.

Since we feed Bennett using a special protocol, it was super easy for me to get Bennett to eat in an unfamiliar situation.  It was like I was able to almost charm him to eat.  I found myself incredibly patient during a very stressful situation (something I'm used to since I've been trained to not be excitable, even during refusals). 

I just put the spoon in front of him, fully confident that one way or the other he would eventually eat (he always does).  He began to cry, fearful of the surroundings and of the people standing around.  But I comforted him and refocused him with a reward for eating.  (I had forgotten to bring any toys with me but I remembered, from previous visits to the Radiology Department, that, thankfully, the staff had a plethora stickers.) 

It took just a few Thomas the Train stickers to get Bennett to eat up.  I offered him chocolate milk with Carnation Instant Breakfast (what he normally drinks) and water - each separately mixed with barium.  Then, I offered him pureed Mac and Cheese with barium.  Lastly, I gave him a bite of a Nutrigrain bar with barium spread across it like peanut butter.  I'm pretty sure (although not fully sure) that barium is nasty.  So, I was quite impressed he ate so well.  Barium looks a bit like office White-Out.  It makes your lips look like you've just enjoyed a big bottle of White-Out...and it comes out the other side decorating your poo in all white, as well.

Nonetheless, Bennett's cooperation gave us excellent results, results we can be confident in.  In the room with us was a Radiologist, a Radiology Tech and a Speech Therapist.  It was the Radiologist who was able to confirm our results.  But it was the speech therapist who explained to me what happened.  Basically, she explained that his swallows looked absolutely normal and nothing seemed even a bit concerning (although she did find his 5ml sips to be SO LITTLE!).

After our Swallow Study appointment, we ran by the Pediatrician's office to get our weekly check on Bennett's weight.  It turns out he weighs 26lbs, 8oz up from 25lbs, 10oz from two weeks ago, which is good. 

So, good news all around.  I'm really happy we don't have to stress out about the drinking thing.  Now, we know with confidence he just has to learn how to drink more at a time.  We will continue to encourage his drinking between meals and offer Chocolate Milk with Carnation Instant Breakfast every 4 bites during his feeding protocol.    Little guy isn't getting out of drinking anymore any time soon!

18 July 2011

Swallow Study Tomorrow

Tomorrow morning, Bennett will take his swallow study. This is the second one he's taken but his first one in quite a while. I imagine that, like the one before, it will show there are no swallowing problems (aspiration or penetration). But, we do need to make sure nothing is going on.

Bennett's ability to drink and interest in drinking is far below what it should be for his age. We work diligently daily to get him to drink 5ml at a time. For a while, we almost quit drinking completely. Lately, he has begun to drink much more frequently. But it is still not enough based on what he both could do and needs to do to keep his weight up.

Here is the video of his first swallow study.

I doubt I will be able to capture tomorrow's swallow study on camera as my first priority will be calming what I expect will be quite frightened little boy tomorrow morning.  But, either way, I look forward to reporting the results of the study.  We will have a speech therapist at the Swallow Study (X-ray) so we should be able to understand what is going on pretty quickly. 

I'm hoping for good results - whether it reveals something or not! 

A Visit To the Zoo

Here are pictures of the boys at the Zoo with Nana and Papa...

Checking out the monkey.

Feeding the fish (and swans).

The boys really loved this.

Feeding the goats at the Children's Zoo.  Bennett wasn't really thrilled to have the goats lick his hand.

Who wouldn't love having this fact staring at you wanting your food?  (Honestly, until I spent some time feeding them, I never realized how ugly goats really are.  I'm just sayin'.)

Oliver is a champ at feeding these animals.

Bennett is a Daddy's boy.  He loves Daddy and seeks his attention and approval often.  Bennett will event let go of my hand and hold Daddy's hand instead, whenever it's an option. 

This day, he wanted to ride in the double stroller AND hold Daddy's hand.  Daddy loves it.  :)

We really enjoyed our week with Nana and Papa.  The kids *especially* loved it as Nana and Papa took them to about every kid place in the city!  We are so thankful for such loving grandparents to the boys.  We look forward to seeing Nana and Papa again soon!