30 December 2010

Santa's Visit

Santa came to visit our house a few days before we left for Nana and Papa's house.

This is what Santa brought Bennett for Christmas: a book about Tigers, a red ball and a new stool with his name on it (thanks to my friend, Julie).  He didn't wrap Bennett's gifts since Bennett doesn't understand Santa yet. 

This is what Santa brought Oliver.  At our house, Santa fills a stocking and brings three gifts per child (3 gifts, because that's the number the wisemen brought - and because it's our attempt to minimize a focus on consumption at Christmas).

This was Oliver's first year to "get" Santa.  Oliver opens his gifts.

Bennett found another ball in his stocking.

Oliver's favorite gift, a wooden race car ramp.

Bennett happily plays with his favorite toys, a new toy car and his ball.

Oliver was very happy to see Santa brought him gifts.   What a fun time of the year where gifts magically appear for no reason!   We look forward to when Bennett can also appreciate the "magic" of Santa Claus!

29 December 2010

Love and War

"We are created to love and be loved. And there is no greater context, no better opportunity to really love someone and be loved by that person throughout an entire lifetime than you will find in marriage. Of course, it is dangerous as well - the two always go together. There is no greater place for damage, too, because there is no greater place for glory. God uses marriage to bring us the possibility to the deepest joys in life. Satan tries to use it for destruction." (a quote from John Eldredge, Love and War Devotional for Couples*)

It's amazing how quickly a wonderful day together, Brian and me, can get so turned around. It's so easy for one person, under stress, to snap at the other. And then how easy it is for the other person to snap back out of hurt. Next thing you know, we're both highly unhappy...and how we got that way in that moment, we aren't even sure.

I remember very vividly the imagery Brian once shared with me as we were getting to know each other during our first year of marriage. It was after a big fight we had (probably over something stupid like the laundry). He said, "you know, we need to remember that we are walking around with big knives that could pierce each other in an instant. Now that we know each other more deeply, we are vulnerable to each other. We know each other's strengths and weaknesses.  Because of this, it takes no more than a few words to crush each other with our tongues."

I still remember that idea to this day - 6 years later - because he's right. I know how to wound him fast. And I'm good at it. And he knows how to do the same to me.

Having two little ones (especially a child with special needs) can be very stressful.  And like with anything, stress can cause breaks and fractures in a foundation.

Brian and I continue to monitor our marriage throughout our newest adventure of our second son having CF. We have been to counseling to help us cope. We have built up an accountability system - people in our lives whom we can talk to about how we are doing. We have tried some fun tricks to help us keep each other in the forefronts of our minds.

But one of the most helpful things for us, so far, has been simply uninterrupted time together (regular date nights) and reminding ourselves of what we ultimately want.

It is often that we say to each other during a disagreement or fight, "we're on the same team, you know. Ultimately, I want what you want." It is our way of refocusing ourselves from fighting with each other to fighting for each other.

"We're not playing house - we're living in an epic love story set in the midst of a terrible war." (a quote from John Eldredge)

It's a fight to stay married - to stay connected to each other - to stay in love.  Brian is fighting. I am fighting. We will continue to fight for each other each and every day. But it can become wearisome at times.

Nonetheless, love is not a one-time decision.  I have to renew my wedding vow every day.

I love my husband. 
And I will choose to act like it again today. 
1 Peter 5:8-9

 *a complimentary copy of this book was given by Waterbrook Press for an honest review. Which, by the way, I highly recommend this book. It offers some wonderful insights into why we marry, what God is doing through marriage and how to appreciate the process that it is.   It is an inspiring book that has reminded me that my love and commitment to Brian is a part of something larger than itself.

Wrapped Up In The Cord

Bennett regularly gets "wrapped up in his cord" at night.  Actually, he gets wrapped up in his feeding bag tubing.  It's often hard to get a picture of it but we were able to this time.  Bennett sleeps in a pack and play at Nana and Papa's house.

Doesn't look too bad, right?  Maybe just around his neck...

Um, no, it's pretty bad.  Wrapped a couple of times.

The doctor says she's never ever heard of anybody being suffocated with their feeding tube tubing.  And our extensive research online shows us of no stories of a child dying because of this.  But it is still very frightening to see.  Ultimately, we have to consider which is likely to hurt him first - the tubing or his not getting enough calories.  Either way, it's a risk we must take when we feed him at night.

We are considering moving him to a big boy bed.  But we struggle with how that might work with this issue of getting caught in the tubing.  At least, at this point, should he pull his IV pole over, the crib (or in this case, the pack and play) catches it from hitting him in the head.  For now, we just keep a very close eye on him while he is sleeping.

28 December 2010

C.Diff. Diapers and Red Lobster

One of our many adventures in Missouri for Christmas this year started with a much anticipated dinner with the entire family - Nana, Papa, Aunt Blair (Brian's sister who lives out of state), Uncle David (married to Blair) and our little family of four - at Red Lobster.

Brian and I always joke with friends and family who sit down with us to dinner at a restaurant that eating out with us (Brian, myself, a preschooler and a toddler) is always a risk...

There's a fifty percent chance it's going to be a fabulously peaceful dinner where our beautiful children sit down for the entire meal playing quietly at their seats patiently waiting for us to finish our adult conversations.

There's a fifty percent chance it's going to be rough experience where we'll be lucky to make it through the meal without having to leave the restaurant first.  Despite our best efforts, children's behavior cannot always be predicted.

It was always been sort of a joke.
Until this time...

Just as they brought my favorite Red Lobster cheese rolls and Diet Coke to the table, Brian indicated he spelled an odor...from Bennett's behind.

So, I politely excused myself as I gathered up a few things from the diaper bag - a diaper, the changing pad and the wipes.  I'll be back in a few minutes, I thought.

I changed Bennett's diaper in the bathroom.  Whew-ee! It was a bad diaper - a C.Diff. diaper!  Think of the worst smell in the world and that's what comes out of Bennett when he's got C.Diff. in his stool.

Nonetheless, I changed it and was back to the table within ten minutes.

Brian and Oliver returned back to the table shortly after.  Apparently, Oliver, distraught that I left the table (part of his separation anxiety), needed to be shown by Daddy where Mommy had gone with Bennett into the bathroom.

Now, we were all sitting down eating again - the eight of us.  Peace.

...but within a few minutes - enough time for me to watch my meal placed before me at the table - Bennett had pooped again.  Those C.Diff. diapers are the worst!  And sometimes, they are so loose that they just keep coming!

I realized this was just not going to be my night.  That's ok, I thought, at least the rest of the family can enjoy their meal.  

Once again, I retrieved my items - including the stinky baby - and left for the bathroom.

I pulled the cream-colored plastic changing table down from the bathroom wall again, laid Bennett down onto the changing pad again, pulled his little blue shoes and pants off again...

...oh my gosh...oh my gosh...oh my gosh...

It was  Poop.  All around his diaper.  All down his leg.  All inside his pants. 

And what's worst?  Alone in the bathroom, I had left only one more wipe!

I knew I was in big trouble.  How can I get more wipes?  How am I going to put these soiled pants back on this baby and return to the table?  Am I going to have carry my near naked baby covered poop (that smells like something up and died) pass by all these poor unsuspecting people eating their evening meal?

I called out to a little old woman who walked in the bathroom, "Mam, can you please go find someone who works here?  Can you ask them to help me?  Look for anybody in a white button up shirt."

She could see my predicament and found someone quickly.  The poor Red Lobster worker came in so sweetly and listened to my plea: "Can you please go to my table - large one in the second section over there to the right - and ask my mother-in-law or sister-in-law to bring me the diaper bag as soon as possible?"

Within minutes, my mother-in-law rushed through the swinging door like my superhero holding the diaper bag and another case of wipes.

I began my clean up work (with her assistance) while having to explain that dinner for Brian, me and the boys was done.  I had forgotten to bring Bennett extra clothes and his little pants were not salvageable.  We both knew it was too cold to have Bennett return to the table in just a diaper.

I asked if she would inform Brian and have him meet me in the lobby (he and Oliver had to come home with me since Oliver's carseat was in the car too).  Nana (my mother-in-law) indicated she would and would also box up our food and bring it home to us when they were done with their meal.

I finished cleaning up Bennett and took him from the bathroom.  We chose to sit on a bench near the bathroom waiting for Brian to come with Oliver so we could go to the car.

My meal was over before it had even started.  The entire family's meal was ultimately disrupted.  It was very disappointing and I was hungry. 

I could have cried from the stress of the whole thing.

But I didn't.

...because who can cry when this sweet little half-naked thing begins to dance on the bench while waiting with me:

Completely oblivious to how he smelled or who he was inconveniencing, this 15 month old had a new diaper and was ha-ppy!

Life is too short to worry about things you can't control.  This was just part of the beautiful chaos of having children.

Brian came out from the restaurant caring poor Oliver, who was crying throughout the restaurant, distraught that we had to leave early.

It was a meal I didn't eat...but won't soon forget.

(Another thing I won't soon forget is an extra change of clothes! Geesh!!)

26 December 2010

Traveling for the Holidays

This Christmas, we traveled to Brian's family in Missouri.  That meant a plane ride with two little ones and all of our stuff.

This is a picture of only the stuff we did not check (which included three suitcases).

This is just Bennett's Cystic Fibrosis stuff - his medication (in the black bag) and his Vest (in the blue bag).  It's so fabulous not to have to pay $25 per bag for this stuff!  These bags are considered necessary for Bennett's special need.  So, we get all medications on the plane for free!

Bennett really enjoyed pushing the stroller in the airport.

Oliver helps Daddy pull the luggage.

Oliver runs to see Nana and Papa!

 Nana is so happy to see her grandsons!!

It's so wonderful to be here!  We haven't seen Nana and Papa for nearly nine months!

"Well, Hello, Bennett!"

Oliver takes a ride to the car on Papa's scooter.  How nice that the reinforcements are here...a true Christmas vacation for Mom and Dad!

25 December 2010

Christmas Family Picture 2010

Merry Christmas from the Gamel Family!

Gamel Family 2010 (Oliver, 3 years old and Bennett, 1 year old)
(Well, out of the 20 pictures we took, this turned out to be the best one. Poor Oliver did not want to have anything to do with pictures. So, I had to forgo the 19 pictures of Bennett's smile to have at least one picture of Oliver not frowning. :) Such is life!)

Gamel Family 2009 (Oliver, 2 years old and Bennett, 3 months old)

24 December 2010

Brother Pictures: Christmas

Sweet little brothers at Nana and Papa's House for Christmas, two years apart.

Bennett, 15 months, December 2010

Oliver, 14 months, December 2008

Sweet smiles and contagious giggles.

23 December 2010

Santa Picture 2010

:::Edit: For Sarah - I am SO sorry I forget to respond to your comment on my blog a while ago about the Santa website. It's I typically read the blog comments via my email and often during times when the computer is not accessible. Nonetheless, I hope this helps! ~Breck:::

Bennett failed to fully appreciate the magic of Santa this year.

22 December 2010

O C.Difficile!

(sung to the tune of "O, Christmas Tree!")
O C. Difficile! O C. Difficile!
Thy test-results are so unchanging;
O C. Difficile! O C. Difficile!
Thy test-results are so unchanging;
Not only is this, the third time now,
But Bennett's stools smell, oh, so foul.
O C. Difficile! O C. Difficile!
Thy test-results are so unchanging. 

We heard back from the doctors office about Bennett's stool sample specimen that was tested.  He does, in fact, have C.Diff. for the third time.  (I knew it as soon as he had his first bout of projectile vomiting at the doctors office last week.)

We are going to treat it once more with Metrodizonale given four times a day (with food) over the course of 10 days.   However, should he get it again, Bennett will be placed on Vancomycin.  If that doesn't do the trick, the nurse indicated we might have to give Bennett IV antibiotics, which usually means a hospital stay.

C. Diff. is a tough tough bacteria to get rid of.  And some CFers seem to struggle with it more than others.  It's a pretty nasty sort of thing because it causes intense abdominal cramping, vomiting, nausea, funky diarrhea, etc.  Statistics show that those who have two or more episodes of C. diff. disease run a 50% to 65% risk of another bout. 

We were surprised to hear that we are likely going to have to move up in intensity of antibiotics if this doesn't do the trick.  But we are glad the doctors are taking C.Diff. so seriously.

21 December 2010

Water Damage and Mold are not good for CF Lungs

It's taken since Thanksgiving but we finally got rid of it...that smell.  The smell we first noticed after Thanksgiving.  The smell that came from our sink, or at least under it.  The smell that could not be rid despite that all the dishes were washed, the sponges were thrown out and the trash can was empty.

Finally, after every effort to take care of it ourselves, we had to hire a crew to come out and investigate water damage that was leading to mold under our sink cabinet.

It turns out that this was the best decision.  Water had been trickling from a leak in our faucet down the pipes to the bottom of the sink cabinet.  The water sat unnoticed for several weeks (we suspect) before a fowl odor was detected.

After a couple hundred bucks and three experts, we finally got rid of the moisture and mold that resulted from this leak.  We tore out the bottom of our cabinet, had the mold cleaned out and then dryed the wood with fans for about 24 hours.

It was a mess to deal with...and was frustrating to have to deal with near the holidays.  But it was well worth it since mold is a bad thing for Bennett.  In fact, one of the molds that was growing due to this water damage under our sink cabinet was Aspergillus Fumigatus, which can cause Allergic Bronchopulmonary Aspergillosis.

Allergic Bronchopulmonary Aspergillosis is basically an allergic reacation to this mold which manifests itself through inflammation in the lungs and, if untreated, can cause further lung scarring.

So, while our house briefly looked like a war-zone, the extra precautions of taped plastic around our kitchen were actually very very good.  The crew was able to come in, tear out the bottom of the sink cabinet, clean out the mold and replace the bottom of the sink cabinet without exposing Bennett to any harm.

All of the effort has had us thinking about other precautions towards keeping the air Bennett breathes in as clean as possible.  We have begun to consider possibly having our a/c and heating vents cleaned out as well as getting our carpets cleaned (we have even considered whether we should have carpets at all). 

We don't believe that these things make alot of difference in Bennett's life.  But research does show CF lungs are sensitive to these things.  So, it begs the question, what things can we do for Bennett now that will help him breathe easier later?

One thing we do know is removing the mold growing under our kitchen sink has helped us all breathe easier!!

18 December 2010

Christmas At Cook Children's Hospital

After our appointments on Tuesday, we walked over to the Children's Hospital (which is connected to the doctor's offices) to have lunch before our last appointment.  It was an opportunity for the kids to run around and play...and for Brian and I just to reminisce as it was only one year ago that Bennett was last admitted to the hospital.

We decided to take a family photograph to compare to last year's picture.  These are pictures from the hospital's main lobby.


2009 (The Carney Family had come to visit us during Bennett's surgery.  During this picture, Bennett was in his room as he had just gotten out of surgery.)

It's so fun to see how the boys are growing up.  We love seeing how healthy Bennett looks these days.

Bennett admires the BIG tree in the hospital lobby!

It's amazing how a beautiful Christmas tree and Christmas music in the background can make a not-so-fun place a bit more cheerful.

However, the main reason why this lobby is much more cheerful for us is because Bennett is not stuck in a hospital room! 

A picture of the ceiling of the lobby, which lets in alot of light.

The hospital lobby is reflected in the big red glass ornaments.   It was so fabulous to see the lobby dressed for Christmas this year, like we had last year.  But we are *so* very glad to be only visitors. 

16 December 2010

Entertaining A Preschooler and Toddler At The Doctor

We go to the doctor alot.  So, I've become very efficient with entertaining a preschooler and toddler in a small 8x12 room.  Both boys can be entertained with a combination of fishy crackers, fruit loops, m&m's and toy cars.  But after about 30 minutes, both can become very bored.  We read books.  We get up and down in the chairs.  We talk about the items in the room.  We swing the doctors' stool around and around and around.  But that quickly becomes very mundane.

So, I've begun looking for fun ways to utilize our time together in jail-cell-sized patient exam rooms.  

One of my most recent finds is this cute game called "Baby Chicks."  It's perfect for inattentive three year olds - and for mommas who get bored of little kids' games pretty fast. :)

I brought the game on Tuesday to our marathon of appointments.  Oliver seemed to really enjoy the game.  The goal: to match your "baby chick eggs" to their "mommas" on the dice and put the "chicks" in their "nest".  It's a game of chance that can be modified to last 5 minutes or 30 minutes - a good activity for moments when you don't know when the doctor is coming in.

Besides the fact that I enjoyed giving Oliver some attention of his own on a day when Bennett gets all of the attention, I realized these moments at the doctor are great one-on-one playtime moments with mom.  I hope to utilize these moments more in the future.  It's a wonder what happens when kids are bored...same things happen to Mommas - they find something useful to do!