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Archive for February 2013

It's a GIRL!!!

Thursday, February 28, 2013

Today, we learned we are having a baby girl!!! We are THRILLED!!! :)



Loss in the CF Community

Tuesday, February 26, 2013

I knew three years ago when I began making friends with other CF families that loss would eventually be a part of our friendships.

However, I didn't know it would come so soon, like with the sudden passing of my friend Jennifer Tomerlin's little boy Bryce (2.5 years old), who died yesterday after undergoing a procedure to address complications with his Cystic Fibrosis.

I haven't yet met Jennifer in person, as I haven't yet met most of the CF families I know.  Jennifer's little Bryce would have been great friends with my Bennett.  They were about the same age and deal with the same disease.  But Cystic Fibrosis does not allow those with the disease to be with each other as the risk of cross-contamination of infection is too high.  So, we knew getting to meet in person would be a long shot.

Even still, I was delighted when, several months ago, Jennifer mentioned she was coming to Waco for an event and wanted to meet up.  We ended up being unable to coordinate our schedules but the delight of meeting another CF mom was thrilling.  I have a long list of CF moms I would love to meet some day.  Until then, we depend on Facebook posts, blog entries, phone calls and texts to stay connected.

It's important that was stay connected with other CF families.  We use our CF community to find out about new treatments, medications and research studies that might benefit each of our children.  But it's also important for our emotional health, especially us CF Mamas - to know other families like ours exist and to gain support through the unique challenges we face.

When you make friends with a family who has a child with a terminal illness, you take a risk.  Your risk caring deeply about someone whose death you may experience at some point.

I know that, without a cure, I will continue to witness the death of the children whose the families I have come to know over time - many of them with children Bennett's age.

I was warned about this from a nurse at the hospital when Bennett was first diagnosed: Be careful making friends with CF families, you may experience the death of their children, which can be very hard on you, knowing your son will face the same fate.

But that hasn't stop me from building relationships in our CF Community.  I know that if need them now, I will need them then, too.  And, I believe, they need the same from me.

Even still, it was hard to swallow hearing my friend Jennifer's baby boy died yesterday.  He hadn't necessarily been sick.  He had gone in for a rather routine surgery and come out doing well.  Suddenly, he was on his death bed - something that tends to happen more to children with underlying chronic illnesses - but something that can ultimately happen to any of us.

But I hadn't expected to begin losing our collective children so soon.  I hadn't expected to walk through mourning with a mother who had just barely given birth to her child only 2.5 years ago.  I hadn't expected it to happen to someone I know.

The loss of Bryce has been hard for me to process personally.  It's natural that I would find myself placing my son in his place and feeling the inner pain his mother is likely feeling right now.  I know what it's like to be in the hospital - to see the wires connected to my baby boy's delicate body laying limp on the bed - to hear the beeping sounds of machines that communicate whether or not his organs are functioning - to see the somber faces of doctors who know more than you at the time but who reveal through their long faces grief is ahead.

I am reminded that Bennett's life hangs in the balance, always a complication or two away from loss.  But even knowing that, it's so easy to forget how quickly life can escape our bodies.  We may not have a cure yet but we have treatments, medications, doctors and hospitals.  Even knowing this, I can easily be lulled in believing we have time.

Surely, life can't be that tenuous.  And yet, it is.
...not just for those with Cystic Fibrosis...but for all of us.

Bryce's death is another reminder for me that no one's life is guaranteed beyond this moment.  My child and husband without Cystic Fibrosis are also living on borrowed time.  This is why I must live presently, always aware of what exists on earth but also aware of what exists beyond this place we call home.

My prayers are with Jennifer, husband Nathan and big sister Bri who just lost her brother. Their grief must be unbearable.   (To see the delight Bryce brought to his family, visit their blog: http://www.breathingwiththetomerlins.blogspot.com/)

Bennett's CF Video 2013

Sunday, February 24, 2013

We are proud to introduce Bennett's Cystic Fibrosis Great Strides Video for 2013. We hope it will be a powerful way to share Bennett's story but, most importantly, we hope it will spur others to help us find Bennett a cure...




To share Bennett's video, just copy and paste this link: http://youtu.be/ksPyF8kwxEU

To watch previous year's videos, click here:
2012: http://youtu.be/KS2NdJZyXZs
2011: http://youtu.be/kzcfMb-mJYM
2010: http://youtu.be/LmXvE1HBlIg


Eating Update

Saturday, February 16, 2013

Thanks to a sweet commenter on the blog who asked for an update on "how Bennett's doing with his eating," I thought I'd update Bennett's eating progress on the blog.

In fact, I went back to see how long it's been since I've written about his eating: it's been almost exactly a year!  I find I don't write as much when things are going well.  So...how's our little guy doing?

Bennett is doing great!!  Bennett has a long list of favorite foods these days, one of which is chocolate frozen yogurt with M&Ms and gummi bears from his favorite place, 3Spoons.

To our delight, Bennett has become a very regular eater.  He tends to prefer to eat a handful of foods regularly but is definitely adding to his list over time.  We just let him decide what he likes and we let him eat as much as of it as he wants.  We sorta trust that, like most children, he will expand his repertoire of foods as he gets older.

For breakfast these days, Bennett prefers a Poptart, mini donuts or sweet cereals.  In typical toddler fashion,  Bennett asks that we take "crust" or "the white part" off the Poptart each morning, which we do.  But we know that if we give him time, he'll learn to like to eat that too.



For a long time, Bennett preferred to eat a turkey Lunchable for lunch every day.  We tried to substitute and introduce new lunch options but he was adamant that he all he wanted to eat was a turkey and cheese Lunchable with crackers (he simply would go on strike at lunch time when he gave him something else to enjoy).  Fortunately, he eventually tired of daily turkey Lunchables and has since begun to eat hot dogs and peanut butter sandwiches for lunch as well.

He loves grapes, strawberries, apples (sometimes) and, most recently, bananas.  He won't pass up a cookie, chips or candy.  He has a huge sweet tooth and a profound love for chocolate.  This may be because we allowed him to eat as much candy as he wanted for a very long time.  Up until now, it has been more important that Bennett eat something rather than nothing, particularly if that something is  high in fat and calories.

I worried for a long time if this was a good decision - to offer and encourage so many sweet items.  But, looking back, we see that it has been very good for him.  While Bennett has naturally developed a sweet tooth, his interest in all types of food has increased and now we can use his love for sweets as a reward for consuming more food or trying completely new foods - something we couldn't do for the longest time because he found no foods appealing.


Dinner time can sometimes be a good time for Bennett to eat...or, sometimes, he prefers to eat nothing at all.  It usually depends on how well he has eaten throughout the day.  If he's eaten well earlier in the day, he will often find dinner unappealing.  As not to make it a power struggle, we typically just let him determine whether or not he eats.  (Although, if possible, we will ask him to take three bites of his meal just to show he tried to eat since we hold big brother accountable for eating five bites at dinner - bites are determined based on the boys' ages.)

The nice thing about dinner time is it's an opportunity to encourage Bennett to try new foods.  We focus less on calories at this point in the day and more on textures and new tastes.  He has done an excellent job learning to eat tiny pieces of chicken, steak, pasta, beans, vegetables and bread.  His favorite dinner meal at this point is chicken, rice, peas and corn.  He really enjoys participating in the process of eating, such as placing butter on his rice or pouring salt and pepper in his food.  I have been proud of him for enjoying ketchup.  These are all acquired tastes that have no necessarily been natural for Bennett.

"So, looking back, what seemed to help Bennett the most?"  This is the question I regularly ask myself. Was it early speech therapy intervention or our time at the Baylor Feeding Clinic almost two years ago?  Was it simply maturity and his exposure to food, learning to tolerate new tastes and foods in his mouth?  Maybe it was going to school and seeing his friends successfully eat every day?  Or could it be having his eight back teeth capped, potentially addressing undiagnosed cavities?

I am not sure if I could point to one specific thing.  I think every one of those things helped significantly at some point.  While I will say the single greatest improvement with his eating issues came from our time at Baylor, we have seen important additional benefits of maturing and eating with his peers at school.  Having his teeth fixed during dental surgery last December may have been the cherry on top.  It wasn't the greatest improvement but it seems that Bennett's consistency with eating and most definitely his willingness to eat larger portions of food has increased since that period.

All in all, Bennett's eating issues are slowly becoming not issues at all.   Maybe the one thing that demonstrated this to me most clearly was recently when he learned to swallow his enzyme pills.  What an amazing feat for a child with a history of oral aversion?

We have no plans to stop using his nightly feeding tube.  We won't be removing his feeding tube at any point in the near future.  Bennett continues to get about 500ml of 30-calorie formula per night, an amount that has not been adjusted since he was 18 months.  We consider his feeding tube feed supplement and hope it will continue to give us the peace of mind that we don't have to stress over his eating choices, he'll get the calories one way or the other.

I think success in this situation is determined by Bennett's continued growth (which he continues to grow on his growth curve nicely) and by Bennett's interest in food.  I love when Bennett asks to eat or says, "I'm hungry" (which is usually code for "I want candy").  I never take his request for food for granted.  When you've had a child refuse food to the point he was considered "failure to thrive," eating Poptarts all day long doesn't really seem that bad. :)

Happy Valentine's Day!!

Thursday, February 14, 2013

One of the things that made my day most special today was getting to visit my little loves at their school Valentine's Day parties. Happy Valentine's Day from our hearts to yours!!!

Oliver made his bag at school during their party.  


...because you can't buy tornado valentines... :)


I grabbed this picture when I watched from afar Bennett's teacher (whom we love) grab him and spontaneously love on him when she didn't know I was watching.  


Bennett loves his teachers!! Both teachers are so tender, genuine and thoughtful. They have such a gift with the little ones (and an amazing amount of patience and energy). We are so thankful they love our boy as much as we do!!

Sticker Charts

Tuesday, February 12, 2013

We've gone sticker-crazy around here...and everyone involved is delighted!!



Our days of sticker charts started a few weeks ago after a visit with Bennett to the Ear, Nose and Throat Doctor (ENT).  The ENT doc, who we were at a follow up visit with after Bennett's hospitalization and tracheal stenosis diagnosis in November.  I had figured that we'd go to the follow up appointment, be given thumbs up and sent back home.

Instead, the ENT doc gave Bennett a good check up of his sinuses and determined he has the beginning stages of nasal polyps, a common symptom of Cystic Fibrosis.  Nasal Polyps are small growths of inflammation inside the nose that are typically caused by irritation.  In the case of Cystic Fibrosis, they are caused by the constant presence of mucus in the nose.  This is why the ENT doc decided to prescribe Nasonex and the use of saline nasal spray twice daily.

"Twice daily?  Oh boy - that's going to be interesting to force a three year old to do this" was my first thought.  But, like everything with Bennett, we don't have time to think about how we're going to do it - we just have to.

Knowing that we might would have to fight Bennett to do his nasal sprays twice per day, I decided to offer up the chance for a toy.  Bennett, who is highly motivated by new superhero toys, was more than excited to begin earning a toy for his patience and endurance of taking these medications.

But, not to be forgotten, we offered Oliver the same deal.  If he could sleep through the entire night in his own bed (something he stopped doing about the time Bennett was born), he could also earn a toy.

We knew Bennett would be motivated by a toy.  But would Oliver - who is rarely motivated by extrinsic rewards?

Now, we are 5 weeks out and we are estatic to say both boys are sticker champions!!  Bennett hardly ever fights getting his nasal sprays.  And Oliver has consistently slept in his own bed for more than a month for the first time in three years!! Whooo-hoo!!

It may look like Oliver has to get fewer stickers than Bennett but it's only because Oliver gets a sticker for sleeping in his bed (one per night).  Bennett gets two stickers per day for each nasal spray (morning and night) and an additional sticker for staying on his g-tube pump at night (another situation we were having issues with but has since been resolved).

Up until this point, I have slowly added one day per new sticker chart.  So, the first day, we started with 1 day's worth of empty squares to be fulfilled.  The next day, we went to 2 day's worth of empty squares before a reward was given.  In order not to overwhelm the boys with a sticker chart that they could not sustain the energy for, I increased the empty squares one per day.  My goal was to go slowly until we could build a habit.

However, now that the boys have been successful sleeping in their beds and taking their medications for 24 days, we feel that we are now all in the habit.  So, my plan is to begin to wean the boys away from having to use a sticker chart at all for this particular behavior.

But are we done with sticker charts?  Are you kidding?!  NO WAY!!  Sticker charts are AMAZING!!!  What is the next behavior I'd like to strengthen with the boys? Hmmm....

We meet with the ENT doc again in the next few weeks.  I hope she will notice some improvement in his developing nasal polyps.  We know quite a few CF children who have had to undergo surgery to remove them.  We hope that won't be the case for Bennett for quite some time.  However, if they begin to inhibit his breathing, we won't have much of a choice.  We shall see.  For now, we're just proud of our big boy for continuing to be so brave with the addition of new daily medications.  We are equally proud of our biggest boy for being willing to sleep in his own bed by himself.  It's a sure sign his internal anxiety is under control.

Storm Chasing with a Click

Friday, February 8, 2013

One of my favorite parenting moments came at the end of Oliver's tornado-filled birthday in November of last year.  

Oliver opened his last present and then sighed, "oh, this still isn't my tornado camera..."  The forelorn look on his face was so evident.  Apparently, there was one gift that he wanted more than any other: a camera to take pictures of his tornadoes.

Too bad I had no idea he wanted a camera so badly.  But, thankfully, Christmas is only two months after his birthday...whew!!

So, it as really delightful when last week the storm clouds rolled through and Oliver got to use his new "tornado camera."  

Just to be clear.  The only reason he wanted a camera is for the sole purpose of capturing his tornadoes on camera.  Makes sense to me.  Can't be a storm chaser without a reliable camera.
























Support Bennett's Brigade by Shopping Thirty-One Gifts!

Wednesday, February 6, 2013

A few weeks ago, when I began asking friends for suggestions on creative ways to raise money for the Cystic Fibrosis Foundation in honor of Bennett, my friend and sorority sister Ainslie offered to throw a Thirty-One Gifts party and donate a good portion of the profits to Bennett's Brigade. (Ainslie is also the founder/owner/blogger of Modhousewife.com who has generously shared our story on her blog in the past.)

I was excited about this opportunity!  I'm a huge fan of bags and anything that will help me get my life more organized.  Plus, I have heard great things about the items Thirty-One sells.  In addition, Ainslie has been such a sweet supporter of Bennett's Brigade so I greatly appreciated her offer to donate back to CF what she would otherwise make herself.

The Thirty-One sale goes until Sunday, February 10th.  To order, just go to www.mythirtyone.com/aegordon.  Click "My Parties" and find "Bennett's Brigade."  Then start shopping for the best ideas in organization and fashion for Spring 2013!!

I'm having a hard time figuring out what I'm going to buy.  But one of the things I am MOST excited about purchasing is going to help make our life with Cystic Fibrosis even better:


I'm so excited to *finally* find a tiny thermal pouch to keep Bennett's Pulmozyme vials cold when traveling.  Typically we use the smallest thermal lunch box we can find but it's like 4X too big for the space we need.  So, now we have a tiny pouch to carry just the right amount of medication!!  And the nice thing is, if I like that, I'm going to order the bigger one.  One day we'll be traveling with even more CF meds so I know it's a matter of time we'll need a bigger pouch.  Sooo excited!!

The other items I have heard are really wonderful (so they are on my list to purchase): the Large Utility Tote, the Town Blanket and the Retro Metro Bag.  Anybody else know of any other good Thirty-One bags I should put on my wish list?

Oh, and apparently there is a February Customer Special: For ever $31 spent, get a Keep-It Caddy for $5 ($22 value).  A pretty sweet deal, eh?

Now, let's go shopping and help find Bennett a cure!! :)

Photo Dump

Sunday, February 3, 2013

My iPhone says I'm out of storage space.  Apparently iCloud stops backing up your phone once you get 800 pictures on your phone.  Oops! :)  

So, I've been busy downloading and deleting.  
Here are a few pictures I thought I'd share of the boys being boys: 

Wearing his favorite costume: a fire hat and boots (which may or may not match)


The boys wait patiently for the hairstylist to cut their hair.  
In the meantime, they pretended to give each other haircuts. 


Oliver just experienced his very first time roller skating.  Initially, he was awful.  Brian called him "Spaghetti Legs" as he could hardly keep his feet still.  But he laughed and laughed and fell and got up and laughed again.  This "walker" didn't do much good since it had rollers of its own.  But, with practice, Oliver got better and loved it.


Bennett enjoys watching people load the airplane. 


Oliver, wearing a Superman t-shirt given to him by his "Uncle" Drew and "Aunt" Judy reenacts a scene from Christopher Reeve's original Superman movie (it's pretty much the only scene he's ever seen).

Oliver came to ask for help during his "rest time" this past week.  Apparently he got the door stopper stuck in his hair.  I didn't even both asking how it happened.  He thought it was a bit embarrassing but mainly hilarious.  (I did too. :))