Friday, October 17, 2014

Avonlea's First Birthday Photo Shoot

Fall is birthday season in our house.  Since our immediate family all have birthdays between July and November, we find ourselves celebrating for five months straight! :)  These birthday pictures are from Avonlea's first birthday photo shoot back in August (HOW is it already October?!!).  

Thank you to Khimberly at Snaptastic Shots for these gorgeous pictures of our sweet babe! :)  Khimberly is an absolutely magical photographer!!  I love all of the details and unique facial expressions Khimberly was able to capture of Avonlea.  If anyone was ever able to make time stand still, Khimberly finds a way to do it with her photography.

Avonlea had 5 teeth by her first birthday.  She gained her 4 molars shortly after.

Avonlea's newest trick at the time.

Our sweet little baby doll.  Avonlea has literally had random strangers (on a plane, in a restaurant, in a museum, etc.) ask to take pictures of her (just her) on their cellphones because she looks so much like a live baby doll.  The first time, it was funny.  The second time, it was creepy.  But, by the fourth time, I just accepted it.  She's a sweetheart who considers everyone her friend.  :)

We love her chunkiness.

This is what Avonlea does when you ask her to "wink." She squeezes her eyes shut really tight.

Trying the icing...not really sure...

Avonlea gets her curly hair from me but her long eyelashes from her Daddy.

When you ask Avonlea, "do you want to eat?"  She replies, "hmmmmm!"

Why limit your cake being a finger food?  Get your whole foot in it!

Over the last year, we have come to know Avonlea as a very happy, social, loving, easy-going, peaceful yet strong-willed, independent, fearless child.

Avonlea has a special place in her heart for her brothers (Oliver is a caregiver to her.  Bennett is a playmate).  She absolutely delights in her Daddy.  But she's a Mama's girl.  We are incredibly thankful for her.

Sunday, October 12, 2014

Bennett's Bug Birthday Party

A few weeks ago, Bennett celebrated his turning five years old with a "bug themed" birthday party with five of his little friends!

Bacteria found in dirt and decaying matter are not good for Bennett's Cystic Fibrosis lungs so his bug birthday party involved no real dirt or real bugs.  Instead, we allowed giant plastic bugs to "fly" and "crawl" all over the place.

The kids enjoyed dirt cup desserts!  Since the guests were all tiny people, I thought these clear shot glasses were perfect for an individual serving of oreo cookie and chocolate pudding "dirt" with a "worm" on the side!

I made a similar decoration from ribbons for Avonlea's birthday.  I just love making these.  So easy and fun to brighten up a space!

The kids enjoyed eating Garlic Breadstick Dough Snails, an idea I found here.  

We also ate strawberry "ladybugs"... (apparently our giant fly liked eating them too. :))

...and grape "caterpillars," which nearly ever child ate like they were eating corn on the cob. ;)

Bennett's birthday cake was a gift from our friend Paola.  Paola has made Bennett a birthday cake for the last three years.  Bennett *loved* his creepy crawly cake!!  And, it wasn't just adorable on the outside, it was SO delicious on the inside too!!

I'll be honest, the creepy gummy spiders on the side of the cake kinda freaked me out. :)

The kids enjoyed kool-aid "bug juice" to drink.

The kids enjoyed going on a "Bug Hunt" where they had to find plastic bugs hidden in our yard. Each child was given a jar to put their bugs in.  The jars and plastic bugs served as party favors.

Sweet baby sister loved playing outside with all the big boys running around.

Make a wish...

May you have many more birthdays, our Bennett-bug!!  We love you!

Wednesday, October 8, 2014

2014 Bennett's Brigade - Santa Cruz

Bennett's Brigade finished off well this year with our last walk in Santa Cruz, California!!!  Our sweet team in Cali was led by my sorority sister, Kerry, who holds a very special place in my heart!  

Kerry (second to the left) was joined by 4 other amazing women and her sweet husband, none of whom I know personally but for whom I am sooo grateful!!  They are an amazing group women with huge hearts, not just for Bennett and for all of those with suffering from Cystic Fibrosis!!  

This is the second year for this team to walk and each time I want to reach through the pictures they send me and give each one a hug to tell them how much my heart swells with appreciation and love for them to do this in honor of Bennett.  This group also represents a large number of people who couldn't be there in person but who gave toward's the Bennett's Brigade-Santa Cruz's goal of $300 raised this year.  

Bennett's Brigade - Santa Cruz raised $578 for the Cystic Fibrosis Foundation in honor of Bennett!!  

Quentin, Kerry's little boy, carried the Bennett's Brigade sign!

Charis and Beth with Kerry's little girl (who is slightly younger than Avonlea), Anna.

Kate, her sweet little one, Kimmie, her adorable little boy Andrew and Charis with Anna. :)

Thank you Bennett's Brigade - Santa Cruz for raising $545 for a cure for Cystic Fibrosis in honor of Bennett!!!!  Thank you for helping save our son while walking with yours!!

Thursday, October 2, 2014

CF Clinic Update

On Monday, Bennett had his quarterly Cystic Fibrosis check-up at our CF Clinic in Dallas. 

Avonlea came with us so I made sure to bring blankets, toys, snacks and an iPad so we could survive the several hour appointment with a 1 year old and preschooler crammed in a small clinic room. Both kiddos did great.  They had each other, which seemed to help them both stay entertained.

Thankfully, according to the CF doctor, Bennett's lungs sounded great.  

The doctor and I some took time during our appointment to look at Bennett's recent CT Scan results together:

A high resolution CT Scan takes pictures of lungs as though it's cutting a slice of cookie dough.  This is a picture of his lungs from the inside.  We are able to see his lungs much more clearly than what could be detected on an x-ray.  However, the radiation from a CT Scan is the same as 75 x-rays so Bennett will not get another CT for quite some time.

The most promising news of Bennett's CT Scan was there were no signs of bronchiectasis, which is scarring damage to the airways.  Some inflammation to some of the airways (see small arrow in picture) can be seen.  But, thankfully, it hasn't turned in to bronchiectasis yet.

Bronchiectasis is what you don't want to see but is inevitable at some point with the progression of Bennett's disease.  The fact that we've made it to 5 years old without bronchiectasis is really wonderful.  We are thankful for every good day of health!!

Here is a close-up of the inflammation in Bennett's airway.  See the long black tube with white lines along side of it?  That's inflammation.

We discussed Bennett's atelectasis (his partial right lobe collapse) results on the CT Scan.  We aren't sure if this atelectasis is just a captured moment in time - or if it's something that is there permanently. Atelectasis is hard to see on x-rays so we don't know if it's been there a while.  As long as Bennett's asymptomatic (not showing any lung issues), the doctor doesn't want to do anything about it.  It may turn in to an infection in the future.  But, right now, we aren't going to do anything.

The close-up of the atelectasis.  (See the long white image next to the arrow.  This partial lobe collapse is laying next to his heart.)

Having said all that, the big focus of this appointment was not Bennett's lungs but his weight. Bennett is continuing to struggle with weight gain.

He is not alone.  Those with CF often struggle to maintain a healthy weight due to their higher-than normal caloric needs and digestive/malabsorption of fat issues.  But, long-term survival and overall lung function is linked with nutrition status in both children and adults with CF.  

Bennett's struggle with appropriate weight gain, may ultimately affect his lungs in the long-term.  So, we are continuing to evaluate our options here.

This is Bennett's height chart.  He is between the 25th-50th percentile in height.  Pretty normal, we think.

This is Bennett's weight chart.  His plotting shows he is gaining weight but, because he keeps getting taller without gaining more weight, he's essentially losing weight over time.  He is currently in the 18th percentile for weight gain.  

Our biggest concern is the downward pattern in his BMI.   Bennett's BMI is currently in the 13th percentile.  

Nutritional status has a significant effect on pulmonary disease progression and survival in patients with cystic fibrosis.   In fact, young underweight patients have worst pulmonary function outcomes, likely because "accrual of lean body mass is the factor that is involved in the preservation of lung function."  The Cystic Fibrosis Foundation recommends that CF patients stay in the 50th percentile.

So, in order to keep Bennett well, we have to get him to put on some weight.  This is part of our fight against his disease.  CF makes gaining weight hard.  We are fighting back with all the ways we know how.

We have decided to try new enzymes before his tube feds every night.  If this doesn't work, we may have to increase the amount he gets tube fed at night or even do tube feedings during the day.  

It's not that Bennett doesn't eat or that he doesn't like to eat.  It's just that he needs to eat a lot to stay healthy and, like any preschooler, he eats small amounts and can be picky.  

We have a follow up appointment with the CF Clinic in two months to see if our efforts are working.

Overall, despite seeing some progression of the disease in his CT Scan and hearing his BMI continues to drop, we are very thankful for the thumbs up to good health that Bennett received at his CF appointment!