Tuesday, July 22, 2014

Baby Bow Tie + Kendra Scott Cystic Fibrosis Fundraiser for Bennett

A few weeks ago, Brian, the kids and I attended a fundraiser given in honor of Bennett at Kendra Scott Jewelry in West Village in Dallas hosted by Baby Bow Tie.  All proceeds went to the Cystic Fibrosis Foundation.  


The event, which offered bubbles, bow ties and bites, was SO fun!!  I loved "oohing" and "ahhing" over adorable little bow ties and beautiful jewelry while visiting with friends and knowing we were helping Bennett!  


The Baby Bow Tie/Kendra Scott fundraiser raised $558 for the Cystic Fibrosis Foundation!  This was a smashing success for a 3 hour shopping fundraiser!!


I explained to the boys that we were going to a fundraiser to help us find a cure for Bennett's Cystic Fibrosis.  It makes them happy to help Bennett.  They don't necessarily know how money is being raised but they do know people are coming out to help.  The CF Walk and fundraisers such as this one are a wonderful way to teach both boys how people care about them and our family.  It serves as a reminder that while Bennett struggles with his health, he is not alone.  I know that while he doesn't fully get it, his heart is reminded again and again that he is loved.  And that's meaningful to me as a mother for him to feel.


Pictures capturing the event were taken by Dyan Kethley Photography from Dallas.  Thank you, Dyan (pronounced Diane), for allowing me to post these beautiful pictures here!!  I am incredibly thankful to have such gorgeous pictures by which to remember the night!


Kat Armstrong is the designer and owner of Baby Bow Tie and the person who worked so hard to make sure the night was a success.  Kat has such a huge heart for others and a particularly soft heart for Bennett.  I am so thankful for all she did and continues to do to help us find a cure for CF!


These are just some of the adorable bow ties that Kat has designed.  I love these bow ties, not just because they are cute but because they are also so easy to put on!  They have a magnetic clip so my boys don't mind putting them on or wearing them!  I am in love with Baby Bow Ties' newest collegiate collection!  It's so hard to find anything cute for little boys when dressing up in our favorite college football team colors.  


Baby Bow Ties can be found at NeimansNordstrom and over 40 boutiques across the US including The Couture Baby in NY and Kitson Kids in LA!  It's hard to find cute accessories for little boys but these bow ties have made me really love having little boys to dress up.  I'm a sucker for gingham and seersucker!! 


Although I had heard and noticed that people love their Kendra Scott jewelry down here in Texas, I had never been to a Kendra Scott store before.  Now, I get why people rave about it!  It was a lot of fun to to see all of the fun colors their jewelry come in!  It's easy to feel like a child in a candy store and you can't pick you're favorite candy! :)


The sweet ladies at Kendra Scott were so kind to help entertain the boys while they were in a jewelry store surrounded by women shopping.  They showed the boys how they could use Kendra Scott's website to design their own jewelry.    The boys had such a fun time placing new colors on the earrings.  The girls even took Oliver back to see some of the stones Kendra Scott uses in their jewelry. Oliver, our little geologist, was in heaven!



I had not realized, before visiting the store, that designing your own jewelry is half the fun of a Kendra Scott piece!  The ladies at Kendra Scott mentioned Kendra Scott is very popular with bridesmaids.  With as much jewelry as Oliver and Bennett made during the few hours of the fundraiser, I'm glad they don't yet know how to check out online!


I loved watching people design their own jewelry using the Kendra Scott website.





 
I was so delighted to see our friend Lindsey at the event.  Lindsey and Brian are at the same program at Baylor.  Lindsey actually introduced me to Kat several months ago when Lindsey joined Bennett's Brigade and began raising money.  I am incredibly thankful for this girl.  She is thoughtful, incredibly sincere and a huge advocate for helping us find Bennett a cure.


Thank you to Kelsey for volunteering her time at the event.  It meant so much to me that people who I didn't know would come out to make this night successful and help us raise money for CF!


I was so excited to see my sweet friend Ashley who came out to help us find a cure for CF.  Ashley and I know each other best as "Fopa" and "Sparkler" as those were our camp names when we worked together (and shared a cabin together) right after high school at Pine Cove Camps in Tyler, Texas.   I shared a little bit of our story on the blog a few years ago here.  I am so thankful for Ashley taking time away from her family to join me for a girls night shopping and helping my son!


This picture demonstrates my biggest surprise of the night!  At one point during the event, I looked out Kendra Scott's glass doors to notice a familiar face walking in.  It turns out that my Kappa Delta sorority sister Megan, who happens to live in the Dallas area but whom I didn't even know lived nearby, had heard from another one of our sorority sisters about Bennett's fundraiser.  My friend Amy, who lives in St. Louis, apparent contacted Megan to tell her about the event and encourage her to come. It was *such* a gift to have Amy tell Megan and then for Megan to come out to support our family. I felt incredibly loved.  After Megan and I had a chance to catch up on the last 10 years since we had last seen each other, Megan told me she wanted me to pick something out from Kendra Scott as she wanted to give me something as a gift.  At first, I resisted her gift.  But eventually I realized that it would be a very special thing by which for me to remember this moment and this night. Megan purchased my very first pair of Kendra Scott earrings (I'm wearing in the picture), a gift I will always cherish.


Oliver, Bennett and Avonlea did a great job hanging out in the store during the fundraiser.  But, of course, kids are kids so there was lots of rolling around on the floor and playing with each other. :)








Bennett does his "Batman-face" with Meredith, one of the sweet ladies at Kendra Scott.  Bennett is always being some sort of superhero.


Avonlea was in heaven with all of the people around.  This girl loves people!










 The boys loved looking at all the jewelry and bright colors!  They told me all the ones I should wear. :)


Bennett chose a pink pair of earrings for me to wear!   He always talks about how Avonlea and I are princesses.  His favorite colors for us are always pink. :)



Cutest little bow ties!  The Texas Tech one, the black and red one in the middle, is so sharp!


XOXO Baby Bow Tie







This is Amy, the Executive Director at the Dallas chapter of the Cystic Fibrosis Foundation.  I am so thankful for all she does for our cause.  She's not just someone I work with to find Bennett a cure, she is also someone I consider my friend.  








Brian: "Bennett, how much do you appreciate everyone helping to raise money to find you a cure?"
Bennett: Thiiiiiis much!!"


Thank you, Kat Armstrong and Kendra Scott for all that you did to help our little man breathe easy!! Your help to save my son means the world to me!


Kat knows, because I called her the next day and cried on the phone with her.  But my heart is so incredibly appreciative for the thoughtfulness of friends and strangers.  I certainly don't know why people are so loving and helpful but I am incredibly thankful that they are.  Thank you, Kat, for initiating this fundraiser and being with us in our fight against Cystic Fibrosis!


Monday, July 14, 2014

CT Scan Results: Mild Collapse of Right Middle Lobe

Bennett did great handling his first CT scan!  He was able to do it while awake and didn't seem very afraid at all.


It seemed to help to have his big brother there.  Oliver actually asked the technician if he could come along to tell Bennett everything he knew about what the CT scan was going to be like.  He said, "see, Bennett, it's just a big donut camera and you are just going to go through the hole.  And it's going to sound like a washing machine.  And your job is to lay *very* still..."  Oliver mainly repeated everything he had learned when we watched a really well done video on youtube for kids about getting a CT scan earlier in the day.  But I do think it was helpful for both the boys to hear him tell it again. I have seen Oliver process his own fears by finding ways to guide and help Bennett not be scared.  


It didn't take but just minutes after walking in the room before the technician picked Bennett up and put him on the CT scan bed.  While I was watching Bennett, Oliver briskly walked behind the glass and found two more technician friends who were observing the scan from the other room.  The techs taught him all about how to read a CT scan.  The entire scan took no more than 5 minutes and we were done.  

The CT scan revealed good news and bad news!  The good news is there is no sign of bronchectisis.  Bronchectisis is what we call the scaring damage to the airways.  It is what we are always most afraid of with Cystic Fibrosis.  This is excellent news!!  The longer Bennett goes without signs of bronchectisis, the better!!

The bad news is Bennett's scan does show he has mild atalectisis/collapse of the right middle lobe of his lung, caused by mucus plugging of an area of Bennett's airway.  

What is crazy is that Bennett has no symptoms at all.  He is never out of breath.  He doesn't complain of his lungs hurting.  And his last oximeter reading was 100%.  This is what makes CF so scary: damage is happening on the inside, and yet, you would never know from the outside.

The CF doc and I did talk at our last CF Clinic appointment about a spot on Bennett's most recent chest X-ray that may have indicate he had some "mucus plugging."  It's hard for an untrained eye to tell what the arrow is pointing at, but, if you look closely, there is a long black spot tube-looking-thing on his lung that the doctor was worried about possibly being a clogged airway.  We had agreed not to worry about it right now.  But, I left his appointment knowing something might be going on that we would need to deal with later.


The X-ray on the left is from October 2013.  The X-ray on the right is from July 2014.
Bennett's most recent Chest X-ray had looked better this year, than his did from last year.  For reference, the big white spot on the left side of the lung is the heart.  The white/grey cobweb looking things in the left picture demonstrate Bennett was dealing with some kind of infection in October 2013 (we think he was just dealing with a cold).   However, there are still cobweb looking things on the right side of Bennett's lung in both pictures, indicating a problem still exists.  This area is the same area that the CT scan eventually revealed is mildly collapsed.

To be clear, Bennett doesn't have a collapsed lung, just a lobe is collapsing due to thick mucus, which is plugging the airway.  But, if not eventually resolved, it will cause more severe issues.

We have been advised to be more aggressive with our chest percussion therapy (our "Vest").  But, if we can't the mucus in that area to unplug, it may be necessary to use IV antibiotics or undergo a bronchoscopy at some point to get it unclogged.  I have read that, unfortunately, once mucus plugs a part of the area, it causes that area to be more susceptible for mucus plugging in that same area later.  So, I imagine we will have to keep our eye on that area from now on.

Bennett's CT scan results have sort of given me an new awareness of three things:
1.) how sneaky Cystic Fibrosis is - even when Bennett has shown no lung issues, it's clear CF is damaging things inside - CF's early damage is often symptomless
2.) how, even if we do everything right and do what the doctor says, CF will not be stopped
3.) how Cystic Fibrosis begins the cycle of damage - mucus plugs the airways, the infections come, the antibiotics fight the infections and then it just repeats.

At this point, the only thing we have changed in our treatments is just to ramp up our Vest settings with the hope we can knock loose all that thick mucus stuck in an area of his airways.  But, deep inside, I realize this is just the beginning...

Saturday, July 12, 2014

Best friend + CF Clinic = a good day!

My friend Dana and I try to regularly give our little boys playdates.  Recently, one of our playdates landed on a day when Bennett was supposed to go to his quarterly CF Clinic appointment.

Since it was going to be just Bennett and myself at his appointment - and since I knew Bennett was going to have to have the dreaded bloodwork and an X-ray at this appointment - I thought it might be fun for Bennett to have Parker come along with us!

You may remember Parker's story from here. (Continue to follow his family's story here.)  Parker's father passed away last year from brain cancer so I was a tad bit nervous that he might have a hard time coming with us to the CF clinic and seeing Bennett get bloodwork done.  But, Parker's mom Dana felt confident that he would be ok.


And so the boys and I drove the 2 hour drive to Dallas to attend the 3-hour appointment.  The great thing was the boys didn't seem to care where they were or what they were doing, they were just delighted to be together!


They spent the time waiting for Bennett's X-ray by eating snacks and making each other laugh. :)


Bennett had to get a chest X-ray at this appointment, which he is required to do annually.


Bennett has become very confident during his X-rays.  It used to scare him to have the machines all around.  But, he's becoming quite the champ.



We just remind him we are taking a picture of his lungs.  It seems to help for him to tell his lungs to "smile." :)





The doctors take two views of his lungs.  They are always looking for lung damage or signs of inflammation, which usually indicates infection.









This is my only picture of Bennett getting his bloodwork done.  I took it from my camera raised above my head.  After this picture, I had to use both of my arms to hug Bennett while the nurse stuck his arm.  He started to cry but I just kept saying to him: "see, you're like Oliver, you're not even crying when you get your bloodwork done!" and somehow, that actually kept him from crying.  You can see Parker sat nearby with the toys in his lap.  As soon as Bennett was done, he hopped down off my lap and went to Parker.  Parker's immediate response to Bennett just having been poked with a needle and had his vein sucked dry? "You want to play with Wolverine, Bennett?"


After Bennett's X-ray and bloodwork, we headed upstairs to the CF Clinic.  The boys played in the lobby and watched cartoons for a few minutes.


Then, the nurse took us back to get Bennett's vitals.  Bennett had grown two pounds since his last visit....


...and he had grown an inch.


The nurse took Bennett's blood pressure and measured the oxygen in his blood through an oximeter.


Parker, unimpressed with what was going on, waited patiently for Bennett to be available to continue talking about superheros.





Once we got in the room, the boys wanted more snacks and to really pull out their toys and play.


It didn't take long for a new friend walked in the room.  Dr. A, the resident doctor, came in and checked Bennett's ears, nose, lungs and belly.


Dr. A was amazingly patient and playful.




She made sure not to leave Parker out.  She asked if Parker wanted her to see in his ears too, which he did.






This has got to be my very favorite shot of the day.  This is when Dr. A asked Bennett to lay down so she could check his belly.  Bennett did lay down but seemed a little nervous.  At this point, without prompting, Parker just reached out and put his sweet little hand on the top of Bennett's head - a  clear way to say, "don't worry, friend, I am here."  The boys aren't aware yet what each of them is going through with the other.  But Bennett has been with Parker through the loss of his father.  And Parker is being there for Bennett through his own battle with Cystic Fibrosis.  This moment articulated the love that Dana and I can see so evidently between our boys when they are with each other.


The CF Clinic takes a few hours because we see many specialists.  Bennett gets a throat culture, given by the respiratory therapist.  We usually visit briefly with the clinical psychologist and may talk with the nutritionist or social worker. But our last visitor of the day was Dr. C, Bennett's CF doctor, who came for a check.


Dr. C asked Bennett to breath in and out.  Bennett, being silly with Parker, dramatically breathes in in this picture. :)


We got the "all clear" from our appointment with Dr. C and we were allowed to leave!


Before we took the long trip home, I stopped by a Seven-Eleven gas station to grab the boys a snack to eat in the car.  They each chose jelly beans and a Slurpie. Parker specifically asked for a green straw for his slurpie "for my Daddy" (Green was his Daddy's favorite color). :)

Realizing this was a sweet moment, I asked the boys if I could take a picture to send to Parker's mama.  Parker asked, "ok, and send it to my Daddy!"  Not sure what to say, I instinctively replied, "ok, I will!"  Then, Parker said, "really? how?"  I said, "I think your Daddy is watching you all the time, so I am almost certain he will see it."


Parker, your Daddy would be mighty proud of the little man you are becoming.   Your mama is doing an amazing job, even in his absence.  Thank you for being such a wonderful friend to Bennett.

::Parker's mama, Dana, continues to share her journey at her new website: http://danahurst.com.::