31 August 2012

Annual CF Clinic Appointment

Like most of those with Cystic Fibrosis, we visit the CF doctor every three months.  However, the big doozy of appointments that we anticipate each year is Bennett's Annual CF appointment.  This appointment includes many of the same things he does at every appointment (seeing the doctor, getting a throat culture, being weighed) but it also includes a chest x-ray and blood work.  I had anticipated this appointment to be a bit more stressful for Bennett due to all that he would have to undergo.  But he handled it beautifully and this may have been the very best CF appointment we've ever had!

There are several reasons why today went so well.  But one of the reasons today went so well was who Bennett had by his side:

Big brother Oliver was such a help today!  On our way to Dallas, Brian and I asked Oliver if he would be willing to assist us with very big and important job at Bennett's appointment.  Oliver's eyes got big and wide as we asked him if thought he could be very brave and demonstrate to Bennett how to do things at the clinic so Bennett would not be scared.  Oliver was pleased as punch to have a role to play today and became Bennett biggest cheerleader.  Not only was it adorable to watch Oliver help his little brother, Oliver was actually VERY helpful.  Oliver confidently showed Bennett how to step up on the scale, stand up straight to have his height measured, to smile and say "cheese" for the x-ray machine and to be patient while the doctor looked in his ears.  Bennett picked up on Oliver's confidence and wasn't afraid most of the time!

Another reason why today's appointment was success was Daddy was there.  Brian came along during this appointment as I knew it would be a long day for all of us.  We are so fortunate to have a Daddy with a flexible school schedule who can come be with us on important days like this one.  Having Brian involved with Bennett's care takes a lot of the burden of his care off my shoulders.  It's nice when Brian can be a part of these appointments so he can talk with the doctor and better understand Bennett's disease.

But the biggest reason today's appointment was a success was Mr. Bennett, himself.  What a champ he was today!  He was SO brave and complied so well with the poking and prodding from doctors and nurses.  I was delighted to see how much easier CF appointments have become now that Bennett is almost three.  Today, Bennett seemed less fearful than ever before and was so excited to show the doctors and nurses how "big" and "strong" he is!

Of course, there were things that really stressed him out.  Bennett did not like the throat culture or blood work we had to take from him (we were forced to hold him down during those times).  But other times, like when Bennett was getting his vitals, I found Bennett could be calmed down and taught to endure.

I learned a trick today by accident.  After I took this picture, I put my camera down and told him to listen ever so carefully for the series of beeps from the machine that would let off to indicate we were done.  I loved seeing his face as he intently tried to listen to the beep of the machine.  He was so excited when he heard the beep and could instruct the nurse to promptly released the blood pressure cuff from his leg.  Today was rewarding - to see that, with enough distraction and encouragement, Bennett can now patiently undergo these tests without much fuss.   After more than two dozen CF clinic appointments and crying at each one, it feels so good to see these tests get easier on him...which makes them tremendously easier on me!

While in the room and waiting for Dr. C to visit, Daddy took some time to explain to the boys about lungs and how Cystic Fibrosis affects Bennett's lungs.  Both boys really loved hearing Daddy's explanations.

At first, I hadn't really noticed how focused the boys were on Brian's explanations.  But they stood looking at that pink poster for a good long time.  I think both little boys are trying to understand why we talk about "lungs", "mucus" and "CF" so much.

I am so glad I caught this moment with my camera as it is probably Bennett's very first moment of learning about his disease.  He kept asking questions like, "why my wungs, Daddy?" and "what happened?"  But it was when Dr. C started listening to Bennett's lungs and Bennett so patiently inhaled and exhaled that I noticed that Bennett had grasped some part of why we were in the doctor's office in the first place: breathing is important, our lungs keep us healthy and the doctor is going to make sure our lungs are working well.

One of my favorite moments today were the few minutes Dr. C took out of her time to play "Superman" and "Buzz Lightyear" with Bennett.  He was happily playing when she first walked in.  Noticing that he was engaged in play, she came in, sat down and began to play with him.  He loved it.  And I loved that CF doctor is so thoughtful and loving to her patients.

Besides two happy children, one helpful husband and an overall beautiful day, there are more reasons why today's clinic appointment went to well:  Bennett's weight went up, bringing him to the 38th percentile (the highest he's ever been while being followed by the Children's CF staff).  Dr. C was very pleased and had no complaints about his weight.  Everyone is particularly delighted as he has been in school for quite some time now.  This tells us that he is eating well at school where he must eat independently!  (Hard to believe only a year and a half ago we were at a feeding clinic for a child who wouldn't eat!)

Our last bit of good news came from Bennett's chest Xray.   The left X-ray is Bennett's chest x-ray from last year.  The right xray is from today.  It turns out that there is a tiny bit of change between the two but not much.  Brian and I are learning, appointment by appointment, how to read chest xrays.  From what Dr. C explained today, she is looking for tiny mucus plugs in his airways and clear/fuzzy lines around his organs near his chest.

Clear lines around the organs demonstrate less lung damage.  Fuzzy lines show some lung damage.  It was hard for Dr. C to find any mucus plugs but she did notice a slight change from a clear line to a fuzzy line around Bennett's heart in the middle of Bennett's right lung.  So, this could indicate some mild airway damage.  Dr. C recommended that we try some hand percussion therapy (aka beating our child's chest) around the middle of his left lobe to see if we can unplug the area filled with mucus.  But, she also wasn't too worried.

Dr. C said that Bennett's lungs, for a child his age with Cystic Fibrosis look "pretty darn good!"  So, while we are going to increase some chest physiotherapy to see if we can help his middle left lobe, we are so happy to know our son's lungs are looking GOOD for now!   It's hard to accept seeing any change in his lungs in the course of only one year.  But we are so thankful it is so little change.

We don't take good news for granted.  In fact, one of the specialists who later stopped by our room to check in on us said, "I know you probably don't need me today....but we don't get good news in this clinic all that when we do, I want to stop by.  So excited Bennett is doing so well!"

SO ARE WE!!  So thankful for thoughtful doctors, clear Xrays, helpful brothers, involved fathers and brave little boys!

23 August 2012

The beginning of School

After lots of summer traveling, we are finally back at home and settled in for the school year to begin.

The boys began school last week and are *loving* it!  Oliver has started Pre-Kindergarten.  Bennett is in the 2 year old class.  (He turns three at the end of September.)

I was stressed out last week when I learned that, of the children in Oliver's class last year, Oliver would be one of only 2 children to be moved to the other Pre-K class in his school.  I'm not exactly sure why they chose to keep the rest of the 7 children together in one class, but there was a momma-moment of distress when I felt my child had been possibly left out or singled out.  I was sad that he wouldn't be with his friends.  I was anxious that he wouldn't mesh well with the other class.  I was fearful that of the two teachers, the one he was being placed with would not be the best for him.

But, after a series of conversations, I rested and came to appreciate that while change is hard, change is not bad.  There are tons of little boys in his new class that he will likely love playing with.  Oliver's teacher is very experienced, capable and willing to work with me to meet his needs.  Oliver is adjusting to school slowly.  But, overall, is doing well.

Bennett, on the other hand, continues to amaze me.  He went off to his first day of school with no tears at all and absolutely loves school.  Bennett is very outgoing and loves to be around people.  So, he thrives at school and is frankly very disappointed he isn't allowed to go to school all five mornings like Oliver gets to do.  Bennett is particularly enjoying his new "big boy" status wearing his uniform and going to school like "big boys" do.

Add to his "big boy" status is that he has been using the bathroom on the potty like a big boy.  His preschool class focuses on potty training independence and has seen Bennett succeed in that area.  For a CF mom with CF diapers, I couldn't be more pleased!!

I have been asked recently, "so, now that the boys are in school, what are you going to do with your time?"  Ah, rest.  I'm going to rest....  And I'm going to catch up on all the things that have had to be put on the back burner for the last almost-three years due to CF.  I'm getting to do some little volunteer work, which makes me happy.  It feels good to have small adult projects I can focus on.  In addition, I have been attacking closets, messy drawers and the underside of beds that have not been organized in a looooong time.  It feels good to begin to sort through my life a little.  The last few years have been a blur, but I am started to catch up and I love it!

In the meantime, Brian is beginning his first year of dissertation writing.  He is making great headway and I look forward to see him finish this very challenging process in the next year and a half.  His dissertation is on the book of Mark and the passion narrative.  Brian has really enjoyed his time at Baylor.  While it's a bit different to not be in class anymore, I think he's glad to start dissertating.  He'll teach a class next year and then begin looking for full-time jobs.

While I can be tempted to fill my newly open schedule with lots of activities, I am trying to take integrating things back in my life very slowly.  Cystic Fibrosis is always lurking in the background.  So, we have to be able to throw on the brakes very quickly should Bennett need extra care at any point.    But, as long as things continue as they are, we will continue dreaming of a life where CF is not the focus.  And I'm ok with that! :)

17 August 2012

First Day of School 2012

Bennett, Preschool - 2's, 2012

Oliver, Preschool - 4's, 2012

Loving Brothers

Ready for school!  (Bennett insisted he keep his "bad man" toy with him in the picture.  I think the toy came from McDonalds years ago but he loves it.)

Two little boys.

A family picture on the first day of school!  This is going to be a great year!

16 August 2012

Meeting with Representative Flores in Texas

I had the great honor to meet with Congressman Bill Flores this morning to talk to him about Cystic Fibrosis.  Congressman Flores is the U.S. Representative for the 17th Congressional District of Texas (Waco/College Station area).  

What a gift it was for me to be able to sit before my local lawmaker and share with him our journey with Cystic Fibrosis.  My goal was to tell our personal story and to communicate the CF community's need for the continued strengthening of the FDA and protection of funding for the NIH and the NIH's National Center for advancing Translational Sciences this fiscal year (to ensure that new treatments for serious diseases like Cystic Fibrosis are reviewed and approved effectively, efficiently, and without delay).  

While I had a chance I also asked Rep. Flores to join the CF Caucus, which he did in a heartbeat.  It feels so good to have another advocate in Washington, D.C., for those with Cystic Fibrosis.

Rep. Flores is a genuinely sweet man who took to heart Bennett's story and the fact that we do not yet have a cure for our little boy.  He looked me directly in the eyes when I talked with him and never seemed distracted.  At one point, he communicated he felt emotional hearing Bennett's story.  He knew a little bit about CF before I walked in but the one thing that seemed to surprise him the most was that Cystic Fibrosis is fatal.

As nervous as I was to share our story, Rep. Flores listened intently and recognized the significance of what I was sharing.  He said, "How hard it must be to take all this information about your child and make it into something sterile to share."  It felt so validating to hear someone articulate that they understood that while I was sharing my son's story in a very informational and direct way, the truth is that it is personal and heartbreaking.  

In fact, I had an emotional moment afterwards when I recognized, no matter how "mundane" a chronic disease Cystic Fibrosis is, it's really hard to share with someone how desperately I want my child to live and how scared I am to face the fact that, without a cure, his life will be shortened.

I had an opportunity to get a picture with Rep. Flores before I left.  I plan to put it in a scrapbook for Bennett so that, one day, Bennett can be reminded how hard his Momma and Daddy worked to find him a cure.  We will stop at nothing.  We will raise money.  We will raise awareness.  We will speak with politicians.  Whatever it takes.  

As Rep. Flores and I ended our 20 minute conversation, the Congressman said to me, "Hug Bennett for me."  So, later, I did...

Today, I am thankful for my little boy who looks incredibly healthy and for the lawmaker (and his and his sweet staff members) who I met today who will work hard in our nation's capital to help us find him a cure!

P.S.  For other CF families interested in meeting with their U.S. or State Senator and/or Representative to share their story, visit here to get involved:
etInvolved/Advocate/EveryBreathCount/.  The CF Foundation makes is super easy.  All you need is a story of how Cystic Fibrosis affects your life and the willingness to meet with your lawmaker.  What a rewarding experience it is!

13 August 2012

Why so quiet?

The blog has gotten quiet.  I mean qui-et.

...that's because things in our life with regard to Cystic Fibrosis have been going so goooood!

We do treatments.
We give enzymes.
But otherwise, Cystic Fibrosis is not even something we are having to think about much these days.

Bennett's weight is looking great.  We haven't been to the doctor in a few months.  And we are luckier than many of our healthy friends!  We haven't had but one summer cold all summer long!

And it's awesome to feel great!!  

We take not even one day of good health for granted in our family.  It's wonderful...
...the kind of I-just-got-done-with-the-flu-but-now-I-feel-so-much-better wonderful!!

Clockwise: Oliver makes a mask at school, says it's an "Angry Bird"; Bennett sports a chocolate donut beard; We happened upon a free show at Barnes and Noble, clowns are very very funny at 2 and 4 years old; Bennett enjoys his new glasses at Target, even though he can't see a thing.

02 August 2012

Friends with Tshirts

It has been lots of fun to see our long distance friends in their Bennett's Brigade tshirts.  Here are just a few of our friends wearing Bennett's shirt...

 This is Emily and Matt, Bennett's godparents.

This is Mackenzie.  She and Bennett have the same CF mutation (so she and Bennett are patiently waiting for the same medication to cure their disease).  I'm a huge fan of the entire Jobe family and greatly appreciate my friendship with Christy, Mackenzie's mom who is a sweet and thoughtful CF Mama.  I started reading about Mackenzie's CF journey around the time I learned of Bennett's diagnosis.

This is Cade.  He is Bennett's age and lives with his Mama and Daddy near the town I grew up in, so we have mutual friends.  While Bennett and Cade will never actually get to play together, Holly and I had a chance to meet up at the CFF's Volunteer Leadership Conference last February.  I love her.  A few months back Cade and Bennett had a CF appointment at the same clinic on the same day at the same time.  She and I snuck out of our patient/clinic rooms to hug and say hello.  It felt rather scandalous, really. :)

This Sara, our Norwegian friend, whose Momma I wrote about here.  Sara is a about Bennett's age and has Cystic Fibrosis, like he does.  I really love knowing Hanne Linne and hearing about how Sara's CF care is different in Norway than it is here in the US.  It's particularly fun to know Sarah is wearing Bennett's shirt halfway around the world! :)