01 March 2019

An update on Bennett - March 2019

Bennett had his quarterly CF appointment last week so I thought I'd share how he's doing health-wise.  I also thought I'd share how he's doing all around:

First of all, Bennett has blueish green hair these days.  It's starting to fade but after asking consistently for at least a year to dye his hair, I finally relented, shortly after family photos were taken.  Santa brought Bennett semi-permanent hair dye.  The directions said it would wash out in anywhere between 5-25 washes.  What the directions didn't say is how often a 9 year old typically washes their hair when they don't want the dye to come out. Ha!

On one hand, I'm so glad I finally gave in to his very simple request.  A friend of mine made the point that allowing him to change his hair color was a great way to give him control over his body, which I hadn't thought about but I agree.

On the other hand, I didn't realize that, in order to put the blueish green hair dye on blonde-ish brown hair, you have to bleach it first.  Bleach: what a terrible thing for CF lungs to inhale!  Nonetheless, I was already committed at this point when I realized it, so I grinned and beared my fears and went forth.  I told him, though, I didn't imagine a time when we'd be doing this again. ;)

Last week, Bennett went to see his CF Team at Dallas Children's Hospital for his quarterly CF appointment.  Bennett gained two pounds in 3 months so his GI doc was very happy.  Gaining weight is very difficult for people with CF.

We are currently giving Bennett 3 tube feeds daily, that's over 1500 calories and he's eating on top of that, which is wonderful.  His ability to gain weight is a good sign he is staying healthy.  He's still low in BMI so he needs more calories and more weight gain.  But, for now, he's at least on track with his growth.

Bennett's lung health is also looking good.  His PFTs were 92%, down from 95%.  But, considering that he hasn't gotten sick this winter so far, his Pulmonologist gave a good report and said his lungs sound good.  Bennett's throat culture results shows he continues to be free of psuedomonas and MRSA, for now.  We're starting back up nasal rinses and Flonase due to headaches, which may indicate sinus build up.  But we are hoping we can hedge that off early.


Bennett is doing well in school.  This picture shows him sitting next to the board he made to demonstrate his work in robotics.  You can see he's wearing his feeding bag.  Bennett is very open about his CF at school.  He sorta has to be open, considering he requires a tube-feeding each day at lunch.  We are grateful that the school is more than willing to help us daily keep him on track with his weight gain!  

Oliver and Bennett (and most recently, Avonlea) started a new school this year and it's going super well.  They are growing in incredible ways.  Acton Academy is a bit of a blend of homeschooling and a gifted/talented program.  Their school is very hands-on and self-directed, which requires a lot of motivation to learn on their part.  Thankfully, since the school has designed the learning process to be so much fun, my kids have very little problem with motivation.  In fact, they beg me to drop them off at school at the first possible moment and to pick them up at the very last moment of the day.

Their school year is split in to 7 different sessions.  In addition to the core subjects of Math, Reading and Writing, each session at school has a project-based focus.  During the first session, they focused on entrepreneurship.  Their second session was focused on learning about Ancient Greek culture.  Their third session was all about Robotics.  Their current session is about Plants and Gardening (they were making plant cell models out of Play-doh earlier this week).

As naturally awesome as this session is, gardening at school has presented challenges for Bennett due to CF.  Many of the bacteria, yeast, molds and allergies that Bennett's CF lungs are susceptible to getting live in soil and decaying things.  

These bacteria, yeast, molds and allergies can easily get kicked up into the air when dirt is moved around.  And Bennett can easily breathe in these tiny particles into his lungs, which can cause havoc in his body.  If and when Bennett gets a bacteria in his lungs, it will likely require weeks on IV antibiotics and/or inhaled meds and may include weeks in the hospital.  So, we are very hesitant to risk this happening.

I hated having to explain to the teachers (who are actually called Guides at Acton) that Brian and I believe there's no amount of playing in the dirt or near the dirt that is good for Bennett.  Out of abundance of caution, we also don't let Bennett play outside when the lawn is being mowed, either.  

Not all families with CF believe it's necessary to withdraw children's playtime in the dirt - "children with CF shouldn't live in a bubble" is often an argument - but, based on what we know about the risks, Brian and I feel more comfortable letting him learn a bit more hands-off during this session.

It's disappointing that Bennett can't play in the dirt.  But, we reason that we work too hard to keep him well, to do something that we know has a risk to undermine all of the work we've done so far.  I'm thankful that the kid's school partners with us and is willing to do whatever it takes to keep Bennett's lung health optimal for as long as possible.

The last thing I thought I'd share is that we just started Bennett in twice-weekly sports training class for 7-11 year olds to see if he can improve some of the issues that showed up on Bennett's most recent physical therapy assessment.  

Although this new sports training class is an added expense and means "one more thing" to Bennett's week and our family's schedule, we are trying to focus on Bennett's long-term health goals and believe that doing so will, not only build his core muscles and improve his lung health, but also teach him that being physically active is caring for himself.  

Thankfully, Bennett really enjoys working out and has made new friends.  A new friend said to his mother other night about Bennett; "he's a lot of fun." 

I'm so glad to have received a good report on Bennett's health and to breath a sigh of relief for another 3 months.  Brian and I are incredibly proud of Bennett's resilience and his willingness to try new things!