Cystic Fibrosis and Covid 19

Today we're all realizing how interconnected we are.  We may live thousands of miles apart, but our lives are still affected by people across the world. This really hits home when we have to isolate ourselves from friends and family to prevent the spread of germs. 

I really didn’t care too much about germs until Rylee was born. Our three children before her crawled all over the floors, used utensils that fell on the ground, and rode in grocery carts without me thinking twice.

Rylee was diagnosed with Cystic Fibrosis I learned a lot about bad and good bacteria, infections, and antibiotics. We’d be in public and I would see children crawling all over the floor. I would think, “Oh my gosh, Rylee's definitely not going to be crawling on that floor!” Bottles would drop on the ground, “No, no we need to give her a new one.” Children were curious and wanted to see her. I wore her a lot. I still do. We stayed home and didn’t adventure out as much. She didn’t go to the nursery at church until she was almost one. 

Rylee is supposed to wear a mask any time she goes to the doctor to avoid bacterial infections. Some parents also wear a mask so the children don't feel singled out. 

I had a thought a couple months into our CF journey: What if everyone that didn’t have CF had to wear a mask?  

All CF people need to stay 6 feet away from other CF people so they don't transfer bacteria between each other. What if everyone stood 6 feet apart?

After Rylee was born we washed and sanitized our hands much more thoroughly, to the point that my hands cracked and bled. What if everyone had to wash and sanitized their hands to this extent? Sorry, I really have no advice on how to make your hands feel better.

CF friends chat with eachother over online platforms everyday. They've done this for years. What if everyone had to communicate with their friends and family online through FaceTime or phone calls?

At CF conferences only one CF person is able to be present. All other CF members attend online. What if educational conferences were all available online? How many people would be able to attend?  

Because of Covid-19, we're all living in a world like the one that many CF patients know.  As Rylee's family, we want to thank you for taking the extra steps to keep our family safe!

Things Are Always Changing

Last time I wrote I was informing you all about our findings about me being diagnosed with Cystic Fibrosis. Well, turns out I don’t have CF. We found out my two mutations are on the same side of the allele. Which means Rylee actually has three mutations. How did we find this out? After getting Garretts genetic screening back we found out he only has Marty’s mutation. This is strange because he should have received at least one of my mutations being that we thought I had CF. After receiving all of the kids results it was conclusive that Garrett’s results were true and I don’t have CF. I’m thankful but at the same time I want answers.

About 5 years ago I was diagnosed with Crohns/Colitis. Then in December 2018 I started having a flare up. I FINALLY went to the doctor (different doctor then the first), around March and was diagnosed with Ulcerative Colitis. After trying many diets and drugs we’re still trying to figure out how to get things under control. I just want to feel better.

Life. It goes by so quickly but when you don’t feel good time goes by so slowly.  This past summer was hard. It was good but difficult. Haylee asks me regularly, “Mama when do you think you’ll feel better again?” My answer is usually, “I’m not sure but I hope soon.”

Friends. Thank you so much. Thank you for listening and watching the kids often. So many doctors appointments and tests. 

Marty. My amazing sidekick. Thank you for being you.

 

 

Our CF Journey

Me with my mom on my birthday 10/11/1981

"You made all the delicate, inner parts of my body and knit me together in my mother’s womb." Psalm 139:13

I sit here in awe! He had a plan for me long before I was even born. As I sit here thinking about Mother's Day I'm so thankful God has given me four amazing children on earth and one in Heaven.

The life events that have happened over the past 37 years of my life all bring me to a beautiful story and the most amazing part is that it's not finished.

Rylee on her birthday 10/12/2018

Seven months ago today we welcomed a little girl into our life and we would soon learn she had something called Cystic Fibrosis. The day we found out, just seven days after she was born was overwhelming to say the least. Marty received a phone call from the pediatrician's office saying they found two mutations in her newborn screening test that could possibly be Cystic Fibrosis. At the hospital they pricked Rylee's foot and dropped some blood on a small piece of paper. Who new that these few small drops of blood would have such a huge effect on our life? Rylee was born with this. It's something that doesn't go away. Something that was carried to her from Marty and me. It's in her biology. It's in her genes.

She has two specific mutations of her CFTR gene which prevents the chloride in her body from moving back and forth and causes a sticky mucus to build up in various organs like the lungs and digestion system. CF causes a wide spectrum of various symptoms in CFers. For Rylee, she's pancreatic sufficient so her body absorbs nutrients. A lot of CFers have to take enzymes before they eat, to allow the body to absorb the nutrients. Based on one of Rylee's gene mutations she's able to take a very special medication that fights the actual build up of mucus. Everyday she takes a little salt and vitamins with her milk and we do chest physical therapy (CPT) on her every morning and night. She goes to clinic every two months. At these visits she meets with her pulmonologist, physical therapist, dietitian, nurse, pharmacist, and social worker. She also sees the pediatrician for her continued checkups and to keep her updated on her immunizations.

Over the past months we have learned so much about the words Cystic Fibrosis. Some days I want to just close the door and not take in any information and I do that but others days it's a huge pile of mud that I can't seem to get away from.

Rylee is so special to us, she is a miracle from God.

God places various people in our walk for a reason. Sometimes we never know why but other times we do!

About nine years ago I met with a pulmonologist because I had a nasty cough that I couldn't get rid of and I wanted to know why. After meeting with him many times and trying various treatments I honestly left without any answers. My cough continued and several years later I developed GI issues.

About two years ago I went to Brody's seventeen week ultra sound and his little heart stopped beating around fifteen weeks. Two years ago today I walked into a hospital room and delivered him into the world. We had all the tests done. Everything came back normal. I remember telling Marty weeks later that I thought maybe something was wrong with me. Maybe I was meant to learn something from Brody's passing. Pregnancy related issues are consistent with CF. 

Which brings us to two months ago when I met a special person while we were visiting a hospital. I was telling her about this cough that I've had for years and my gastrointestinal issues. She told me that they treat some people that only have one mutation. They have a mutation that's symptomatic. After hearing this, I went to Rylee's CF team and asked if I could have a sweat chloride test done. This is pretty much the gold standard test to see if you have CF. I scored a 47. Twenty-nine and below is unlikely you have CF, 30-59 you have a possibility of having CF, and anything 60 and above is consistent with CF. After getting this number I honestly was so relieved to finally see that my one mutation was probably causing my health issues. We decided to take it a step further and get a genetic screening test done just to make sure I didn't have another mutation.

We found out just two weeks ago that I do have another mutation. I have Cystic Fibrosis. Yes, it's crazy to think I've lived my whole life not knowing that I was carrying this in my biological makeup but I'm so thankful that we're now finding out. If I knew nine years ago, my life could have been much different. Would I even be celebrating Mother's Day now? These are thoughts that have run through my mind over and over in the past weeks. I think about all of the doctor's that I've seen over the past nine years. Pulmonologists, gastroenterologists, obstetricians, primary care physicians, and none of them were able to give me answers for my issues until now. I have an answer finally and we couldn't have found out at a better time in our lives.

In one week, my family and friends will be walking on a team named Rylee's Sweet and Salty Crew for the Cystic Fibrosis Foundation! Each CFer will have a special shirt designating them as having CF. Rylee will have a shirt and I will have a shirt now too. We are a team!

We are so appreciative of all of our family, friends, and complete strangers that have walked the past seven months with us! Your love, your hugs, your prayers, your listening ears, your help with the kids, your questions, your smiles, your meals, your positive words, none of it has gone unnoticed. We thank you so much! So from my heart to your heart if you haven't heard that you are loved today, we love you! Thank you so much for loving us. 

Pregnant with Wyatt

Pregnant with Haylee

Pregnant with Garrett

Pregnant with Brody

Pregnant with Rylee 

Happy New Year from the Hendersons!

Happy new year from Marty, Shawna, Wyatt, Haylee, Garrett, Bozeman, and Casy!

It has been a terrific year for us.  After spending a little extra time in the womb, Garrett was born on May 10, making us a family of 5 and tipping the balance so that the children outnumber the adults.  Fortunately for us, Garrett has been the easiest and happiest child yet.  He can sit and smile or bounce in his jumper for hours.  He is growing fast and doing an army crawl now.  Wyatt and Haylee call him "Baby Garrett" and have warmly welcomed him to the family, although sometimes for Haylee that welcome takes the form of a heartfelt slap on the head.  Shawna and I are playing zone defense now and getting by, but when Garrett starts walking it's going to be a whole new game.

Shawna has had a busy and productive year.  She has continued restoring old furniture, sewing clothes for herself, the kids, even Haylee's baby doll, teaching the kids how to swim, bike, play, and not to mention birthing a child mid-year too.  I'm not sure how she does it all, but she has somehow managed to maintain her sanity while taking care of 3 kids and a husband, and she looks just as young and beautiful as ever.

I (Marty) have had a great year too.  When Garrett was born I got to take a month of parental leave from work to help Shawna with the kids.  I used to think that I worked hard at my job, but that was before spending a month as a stay at home dad!  Male pattern baldness was initated almost instantaneously.  I was excited to join a tennis league this summer for the first time ever.  My excitement was slightly marred by the discovery that only one person other than myself joined the league, but on the bright side I did emerge undefeated.

Prior to Garrett's birth, Shawna and I dropped the kids off with Grammy and Grampy and enjoyed a trip to New York, our first trip alone since having kids.  We had a fantastic time seeing historic sights, monuments, and a show.  We also took our first trip back to TX since we moved to KY, and the kids came along for this one.  Aside from our van breaking down and a frantic dash through the airport, we had a wonderful time, visiting many friends and enjoying our favorite Austin eateries.

Wyatt turned 3 this year.  He has continued preschool one day a week that Shawna and the other moms take turns leading.  He is exuberant about lots of things that we often take for granted, like checking the mail, drinking "special drinks" (chocolate milk or apple cider), and building legos.  He has become an avid bike rider and puzzle worker.  We had a lot of fun teaching him to ride his big boy bike this year with pedals and no training wheels.  While we were holding him up he would get super excited and say "Look, me doing it all by myself", but then we would let go and he yells "Hold me, hold me".  Within a couple months though he has become an expert and is now riding all over the yard and doing stunts.

He joined an indoor soccer league this year for 3-4 year olds.  The first couple games were marked by many tears, but this eventually gave way to excitedly running around after the ball and a some solid possessions.  By the end of the game though, he usually needs a pep talk from Dad as he starts lollygagging and playing with his imaginary binoculars.

Haylee is a little firecracker.  She is 2 years old now, and loves getting into trouble.  You know she is about to make mischief when she sticks her tongue in her cheek.  In the unending battle to see whether more food ends up in her mouth or on the floor, she has gone undefeated against Mom and Dad this year.  She may be trouble, but she is a real cutie and always wins us over with a hug.  She likes to repeat everything Wyatt says and she enjoys clapping also, particularly when she is proud of herself.

Haylee's new favorite phrase she has adopted is "Stop doing that", which she has a cute way of saying.  She applies this command in all sorts of circumstances, like when Wyatt is bothering her, or when Mommy is singing, or sometimes for no particular reason at all.

The kids generally get along and play well together.  They like to play hop on pop at night.  They also play "Fat Penguin", a game they made up where they stick both feet through one pajama leg and then waddle around calling themselves fat penguins.  We don't know where they got it, we just go with it.

Casy our cat continues to take daily beatings from the kids and never wields a claw or teeth against them.  But when she wants food she is more than happy to gnaw my feet relentlessly.  Bozeman our dog is doing well at 14 years old.  He has finely honed his ability to pick out the person in the room most likely to drop food on the ground and cling to their side.  He always roots for Haylee in the aforementioned battle over food on the ground vs food in the mouth.

All in all, we are doing great and looking forward to 2017.  Merry Christmas and Happy New Year to all our friends and family!

Love,
The Hendersons

Garrett Vincent Henderson born this morning!

After several bouts of false labor over the last month, and 3 trips already for Grammy and Grampy to come watch the kids, Shawna finally went into true labor around 2am this morning.  We checked into the hospital around 6:30am and by 7:53 Garrett was born.  He is a healthy boy and came out crying.

Shawna toughed it out like a champ and delivered him with just a couple pushes, while I tried to follow Mama's orders and not get in the way.  Even though he was cooking for 40.5 weeks, a week and a half longer than his siblings, he is a lightweight by comparison, clocking in at only 6 lbs, 15 ounces.  He is 19 inches long.

Mother and son are doing well.  Wyatt and Haylee enjoyed meeting their sibling and don't seem to be too distraught when I tell them they have to start pulling their own weight now.  Garrett's middle name is taken from Shawna's dad, Vince (aka Papa).  Garrett has nursed and taken his first bath, and is now getting some rest after his big day.

Haylee Quinn Henderson born this morning!

We are pleased to announce that our daughter Haylee was born this morning at 5:52 am.  Shawna started having contractions yesterday morning, and after 20+ hours gave birth to Haylee.  Shawna toughed it out like a champ!

After some kangaroo care, Haylee clocked in at 19 inches and 8 lbs, 2.2 oz, a healthy girl.  Mother and daughter are both trying to get some rest and nutrition now.  Haylee's first name is derived from her great grandmother Ruby Lee and her middle name from her Aunt Ginny.

Wyatt quickly realized yesterday morning that all his worst fears were about to be realized, and he clung fiercely to the life he's known.  He's worried that mom and dad will now be solely focused on his baby sister, as I've warned him for months, but I'm sure he'll come around when he meets her shortly and sees how beautiful she is.

My Night Watching Wyatt

On Monday nights I come home from work a little early so Shawna can go to yoga.  I wrote this entry after watching Wyatt for 2 hours last week and can only imagine that this is what it must be like most of the time for single parents.

I came home from work at 5:30 to see Shawna off and take charge of Wyatt.  The evening started off on a good note.  Wyatt had been kind of fussy and had a few falls during the day, but he was very happy for Daddy to be home.  He gave me a big hug and patted my back before saying goodbye to Mama.  Wyatt had a late lunch that day, so I let him play for a while before fixing dinner.  We played ball, he had his soft soccer ball and I had the 42 inch beach ball.  We took turns throwing them to each other and playing chase.  Then I let Wyatt play on his own for a while as I watched from the couch.  He kept on climbing in his big duplo box to try and get up on the window sill.

By 6:15, he was hungry so I started prepping dinner while he waited relatively patiently at the kitchen gate (by prepping dinner, I mean heating up leftover pizza).  Wyatt had pizza and fruit, with some cake for dessert.  Bozeman and Casy were both very impatient about getting their meals, either by barking or biting my feet.  Eventually everyone was fed and me and Wyatt had time to sit down and enjoy dinner.  By the end of the meal, he was pretty messy with a combination of pizza, juice, and cake covering him, so it was straight to the bath.

To change things up a bit, I played some music while Wyatt was in the bath.  Wyatt was into it and started grooving in the bath tub.  I let him play for a long time, evidently too long judging by what happened next.  I was checking the music on the laptop and looked back into the tub to see 2 turds floating in the water.  I could hardly believe that those giant turds came from a 15-month old baby butt.  From here, the evening went into disaster recovery mode.  I fished out the turds with my hands and toilet paper, flushed them, and started draining all the scattered poop fragments.  It was of course a difficult task to keep Wyatt from playing with them while they circled the drain.

At that point, I switched to shower mode and started hosing him and the tub down.  When he was thoroughly rinsed, I brought over the soap and scrubbed any part of him that I thought would have had significant fecal exposure.  Moments later he was dry and deposited outside the bathroom to play while I finished cleaning up.  I had scarcely begun to wash the bath toys when I realized it was a little too quiet out there.  I looked and saw that the kitchen gate was still open from dinner.  I ran to the kitchen to find Wyatt scavenging the pet food cabinet, trying to get into Bozeman's treats (I guess Wyatt wanted to try one of Bozeman's cookies for himself).  I removed him from the kitchen and closed the gate, thinking he must now be barred from all forbidden areas.  As I returned to cleaning the bathtub, Wyatt stumbled back into the bathroom carrying the dog food bowl.  I took the dog food bowl and freed up his hands to grab the hand soap and stick the spigot in his mouth.

After finally finishing the bathroom cleaning and rinsing the soap out of Wyatt's mouth, I thought that nothing else could go wrong this evening, but I underestimated our son's penchant for mischief.  All this time he had still been running around naked since his bath, and he managed to squeeze out a little pee on the laminate floor.  I narrowly avoided stepping in it, but it was clear that Wyatt's footprints had already been through it.  After mopping up the pee and dressing Wyatt, I had just enough time left in the evening to ponder how much I should tell Shawna when she got home.