Young Fives

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The day after Labor Day was Lucas’s first day of school for this year. He is attending a half day Young Fives program at an elementary school in our district. A few weeks before school started he told me he was so excited for school to start! I wasn’t sure I believed him. Up until now, he has been very reluctant to embrace any changes in his life. However, the first day of school dawned, and he really was ready to go!

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Our sweet, eager boy on his first day of school!

Jaime drops Lucas off at school each morning, and after they were packed up and on their way that first day, I headed back downstairs to start my morning treatments and therapy. I was anxiously awaiting a phone call or text from Jaime to hear how it went.  About 20 minutes later I got this photo:

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First-day-of-school pasta necklace.

Lucas had walked right in, sat down, and got right to work on a pasta necklace. No tears, no clinging, no nervousness. Just a cheerful, “Bye, Dad!”

When I picked him up three hours later, he was all smiles and excitement. And he is still all smiles and excitement three weeks later. He is eager to go each morning, and he’s been on time every day. Well, almost every day. His morning chauffeur overslept once and they were a few minutes late. Lucas tells me all the time he loves school. We couldn’t be more pleased!

Being five, Lucas doesn’t give me a detailed report after school, but he will tell me one or two things about his day on the way home, and a few more details surface as the afternoon wears on.  Here’s what I’ve gleaned so far:

  • He adores his teacher. Apparently all the kids think she is the “awesomest.”
  • It took his teacher less than a week to figure out his favorite color. It is tradition for her to locate the orange in his outfit each day.
  • His favorite special is gym because of all the running around. No surprise there. It seems they play freeze tag a lot.
  • His best friend in the class is a boy named Beckett. They play chasing games at recess together every day. I’ve noticed that Lucas and Beckett are the only two kids dripping with sweat when I come for pick up.
  • He has never once used the bathroom at school. He disapproves of public restrooms and the classroom bathroom is no exception. Thankfully he can get through three hours without going.
  • Lucas loves playing with his own classmates but doesn’t like it when additional classes are on the playground. Apparently there are some loud girls in the other Young Fives class. He doesn’t approve.
  • The students have to sit “criss cross applesauce, pepperoni pizza sauce” during circle time. Some things never change (although we had a much more boring and politically incorrect name for it).
  • The class did a unit with Jan Brett’s book The Gingerbread Baby which Lucas loved. Being a teacher myself, I happened to have a copy in my office. I brought it up and it found its way into our bedtime story lineup. It’s a very long book.  Jaime is still mad at me.
  • I heard Lucas quoting a line from Froggy’s First Day of School by Jonathan London after his teacher read it the other day. I have that one in my office too. I plan to bring it up after I’m sure Jaime has forgiven me for The Gingerbread Baby. 
  • Lucas hopes to be in Young Fives for a very long time. Jaime told him one morning that it was his last day of school (meaning for the week) and Lucas got teary. He was relieved to hear there were still approximately 175 school days left.
  • So far there haven’t been any traditional worksheets from class, but he did bring this home from his math center:
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Lucas’s very first worksheet.

Okay, so he had seven stickers for the number six and his name could use some work, but we’re still pretty convinced he’s a genius 😉

We are so pleased with how this year has gone so far, and proud of our big boy for making such a smooth transition to five school days a week. Jaime was exhausted after the first few days of getting the two of them out the door on time, but they’ve settled into a routine and it’s gotten easier. And for me, the schedule is heavenly. I can sleep until 8:00 most mornings. I then have three hours after they leave before I need to head out. I can get through my treatments and therapy in peace. By the time I’m through those and I’ve eaten breakfast and gotten ready for the day, I usually have 45 minutes to play with. It’s great to get a load of laundry folded, some tutoring preparations done, make some phone calls, or run a quick errand solo before I’m reunited with my bundle of energy. And once he’s back home, we still have plenty of afternoon hours for our adventures. It’s great. Young Fives. We all love it.

The Best Part of Waking Up

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Morning is my least favorite time of day. I’m not much of an early bird to begin with, and cystic fibrosis has not increased my love for mornings.  I struggle the most with my health first thing. After lying in bed for eight or nine hours, mucus pools in my lungs and I start out each day with a series of breathing treatments and respiratory therapy to help me clear my airways. I take an inhaler to dilate the airways and inhale a saline solution to help mobilize the mucus. I blow into a device that vibrates and shakes my lungs in an attempt to dislodge the congestion from the airways and move it forward so I can cough it out. I inhale a medication designed to help thin the mucus and take a steroid inhaler to control the asthma that I have in addition to the cystic fibrosis. Sometimes I jump on a small trampoline to further loosen the congestion.

Even after doing all these treatments, I can expect to continue coughing on and off for a few hours each morning. First morning coughing is often almost violent in nature and can lead to gagging, vomiting and bad headaches. I sometimes injure muscles in my back or chest while coughing.  I don’t really feel human until I’ve been up for several hours, completed all my treatments, cleared my lungs as best as I can, and had a few cups of very dark, very strong coffee. (No Folgers in this girl’s cup!) Yeah, not a morning person.

I was scrolling through my photos the other day and I started to notice something. I have a lot of pictures taken in the morning. Most of them show a messy-haired, animated little boy doing what he does best–lighting up my life. Lucas is not a morning person either, not in the strictest sense at least. He’d prefer to stay up late and sleep late. But most days he wakes up ready and raring to go, full of joy, enthusiasm and spunk from the minute he bounces out of bed.

Today I’m feeling thankful and encouraged by the gift that is my son and grateful for the joy that Lucas has brought into my mornings. I may feel crummy first thing. I may cough and struggle, but one look at his sweet, disheveled, pajama’d self and I can’t help but feel happy. He’s definitely the best part of waking up!

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Good morning, Sunshine!

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One tissue for you, ten tissues for me.

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This makes it a lot easier to breathe, right Mommy?

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It’s never too early for a dance party…

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…or for dinosaurs and songs.

Early morning stories and snuggles.

Early morning stories and snuggles.

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The world’s greatest pajamas.

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We’ll take care of that hair after breakfast. Maybe.

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My morning joy.

Four Years Old

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It’s hard to believe so much time has passed since my last birthday post for Lucas. But sure enough, here we are, one year later, and my baby is now four years old. It was fun to go back to read what I wrote about him last year–some things have changed and some things are the same. He still loves the color orange, he still loves snuggles, and he still has strong emotions. But he no longer pays much attention to pick up trucks, he is less attached to his routines, and I don’t remember the last time we sang the ABC song (although I remember the last 500 times we sang Old MacDonald). He’s still the same sweet and exuberant little boy and we are thankful for him every single day. Here are some special things about Lucas at age four:

  • Lucas sings a lot! Many times you can recognize a tune but he often changes the lyrics to suit his needs. He sings while he plays, he sings on the potty, he sings in the tub, he sings in the car, he sings at the dinner table…you get the idea.
A lively rendition of Old MacDonald in the car

A lively rendition of Old MacDonald in the car.

  • His language cracks us up on a regular basis.  He uses some rather adult phrases such as, “Tell me about it!” or “Who knew!” or “That’s ridiculous!” He likes to be funny and the other day, he asked me, “What are we doing now, Boss?”  He is pretty creative when it comes to names.  He’ll see a picture of a child and ask, “What is her name?”  I might guess “Annie” or “Laura” and he’ll say, “No, that’s Bamale.”  He has a pet mouse he named “Shengali-Shengala” and a dinosaur he named “Urna” with a hard accent on the “Urn”, like someone just punched you in the stomach.
  • Lucas currently has two favorite bedtime books, both written by Tony Mitton (Down by the Cool of the Pool and Dinosaurumpus).  He can recite them both and corrects me if I get even one word wrong (“sound Mommy, not noise!”)
Reading "Dinosaurumpus" before bed.

Reading “Dinosaurumpus” before bed.

  • His favorite thing in the world is still running and chasing. I gave up the no-running-in-the-house rule long, long ago.  It was a futile fight. I’m still holding my ground on the no-screaming-in-the-house rule but it gets broken regularly when chasing reaches a certain level of glee that can’t be contained.
  • Lucas loves imaginary play. He acts out stories and songs from TV shows and books. He mixes and matches the plots. If he doesn’t have the right toy or character he happily substitutes something he does have.  (No Mommy, that’s not Daniel Tiger, that’s Rapunzel!)
Don't have the right costume?  No problem!  I'll wear a grocery bag.

Don’t have the right costume? No problem! I’ll wear a grocery bag.

  • Lucas seems to prefer things (relatively) neat and organized. Sometimes I’ll hear a gasp and run over to him to find out what’s wrong. “We forgot to put away the crayons!”  The other day I was on the phone and when I got off I found him sweeping up little crumbs of play doh that had hardened on the floor.  I can’t say I mind these tendencies. 😉
Sweeping up the play doh crumbs

Sweeping up the play doh crumbs.

  • Lucas loves animals and his favorite animals are cats. He loves cheetahs and leopards and lions and tigers, but his absolute favorite is a cat that roams our neighborhood named Ringo. He has two stuffed cats, each named Ringo and a small plastic cat named Ringo. He frequently makes cats out of play doh and calls them Ringo, and any unnamed cat in a book is automatically dubbed…you guessed it!  Ringo!
Lucas hanging out with the original Ringo Cat.

Lucas hanging out with the original Ringo Cat.

  • Lucas hates loud noises.  He covers his ears whenever we enter a public restroom in case the toilets are loud or (heaven forbid) there are hand dryers. He doesn’t like the blender or the hair dryer or the coffee bean grinder and protests and runs away every time I turn on my nebulizer to do my breathing treatments (“It’s too loud, Mommy!”) The desire to be near me wins out most of the the time, though, and he’ll usually find his way back and into my lap.

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Putting up with the noise for a breathing treatment snuggle.

Lucas seems so much older to me at four than he did at three–he’s using the potty independently, sleeping alone all night in his bed, eating a variety of foods after years of only wanting baby food. He’s going off to preschool, happily, twice a week and tells me he usually doesn’t miss me. (“I’m really brave, Mommy.”)  He doesn’t want to be called cute anymore.  (“I’m not cute, I’m big!“) He is big. And cute. And we love him so very much.

Happy birthday Lucas Gabriel!

Our Lucas.

Our Lucas.

CF Suitcase

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It’s been a while since I’ve been by!  First an update. Things are going well! I’ve been feeling great and have kept up with my running. I’m still running two miles three times per week and am slowly trying to reduce my time.  My current best is 26 minutes 33 seconds which I got on the treadmill this week.  I was able to run outside several times due to cooler temps which was great!  Here were my last three outdoor runs:

  
I was intruiged that my time got better by 11 seconds each time. I’m hoping to get my time down to 25 minutes for the two miles. It’s going to take a few weeks but I think I can do it. 

I wear my breathe bracelet every time I run. It reminds me of all those loving people in my corner who give me support, encouragement, and help. It reminds me of Jaime and Lucas and the rest of my family who need me to be as healthy as I can be. It gives me a feeling of solidarity with all those CFers who work hard and struggle to stay healthy. It is motivation to push through the tough moments.

Summer has been great! Lucas is enjoying preschool and I like working during the day rather than in the evenings. Jaime has a break from soccer coaching for the next few months as well so we have more family time than usual.

We are heading out for vacation soon and today I got busy packing. I don’t know anyone that loves packing. Unpacking is even worse! For a CFer, it’s practically impossible to pack light. Since cystic fibrosis doesn’t take a vacation, there are lots of things I need. Take a look at the “extras” that I have to bring along to manage my disease:

  
I have my air compressor and nebulizer kits for breathing treatments, two inhaled medications, my anti-fungal drug, child-strength super sunscreen to combat the photosensitivity caused by the anti-fungal drug, a medication to reduce inflammation, two CF-specific vitamin supplements, digestive enzymes, a cooler for the medications that need refrigeration, two inhalers, an airway clearance device, and supplies for sinus rinses.

The orange and green bands are for my posture exercises. The body’s natural inclination is to roll the shoulders forward to combat shortness of breath, and these exercises are an attempt to keep proper posture in spite of my breathing issues. The jar is full of water kefir (a probiotic drink) which helps me manage the stomach issues associated with CF. (My friend Joyce taught me how to make it and gave me a starter. Click here to see her recipe for water kefir if you’re interested!) I drink a little with each meal and it helps my digestion.

You may notice that I included workout gear and shoes with my “extras.” That’s because as much as I might want a break, I can’t afford to take a week off from exercising if I want to keep my lungs clear. Thankfully the resort where we’re staying has a very nice workout facility and therefore I have no excuses!

CF requires its own suitcase. But I’m grateful that my gear is portable so I can enjoy some time away with my family. I’m all packed…now to survive the nine hour drive with a three and a half year old.  Thank goodness for iPads and orange tiger headphones!

  

The Wrong Way to Go Viral

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Dr. Lucas is in the house!

Dr. Lucas is in the house!

Less than a week after I wrote that post about all the things I do to stay healthy (you can read it here) I got leveled by a virus.  It was as if I tempted fate with all my ideas of how I was going to avoid the germs this year. Actually, the whole family got sick.  It started with Lucas, spread to me, and finally knocked Jaime down as well.

I don’t think we’ve ever all gotten sick at the same time before.  It has been interesting to see how this virus unfolded in each of us–different ages, different bodies, different weaknesses.  Any guesses as to who is still struggling?!

Lucas brought the virus home to us but got through it the most easily.  He woke up with a little cough one morning and moved more slowly throughout the day (one notch down from break-neck speed).  The next morning he seemed all better but that afternoon he fell asleep in the car, asked to lay in bed and snuggle and then laid on the couch and watched TV.  None of the above ever happens, so we knew something was up.  His temperature was elevated at 99.4 and he was flushed. He was acting normal already the next day but struggled through the next few nights with a cough.  He’s all better now.

Jaime’s illnesses started with a tickle in his throat and a dry cough.  He had a few days of coughing and a sore throat.  He had body aches and exhaustion.  Unlike Lucas who was through the whole thing in three or four days, it hung on for five or six days for Jaime.  It was complicated by the fact that he was trying to take care of Lucas, and me, while being sick.  He was such a trooper.  Thankfully, he’s all better now.

I started out with having all viral-like symptoms, runny nose, watery eyes, sore throat, low fever, chills, nagging cough, body aches.  These symptoms lasted about four days but my lungs stayed mostly clear.  On the fifth day I started to feel distress in my lungs.  I had extra congestion, incredible tightness, and wheezing.  On the sixth day my doctor started me on oral antibiotics as the virus had caused an exacerbation.  This is where something causes the symptoms of my disease to worsen and the bacteria which has colonized in my lungs to flare up.  My worse day was day seven where walking up a flight of stairs left me competely winded and gasping for air.  (Just one week earlier I had run two miles on the treadmill in 25 minutes.  Talk about the rug being pulled out from under me!) Days seven through nine were filled with lots of coughing attacks, lots of stomach issues (thank you antibiotics!) and lots of prayers for strength.

It’s hard to be sick and keep a three year old happy at the same time.  And even Lucas started commenting on the state of the house (“Our house is so, so messy!!” Thanks for pointing that out). Today is day ten and I’m finally feeling a bit more human.  I still have a ways to go, but I think I’ve turned a corner. I’m ready to start working on regaining strength and weight (I lost four pounds this past week).

The thing of it is, from a CF perspective, (and barring something yet unforeseen), this ten day struggle of mine has been fairly mild.  Plenty of CFers who get a virus which causes an exacerbation end up requiring steroids, or IV antibiotics, or need to be hospitalized.  So even though I have not enjoyed the past ten days and pray for another long streak of health once this is over, I am grateful that I’m getting through this illness as well as I am.

It’s been a very hard week for Lucas because he is not accustomed to me being sick and out of commission.  I am thankful for that too; I’ve been so healthy this year that he’s not used to it.  He doesn’t understand why I won’t chase him around the house or why I won’t take him places or why I keep sitting down or laying on the couch.  Earlier today he asked me for some chips.  I went to get them but got sidelined by a coughing fit.  A few minutes passed and I heard Lucas call down to Jaime, “Daddy, Mommy’s coughing.  Will you get me some chips?”

Here are some pictures of what has been going on at casa de los Ventura this past week:

My sweet little sick boy.

My sweet little sick boy.

Never fear, 24 hours later he was feeling well enough to fly around the house as a super hero!  (Yes that's a kitchen towel).

Never fear, 24 hours later he was feeling well enough to fly around the house as a super hero! (Yes that’s a kitchen towel).

Feeling sad that Mommy's can't run around the table.

Feeling sad that Mommy can’t chase him.

Hiding: the silent protest.

Hiding: the silent protest.

Did I mention it's hard to be sick with a toddler on your back?

Did I mention it’s hard to be sick (and do extra breathing treatments) with a toddler on your back?

The past few mornings when Lucas has come to wake me up he has asked, “Mommy, are you all better now?” I’m looking forward to telling him, “Yes, all better!” hopefully very soon.

Stability

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I had my three month checkup at the CF clinic last week and am happy to report that things went well!  My doctor was pleased with my weight gain and happy that I have been able to work up to running two miles. My lungs sounded clear, the oxygen saturation in my blood was normal at 98%, the bacteria in my lungs are susceptible to a variety of oral antibiotics (meaning there are several options for treatment if I get sick), my blood sugar was normal (no CF-related diabetes!) and my FEV1 was up two points to 49% of predicted. I’ve worked hard not to get too caught up in the FEV1 score because it can be a fickle fiend.  But, honestly, I was thrilled to see it go up.  It felt like a pat on the back after several months of working hard on my weight and exercise goals.

Lucas and Jaime both accompanied me to the doctor. Lucas has traditionally been very shy and quiet during my appointments but he was neither of those this visit. He kept loudly proclaiming his desire to stand on the white paper on the exam table.  He said over and over, “The doctor look in MY mouth now.  The doctor look in MY ears!”  I have to hand it to his pediatrician.  She is wonderful, apparently so wonderful that Lucas wants to be examined.  Thankfully the doctor seemed charmed. But I might have to find a babysitter for him next time I go.

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Look at that face…he knows he’s a little rascal!

Overall my doctor said that my health is very stable. Stability is a wonderful thing when you have a progressive disease.  Of course I would love to see a big improvement.  I would love to see my FEV1 jump 10 points.  Occasionally CFers see jumps like that, but that’s usually if there has been a dip due to a serious infection. Big gains can also happen if someone has not been taking good care of themselves and they begin to make healthier choices, like being faithful with breathing treatments, airway clearance, and exercise. Some patients have seen significant improvements in lung function by taking a medication called Kalydeco which treats CF at the cellular level.  However, it is only effective for those who have a gating mutation, and neither of my CF mutations are, making this drug ineffective for me.

Thankfully I haven’t been acutely ill for a long time.  My last round of oral antibiotics was seven months ago.  I am not perfect with my treatments but I do make them a priority.  I’m active with Lucas and exercising three days a week.  I eat healthy foods to boost my immune system and to combat inflammation and infection.  I try hard to get enough sleep.  I’m hanging out around 50% lung function with those healthy habits already in place. Without a miracle or a medical breakthrough, I’m unlikely to see a big jump, but I’m stable.  I’ve adjusted to life at this level with these challenges.

Stability means that if new treatments become available, I will hopefully be in a position to benefit from them.  There is so much research going on right now involving treatments and medications that combat the basic defect of CF.  My doctor is optimistic about what might become available in the next ten years.  I hope and pray that there will be a breakthrough in my lifetime.

For now, it’s about keeping on!  I’m thankful for a good doctor’s report and for those two points on my FEV1.  I’m thankful for stability in my health.  I’m thankful that God gives me the strength to live and thrive in spite of my challenges.  I’m thankful for a rascally three year old to make me laugh through my appointment.  And I’m thankful for the bright hope that fills my heart.

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Operation Lace Up Update

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I completed one week of Operation Lace Up and am here to report.  Things went better than I expected!  I knew that running was going to be very hard.  And it was, but it was doable.

The Couch to 5K I’m modifying specified a minute and a half of walking followed by one minute of jogging.  I set my treadmill to 4.2 mph which works out to be a 14-minute mile pace.  I kept it the same for both the running and the walking portions, and completed 21 minutes which worked out to be eight 1-minute runs and nine 1.5-minute walks (a total of 1.5 miles).

Before each workout I did a breathing treatment and airway clearance to make sure that my lungs were as clear as possible.  It’s very frustrating to have workouts interrupted constantly by fits of coughing.  My muscles didn’t have any problem with the walking and jogging.  I must have a decent base level of fitness (thank you, Lucas).  It was a challenge to breathe and I felt each and every breath I took.  I had to work hard to pull in as much air as I could and then push it back out.  It was a very deliberate.  When the airways are constricted due to inflammation, congestion, infection, or scarring, the air simply does not move in and out as easily as it should.  I’m thankful I don’t notice every breath I take during the normal activities of my day, but I sure did while exercising.  It was a challenge but I never felt that I had to stop or that I couldn’t finish.  That was very encouraging!

Usually when I work out on the treadmill I watch TV to pass the time.  However, because I had to watch the the clock so closely, I listened to music this week.  A really good, upbeat tune sure helped me push through.  Does anyone have specific songs that they like to listen to when they work out?  I’d love suggestions as I haven’t updated my music for years!

This week I am supposed to do a 2-minute walk followed by the 1.5-minute run.  It sounds manageable.  I’ve got to get my first workout done tonight so I’d better go lace up!