Tuesday, January 28, 2020

Weekend Recap

Saturday.  The boys started a gymnastics class.  A and I thought they needed an activity to do seeing as we’ll likely have cold snowy weather for at least another 2 months.  We gave the boys a choice of tennis, swimming, or gymnastics.  Both wanted to try gymnastics.  And oh my gosh, was it funny to watch.  I think A and I were the only parents laughing hysterically.  S is just a funny kid.  His somersaults (front rolls?), or flips as he calls them, looked more like rolling down a hill versus an actual somersault.  He emerged from class a sweaty mess asking when he could do it again.  I love that he’s willing to try most things.  W seemed to enjoy it too.  This feels like the first “real” class the boys have taken.  We could see the older kids practicing several impressive flips, turns, etc. and view all the state and national qualifier plaques on the walls.  I’m assuming the boys won’t reach competitive levels, but who knows.

From there, we grabbed lunch and then headed home.

Sunday.  Church, breakfast, and Open House at W’s school.  We had fun visiting W’s classroom and S’s future kindergarten classroom.  I loved seeing all the projects the children have worked on.  The students in W’s class were focusing on Martin Luther King Jr. and each one had to come up with an idea for improving their community.  Naturally, W chose recycling. 😊  So cute.  We also visited the book fair.  I love W’s librarian – she always makes sure to set aside cat books for W.  I love that she’s taken the time to get to know my boy and remembers that he love cats.  My philosophy has always been to purchase most books the boys have requested (within reason).  Books are given for birthdays and holidays.  I’m definitely a believer in the benefits of reading.  I think we did go a bit overboard at the book fair, but the boys are really enjoying the books they chose.

Also worth mentioning, I started a graduate class.  I don’t think I previously discussed it, but I was accepted into grad school.  I decided to pursue this after my company announced that they were providing tuition assistance.  Earning my MS has always been a goal of mine and it seemed like it was now or never.  At this point, I’m setting my expectations low.  I’d love to complete my Master’s degree, BUT I’m going to wait and see how this first class goes.  I’m trying not to put too much pressure on myself.  If I’m being honest, I’m a bit overwhelmed.  I was really excited at first, but now the reality of being a full time working professional, involved mom, board member, STEM mentor, and student is weighing on me.  My plate is really, really full.  Eek.

And one more thing.  One of the kids in S's preschool class broke his arm.  S came home and told me Rafael had a casserole on his arm.  LOL!  Cast, casserole... same thing.

Tuesday, January 21, 2020

Weekend Recap

We had the laziest weekend and it was amazing. 😊

Friday afternoon, it started snowing right around 4pm.  As a result, it took me an hour to get home from work.  Ugh.  We ordered Chinese food and after the boys went to bed, A and I caught up on crossword puzzles and Jeopardy.  We are very exciting, obviously.

Saturday.  The boys woke up some time in the 7am hour, which is actually really good for them.  BUT!!!  They got themselves up and went downstairs to play.  I overheard W getting juice for S.  They played really well together and I dozed on and off in bed until 9am!!!  This has never happened before.  I don’t think I’ve stayed in bed until 9am since before the boys were born (unless I was sick?).  A headed out to pick up coffee and juice while I slowly put on some makeup and attempted to put my hair up.  We had plans to go to Target since W was supposed to attend a classmate’s birthday party on Sunday.  However, I received a message that the party was cancelled because his classmate was sick.  This meant that none of us even got dressed.  We stayed in our pajamas all day and played games (Uno, Dos, Sorry!), watched too much tv, and read books.  After a busy week, this was really needed.

Sunday.  Our usual morning routine.  I promise we try to be good at church, but I guess we were all well rested and giggly on Sunday.  I was wearing a black and white striped sweater and at one point, W looked over and said, “Well, helloooo mommy zebra!”, which I found hysterical.  Our church acquired a new painting – it’s a GIANT portrait of Jesus and mounted right next to the pew we sit in every week.  I’m pretty sure this was done on purpose to remind us to be on our best behavior.  A looked at it and commented that it looked like it should be titled “Disappointed in His Pizza Jesus”.  Upon hearing this, W burst out laughing, which made A and I laugh.  SO extra penance is in order for us.   I hope Jesus has a sense of humor. :\

That afternoon, we headed out to meet one of my college friends for lunch.  It was so great to catch up with her.  I can’t remember what the remainder of the afternoon entailed, but I’m sure more games and tv shows were involved.

Monday.  Another low key day.  We went out for lunch and ran a couple errands.  I made lemon chicken and penne per W’s request.  Any time this boy requests something other than pizza or chicken strips is worth celebrating!

One other thing I want to mention.  W has always been shy in public.  He talks nonstop at home, but is really, really quiet at school.  In fact, the only somewhat negative thing his teacher noted in his first report card was that W didn’t often raise his hand to participate in class and he seemed reluctant to ask for help.  Neither of which was concerning to me because I really think the participation will increase as he becomes more and more comfortable.  I am the exact same way.  But I digress.  Last week, A and I received a message from W’s teacher.  She told us that W had volunteered to do a reading at the K-2 school mass on Tuesday (today).  I was a bit shocked.  My sweet boy who doesn’t always speak up in class was volunteering to speak in front of six classes of students?!?  He practiced his lines all weekend and delivered them today.  A sent me a video and he completely nailed it.  I’m so incredibly proud of him!!

Friday, January 17, 2020

Weekly Update

I’m just realizing that I never did a weekend recap and it’s Friday.  Honestly, it was a very mellow weekend and that made it great.  Saturday was snowy.  A offered to get us coffee and juice (he’s the best!) and we spent the remainder of the day indoors.  The boys made a Lego city that took over the entire dining room table and we worked on a 500 piece puzzle.  Sunday, S requested that we go out for breakfast after church so we did just that.  I ended up meeting with the preschool Executive Board (it sounds fancy, but it’s not) to discuss tuition rates while the boys went grocery shopping.  And that was our weekend.

This week has been crazy.   I had a preschool board meeting on Wednesday night, which meant I didn’t arrive home until 10pm.  And then this happened yesterday:

I arrived home from work to a frantic A and S.  S is in tears.  A is near tears.  They quickly explain that they were playing hide and seek, but W cannot be found.  Hmm... ok.  So we’re all yelling, “W, come out, the game’s over!! W, you’re scaring us!! W, are you ok?! W, we’re worried, you need to come out!! W, we’re going to call the police for help!! W!!!!!!”  Many variations of the same worried, panicked pleas for W.  At this point, I’m scared out of my mind.  We’re all thinking the worst... W is injured, he can’t breathe, he was taken.  A is running around outside, I’m looking under/behind everything, we’re checking the sump pump sewer area, looking in containers in the crawl space, S is calling for his brother.  It’s complete and utter chaos.  We’re about 2 seconds away from calling 911, when W emerges from behind a chair (that NO ONE thought he could fit behind), angry that no one found him.  NO MORE HIDE AND SEEK IN OUR HOUSE.

Happy Friday.

Monday, January 13, 2020

Trikafta Update

Just before Christmas, I shared that A finally got insurance approval for Trikafta.  It was a frustrating month as A followed up with his clinic and Vertex.  He was initially denied approval – twice.  When the approval finally came, I was so excited, but also nervous.  What if it didn’t work for him?  What if he experienced adverse reactions and had to stop taking it?  What if it affected his liver function?

The approval also came after a really disappointing clinic visit.  I shared a bit here.  In a nutshell, A had his lowest pft results ever.  I was really scared and upset.  A needed a new nebulizer and he was prescribed an oral antibiotic.  He was also to start on Cayston (earlier than planned).  The nurse practitioner wanted to admit A, but he declined thinking that once he had a new nebulizer and the antibiotics, things would improve.  He also wasn't feeling particularly bad despite the pft results.

A started on Trikafta just before Christmas – 12/21 to be exact.  He wanted to wait until the weekend because we’d heard so much about the “purge” so many CFers have experienced - lots of productive coughing, headaches, fatigue, body aches, etc.  We were prepared for the worst.  I think I asked A about 50 times over the course of that Saturday how he was feeling.  He kept telling me “fine”, that he didn’t feel much of a difference.  Hmmm.  The following day, we again prepared for the worst.  Again, A said maybe he felt like he could breathe a bit better, but for the most part, he didn’t feel much different.  Day after day I’d ask and day after day, A felt fine.  I wasn't convinced the Trikafta was even working.

On 12/23, A started Winter Break.  The timing couldn’t have been better.  We all needed some down time after a few really busy weeks.  We slept in, spent time with family, and ate well.  We also went on a few really long family walks.  We often walked for an hour in chilly weather and I noticed A didn’t seem tired – at all.  I also noticed he was coughing less (not at all). 

Because of the low pft results, A had a follow up appointment 3 weeks after his clinic appointment (2.5 weeks after starting Trikafta).  If his numbers didn’t improve, he would likely be admitted.  He seemed to be feeling better, he was eating well, and he seemed to have energy, but I was still nervous about the appointment.  On the day of, I asked A if he was nervous.  He responded with a flat out “no”.

A texted me a photo of his results.  The results page contained his numbers for the past 11 years.  On first glance, I could see the numbers were good and I was so relieved.  Upon further examination, I realized that these were his highest numbers in 4 years!!  And with a 10% improvement over his results 2.5 weeks ago, this was the biggest jump in pft percentage that he’d experienced in 11 years!! Fortunately, A's pft numbers are typically very stable.  He may go up or down 1 to 2 percentage points from clinic visit to clinic visit, but for the most part, they're stable.  This is also why there was concern when he was down 5% at his last clinic appointment.  10 percent is huge for him.  I’m so grateful.  And I’m still cautiously optimistic.  A meets with a hepatologist later this month.  I’m still worried about his liver enzyme levels and the effects of Trikafta on his liver.  But for now, I’m incredibly thankful.  Approval came just when we really needed it!

One other point of note, for the first time in a REALLY long time, A could not provide a sputum sample.  I've known A for over 16 years and he's always been able to cough something.  This time, the NP had to swab the back of his throat!  I'm pretty amazed.

Friday, January 10, 2020

Christmas Recap

Remember me?  I’m still around.  Work has been a bit crazy.  I can’t remember the last time I was THIS busy, but I’m learning so much and still really enjoying my job.  I was supposed to have a stretch of days off starting December 20, but I received an urgent request from the FDA so I didn’t have as much time off as anticipated.  I was so looking forward to that Friday before Christmas and had plans to take Charlie to the dog park, go out for lunch, help in W’s classroom, and wrap presents.  I still helped with W’s Christmas party (It was also his birthday!  Hello, 7!!), but the rest of my day was spent working.  I was disappointed, but had the wherewithal to keep in mind that I would have been SO much more miserable if I wasn’t in my current job.  Long hours aren’t quite as awful when you enjoy the work and I’m so grateful to have transitioned to a new role. 

Anyway, I managed to wrap presents and get things done just in the nick of time.  On Christmas Eve, we went to my cousin’s house for dinner.  It was great to see relatives I hadn’t seen in a long time.  The boys had fun running around the house and watching Frosty the Snowman.

On Christmas day, the boys were super excited to see if Santa visited.  They ran downstairs to find new scooters and several packages.  We went to church and grabbed coffee and then it was off to Nani and Papa’s house.  The boys enjoyed running around with cousins and opening presents.  W took time to examine each gift, while S really didn’t seem to care what he received, he just wanted to open everything!  We returned home with full bellies and two tired boys.

On the day after Christmas, my mom and Susana came over for brunch.  The boys opened their gifts from my mom, Santa, Susana, and A and me.  It was quite the scene as the room filled with torn wrapping paper and too many boxes to count.  The boys received Legos, Magnatiles, games, watches, and books along with their scooters – all of which were perfect for them.  The day happened to be warm – near 60 degrees, which is unheard of for late December.  We all went out for a family walk and enjoyed the fresh air.

The days after Christmas were my favorite.  We slept in, took long family walks, played too many board games to count (W is obsessed with Sorry!), visited friends, and took things slowly.  When the boys went to bed, A and I caught up on shows.  On one day, we spent at least 6 hours cleaning up and organizing, which was very much needed.  A and I managed to squeeze in a much needed lunch date.  We also took the boys to the library and they picked out lots of books.

 I also want to remember a couple things I made.  I was asked to bring a “cheese ball” for our Christmas Eve gathering.  My initial reaction was “a what?!”.  But then I remembered that my grandma (who passed away 12ish years ago – wow, typing that, I can’t believe it’s been that long) used to make this cheese ball with cream cheese and chipped beef.  I found the recipe and made it and love that it brought back memories.  I also made strata for our after Christmas brunch and used a recipe from my uncle who lives in Oregon.  I love that I was able to make a couple family recipes (even if they were easy). 😊

With work and only 4 weeks between Thanksgiving and Christmas, this Christmas felt especially chaotic and rushed.  As much as I wanted to slow down, I couldn’t.  I enjoyed Christmas, I always do, but I wish I had more time to prepare.  I’m really hoping the holidays will be less hectic this coming year (but doubtful!).

Stay tuned for a Trikafta update!