Tuesday, September 13, 2016

Meet Fredrich

Please help me welcome the newest member of my classroom: Fredrich
(or as some students suggest: Jimmy John Jones, Burrito, Chimichanga, or Aries...we might have to hold a vote later)


This is our new "spot cooler" - aka: air conditioner, that was installed last night and surprised me this morning!!!! I have to say I was very, very doubtful that this would ever happen, but I am SO happy and thankful! Everyone at work was so surprised, too! The custodian even said he was shocked and that I proved him wrong! :) So I apologize to my coworkers, I'm not keeping my door shut to keep you out, but I'm going to keep my cool air in as long as I can!

It was very difficult for me to put in Americans with Disabilities Act paperwork because I felt like I was putting a huge label on my forehead marked "disabled", but after the summer of mold and the huge drop in my lung function, I had to do something. I want to teach for as long as I possibly can, and Freddy is going to make my classroom environment so much healthier for me, and for my students.

I cannot thank my principal enough for helping me through this process, backing me up on this decision, and following through with everyone. I also am thankful to Tim for encouraging me to do this and supporting me through my extremely frustrating summer of mold. And of course, my school district for providing this accommodation for me to remain in the building I love and to be able to teach in a much healthier environment!

Saturday, August 27, 2016

CF In Real Life

*Raw feelings ahead:

A couple weeks ago, I had my routine clinic appointment in Chicago. The appointment previous, at the end of April, was probably one of my best appointments I've had in many, many years. My appointment a couple weeks ago was not even close. 

I went in expecting to be in the high 80s, maybe still 90, because I was just beginning Cayston which always makes me cough a bit more when I start it. I knew my weight would be up a couple pounds because I hadn't really exercised all summer and I could tell things weren't fitting the same. 

First came the scale, and boy was I surprised - 132.4lbs! What?! That's more than I ever weighed, even when I was pregnant with Anna. No wonder my clothes weren't fitting...Then came vitals, which were fine. I felt like I had to wait forever to get my PFTs done. I saw the nurse first, quickly, who I told that I was feeling really well all summer and expected some good numbers. She mentioned that my insurance was being picky about me getting an Afflo-Vest because they wanted proof that what I have now isn't working, so she was going to "add a note to the bottom of my papers today" saying my numbers weren't the best and recommend that I get it. We both giggled a bit at being rebels, haha, but she knew I'd been asking for one for a long time, so she was trying to help me out.

Then finally the PFT machine comes rolling in. I stand, plug my nose with my fingers, close my eyes and focus on my breathing. I give my biggest, best puff of air and blow as long as I can. When she tells me to take a deep breath in, I do, take the mouth piece out and stare at the screen - FEV1: 81%. That can't be right. So I cough a few times, give them a sputum sample, make sure my airways are nice a clear for another test because that score just cannot be right. I tried even harder on the next one and ended up with the same sad number, I was so confused! What was worrying me was that I felt fine. You'd think if your lung function took an 11% hit, you'd feel pretty crappy, but I didn't feel a thing. I just got done telling the nurse how I'd been feeling great all summer. The RT had me do another test, but she hit the button at the end too soon, so that one wasn't correct. She asked me to do one more. I coughed out everything I could before doing it, to make sure nothing got in my way....same, if not a little lower (can't remember for sure) because I was exhausted. 

I wanted to cry. How could my lung function go down so much in so little time without me realizing it?? I didn't know what to say. I had no idea what my doctor was going to say or how she was going to react. Thankfully, she was so level-headed and calm. I told her how I just started my Cayston and wondered if that was it. Then I told her about my classroom...

See, my school doesn't have air conditioning. It also has carpet everywhere. Over the summer, our custodian cleans all the carpets in the building. He uses as many fans as he can find to try to help the carpets dry quicker, but between the heat, humidity and moisture, almost always some mold grows in some or all of the classrooms. This summer, it happened to be only in my room, and it was EVERYWHERE. I discovered it when I went into school over the summer to drop off a few things in my classroom. It was covering all of my bulletin boards (which I covered in fabric last summer), on my books, shelves, desks, etc. I took pictures to show my principal and got out of there. I was so frustrated! I couldn't work in that environment! 
After talking with Tim, we decided that it needed to be taken care of, and no one s really doing anything about it. So Tim bought me a respirator and we sent Anna to Grandma's one day the next week. Wearing my respirator, I tore down all ten of my bulletin boards' fabric and borders and threw them away. Apparently wearing a respirator finally got the custodians attention and he called his boss to try to help me out. He got me a new dehumidifier for my room and used an entire gallon of mold killer to spray every surface in my classroom (I even asked him to spray my books). He decided to keep the windows shut, shades drawn, and lights on for days to make sure the mold didn't grow back. 
Fast forward to the next week no there was no sign of mold growing back, so I went back in for an entire day in the heat and redid all ten of my bulletin boards with the help of one of my teacher friends. 

This was two days before my clinic appointment. When I told my doctor about all of this, she said, "Don't ever do that again." I felt awful, but I knew no one else was going to do it for me. She said that even with a respirator, it still wasn't good for me to be in there. We wondered together if that could have had such an impact on my lungs. It was obviously airborne because the bulletin boards were never wet, so the mold had to come from the air. My doctor said she'd check my sputum culture for mold, told me to increase my treatments as much as possible before school started in a few days, and talked about writing a letter to get me an air conditioner in my classroom. That was it. She wasn't putting me on antibiotics or anything extra because I was already on Cayston and she said my graph looked proportional despite my numbers being low. It was kind of a mystery. She wanted to see me back sooner than three months to see if my numbers stayed low, or if it was just a fluke.

That whole night and the next day I was so, so defeated. I was confused. Should I go back to work? Is it worth risking my health to do my job? I'm too young to stop working! School starts in three days, how am I going to find another job in an air conditioned building? What do I tell my boss? I had no idea what to do or if I should even go back in my school. My doctor and I texted back and forth the next couple days, and she agreed to write a letter to my district to try to get A/C installed in my classroom.


That brings us to today... Yesterday was the eighth day of school and all of my ADA paperwork has been submitted to HR to try to get me an A/C in my classroom. Unfortunately being in an older school building, I hear the eletrical isn't enough to hold one, but we'll see. I have a feeling they'll make their decision by October when it's not relavant anymore....or try to send me to another building which I will not do. 
I've been feeling okay the last couple weeks. Not the best, but not awful. It sucks working in the heat, but we're all in the same boat at my school, so I feel bad complaining. I absolutely HATE using my CF as a crutch/excuse. I hated filling out ADA (Americans with Disabilities Act) paperwork. CF is not a disability. I hated writing that I have limitations because of CF. Unfortunately, I have to realize that I do have limitations. I can't subject these lungs to the heat and humidity if I want to keep them in tip top shape. I have to keep myself healthy to be the best teacher, mom, and wife that I want to be.

We'll see what the district decides. ***Oh, and my culture did NOT show any mold in my lungs, so that's good. Even though I've been breathing it in, its not not making a new home in my sticky mucus-filled lungs! I'm almost at the end of my Cayston cycle and still feeling just okay, so I might be asking for some Cipro in a couple weeks to give me that extra boost. I'm also planning on joining a ten-week running club with a friend, so that should really help keep these airbags moving. 

I'll keep you all posted. High-five for you for reading all the way til the end... :-)
PS - My class has only 14 students this year. It. Is. Amazing!

Tuesday, August 16, 2016

730 Days

Today (when I wrote this) you are TWO! I cannot believe that is has been two whole years since you came into this world. :)


You are such a happy and silly little girl! You've grown a tremendous amount in this last year - one to two has been so much more fun (and faster!) that zero to one! You're now 33" tall and a whopping 21lbs 9oz.

Small, but mighty!
Things you love:
  • Your babies (and after your birthday party, you have at least seven)
  • Daniel Tiger & Super Why
  • Being outside
  • Liam (and all of your cousins, but mostly Liam!)
  • Singing songs with us
  • Swimming/anything with water
  • Foods: Chinese (especially the crab rangoon), beans, tomatoes, PB&J, strawberries,  
  • Coloring, especially with markers

Things you've learned this year:
  • How to use the potty!!!! You decided to potty train about two weeks before your second birthday. You were using a diaper at night for a few days, but quickly refused and demanded undies. You've been doing an excellent job keeping them dry at night! You've quickly learned how to go all on your own, even on the big potty, we're SO proud of you!
  • Talking - you're talking so much! You're starting to put 4-6 words together at a time, but  sometimes you still like to talk like a caveman. Your receptive language is amazing, when you want it to be...you definitely have your Daddy's ignoring capabilities :)
  • Vocabulary: You've learned all of your colors; you're very close to being able to sing your ABCs (you get messed up at L, M, N, O, P);  you can identify letters Aa, Oo, Ss, Nn and sometimes W/M; you try to count up into the 20s, sometimes skipping some numbers.
  • Independence: "Anna do it" & "Me do it" have been very frequent phrases in this house and most of the time it's music to my ears *unless we are on a time crunch!* I love that you want to do things yourself. Isn't that my whole purpose as a parent - to raise an independent, self-sufficient productive member of society? Now we've got a ways to go on the self-sufficient & productive part, but you're well on your way little lady, and it makes us so proud!
  • How to go up & down stairs independently
  • You're learning how to dress & undress yourself - bottoms are much easier for you than tops. You can also put most of your shoes on all by yourself, and 90% of the time they're on the correct feet.
  • Negotiating: You and I sometimes butt heads when I tell you to do something you don't want to do. For example, when I say "get your feet down" you reply with "one foot". Or if I tell you that you can bring one baby with when we go somewhere, you say "two babies". Along with this, you've also learned how to take a time-out....which you also try to negotiate by sitting on the opposite all where I sit you...you keep me on my toes, little one :)

Things you dislike:
  • Not getting your way.....surprise, surprise
  • Onions - even though you insist on taking my onion rings & just eat the outside, of course 
  • When your babies aren't in bed with you and tucked in correctly
  • When you're not tucked into bed correctly (it has to be covering your feet & all the way up to your chin) - OCD much?!

I love your silly, imaginative and independent personality, and I'm so excited to watch it develop even more over the next year! :-)


Love you so much!! ~Mommy

Friday, August 5, 2016

I'm Still Here!

I haven't posted a blog in over two months...oops! I'm kind of glad though because it means I've really been too busy enjoying my summer! :)

Unfortunately, there's only one more week of summer vacation left for this working mama. I go back to work on August 15th and the students come back on the 17th. But I'm getting ahead of myself...you must be wondering what I've been doing all summer...

Anna and I have been keeping busy! We have been trying to get out and do something everyday. We've spent many hours at two local libraries, completing the Summer Reading Program at each of them. We also started "1,000 Books Before Kindergarten" through one of the libraries and are currently on 188 since starting at the end of May. (I wish I would have learned about it sooner because I'm pretty sure we'd be close to done by now!) We've attended many play groups and made some new friends. We've been in many, many pools and Anna is becoming quite a confident little fish.

At the end of June we took our first family vacation with Tim's sisters and their families, and Tim's Aunt & Uncle. It was SO fun!! It was our first family vacation, and Tim & I's first vacation since our honeymoon almost six years ago.

July flew by filled with more trips to the libraries, pools, parks, museums and play groups. And now, unbelievably, it's August already! August has mixed emotions for me. It's a little sad because it's the end of my time with Anna, but the excitement of starting a new school year balances it out a little. August is also an exciting time because we celebrate Anna's birthday! I cannot believe she is going to be TWO next week! She's grown up and changed so much just this summer! I'll be doing her two year post next week, so I'm not going to put too much in here, except to say that she is potty trained!! I'm so proud of her and I love the little person she's growing up to be!

Health-wise I've been feeling really good this summer. I haven't had any chest infections. I'm just starting up my round of Cayston today, so that should get my lungs in tip top shape for my CF appointment next week and the beginning of the school year. I definitely haven't exercised as much as I could/should have this summer, so there's always that to improve on, otherwise things are going really well here.

Well, that's all for now. We're really busy at home right now preparing for Anna's "blue birthday" party tomorrow! :)

Monday, May 30, 2016

X-Rays. Compliance. Kalydeco.

 
 
On the left: Chest x-ray from January 2013             On the right: Chest x-ray from January 2016
 
What's the first thing you notice? Be honest...
 
Fat! And that's a good thing for a CFer. Let me fill you in on the huge difference in these photos.
 
January 2013 - I was half way through my first year of teaching. I weighed 109lbs, although my lung function was 88% at the time, it wasn't consistently that high. I was showing signs of pre-diabetes, losing weight quickly and not compliant with my treatments. This x-ray is pretty good for a CF adult (24 then). Lungs are pretty clear with mild issues in the upper area of my right lower lobe.
 
January 2016 - I was into my fourth year of teaching, on Kalydeco for a little over two years, a mommy, 124lbs, and a steady lung function of 88%. I had a normal A1C (aka: no diabetes!) and had been compliant with my treatments for a couple years now. The lung damage was very similar, which is key. Typically, adults with CF slowly lose lung function over years, but that fact that my lung function is even better (now) is quite amazing.
 
 
 
There are two giant factors: Kalydeco and compliance.
 
When Tim and I got married and talked about starting a family, I became very serious about my health. I didn't want to sit back and let CF slowly destroy my body as it was. I finally took control and started being complaint with all of my medications and treatments. It was only fair for my husband, and then daughter. To this day, I remain complaint with my treatments because they're what keep me alive.
 
Looking back at blog posts from right before I began taking Kalydeco, I remember that I really didn't want to start it. I didn't want to rely on another drug to keep me healthy. But after realizing, 'what's another pill?!', I figured I'd give it a go. I started Kalydeco August 30, 2013. My lung function the month prior was 77% and I weighed 109lbs. Today, my lung function is 92% and my weight is typically between 124-127lbs. That means, since beginning Kalydeco 2 1/2 years ago my lung function has gone up about 15% and I've gained 15-20lbs! Now if that's not amazing, I don't know what is!! From two little blue pills twice a day!
 
I plan to continue taking those little blue pills and doing ALL of my treatments every single day...well, until there's a cure!

Sunday, May 8, 2016

One and Three Quarters



21 months, one and 3/4, Almost two!!! What?? How??


Baby Big girl, you're growing and learning right before our eyes, and it's so fun and you're so silly!!

You're starting to display typical toddler behaviors like requesting specific colors of things (green plate for dinner, purple cup, blue spoon, etc) and you prefer blue of everything - thankfully you don't (yet) throw a fit if we don't have something in that color. You're good about picking from what's already there....for now....You're also beginning to test the limits on rules. Your most recent one is screaming. It drives me crazy! I'm hoping it'll pass soon. :)

You're definitely getting smarter every day and I swear your ears are ALWAYS listening to everything that's going on around you because you pick up on everything, or join in on Mommy and Daddy's conversations when we didn't think you were paying attention. You can also count to thirteen and know all of your colors.
And I'm probably jinxing myself for putting this down, but you still are an amazing sleeper at night. You know the routine (jammies, brush teeth, hugs, then bed) and once we get started you follow it through and go down without a fight. We're thinking about transitioning you to a big girl bed this summer, so I'm hoping this routine will help make that a little easier.
Speaking of summer (which is only two short weeks away for us!!), we're also going to try potty training. Now, I say try because I know you're still young, but you've pooped on the potty a couple times and I honestly think you're smart enough to pick up on it, so we're going to give it a shot. If it completely back fires, then so be it, but that's the plan.


Some of your favorite things at the moment include:
  • The color blue! Blue Easter dress, blue "Alayna shoes", blue bike, blue ponies, blue bows....you get the idea. If I can't get you to put in a bow or pony, I just have to find a blue one and you'll enthusiastically say, "yeah!"
  • Playing with your babies! You've been carrying around a baby, or three, all day every day for the past few weeks. They eat with you in your high chair, sit next to you in your car seat, sleep tucked under your arms, go ni-night in various places, and get dropped on their heads a lot. Their names include: Pink Baby, Elmo Baby, Dolly (that's at grandma's), White Baby, and all the rest are Other One Baby

You brought home this giant baby from Grandma's and
were mad when it didn't fit with you in your high chair
  • Singing - We sing (or count) while we brush your teeth, all the time in the car, or just while we're playing at home. It's an awesome way to cheer you up or distract you, if need be. Some of your favorites are: Itsy-Bitsy Spider, Wheels on the Bus, Turtle in a Box, ABCs, Row Your Boat, Hurry, Hurry Drive the Fire Truck and One - Two, Buckle My Shoe.

"Wheels on the bus go round & round"
  • The "bi-bary" and Baby Talk - We took this session off of swimming lessons to go back to Baby Talk, which is a little play group one night a week at the library. We sing songs, listen to a story, and play with other kids. You love it! You'll get up on the little stage with the other kids and dance and jump around - its so cute. :)
  • Menards - you get super excited when you hear the song on the radio, you recognize it when we drive by and when we use the bags at home! You're a professional Menards shopper:



I have a feeling this is what our whole summer is going to look like: 

And I can't wait!!!

Friday, April 29, 2016

CF Clinic Appointment

Yesterday was CF clinic time, and I've been so busy with end of the school year craziness, it came upon me very fast. Over the last three months I've been feeling really good, no lung infections, no issues, so I figured my appointment would be fairly normal and smooth.

Then the weekend before my appointment, I started having this really high belly bloating/pain. At first it felt like bloating, but just higher up under my diaphragm and ribs, so I tried to cut back on my carbs for a few days, but the pain still lingered and felt more like pain instead of bloat. So, of course, I reached out to my CF family for their advice, and some said it sounded like a bowel blockage. Well, even though I'm pancreatic insufficient, I've never had too many GI issues, especially not constipation or a blockage, so I was really hoping that wasn't the issue, but I kept it in the back of my mind and added it to the list of things to discuss with my doctor.

I also hit another little bump in the road Tuesday evening, when I felt the all too familiar 'pop' and 'crackle' of hemoptysis. Ugh!! I hadn't had any episodes since my last appointment in January, and now two days before, it shows it's ugly face. Luckily it ended up being very small and went away quickly that evening. But Wednesday morning, while at school, I had another, even smaller, episode. Thankfully it was small enough for me to spit once into a tissue (the kids were not in the room at the time), take a drink and it was done. So I backed off my HTS Wednesday morning, and only did half a dose Thursday morning, and it seemed to be gone aside from tiny streaks.

Back to the appointment- it was at 11:30 which is probably the best time for a clinic appointment. Late enough to where I can leave my house at 8am and miss rush hour traffic on the way there and back! They got me in right away, weighed me (124.5 lbs), pulse ox (98%), blood pressure, etc...all normal.

Then come the PFTs! Basically the whole point of the visit to see how my lungs are doing after three months. The RT who does the tests is super friendly and I really like her, which always makes me feel better. I stood behind the computer on the first one so I couldn't see anything, closed my eyes, plugged my nose and gave it my biggest, hardest blow & breath as I could. When I peeked around the other side, I had to do a double take because I didn't see any 87, 88 or 89s. Now the screen is filled with a big grid with numbers everywhere, but I knew where to look. Then it hit me...it said 92!!! I said rather excitedly, "Does that say 92?!?!" The RT wanted to make sure I was looking at the right thing, so she doubled checked her notes, but while she was doing that, I just kept checking to see that I was looking in the right column. I was! My FEV1 was 92%!! So of course I got very excited and said, "Yes, it does! Oh man, I don't remember the last time I was in the 90s!" (And I may have thrown my arms up in the air in excitement, too...) Anyway, I did two more tests - next was 92 and the third was 90. I was so happy! I asked for a copy and she told me I got a gold star for the day. :-)


Needless to say, my doctor and nurse were very pleased with my results. My nurse thought it was funny how much of a reaction I was having because it's only a couple points higher than last time, and I've always been so close with 88 and 89 lately, but it's totally a mental thing for me. This is a milestone that I've wanted to reach since I started this blog five years ago, that I honestly thought was a bit unrealistic at the time, but it was a goal to keep me motivated. I honestly cannot tell you the last time my lung function was in the 90s. In high school I was in the 70s, so it had to be sometime in my childhood. Its amazing!


After the excitement died down a bit, we got back to business about the belly pain and hemoptysis. Doctor wasn't too concerned with the hemoptysis, but told me to let her know if it comes back. As for the belly pain, we figured out its most likely reflux/acid because I've been waiting on my Previcid to be refilled for over a week now. She told me to buy over the counter Previcid until I get my prescription in the mail. So I went straight to the store when I got back in town and too the meds in my car hoping this stupid pain would go away.

Needless to say, I had a wonderful appointment yesterday. I am so proud of myself for sticking with all of my treatments - it'll be five months of compliance on May 1st.

Compliance + Kalydeco = awesome lung function!

Imagine what it could be if I started exercising regularly again.....need to add that to my list of to-dos between now and my next appointment. I was 90s to be my new normal! :-)

Stay tuned, next blog post will look at my chest x-rays!

Wednesday, March 30, 2016

Toddler Talk

Someone discovered Oreos dipped in milk!
I love listening to your ever-expanding vocabulary and your own versions of words. I feel if I don't write them down now, I'll forget them!
  • You now call Archie Erchie
  • You said your first "sentence" the other day: Ozzie at home. Who knew adding a simple little word ''at'' would make me so proud!
  • You're getting better with putting words together with less pauses in between - your speech is getting more fluent
  • You call Liam, Miam, which has come a long way from the previous version bee-but
  • You can say ball, bubbles, baby as clear as day, but you still say gook for book
  • You know many of your body parts, including your nina, and pointed to Daddy in that area, assuming he had one too, haha!
  • You've started requesting songs to sing including itsy-pider, row-row, and toh-toh box (Turtle in a Box)
  • You call monkeys okies
  • One of my recent favorites are nope and yep!
  • Peanut butter is peter butter
  • When we're going to brush your teeth, you just put them together and call it beef
  • You wanted to help with the dishes the other night, so you needed your stool moved. I was trying to get you to say, help me please, or stool please. Instead, you said move it right here. Haha!
My two favorite people in the whole world!
Other little tid-bits I don't want to forget:
  • You know capital letters A, N, and O. You can spell your name on your door :-)
  • You're starting to learn your colors and always request a "blue one" when it comes to anything, so you wear your blue bow or pony a lot, and you have a blue Easter dress. When you don't know the color of something, you usually guess that it's green. But you're picking up on them quickly. You knew red, yellow, purple and green yesterday without help. :) 
  • You finally broke the 20lb mark! At your 18 month appointment, you were 19lbs 8oz (and sick) which worried the doctor a little bit. We took you for a weight check (one month later) and you were 20lbs 11oz! That's my girl!
  • You love to help with the dishes, it's become your chore to help empty the dishwasher. It started with just throwing the silverware into the drawer, now you use your stool and sort the butter knives, spoons and forks. You also love taking out the plates and pretty much anything on the bottom rack. You get frustrated because you can't reach the top rack yet.
You're growing and learning so fast! This summer is going to be so fun!!!