Wednesday, January 9, 2019

Calvin, 11 Months

He was not too happy about laying down for his picture this time.
Bubba,
Oh my goodness, how can you be eleven months old today?! This last month we celebrated your first Christmas(es). You were very lucky and received lots of diapers, new outfits, some jammies, and a few new toys and books. You enjoyed ripping the paper and playing with your cousins.

This month (well, actually the day you turned ten months old) you learned how to stand up in your crib. Now pretty much every time I go to get you up, you're standing. Your legs are getting so much stronger. You pull up on everything and cruise around furniture a lot faster than before. Just within the last week or so you've been getting brave and try to stand on your own. You can only make it a few seconds, but it's a start and you are so proud of yourself.

You've learned so much this month, too! You can now say "uh-oh" (learned just a couple days before Christmas), you play peek-a-boo when we say "Where's Calvin?", you give high-fives, and you are starting to understand so much more. You look around when we ask you where Sissy is, or Archie, or your new stuffed animal dog Frankie. You also know what it means when we say, "Go get a book". We're working on a little bit of signing and you inconsistently can sign "more" and "eat" (the most important ones!). It's been so fun this month because you've become so much more interactive.

Your feeding has changed dramatically this month as well. You've learned how to drink from a sippy cup (do the best with the 360). We started with water and you weren't really interested & couldn't figure it out. Then I tried whole milk and shortly after you caught on. While I was on winter break, I was giving you whole milk whenever you'd eat in your high chair and you did great with it. Now that I'm back to work, you drink my milk with your meals, and once that's gone you take whole milk. Thankfully, you don't seem to care about the switch which is good.
Also, we're done nursing overnight. After the holidays calmed down, I made the decision to stop nursing you overnight. With you getting so much food and milk during the day, there really is no need to nurse overnight anymore and you've been doing SO well! You'll sleep all night long, occasionally fussing, but you're able to get yourself back to sleep within about 5 minutes - it's been wonderful!

With all of this food and milk during the day, you're definitely gaining weight. You had your follow-up appointment from your November ear infection the day after Christmas and you weighed 17lbs 7oz then. You're finally in 12 month clothes (some are getting too small already) and I moved you up to size 4 diapers because your belly is growing! Your little chubby fingers are filling out again just like when you were a newborn, along with your belly and your arm & leg rolls... I'm so glad! You also now have 4 teeth - two on top & two on bottom.

You and Anna are just SO cute together. You really love her and she just adores you. She is so good with you (even likes to carry you around which makes me nervous) and I just hope that your relationship continues to grow. It's so fun watching you guys play together.

Oh, and how could I forget - Daddy gave you your first haircut the other day... it was more like a trim, but we had to get your hair out of your eyes. You would rub food in your hair pretty much every time you ate and it was gross. So we put you in your high chair to eat breakfast and Daddy tried his best to trim your hair. Its much shorter in the front (I'm still getting used to it), but I'm glad it's out of your eyes.


Likes: Food, milk, looking at animal books, playing with Anna, people watching, your pacis, Frankie (or any stuffed animal really - you hug them, it's adorable)

Dislikes: When I walk by and don't pick you up, falling down after standing, when there's no more food on your tray and you're still hungry

It's been a really fun month, Bubba. I can't believe we're going to celebrate your first birthday soon! I wish I could have two weeks off every month to spend with you, but hopefully summer break will be here before we know it. 
Love you, Bubba!

Monday, December 17, 2018

Calvin, 10 Months


You did not want to be laying down for these pictures, but couldn't remember how to roll over,
so you just laid there screaming! 
Bubba,
How can you be ten months old already?! 
  • You have a huge appetite - we've started feeding you food more regularly throughout the day and you are all about it! I swear sometimes you eat more than Anna does.
  • You've learned to clap when we say "yay"
  • You wave for "bye-bye", ni-night", and "hi"
  • You started pulling up on furniture, my legs when I'm standing...pretty much everything
  • 2 pacis at bedtime for the last couple months - one to hold, one for your mouth
  • You scream randomly, in a very angry way and we haven't figured out why
  • Still very attached to mommy
  • Learning how to bounce up and down when we say "dance"
  • Your top tooth finally has cut through your gums, I'm sure we'll be able to see it over the next few weeks. That tooth took forever! The one right next to it isn't too far behind, either.
  • You had your first ear infection, cough, and round of antibiotics. Thankfully you loved taking them for the most part and would say "mmm" every time. 
  • You weighed 17lbs 3oz when I took you to the doctor when you were sick. That's up 6 ounces about two weeks after your nine month appointment. :-)
  • You hum to yourself the entire time you're eating in your highchair
  • Some days you seem so old! It's exciting to watch you grow and interact more :)

Friday, December 7, 2018

Colleen, The Writer

Hi all! It's Colleen, the writer and creator of this blog. When I created this blog back in 2011 I intended for it to be about my life with Cystic Fibrosis. As the years progressed, I've added in personal touches about my growing family, and now I feel like my kids have taken over my blog! But in a way, that's life! My kids and my family are my life, and CF is just a part of it.

I suppose I should update a little bit about myself lately. I'm an exhausted mom and teacher, but loving life. This summer I changed jobs, now working in a rural, small-town school district which is a complete change from the large urban district I was in for the last six years. I'm also teaching fifth grade now which is a lot different from third grade, but it's been fun. I have great partners and coworkers and only twenty students in my class this year.

Along with a new job, came new health insurance -- for someone with a chronic illness, it's quite a pain. Moving to a much smaller district, too, meant that my benefits were more expensive and covered a little less, but it's worth it because my job is less stressful. I've had to switch all of my prescriptions over to a different pharmacy, but thankfully I'm back now with Foundation Care and they are wonderful. **No more Express Scripts or Accredo!**

And if having a preschooler, a nursing infant, and a new job aren't enough on my plate, I'm also finishing up my Master's degree in Teaching and Learning with an emphasis in science. I am one project away from finishing this semester, and one research class away from graduating in May!! My plan is to continue on to receive my +32, which means 32 credit hours beyond a Master's degree (and a big bump in pay).

CF-wise, I've been doing alright. My overall lung function is now in the high 70s and I think a lot of that has to do with how exhausted I've been over the last year. Adding another child into the mix, especially one who's a total boob-man all night long, has been way more exhausting than I would have thought. But man, he sure is cute! I am hoping that once he hits a year old he'll start sleeping better, which means that I can start sleeping more, but we'll see. Honestly, I haven't been the most complaint with my treatments this fall, so that hasn't been the best either. I'm trying to get myself back on track though. I've also had several episodes of hemoptysis over the last six months and I'm not sure why. My plan is to do a three week course of Cipro as soon as I'm done breastfeeding, hopefully to kick out all of this extra crap in my lungs. Overall, I'm not feeling 100%, but I'm not feeling terrible either, just kind of "meh" for now. The winter is always tricky with school and germs, but I'm going to try my best to stay healthy as always.

Hopefully you've been enjoying all of my posts about my sweet kiddos. I'll try to do better about adding more about CF on here, but I just don't like to give my CF any extra attention - it's not what defines me.

Thursday, November 15, 2018

Calvin, 9 Months


Oh Calvin, you have such a personality! Daddy says you're just like me... maybe it's the way you're loud, you're a people-person, you love food, you talk (babble) with your hands, or maybe your little temper... either way, you've been super clingy this month, especially the last week. We're around each other so much, it's not surprising that you'll start to act like me! :) You haven't wanted me to put you down this week, it's kind of exhausting. Even if I'm sitting on the floor with you, you want to be on my lap instead of next to me. If you do venture away to play with something, you'll quickly realize you're not near me anymore, turn around, stare at me and cry. I have no idea where this is coming from all of a sudden, but I'm hoping it'll pass soon. 

Before this clingy phase started, you've been such a happy little guy. You laugh at everything, babble a lot and follow Anna everywhere. She's been so good sharing her stuff with you and making sure you're not putting her stuff in your mouth (and if you do, she's okay with it, too). Speaking of, you eat everything off the floor. You find the littlest of crumbs and of course they go straight into your mouth. Luckily for us, it's pretty obvious when something's in there because you keep it in your mouth for a long time. You get extremely angry when we try to take it out of your mouth, too. You also get angry when you're in the high chair and your tray is empty, and when I walk by you when you're on the floor and I don't pick you up... little bit of a temper there...

You still crawl with one foot to push yourself and the other leg just kind of slides along. Every once in a great while you'll try to crawl the traditional way, but your way is faster. You want to pull yourself up/stand, but you're just not balanced enough. You still don't understand that if you're holding something to stand, you'll fall when you let go.

We celebrated your first Halloween this month and you were dressed as Olaf and Anna was Elsa. It was cute! I just bought you a white hat, glued some felt on to make the face, stuck pipe cleaners through as your twig hair, and glued some black felt circles on a white onsie for your body. We dressed you guys up for Boo at the Zoo and people were able to tell who you were, so I'd call it a success. On Halloween, it was too cold to see your shirt, but the hat kept you warm. :)

Other random things about you this month:
*You still have two teeth on the bottom, but I'm guessing you'll be getting more soon.
*You go to bed at 7:00pm each night, and thankfully the time change didn't effect you too much
*You're finally eating better - rather would feed yourself and we haven't found much that you don't like
*You're back to waking up frequently at night. At your nine month appointment, the doctor said I need to stop feeding you overnight, but I'm just not ready (never thought I'd say that!). I think you need the extra calories right now and I don't want to sleep train you until I have some days off. Maybe over Thanksgiving weekend we'll try again...or Christmas break?
*You only gained one pound and grew one inch since your sixth month appointment. Your growth has definitely slowed down, but it's been a struggle to get you to eat larger quantities the last few months, so I can't say I was surprised. Your babysitter and I are really going to work on getting you to eat more (bottles & food) during the day. You weighed 16lbs 13oz and were 28.25 inches tall.
*You take your bath in the regular tub now and you love it! You crawl around, splash and smile the whole time.
*When you're held by someone new, you like to touch their face - it's like it's your way of saying "hi"

You're full of personality, have the best smile and are just the perfect addition to our family! Love you, Bubba! 

Monday, October 8, 2018

Calvin, 8 months


Bubba,
You've made a ton of gross motor development this month! You're much more stable at sitting up. You can also go from laying on your belly to the sitting position which you learned very quickly after I helped you once or twice. You're crawling.... well, your own version of it :) You use your arms correctly, and one leg, your left leg to be specific. Your right leg is in a bear-crawl position and you use it to push/step yourself forward. It's so cute! I'm guessing it'll only last a little while before you figure out how to crawl the right way...maybe. I won't be surprised if by next month you're starting to pull up on things. You still want to walk so bad!

Your night sleep is finally getting better - woo hoo! I only nurse you around midnight and then again around 5 when I wake up. If you wake up any other time, you're able to get yourself back to sleep pretty quickly. You've become a belly sleeper and I think it's adorable! You sleep on your belly for every nap and overnight. You also move a ton either as you're trying to fall asleep, or when you wake up, because you've been found in some interesting positions. You've gotten yourself wedged into the corner of your crib a couple times (and gotten really mad), but you can usually get yourself out. I keep your bed stocked with at least two pacis so that hopefully you have a better chance of finding it overnight if you need it.

You cut your first tooth, on the bottom, over camping weekend and it's slowly growing in - it's adorable! The tooth next to it just popped through, too. I can also see the very tip of one of your front top teeth, but it's not through yet. Along with those adorable little teeth, we've introduced you to more table foods, little baby yogurt bites, puffs, and you sat in your first restaurant high chair over the weekend at Coney McKane's and did so well. You're also finally starting to nurse for longer stretches again. You still do the best when we're in your room, and I often shut the door (to keep Anna from popping in), but you've done alright in the living room a few times.

You love: Anna, Mommy (you're a little attached), when Daddy is silly with you, swimming, chewing on everything, eating what we eat & feeding yourself...

You dislike: When things get taken away from you, being put down on the floor when you're tired, when I walk past you and don't pick you up, dropping your paci out of your bed, getting your nails trimmed...

You're a chatterbox, have adorable brown eyes, the longest eyelashes, and are just such a happy guy. I love how much more interactive you are now -- the fun is just beginning! We love you so much!

Sunday, September 23, 2018

Kalydeco, Five Years Later

I've been on Kalydeco for five years (August 30th)! I can't believe it's been that long. This "miracle drug" has definitely changed my life for the better, but it hasn't been a cure, especially lately.

I've had a rough month, well, a difficult last 7-8 months, really. Ever since Calvin was born, I've struggled to get my lung function back up to my baseline of mid-80s - it's been hovering in the high 70s the last two times I had my PFTs done (which really isn't that much of a decline, but it is to me). I've been on Cipro twice, May and August, Cayston doesn't seem to be working as well for me (causes hemoptysis), Tobi makes me feel super tight and makes me cough all night long. I'm getting frustrated and I feel like I'm slowly running out of options (that aren't IVs). I've also been battling on & off hemoptysis for the last month which has been really annoying. I don't feel terrible, but I don't feel clear either. I just want to go back to feeling normal (my normal). I'm a little nervous about my appointment next week, especially since our whole family has this disgusting productive cough.

Overall though, I feel like Kalydeco has been amazing for me! Before I started taking Kalydeco, I really struggled to gain and maintain my weight, I was around 108-110 lbs. My lung function fluctuated between high 70s and mid-80s. Today, my weight is steady around 130-135 lbs and my lung function has been in the mid-to high-80s until earlier this year. Considering that the average CF patient typically loses a bit of lung function each year, the fact that I've been stable for the last five years is a huge success!!

I've had two full-term successful pregnancies (and our angel babies), maintained a full-time career of teaching, started my Master's degree and maintained my health.... I'd call that a win! All thanks to two little blue pills per day (plus all of my other treatments). Unfortunately, it seems like CF is starting to show its ugly head while I'm trying to be busy living my life lately. I hope that my doctor and I can come up with a new plan of attack because I have way more living to do and I'm not going to let this hiccup bring me down!

**Oh, and one of the CF nurses just emailed me on Friday asking if I wanted to do another round of genetic testing to see if they can figure out my second mutation (I have G551D & the other is unknown). Of course I enthusiastically replied YES! I'm so curious to know what the other mutation is and if we'll get anymore information when we find out. :)

Calvin, 7 Months

Oops, I just realized I never finished this post.... better late than never, I guess :)

  • Finally rolling from back to belly, but only over one arm
  • Getting much better at sitting up on his own
  • No teeth yet
  • Wants to crawl and walk so bad!
  • Getting better at eating food - actually opening his mouth for the spoon and says a very enthusiastic "Mmmm" when the food goes in. 
  • You've also learned how to spit/blow raspberries.... that's fun while eating
  • Would rather feed yourself, so you've tried lots of regular non-baby foods
  • Still super distracted when he nurses and/or takes a bottle during the day, which means he's still getting up at night to eat
  • I started sleep training (again!) and hope to stick with it this time because I'm exhausted. I'm trying to teach you to self-soothe overnight when you wake and it's not time to eat yet.
  • It worked! For the last three nights, you've slept from 7/7:30-4/4:30 without waking! I feed you when you wake around 4 and then you'll typically sleep until 6-7. :) 
  • But now your naps are crap!
  • Began swim class & love it
  • Lots of babbling, yelling, screaming 
  • You have a very loud, angry cry when you're mad
  • Now that you can roll both directions, sometimes you'll fall asleep on your belly or on your side, it's so cute (except when you face is directly into the mattress!)

Monday, September 3, 2018

4 Years Old!!!!

To my big girl,
This year has been the most challenging so far, but you've also grown so much!

You finally broke the 30-pound mark and are 40 inches all. That means you've gained 4lbs and grown 4 inches this year! You're still very petite, but you've got a feisty personality and have no problems holding your own.

Open House 2017 (left) & Open House 2018 (right)
You've completed one year of preschool and you loved it! You've learned so much, made some friends, and even got invited to a couple birthday parties this year. You know all of your letters and most of their sounds, you know your full address, you can count by tens to 100, you can consistently count to 29, need a reminder of 30 and then can get to 39. You want so bad to be able to count to 100 -- you're getting closer. You can write your first and last name, and even decided to change your name to Elsa at the end of the year. Your teachers are wonderful and I know you're very excited to be going back this fall.

This year you've tried tumbling and t-ball, and continued swimming. You really enjoyed tumbling, but I couldn't stand it because it was so unorganized and you basically ran around and did whatever (not just you, all the kids because there was no structure). After tumbling, you wanted to go back to swim, so we kept that up over the winter. You really have gained a lot of confidence in the pool this year. By the end of this summer, you were going under (shallow) water to grab rings. That's huge progress for you! You're learning how to swim with your face in the water more and you're more comfortable jumping in -finally! This spring you took a break from swim to try t-ball. Your team was made up of older 2 year olds, 3 & 4 year olds. It was like herding cats some days, but you did well. You were a great listener to your coaches, even though I think you enjoyed playing in the dirt more than t-ball itself. It was cute to watch you play!



You love all things Elsa, Frozen, princesses, and dressing up. But you also love bugs, butterflies, playing in the dirt, being barefoot outside, jumping in puddles, playing in the rain, fishing, climbing on everything, playing with your babies, coloring, drawing, taping your creations/art all over the house...



Oh little girl, you are full of sass! Daddy and I are really trying to have you use manners/nice words, be kind to others, and most of the time you are, but sometimes you are just so sassy which drives me crazy. You and I have similar personality traits, in always wanting to be in control, haha, so we often butt-heads. You think you know everything (already) and sometimes I just need to pick my battles because its not worth the fight. I think part of the behavior comes with your age and I think some of it has be learned from being around other kids this year. I hope that this next year you mature and tone down the attitude just a bit (please!). :)

You finally became a big sister this year, and you are very proud of that title. You didn't know what to expect when Calvin was first born, but you've been so good with him. You would get excited over the littlest things (when he opened his eyes or his mouth, haha) and you always want to take pictures of him. Now that he's becoming more interactive and mobile, you're getting more excited too. So far you're pretty good about sharing some of your toys or stuffed animals with him. You always say, "I'm the big sister and the big helper" and you refer to yourself as "sissy" which is pretty cute. You call him Bubba, like I do, when he's upset or when you're encouraging him to do something. You get just as excited as I do when he learns something new like rolling over or sitting up. You're still learning how to share adult attention, but that will come. If someone is playing with Calvin and making him smile/laugh, you like to get all up in there and make him look at you instead. You want to feed him with the spoon (and try all of the baby foods he's having - don't worry, you're not missing out!). I am proud of the way that you behave around him and I love how much you love him! I hope that the two of you can grow up and be close with one another.

4 years old & 6 months old (3.5 years apart, to the day)
Other random things I can think of: you learned how to ride a bike with training wheels this summer; you got your ears pierced the night before you turned 4; you can do hopscotch (not sure where you learned that); we still read a book before bed every night; we've accomplished 1,000 books before Kindergarten this summer; you don't like spiders; you still love the color blue; you now know how to work the TV remote (its terrible because you switch shows every 5 minutes); you hate doing your laundry; you're pretty good at keeping your room clean & organized; you still love Chinese food; you prefer taking showers over baths; you love being outside; you love being silly!

I can't believe you're four years old already! I can remember the day you were born so clearly still. You've grown up so much right before our eyes and we're so very proud of you. Keep being kind, but don't lose your spunk either, big girl! :) We love you!
~Mommy