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

Thursday, August 9, 2018

Calvin, 6 Months

Bubba,
You are such a silly and happy little guy! This month you've been a bit extra fussy because you're growing so much and you're beginning to teethe. You don't have any teeth yet, but I'm sure they'll be popping through soon. Everything you can get your hands on goes straight into your mouth. You're still drooling a bit, but definitely not as much as you did last month. Your (night) sleep completely sucked for a couple weeks this month, where you were getting up every couple hours again. I'm hoping with school starting up again, the routine/schedule might help. I hate to put it in writing, but you've been down to only one nursing session overnight the last few nights, so we'll see if that continues....doubt it.

You have finally mastered rolling from your back to your belly! Of course, now you won't stay on your belly for tummy time very long, but that's okay. We're working on trying to get you to roll from back to belly, but you just want to stand that your legs don't cooperate. You LOVE to stand and want to walk so bad! Whenever you're on your back, you do these little crunches, where you lift your head as high as you can, usually touching your chin to your chest (you have very strong abs!). You don't want to lay on your back anymore! We've been working on you sitting up and you've gotten a lot better the last few days. You can sit by yourself for a little bit, but forget and then fling yourself backwards. I'm sure by the time you're seven months, you'll have it down. Daddy and I can't wait for you to sit on your own so that you can sit in a restaurant high chair, sit in a cart at a store, sit on the floor and play, and so we can switch you to a convertible car seat. You're so heavy to lug around in your infant seat, it'll be a lot easier when you can sit by yourself and we don't have to carry you in your seat anymore.

You have the best giggle and laugh ever, and you're very ticklish. You love watching Anna, you smile at her all the time, and I think watching her run around all the time makes you want to get up and go so bad. You babble a lot more, and of course say da-da-da all the time... and I think you're finally starting to recognize your name.

You've been introduced to several foods this month. I thought you'd be all about it, but you're quite indifferent. You're still learning that you need to open your mouth first, before the spoon goes in, but you do really well with the food once its in your mouth. You've tried: rice cereal, peaches, apples, pears, green beans, melted cheese, & ice cream.

Things you love: bath time (I can't wait to start swim lessons with you soon), jumping, standing, chewing on everything, your caterpillar toy, Hughes (toy), crunchy/crinkly books

Things you're not a fan of: laying down, sleeping through the night (ever), when you can hear me but can't see me

And yes, the mohawk is all natural (but I do stand it up after your bath when it's wet)

Tuesday, July 10, 2018

Calvin, 5 Months

To my big boy,
You're such a happy little guy! Every single person that meets you describes you as happy and I just love it! You smile at everyone you see and are totally a people-person. :) This month you've started making more noises (screaming, chatting, blowing bubbles a little bit), especially when you're chewing on something. You get very excited about a lot of things and throw your whole body back when you smile! For as much as you never stop moving, I'm really surprised that you're not rolling over all the time. On June 12, you rolled over 4 times, so I think it's safe to say you know how, it's just whether you want to or not. You've only done it once since then and it was probably on accident! You do really well on your tummy though and tolerate your tummy time for longer periods. You've also learned how to scoot in a circle while on your tummy, so that's just how you've been getting to things instead of rolling - whatever works. 

Your hair also makes everyone smile! It's grown in in stages and you can see it when you look closely. You still have about 5-6 super long hairs on top of your head that have been there since you were born. Everywhere else, its slowly filling in, but looked like a natural mohawk for quite a while. It stands straight up on your head, just like Daddy's. 

At your four month doctor appointment you weighed 14lbs 7oz (up from 12lbs at two months old), although seem to be thinning out a bit in your belly/torso. You're completely in 6 month clothes and some 9 month brands that run small. You're in your last pack of size two diapers and then I'll be moving you up to threes to help contain your blow outs. 

Since I've been home with you all summer, we've really been working on a more consistent routine for naps and bedtime. You've taught yourself how to fall asleep without having to nurse to sleep. You sleep in your crib really well, and seem to prefer it over being held to sleep. You typically take a really good, long morning nap and your others are shorter, but that's okay. We've had some really rough nights this month, and one night of you sleeping from 8:30-4:30! I've been doing a bit of sleep training with you and you're getting better. Until yesterday... you were pretty fussy in the afternoon and evening, and it looks like you might be in the beginning stages of getting your first teeth. Your gums look a little bit swollen on the bottom and you want to chew on everything! The amount of drool that has come out of you over the last week or so has been a little crazy. 

Things you love: people, being outside, seeing what's going on, chewing on anything you can get your hands on, your Mickey toy, baths, sitting upright, curling your toes (all the time!)

Things you dislike: When you drop your toys - you get really mad, when Mommy won't feed you every hour or two at night (we're working on this!), being on your tummy for more than 10-15 minutes at a time.

I have loved being home with you this summer! I love your outgoing personality and your adorable giggle! :)

Love, Mommy

Thursday, July 5, 2018

The Big 3-0

That's right, folks -- I am 30 years old today!! I'm sure that when I was born doctors didn't think I'd live to be thirty years old. But here I am, still kickin', doing pretty well if I do say so myself... :)
To live with a chronic illness isn't always easy, but I've tried to live the last 12+ years with an attitude of not allowing CF to control the path of my life.

In the last 12 years, I've graduated from high school. Met the love of my life. Graduated college. Got married. Became a teacher. Bought a house. Became a mother (x4). Started grad school....just to name a few things :) I am proud of how far I've come, but know that I'm not even close to living life as full as I absolutely can. I hope that I can soak up every minute of the next thirty years and then some!

To help celebrate THIRTY years, I am not asking for birthday gifts or a big party. I'd love to reach my fundraising goal of $5,000 for our Great Strides team. Currently, we have raised $3,285 which means we have $1,715 to go. Any donation to the Cystic Fibrosis Foundation is GREATLY appreciated and helps go towards research for treatments to help improve the quality (and quantity) of my life!


Friday, June 8, 2018

Calvin, 4 Months

To my baby boy,
You're a third of the way to one year old and growing right before my eyes. I feel like this month has been the beginning of your many-to-come developmental milestones. This month you've found your feet, you've learned to fall asleep on your own without nursing, you're sleeping better at night, you're learning to grasp toys/objects and bring them to your mouth, you've started giggling, started sucking your left thumb, and you're making so many more sounds.

You are definitely a people-person and love to know what's going on (and that you can see me). You love riding in your carrier (as long as you're facing out), smiling at everyone (but you have a sweet spot for your sister!), and you always want to be sitting upright when you're awake. But I think the happiest you are is when you're in the bathtub! You get SO excited every single time, the whole time - kicking your legs fast and hard, flailing your arms, grinning with happiness - it's adorable! I can't wait for you to do swim lessons in a couple months! :)

Physically, you're growing so much, too. You're still in size two diapers, but they actually fit you like they're supposed to now. Your summer clothes are a mix of 3 and 6 months, and I'm guessing by the end of this month you'll completely outgrow your three month clothes. Along with your growth this month, your umbilical hernia has shrunk. You now have a regular sized belly button. :) You also have the longest eyelashes!

Sleep is something I've really been working on with you the last couple of weeks. Selfishly, I was over getting up a million times a night, and physically you're clearly not starving, so we're working on less wake-ups overnight. I know that four months tends to be a difficult time for sleep for babies, so I'm hoping this will help you. You've transitioned out of your swaddle and Love to Dream ("straight jacket or flying squirrel"), and now can sleep well in your sleep sack or just whatever you're wearing.

You're a drool/slobber mess, constantly chewing on your hands or anything you can get in your hands. Your hair stands straight up on your head and many people think we style it like a mohawk - it's all natural! :) You've rolled over, twice, from your belly to your back, but I'm guessing it wasn't intentional (or maybe you just didn't like the way it felt) because you haven't done it since. You love to be in your exersaucer and your in-between the door jumper because you can kick and use your legs.

Your adorable personality is growing daily. You're a silly boy who loves to smile at everyone. You especially like to smile and talk to me while you're nursing. Frequently, you'll unlatch just to smile or chat with me before going back for another drink -- it's super cute! This summer is going to be so much fun with you and Anna. You both adore one another and it's so sweet watching the two of you interact with each other. You love to smile and her while she talks to you or reads you books. This summer will be fun, but I know next summer will be even more exciting when you two can really begin to play together! :)

It's only going to get more fun from here and I'm looking forward to it. :)
Love, Mama