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!!!

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!

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!!!

This One's About CF

Did you know this is a CF blog?! It sure doesn't look like it too much from my recent posts, but I like that. It shows me (and my readers) that CF isn't the only or main part of my life. Either way, here's a quick update on the CF side of things.

• Tomorrow marks three months of 100% compliance with my treatments!!
• Last time I posted was after my clinic appointment which went very well. Since then, I've received my blood work and chest x-ray results which came back great. All blood work is fine, A1C is 5.6 (woo hoo!!) and my chest x-ray was unchanged from last time. :-)
• About two weeks ago I started coming down with what I thought was going to be another chest infection and another round of Cipro. It started on a Thursday/Friday and I felt like crap by Saturday with a nasty, dry cough. I made sure to do extra treatments Friday, Saturday and Sunday to help kick whatever was developing. Thankfully I was also due to start my Cayston, so that was delivered on Saturday. Between the extra treatments and Cayston, I am so happy to say that I was able to fight back and NOT have to go on oral antibiotics!!!
• I feel this is absolutely attributed to Kalydeco, in my opinion, because it's helping me stay so stable!!
• This made me so excited for two reasons-
• 1) I don't like the way Cipro makes me feel sometimes
• 2) The less oral antibiotics I take, the less resistant my lungs/body become to them, which means they'll be a good option for me longer. Once my body is resistant to oral antibiotics, that's when I have to use IV antibiotics. I am very lucky to not be resistant to any medications, especially at this age!!
• To keep it this way, I have to keep up with my health, but I also need your help! The Cystic Fibrosis Foundation's greatest fundraiser is right around the corner: Great Strides!
• The money that is raises goes directly to research for new medications and treatments.
• The more money we raise, the more of a positive impact we can make!
• My team, Colleen's Friends and Family will be walking in at least two walks this spring - DeKalb (April 16) and Bloomington (May 12).
• My DeKalb fundraising page is: fightcf.cff.org/goto/dekalb2016
• I also have an event on Facebook and a link on my Team Facebook page.
• Finally, take a look at downloading the FREE Great Strides app on your phone. It's super easy to use, has all information you need and has easy ways to update and ask for donations via social media! :)

18 Months Old

A year and a half, how can it be?! I feel like we just celebrated your first birthday, and the last six months have flown by!!

I'm pretty sure I said it in your last post about you being a "full-blown toddler", but I think I was wrong. NOW you're definitely there, tantrums and all. :-)

My little reader

You are transitioning from two naps to one per day, which means you can get quite cranky in the evenings and tend to cry about little things, but usually it's not too hard to distract you with something else. Other than some evenings, you are just the happiest little girl!

Here are some things about you at this age that I just don't want to forget:

• No more paci!!! We got rid of it the second week of my winter break and it wasn't too bad. The first night I cut the tip off which really pissed you off. So the next night I just didn't give it to you at all. Any time you'd ask for/about it, we'd remind you that pacis were for babies and that you were a big girl. I also had you throw one of them in the garbage, so that helped, too.
• You're so smart. Sure every parent thinks their child is smart, but I am just amazed by how much you pick up, remember, and recall in the correct context. Ex: family members, animal names and sounds, objects, etc.
• You talk so much! You're starting to put 2-3 words together and you're usually pretty easy to understand.
• This is definitely the stage of "monkey-see, monkey-do". You have a ton of language/words on your own, but you also repeat everything - words and actions!
• You love to read books, especially the ones Aunt Katrina got you for Christmas with the flaps. You also enjoy animal books, dinosaur books, and The Foot Book by Dr. Seuss. One page in there I read it "slllllooooooooowww feeeeet, quick feet" in a slow and quick voice which you love and mimic every time!
• You're obsessed with "meme" which is what you call chapstick. You like to carry it around constantly and get really mad if we won't let you have it. It drives me crazy and I'm really tempted to get rid of it just like the paci! *Update, out of sight, out of mind for about the last week, yay!
• You love Ozzie and sometimes Archie ("Itchy"). You have to find them and hug them each night before bed("bet"). Ozzie tends to love you back, but will let you know when you've bothered him a bit too much, Archie still runs past you and keeps his distance as much as possible. We're trying to teach/remind you to be nice ("mice") instead of smacking or pulling his tail. :)
• If you don't know the name of something you just called it "iss" for this.
• When you see or hear something that you don't know you say "sat?" for what's that?
• You don't use the word no and answer yeah ("dah") to every question.
• You love to sit with me while I'm doing my treatments and taking my medicine ("messies"). You enjoy looking at pictures on my tablet and listening to your voice vibrate.
• We started swim lessons again in the toddler class and you're doing so well.
• You know the capital letter A and sometimes O, and you can count to two, and think everything is the color blue. :)

These last few months have flown by and I love this stage!! I love watching you discover new things. I love playing with you and listening to you play. Your imagination is starting to grow - you love playing with Grandma's kitchen and you've started feeding your little baby. I just want to soak up every minute with you because I can't believe how fast you're growing! 

This will be your last "months" post because saying anything over 18 months just sounds weird. You're officially a year and a half...and then I'm sure I'll find myself saying "she'll be two this summer" and "almost two" sooner than I can even believe! We love you so much baby little girl!

January Clinic Visit

Anna and I arrived home from a successful clinic day just a little while ago....but next time, remind me not to take a toddler on a six-hour round trip. :)

We started our day off around 5:15am, which is typical for us during the week. Tim accidently took the car to work because that's what he's used to, so Anna and I had to take the truck to Bloomington (luckily it's on the way) to switch it for the car. Poor Anna thought we had arrived at our destination and was not very happy with me when she went from one car seat into another. So for the next hour she was fussing and fighting sleep. Finally, she fell asleep and stayed asleep for almost another hour. We were on track to make it to clinic about ten minutes early, until we hit lovely Chicago traffic. Since we were completely stopped, I texted my doctor and let her know we'd be about a half hour late. The traffic ended up clearing quicker than I expected, so that gave us plenty of time to park and get in a diaper change/bathroom break without having to rush to check in.

So happy to be out of the car and in her "chair"

My appointment was pretty uneventful, which the doctor and I both agreed was a good thing. Thankfully, even though I'm not on Cayston right now, my lung function is pretty much the same as last time, at 88%. 😃 I've been lucky enough (so far) to not catch whatever Tim has and all the junk that's going around school. I hope it's able to stay that way these last couple months of winter, but that would be pretty much a miracle.

I talked to Dr. Dowell about getting an Afflo Vest, especially for travel, so she's going to see what she can find out for me before my next appointment. I'm also in the market for a travel nebulizer, one that can be plugged into the car. If anyone uses/knows a good brand, please let me know.

After seeing the doctor, we went to get my labs done and finally, a chest x-ray. I was concerned they wouldn't allow Anna in when I was getting the x-ray which would not allow me to get it, but they were very helpful. They x-ray tech just took her in the stroller behind where she stands and did both x-rays very quickly before Anna realized she couldn't see me. It worked out perfectly.

Anna really was a good sport during all of this at the hospital. She was talking to me more than I expected her to with people around, but of course, just stared at people when they talked to her. :)
Next time I take her though, it'll have to be a time where we come up the night before because that poor girl was so sick of sitting...who could blame her?! Every time we'd stop at a light she would say, "home" because she thought we'd pulled into the driveway; or while driving on the highway, many times she said, "Mommy, out!" As much as I know the doctors like to see her, and I like her to be comfortable with Mommy going to the doctor, I think next time she'll just stay with Grandma!

2015 - A Year of Mommy-ing

This is the 1st picture I took in 2015

This is the last picture I took in 2015 -
Someone loves their Daddy :-)

2015 was an amazing year! Of course it was extremely busy being a mommy, a teacher, a wife and a CF patient, but I wasn't going to let all of that get in the way of it being wonderful. I apologize for neglecting the blog a bit, but I don't have much spare time these days. This last year was filled with lots of family time, but I want more.

This year, 2016, I don't want to set lung function, weight, or exercise goals. I really want to step back from technology a bit - less Facebook, less Instagram, less pictures - just less being attached to my phone. I want to soak up time with our little family and enjoy the moments. Of course I love having all of the pictures to look back on, but sometimes it's just too much.

I've been very lucky to be as healthy as I am, so I really want to take advantage of it and really live this year. We may not go on any spectacular adventures or do crazy, daring things, but I want to be more present in daily life. So that's my goal this year. I hope that a year from now I can reflect and be proud of myself.

As for this blog, I will definitely keep it! I will try to write once or twice a month (or more), and definitely update after CF clinic appointments. I appreciate those of you who (still) read my posts and comment. Reading other CFer's blogs has been very beneficial to me, so I hope to be doing that in return for someone else. I hope this blog gives other CF patients, friends or family members hope that CF is not always such an awful disease. With that said, I'm going to spend more of my time living this amazing life despite CF. Here's to a family, fun-filled year! :-)

Merry Christmas!

From our family to yours,

 

 

Wishing you a very Merry Christmas!!

*Live*Laugh*Love*Breathe*