"Princesses don't do vests!"

Kelsie really resists doing her vest. It's a battle practically every day. When we tell her it's time, she often runs and hides even though she always gets to watch her favorite tv shows or movies while doing it. Today I told her and she put her hands on her hips, furrowed her brow and said, "Princesses don't do vests!! I don't want to do my vest. I want to be Rapunzel". I told her she could do both but that wasn't satisfying enough. She pouted for a while, hid behind a chair while I explained how much I love her and want to keep her healthy. I reminded her that she's been coughing some this week and the vest helps her get the coughs out so she doesn't get sick. She then surprised me by coming to me, hugging me and telling me thank you. She then asked for me to take her Rapunzel dress off and then she pulled her PT cart up to the couch (which she has NEVER done) and sat down waiting for her vest. I guess I said something right. It's not always that easy to get through but definitely makes me feel good when I do! 

Fun at the waterpark

We went to Emerald Pointe last week and had a great time splashing around. I took my mentee and her sister for what was their first time in a pool. They even ventured down the thrilling water slides (but then decided they didn't want anymore of that!). Nathan, Valerie, and Drew went as well. 

Kelsie screamed going down the water slides. I made her go anyway! Overcome those fears!

Quotes of the day

Kelsie says the funniest things like 3 year olds do. I always forget to write them down. I need to be better about that! 

Here are a few that I remember from today:

"I want a wiggly baby brother. Can you get one in your belly, yet me rub it?"

"Hmmm, I want something sweet...daddy's sweet, let's eat him!" as she said with a grin. 

"Mommy, you are very special to me..." (And as I was about to say awww..), she continued "because you are a toy to play with." Ok, I guess..kind of...  Then she later thought about it and said "you're not a toy, your my mommy."

"I yook yike a yady" as she looked at herself in the mirror wearing this: 

I think she was thinking of an "old lady". 

Earlier this week, she also said for the first time ever..."Mommy, you are a great mommy to me!" No idea where that came from but it was so sweet and sincere! I about welled up with tears right there.

And my favorite thing she says to me everyday, often out of the blue..."mommy, I yuv you...I yuv you for the always!"

She really does have such a sweet heart and we we share such a close bond. Just can't get enough of her!

Lazy summer Saturday

After being in the go so much lately, it was nice to have a day to just hang around home all day. Kelsie played nurse and gave her daddy a shot telling him to "grrrr....grin and bear it". And after nap, she had fun playing outside in her plastic pool. 

Daddy cut out sponges into different shapes and she was pretty excited about the Christmas tree they made! Christmas in July? 

My harvest for the day. 1 solo tomato. 

And rounded off the day with a little baking. Berry Crisp which Nathan declared the best he's ever eaten! 

Mmmmm so delicious! 

Star Breather

Kelsie had her routine CF follow up yesterday and did such an awesome job on her breathing tests! She did way better than they expected at her age technique-wise and her lung functioning was practically 100%! Her weight was 35lbs (74th%) and height was 39.5in (83rd%). She had to get blood drawn, a throat (sputum) culture, and a chest x-ray as well.  So by the end of the day, we were both ready for it to be over and she had a collection of Disney princess stickers from all the scary things she he done to her. She did great with everything. (But did have to be held down for the lab draw and sputum culture.) So hard for momma too! :( but it's just part of it! Good news is, we got all good news! She's doing great and we're so thankful!! 

She did so well on her PFTs, she got a certificate AND a sucker! 

She wasn't a fan of having to wear all this garb, but apparently it is new policy for all CF patients to be on contact precautions to prevent spread if germs. So we are ok with it. 

Look at all those stickers! But totally over it at this point! 

Hopeful news!

Today was a big day for the CF community. This drug targets Kelsie's type of CF. While there are still a lot of questions in my head regarding these new drugs, I still see it as really positive news and look foward to hearing more about it in the future!

http://www.cff.org/aboutCFFoundation/NewsEvents/6-24-Vertex-Phase-3-Results-Lumacaftor-Ivacaftor.cfm

VBS

This was Kelsie's first year of VBS and my first year volunteering! It made for quite an exhausting week with really late bedtimes but it was super fun and well worth it. Today, the kids wrapped up the week by singing the songs they learned throughout the week. It was just adorable. I was pleasantly surprised that Kelsie actually stayed on stage and participated. (Especially since she woke up sick this morning. Thankfully, she didn't sneeze or blow her nose on stage!) Afterwards she declared, "That was so much fun mommy!" I definitely had fun watching it. And she didn't seem shy at all being front and center stage! She even lifted her dress and covered her baby with it, giving the congregation quite a show. She and another little friend also had a little baby doll drama on stage. So funny watching her friend walk away with her baby, Kelsie looked around for it but then just picked right back up singing and dancing. So funny! And such a blessing watching these kids singing and praising the Lord!

Let it go

Here is a video of Kelsie performing the hit Frozen song "Let it Go" in her Elsa outfit, no less. 😊 ENJOY! 

http://youtu.be/XieBTfAwT38

And here are a few pictures of her dressed up playing with all her babies? Had you not heard that Elsa had a few children? 😉

3 year old rebellion

Parenting has taken on a whole new level of difficult this week! This mischievous, strong-willed 3 year old is making 2 look like a piece of cake! I can't count how many times this week she has thrown a fit. The easy way out  (giving in and saying yes) is usually (well almost always) the wrong way.  And what feels like the right discipline produces emotional meltdowns that are exhausting for all of us. Still they are necessary as hard as it is to witness. How do you consistently demonstrate love and grace while correcting the behavior and teaching respect and obedience. She must learn that crying and throwing a fit doesn't get her what she wants. But how many times must this testing phase play out before she learns that!? I keep trying to figure out the "why?" of her bad behavior but it just seems to be because she is testing her limits and wants her independence and her own way. Tonight was better so hopefully things will start to improve.   Sounds like I just need God to help me through this, right?! Through His example of love and grace, and through prayer that this new level of testing rebellion will cease! 

Backyard pool

It was the hottest day of spring so far so I had to pull out the little plastic pool. Here's a few pictures to show off Kelsie's enjoyment!

Memory!

My Kelsie has such a great memory, I am often amazed what she talks about! Every day, she brings up random memories. "Member (remember) mommy...." . It is usually something from the day before but often she brings up things that happened months, even over a year ago! Without any prompting!  But last night really took the cake and had me scratching my head for a minute... "Mommy, remember when I was hiding behind your belly button, in your tummy, it was really dark in there and I was crying"....Ummmm....what? For a second, I thought she remembered her time in utero...where does she come up with this stuff!?

Bedtime songs

Here is a sweet video of Kelsie and I singing songs at bedtime! Such a joy! I hope her sweet voice singing Amazing Grace blesses your heart as much as it did mine!

http://youtu.be/f3BzmX0BAqA

Freeze time

I feel like there has been a lot of special bonding between Kelsie and I this week. I can't put my finger on it, but its just all these sweet moments added together that have made us feel even closer. On numerous occasions this week, I have thought...I just wish I could keep her like this forever. 

I notice how sweet and loving she is and how she now displays affection towards me like I do to her. Sometimes, she will be sitting next to me or with her head on my shoulder and will just randomly say "I love you mommy". I then say "I love you too Kelsie" and she replies, "I love you more!" and on and on it goes! :) I can assure you, I wouldn't take anything for those moments. Absolutely priceless!

Somedays its like I can just see her changing right before my eyes! I can just see her maturing into this little girl day by day. I've decided 3 is this age where you still see them as a baby in some ways, but also start to notice this mature little person developing. They are able to have conversations with you and are so inquisitive about everything around them. They start to figure out how the world works a little more each day. I am finding so much joy just watching her and witnessing all of her new discoveries. I can just see her soaking in everything around her. Her curiosity and imagination are at a peak right now and I want to encourage every ounce of it! I love how she literally raises her little finger to scratch her head when you say a new word and she says "hmmm, what's a ______? (Today it was "art festival".) There are so many opportunities to teach, so many things to encourage and at the same time a responsibility to foster the right behaviors and tame the negative ones. I notice her trying to be just like me (reminding me to always be kind, speaky gently, be patient, speak respect, and behave like I want her to behave).

I am really excited about the next year with a 3 year old. I have heard 3 is the worst in terms of behavior and two weeks ago, I was believing it! But somehow we got over that one week of her really pushing the limits to the extreme, and this week has been completely better. We have spent a lot of time together and have had so much fun! I just love hearing what she has to say every day. I love hearing her heart express itself and learning what her mind thinks of. And I make sure I tell her too! What an absolute joy it is to be her mother and to watch her grow, day by day, minute by minute! More in love every day!

 Museum of Life and Science

Home all day yesterday...she had fever all day and was definitely quite the snuggle bug!

Such a sweet heart she has!

It is still hard to leave Kelsie behind when I have to go to work. I love my job, don't get me wrong, but I do really miss being home with her. Especially when she asks me to "please stay home and play with me" and says "but I'm going to miss you." And this morning she stood at the door with that pitiful look on her face as I drove away. No crying anymore, but clearly sad that we have to be a apart.

We do have a strong and wonderful bond, she and I. I can't even describe it. The love we have for each other is just something only we can understand. I feel it more every day. And it feels even sweeter now that she is getting older and more able to express it in words. Many times this week, she will just randomly be staring at me and say "I yuv you mommy!" There is nothing greater than hearing those genuine, heartfelt words from little one! Oh its just so sweet!

And the greeting I get when I walk through the door after coming home from work (or anywhere really) is just priceless! She runs to me yelling "mommy, mommy, mommy!" with that look of pure joy on her face as she wraps me up in a hug and buries her face in my neck.

Today, she did this and then said, "mommy, you yook so pitty!" She later told me again "I yuv you mommy, you sooooo pitty! You yook yike a pitty pitty pincess!" What sweet sweet words from that precious child! I love that she is learning to compliment others with no one even asking her to. I later told her I was going to change clothes but she said "No, I want you yook yike a princess!" I guess its safe to say she liked the skirt I was wearing! 

We also had our dinner outside tonight. Nathan picked up subs so it was a nice picnic outside. Weather was gorgeous!! 

Lying on my legs watching the clouds! 

3 years of gratitude

Three years ago today, I got the call informing me that Kelsie had Cystic Fibrosis. I still remember every horrible detail of that moment as if it just happened! The sadness, the fear, the disbelief, the uncertainty, the anger.... I really had no idea what her first 3 years would be like, but praise God, she has been such a healthy little girl! Today, she had her routine CF follow up, tried big girl PFTs for the first time, and continues to get a good report from her doctor. I just live each day with gratitude for how healthy she has been so far and pray that God will continue to protect her little body! Thanks to all of you who have and continue to support us along this journey!

 

Doing PFTs for the first time. After she did it she said "that wasn't so scary!" 

Tending to meltdowns

Well first of all, since I haven't updated the blog since Kelsie had RSV, I should say that it has completely cleared up. No more cough, runny nose, nothing! So thankful she got over it so well! Her next follow up with her CF doctor is Tues March 11 and she will get to do her first PFTs (pulmonary function test) without sedation. She will have to do different blowing/breathing excercises and they will measure how well her lungs work. I expect this will be normal (have no reason to think otherwise) but I guess there is a chance the CF is taking more a toll on her lungs than is visible on the outside. So we shall see. I'll try to remember to update after that visit.

The reason for the post today is to just share a sweet moment I had with her today. I want to look back one day and remember this because it was just so sweet and my mommy heart overflow! She had just had a long todder crying fit over naptime, and covers not being situated just right, and her pillow being messed up, and babies not fixed right, and this and that, and I had almost lost my patience! I had been back and forth to her room several times but the last time, I held onto my patience just a little longer and decided to just lay down in bed with her and hold her and sing to her. I sang several songs and she even requested Jesus Loves me.  Once she had calmed down, I told her I was singing one more song and then I was going back downstairs. When it was over, I was expecting her to start crying again. But instead, she said ok and then thanked me for helping her feel better saying "Thanks mom, you're the best!" That is the first time she has ever told me that with such sweetness and sincerity!! I'm am so glad I put aside my stern side in that moment and and just stayed the extra 5-10 minutes to attend to whatever emotional meltdown was going on inside her little head. It clearly meant alot to her and was so worth it! And definitely one of those moments I will learn from as well! Love that girl to pieces!!

RSV has invaded

Written on Tues 2/4/14

Kelsie has her first bad respiratory infection. If started last Thursday (5 days ago) and has literally beat us up. Poor Kelsie has coughed so violently, it is scary! 

The cough started on Thursday afternoon and the unusual and harsh sound of it gave me the sinking feeling that it was going to be something bad. And sure enough, it has been terrible! Thursday night she spiked a fever of 102 and by morning after the ibuprofen wore off, it was 104.1. She was coughing to the point of gagging, and breathing faster. I took her to the doctor and they did a viral respiratory panel, a chest X-ray, a CBC and blood culture, an antibiotic shot and also ordered oral antibiotics. The chest X-ray and CBC later showed it looked more viral so we held off on the oral antibiotics. 

We went back in yesterday and found out the viral panel was positive for RSV. That virus can be very serious in babies but in older kids and adults, it usually just looks like a cold. However, it can still hit younger kids in the lower respiratory tract and cause more problems breathing, which has been the case with Kelsie. Because she has CF, we have to worry more about the potential of developing a bacterial infection in her lungs. The extra mucous created by the virus will be a breeding ground for bacteria. And the nature of the disease is such that her mucous is going to be stickier and more difficult to clear, making it easier for bacteria to settle in. Hence, the cause of my increased worry! 

So this is kind of a summary to catch you up on how she has been since this all started. Friday night she slept 12.5 hours. Still coughed some and had a fever of 104 but she slept most of the night. The next 3 nights, however, have been a different story! She coughs as soon as she lays down and cannot get more than 10-15 minutes of sleep without waking up coughing. And her cough isn't something she can just sleep through. It has been so forceful and gagging that she has to sit up and almost throws up. She is crying each time, saying it hurts and she needs to throw up. And she is clearly just so exhausted from all the energy if takes to cough, on top of not getting any rest for the past few days. The best way I have found for her to sleep is on me. Which is what she is doing now. (Thank God for this little iPhone so I can still feel semi-productive.) 

I just feel so helpless at night. I hold her upright as long as she will let me and that helps until her next coughing spell. But last night, I don't think I slept at all until 5:30 this morning. Every time I would get her to sleep and make it back to my room, she would wake up again! She finally got a little rest this morning between 8-10am and is trying to take a nap on my chest now. She has already had 2 bad coughing spells in the past hour and a half but resting better than yesterday at nap so that's good. She has still had fever too (day 5 now). Her pulmonologist called in an oral antibiotic because she is worried that this is developing into something bacterial and likely inevitable that she will need antibiotics. 

So we are starting that and praying for a better night tonight!! And a quick recovery!! Her doctor did warn that it may take her a while to get over this cough. 😥 It is just sucking all the strength out of her! It can't go on at this level much longer! At least I hope not! 

Sweet little momma

Babies! Babies! Babies!! 

She goes to bed like this every night. We have to line them up beside of her and she has to cover them up just right! She even calls out to me at night to fix their covers when they get pulled off. 

Nurse Kelsie taking care of princess Ana!

I found her in her room reading to her babies. So sweet! 

3 generations I guess! Lol