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!
Tuesday, March 11, 2014
Friday, March 7, 2014
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!!
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!!
Tuesday, February 4, 2014
RSV has invaded
Written on Tues 2/4/14
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!
Sunday, January 19, 2014
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!
Saturday, January 18, 2014
Dress up
Kelsie got a big trunk of dress up clothes for Christmas! Here is just one of her adorable outfits...
Just gave me a little glimpse into the future and I had to hold back tears just imagining that day! :)
Just gave me a little glimpse into the future and I had to hold back tears just imagining that day! :)
FROZEN!
Kelsie is absolutely crazy about the newest Disney movie, Frozen! We have seen it 4 times in the theatre and its all she talks about, and all she wants to play. She got the 2 Princesses from the movie from Santa and they have definitely been the hit toys! But what she loves even more than the dolls themselves is pretending she is actually one of them! She asks me to play the part of one of the sisters every day! On Monday of this week, we stayed home all day and I cannot even count how many times I had to lay on the floor, pretend to be "Elsa", get woken up by my sister "Ana", get asked to build a snowman, run around the room, make magic snow, make ice, and rescue poor Ana after I struck her with my powers. It was cute the first few times and then I was feeling a little impatient, and then annoyed. But she would have nothing to do with playing anything else! ALL day. Every day, she is bringing out more and more of the scenes to act out and songs to sing. Its actually quite entertaining. She might just have a thing for acting one day!!
She has also started calling me "Elsa". At night after I put her to bed, she calls back out to me by saying "Elsa!" Elsa!..."I need ___". And she evens wakes up in the mornings and at naptime calling "Elsa". Starting to concern me ever so slightly... She does still call me mommy some too. But mostly its Elsa. The other night as we were wrapped up in a sweet hug, I said "I love you Kelsie" and she responded "I love you too Elsa". When I say, no I want to be mommy. She says "NO! You are Elsa" and same thing when I call her Kelsie..."No, I not Kelsie, I Ana!" Wondering how long this will last...?
Since the movie has a lot of snow and ice involved, we are even more excited to see it snow this year. So last week, I told Kelsie we should pray and ask God to send us some snow! So, low and behold...two days ago, we woke up to a blanket of snow in the front yard. I said to Kelsie "God made it snow!" and she became responded, "No, God didn't make it snow!!!! Elsa did!!!!!" Oh boy oh boy!!
Here is a video of us acting out one of the scenes where little sister Ana wakes up big sister Elsa.
http://youtu.be/0UnGWVPD_ss
And here she is singing the hit song from the movie "Let it go" - she doesn't know much more of the lyrics than that! ;)
https://www.facebook.com/photo.php?v=10101777405871208&l=5327085111850291311
She has also started calling me "Elsa". At night after I put her to bed, she calls back out to me by saying "Elsa!" Elsa!..."I need ___". And she evens wakes up in the mornings and at naptime calling "Elsa". Starting to concern me ever so slightly... She does still call me mommy some too. But mostly its Elsa. The other night as we were wrapped up in a sweet hug, I said "I love you Kelsie" and she responded "I love you too Elsa". When I say, no I want to be mommy. She says "NO! You are Elsa" and same thing when I call her Kelsie..."No, I not Kelsie, I Ana!" Wondering how long this will last...?
Since the movie has a lot of snow and ice involved, we are even more excited to see it snow this year. So last week, I told Kelsie we should pray and ask God to send us some snow! So, low and behold...two days ago, we woke up to a blanket of snow in the front yard. I said to Kelsie "God made it snow!" and she became responded, "No, God didn't make it snow!!!! Elsa did!!!!!" Oh boy oh boy!!
Here is a video of us acting out one of the scenes where little sister Ana wakes up big sister Elsa.
http://youtu.be/0UnGWVPD_ss
And here she is singing the hit song from the movie "Let it go" - she doesn't know much more of the lyrics than that! ;)
https://www.facebook.com/photo.php?v=10101777405871208&l=5327085111850291311
Saturday, January 4, 2014
Sleepover
Kelsie asked me tonight, "mommy, will you sleep with me?" And I replied, "no, baby, I'm going to sleep in my bed." And she sweetly said, "please mommy, it will be a fun sleepover." I don't usually lay down with her, but seriously...who could resist that!?
Monday, December 23, 2013
Kiser Christmas
So excited to see my Kiser family tonight and spend time with so many wonderful people that mean so much to me but I rarely get to see anymore. Thank you so much, mom, for keeping up this tradition and getting us all together as often as you can. Grandma would be so proud and I know she is smiling down on us tonight. Oh how I wish she could see how her family has grown in the past 14 years since she's been gone. How I miss her still! 💗
Wednesday, December 18, 2013
Christmas fun
This has been a fun Christmas season! Kelsie understands a lot more this year than last, of course, and she is just at a fun age full of joy and excitement! We have decorated the tree, baked Christmas cookies, built a gingerbread house, had a visit with Santa, had fun at "Little Elves Workshop" Sweetarts class, watched the new Disney movie Frozen, went Christmas shopping, wrapped presents, played with our Nativity scene, and most importantly talked about Jesus's birth and the reason we celebrate Christmas.
Some of Kelsie's favorite things so far have been carrying around the "widdle tiny baby Jee-us".
She wants to wrap presents all the time. She will get the wrapping paper and put several random toys on it, and then ask me to help her wrap it. Then she will give it to Nathan or I and say "Merry Christmas!" (or Happy Birthday)! She is definitely in the giving spirit. She is always trying to give us something and loves our excited reaction as we receive it.
Christmas morning is going to be so much fun!
Singing, dancing, and doing crafts at my SweetArts class in the "Little Elves Workshop" and Kelsie absolutely loved it. She kept looking at me saying, "dis so exciting!' and the entire week after she would talk about it and ask "we come back?" which means "can we go back?"
Some of Kelsie's favorite things so far have been carrying around the "widdle tiny baby Jee-us".
She wants to wrap presents all the time. She will get the wrapping paper and put several random toys on it, and then ask me to help her wrap it. Then she will give it to Nathan or I and say "Merry Christmas!" (or Happy Birthday)! She is definitely in the giving spirit. She is always trying to give us something and loves our excited reaction as we receive it.
Christmas morning is going to be so much fun!
Singing, dancing, and doing crafts at my SweetArts class in the "Little Elves Workshop" and Kelsie absolutely loved it. She kept looking at me saying, "dis so exciting!' and the entire week after she would talk about it and ask "we come back?" which means "can we go back?"
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| Tickle tickle tickle tickle tickle |
Tuesday, December 10, 2013
CF checkup
Here are some pictures from our visit today. Her doctor just moved so we got to meet her new doctor, Dr. Dellon and we just loved her! Kelsie was not shy either. She was talking up a storm and sharing all kinds of random memories with her!! "Member(remember), I jup(just)...." and on and on she would go with any random story on her mind. I just love how talkative she is! So much fun!
Checking her ears...(she LOVES getting check ups, and giving them too!)
A puzzle and a snack while we wait...
Reading a book to daddy while wait..
Monday, November 4, 2013
Memorable quotes by Kelsie
Kelsie is at the age where she says the funniest things and on many occasions, I have thought, "I need to write that down!" Well, this is going to be my "writing it down". Since I am terrible about keeping things organized, making lists, or utilizing pen and paper anymore, I think the blog (AKA - Kelsie's baby book) may be the best place to put it. I will also have access to it on my phone no matter where we are so I can just keep a log. Enjoy!
11/4/13 (age 2y 8m)- As we are sitting in the dentist, Kelsie was sitting on my lap and was about to get her teeth cleaned. I don't know exactly what I was doing but I think I was moving her hair around and kissed her or something and she said "top it, youre getting on my nerves". I was so shocked and have never heard her say that before. Not something she needs to say very often but its also a good thing that she is learning to express her feelings!
As I was reading her a bedtime story tonight she looked up at me and said with the sweetest face, "Mommy, I seepy...(and with a little pause and hesitation and a smirk) I need coffee." I couldn't help but roar in laughter. I don't even say that very often but its definitely a reminder that they hear EVERYTHING you say and are always trying to be more like you! Such a funny moment. I was laughing so much and she joined in. Very cute. And then she prayed. For all members of her family, as well as her baby dolls, Maggie (my parents' dog), and mommy's earrings. :)
11/3/13- Kelsie had been in bed for about 30 minutes. I thought she was asleep. Then I heard her yelling over and over "yook mommy, I doing exercise!!" Looked at the monitor and saw this. This girl keeps me laughing!
Kelsie had been in bed for about 30 minutes. I thought she was asleep. Then I heard her yelling over and over "yook mommy, I doing exercise!!" Looked at the monitor and saw this. This girl keeps me laughing!
11/4/13 (age 2y 8m)- As we are sitting in the dentist, Kelsie was sitting on my lap and was about to get her teeth cleaned. I don't know exactly what I was doing but I think I was moving her hair around and kissed her or something and she said "top it, youre getting on my nerves". I was so shocked and have never heard her say that before. Not something she needs to say very often but its also a good thing that she is learning to express her feelings!
As I was reading her a bedtime story tonight she looked up at me and said with the sweetest face, "Mommy, I seepy...(and with a little pause and hesitation and a smirk) I need coffee." I couldn't help but roar in laughter. I don't even say that very often but its definitely a reminder that they hear EVERYTHING you say and are always trying to be more like you! Such a funny moment. I was laughing so much and she joined in. Very cute. And then she prayed. For all members of her family, as well as her baby dolls, Maggie (my parents' dog), and mommy's earrings. :)
11/3/13- Kelsie had been in bed for about 30 minutes. I thought she was asleep. Then I heard her yelling over and over "yook mommy, I doing exercise!!" Looked at the monitor and saw this. This girl keeps me laughing!
Kelsie had been in bed for about 30 minutes. I thought she was asleep. Then I heard her yelling over and over "yook mommy, I doing exercise!!" Looked at the monitor and saw this. This girl keeps me laughing!
Friday, November 1, 2013
Halloween 2013
My favorite quote from last night: "Are you Tinkerbell?", Kelsie's reply, "No, I Kelsie. This jup (just) my costume!" In case anyone was wondering! ;)
We didn't do anything extravagant for Halloween, just went trick or treating around the neighborhood which was lots of fun. It was such a beautiful evening too! Near 70s so warm enough to not have to bundle up a small costume.
Several of our neighbors went a little far out decorating for Halloween (smoke, people dressed up with masks giving out candy from a "fortune teller" set, graves dug out in their yard with skeletons inside, eyeballs that lit up and flashing in the bushes, motion detector corpses that scared you when you walked by). It was pretty intense, and at times scary for the kids. I was afraid we might have to deal with nightmare awakenings last night but she didn't wake up thankfully.
She was a pretty little Tinkerbell though and enjoyed getting all the candy.
We didn't do anything extravagant for Halloween, just went trick or treating around the neighborhood which was lots of fun. It was such a beautiful evening too! Near 70s so warm enough to not have to bundle up a small costume.
Several of our neighbors went a little far out decorating for Halloween (smoke, people dressed up with masks giving out candy from a "fortune teller" set, graves dug out in their yard with skeletons inside, eyeballs that lit up and flashing in the bushes, motion detector corpses that scared you when you walked by). It was pretty intense, and at times scary for the kids. I was afraid we might have to deal with nightmare awakenings last night but she didn't wake up thankfully.
She was a pretty little Tinkerbell though and enjoyed getting all the candy.
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