Kelsie and her friends.

Kelsie absolutely LOVES playing with all her babies and stuffed animals. She holds them, talks to them, hugs them, plays with them, pats them, and wants to eat and sleep with them every day.  I love watching how she plays with them and it somehow reminds me how I am teaching her to love others. I see her "loving" them like I show love to her. And that makes me smile. Elmo and Baby ("bay") are her favorite. But she often likes to hold as many as possible. And sit with all of them all around her. There is also Mickey("mimmie") and Minnie ("mimmie"), Donald ("nohn-uld"), Mouse ("moush"), Carolina (the cheerleader doll - "nigh-na"), Ramses ("reh-re"), Hippo ("heppo"), Giraffe ("raf"), and about 4 other baby dolls which she also just calls "bay" for baby. (We haven't gotten to the naming phase yet!)  I love this stage and think its absolutely precious to watch how much she loves playing with them, because to her, they really are her little friends.

 

Happy girl!

 

 

 

 

Elmo and Donald had to do PT too. :)

Every day she brings me the vest and Elmo and baby

wanting me to put it on them. She says they like it. :)

 

Elmo and baby always have to go with us in the car now.  



And yes, even inside the restaurant. 



And of course they go to bed with her too.  





 

Lovin it

I wouldn't take anything for the days I get to spend at home with my girl. Its not always easy and its often exhausting, but the memories we make together every day will never be replaced! It is something I hope I never to take for granted! Every day I think how much I love that little girl! I am so blessed to have her as my daughter. She brightens my world.

20 months old

We're approaching 2! I can't believe my baby is growing up so fast. I guess like every other other momma, I'll be saying this the rest of her life! She is so much fun and I am treasuring these moments of toddlerhood.

Favorite things:
Cooking, Elmo, baby dolls, Fresh Beat Band, and my iPhone. The tv and phone are 2 things I wish we could do away with (takes away from that all important play!) but they are necessary to get in her required PT.

Favorite foods: cheese! Oatmeal, strawberries, macaroni and cheese, corn on the cob

Likes to spin in circles

Says lots of animal sounds: dog, puppy, cat, cow, pig, sheep, bird, elephant, monkey, lion, bear, dinosaur, owl, snake...

Can point out many objects in a book (or anyway really). Such as: "where is the"...apple, dog, girl, ball, flower, pig, farmer, star, moon, tree, house, sock, shoe, balloon, etc (she still amazes me with this sometimes)

Will name objects when you point and ask "what is that?" whether in a book or just everyday things.

Loves to talk about papaw cutting down trees which he did a month ago and she has talked about multiple times a day, every day since. Says. "papaw"then makes the sound of a chainsaw, and says "uh oh". Every day!!!!

Does a lot of role play with her babies...feeding them, putting them "night night", loving on them, pushing them in the stroller etc.


Ok our walk is over, now time to stop writing and play!! (writing this from my phone as I walk - ultimate multitasking if I must say so myself!) ;)

Cystic Fibrosis Fundraiser

We are participating in a fundraiser for the Cystic Fibrosis Foundation this Saturday and are asking for your support. We will be bowling in an event called "Bowl Away CF" this Saturday Oct 20th. We have set a goal to raise $5,000 in funds that will go directly to the CFF for research of new life-saving treatments for people with Cystic Fibrosis. We hope that these efforts will one day discover a cure for this terrible illness. To donate to support our team, "Team Kelsie", please visit my homepage and "Click to Donate". Everything is secure so you can be sure that your money is going directly to the CFF by donating online. Any donation amount is greatly appreciated. If you do not feel you can donate monetarily, we completely understand, just ask that you continue to pray that one day a cure will be found. Thanks so much and love to you all! Here is the website where you can donate if you would like: http://www.cff.org/LWC/KimberlyHouston

The organizer of this fundraiser asked if I would share my story, so I thought I would put it on the blog as well.

Our daughter, Kelsie, was diagnosed with CF at 2 weeks of age after it was discovered on her newborn screening test. My husband and I had no idea we were carriers of the CF gene and were naturally shocked and devastated at the news. Looking ahead, we were faced with heart-wrenching fear and uncertainty wondering how this diagnosis would affect our little girl and our entire family. It was a very difficult few weeks as we processed the news and started to educate ourselves about the disease and how to manage it on a daily basis. The initial visit took almost an entire day as we met with healthcare professionals from various disciplines. I remember I kept tearing up, thinking, I can't believe this is happening. This is my first child, the daughter I have waited my whole life for, she is 3 weeks old and this is supposed to be the most joyous time of my life. Instead, I am sitting here in a hospital hearing about this disease that will require her to take medicine every day for the rest of her life, sit through chest PT & breathing treatments on a daily basis, suffer from recurrent respiratory infections, struggle to breathe, endure multiple hospital stays, and it will likely take her life at an early age. The fear and the distress thinking about all of those inevitable factors threatened to consume me and rob me of the joy of being a new mom.

But I decided I would hunker down and stop dwelling on the negatives and the “what ifs?” Instead, I would focus on taking the best care of Kelsie that I possibly could and make sure that she had the same opportunities as any other child. I would do everything in my power to make sure she never felt held back by CF and would do all I could to keep her as healthy as possible. I quickly learned that the list of therapies to do the latter was quite extensive! As a new mom, I was exhausted. As a new mom with a child with CF, I was doubly exhausted, both physically and emotionally. I still feel that way most days. But every day with her is still wonderful. I absolutely love being with her, spending time with her, teaching her new things and doing all the mother-daughter things we can do together. But keeping up with managing her disease is a job (and we will soon be tacking on even more therapies that will make it even busier). She currently takes about 20 pills per day. And gets chest PT 30 minutes twice a day every day when she is healthy and even more when she is sick. She has to take 4 capsules (we have to open each one up and sprinkle it on applesauce) before she can eat anything or even drink her milk. It is time consuming, difficult, and stressful doing this for each meal and each snack, whether in your kitchen, in the grocery store, at church, or in your car, especially when you have a hungry and inpatient toddler who is ready to eat. But it is the only way her body can digest and absorb food so it is absolutely vital for her. There is also just the mental battle of balancing everything nutritionally (salt, fluids, fat, calories) and worrying about infection risks/prevention. It is hard to explain - there is just simply a lot to think about every day.

Kelsie is now 19 months old and has done very well so far with her illness. She has only had 3 colds in her life, but 2 of them quickly turned into a sinus infection (a complication of CF). She is currently being treated for the 2^nd sinus infection with a 20 day course of antibiotics. This is her first real cough since she was born but I can't help but think, this is only just the beginning. As a pediatric nurse practitioner, I see kids with cough every day and generally don't get too excited about a little cough and cold. But with Kelsie, the cough is more than that. A lot more than that. For me, her cough somehow represents a lifetime of lung infections and respiratory symptoms. So every time I hear it, I cringe. It also makes me worry about the additive effect, worrying that each infection is just going to do more damage each time. And no matter how far I have gone to accept this diagnosis, there are days, I still can't shake that looming fear. I try not to let it stand in my way of being the mom Kelsie needs me to be, but it is still there. It's like a storm cloud off in the distance. It is beautiful and sunny where you are now. Everything is bright and lively but you can't help but notice that ominous cloud ahead. You know it is coming, you just don't know how long it will take to get here. And you know after one hits, there will be a series of others popping up along the way. So you do your best to enjoy every single minute of the sunshine because you have that sliver of fear that the storm just might take your sun away forever.

My sunshine – my sweet Kelsie - is the happiest and most vibrant little toddler who is full of personality. She is independent and resilient. She is strong willed and determined. She is so affectionate. She is very social, saying “hi” or blowing kisses to people she doesn't even know. She is so smart. She is beautiful. And she is just like any other child her age. I think of all of her qualities and I can already tell she is going to do something great one day. She is going to be successful, she is going to make an impact on people, and she is going to love life. The only thing that will threaten to stand in her way is this disease. It will tag along beside her every day for her entire life. There will be days it will be somewhat forgotten as the pills and treatments will be just as routine to her as brushing your teeth is to you. But there will be other days when it will feel like it is suffocating her, both literally and figuratively. She will never get a break from the meds, the treatments, or the thought of a shortened life expectancy. That is, as long as there is no cure. The Cystic Fibrosis Foundation has done amazing work to date researching new therapies to improve the quality of life for children and adults with CF. We cling to the hope that they will continue to unveil new discoveries that may one day lead to a cure for this disease so that no one with CF will ever have to suffer the consequences of this terrible disease again. Please help us fight this disease by supporting the foundation that funds this vital research. My daughter's future depends on it.

 

Pumpkin patch

We went to the pumpkin patch yesterday and Kelsie really enjoyed it. She is at the age where she can tell you yes or no if she likes something and we got a lot of yes's yesterday. She got to play in a corn crib (which she didn't really enjoy), walk through a maze of hay, sit on a tractor, look at the goats, pet a bunny rabbit, pick cotton, walk through a pumpkin patch, and climb on hay bales. Even though she has been sick, she still acts like she feels fine. I can tell a slight difference in her though but also think part of that is just from not sleeping well. We went to the pumpkin patch yesterday after she had 1) fallen asleep during PT getting a 10 min catnap, 2) taken a 40 minute of nap with persistent cough interruptions and 3) taken a 10 minute nap on the way to the farm. But she's a little trooper and woke up happy. She wasn't 100% but still had a great time!

The dreadful cough

Kelsie has her first official cough. She was treated for a sinus infection before but never had any coughing. This time all she has had is cough. She had the high fever last week. Then nothing but a a few coughs here and there. Some days she wouldn't cough at all, other days she would cough 3-4 times. Then it started ramping up last Thurs and she coughed probably 10 times during the day then a few bad coughing fits that night. She had also been sneezing some, so the doctor told us to try some Zyrtec for a few days (but no more than 3-4 as the antihistamines could dry out her secretions even more than they already are). She said if things did not improve that she would start antibiotics. Well things didn't improve. The cough actually got a lot worse. You can tell she is coughing up a lot of mucous, but it sounds like it is all coming from post-nasal drainage. It sounds like the mucous is sitting in the back of her throat and she has to cough to break it up. Sometimes I can hear it rattling and if I tell her to cough, she will. It is definitely affecting her sleep because when she lies down, it starts draining and causes her to cough. She couldn't even nap yesterday because she coughed the first 30 minutes straight. Last night she coughed on and off for a couple of hours. I held her in my bed for a little while then laid her back down after midnight and she slept well the rest of the night. She has had a couple of little coughing fits tonight but it seems to be better so far.

Her doctor did start her on antibiotics today. Augmentin for 20 days. Thats a long course of antibiotics by the way. Typically, we treat kids for 10 days for infections like this. I asked her doctor why so long  and she explained that they treat kids with CF longer than usual. She said she debated between 14 or 20 days but because she thinks its a sinus infection she decided to treat her for 20 days. However, she said if the coughing goes away completely, we can stop it at 14 days. I certainly don't want her on antibiotics unnecessarily but due to the nature of the disease, I know she is likely going to truly need them more often than not. In this case, it seems as though she got this little virus that normally would have caused some nasal discharge, but it never did. It seems like the mucous just kind of sat in her sinuses and because it never drained out, it just became a breeding ground for bacteria and now she has this sinus infection. Its odd to me though that I never heard any nasal congestion in her the whole time. No mucous to suction out. Its just all going back into her throat I suppose. Anyway, she is on the antibiotics and hopefully this will do the trick very soon. I can't stand to hear her cough. It just makes me cringe. And I can't help but think...this is only the beginning.


 She is still a happy girl though despite being sick. This is a video of her today watching the Fresh Beat Band (her absolute favorite) while doing her chest PT.

Vest update

Kelsie is doing so well with her vest! She actually gets excited about it! She is so active during the day, I think she enjoys the rest break where she can sit and watch TV. And I think it must feel relaxing as well. When I sit with her or hold her during the therapy, it almost makes me fall asleep! It is soothing in an odd kind of way.

It has also been a burden relief for us as well! Its nice being able to go to bed at night and not have to get her up to do PT for 30 minutes. Its also a relief to not have to worry about interrupting her nap time or trying to get her to sit still for us to beat on her back when she is awake. She has been starting to cough more so we did it 3 times today, instead of 2.

My little helper

Kelsie absolutely LOVES to help me cook. All I have to say is "do you want to help me cook, or make something in the kitchen?" and she runs straight to her chair, pulls it up to her spot, climbs up and just stands there tapping her fingers on the counter waiting to get started. Today we made chocolate banana bread and she was such a big help, beginning to end. Then later, I said, "Kelsie, do you want to help me cut up the potatoes?" and she said "Cook!", then ran to get her chair haha. I always try to find something she can do to help me. Today, I let her dry off the potatoes after I washed them, then after I cut them up (away from her reach of course), I let her put the pieces in the pot. We made a salad earlier in the week and I let her put the lettuce and the tomatoes and carrots in the bowl after I washed them. She then decided it was fun to squeeze all the grape tomatoes. :) But they all still made it into the salad. :) I love that she enjoys helping me so much. It definitely makes preparing dinner a little easier now that it can be fun for her too. 

I also let her help me wash dishes sometimes (but she likes to put the dishes BACK in the water after they have already been washed and rinsed). She does do a good job helping me unload the dishwasher! She likes to take the silverware out of the basket and put in the drawer (because she can reach inside the drawer now!)

"Cheese" she said - with food in her mouth! (And we can thank Nana for the cute shirt!)

I know this goes in here somehow...?

I told her it was time for the banana, so she picked it up and knew what to do with it.

Peeling the banana without mommy's help

Good job mixing

Sweet face

This is so much fun mom!

Mmmmm....

this is YUMMY! (good thing she still had enzymes in her system)

I think I can get more by just dipping this spoon in the batter!

And then she found the beaters! Always my favorite part too!

Making Pumpkin Chocolate Chip Cookies last week

Waiting patiently

8-24-12

One of the first things she helped me make! Lasagna, 8-23-12

Fever

Kelsie woke up this morning with a low grade temp, but it kept going up all day despite getting Tylenol at 1:00p. By 5, it was 103.5. I gave her Advil then and it got down to 100.3 at 10pm but I just woke up and checked her and it was up to 103 again. She doesn't really have any symptoms yet though. She coughed just a few times on Friday night as she was going to bed and has had a couple small coughs during PT over the past week but nothing that seemed alarming at all. Literally 1 cough all day. Yesterday I think I may have heard her cough 2, maybe 3 times. But no runny nose or anything. I checked her lungs, her ears, her throat and everything looks/sounds good. As a nurse practitioner, I know this is probably viral and will just past, but as a mom to a child with CF, I can't help but worry and think about pneumonia. We will just have to see how this plays out. But I'm just praying this doesn't turn into anything worse!

Oh and she is acting fine! I just woke her up to give her some Advil and she was happy and as talkative as could be. She heard Nathan talking about the state game (he had been at the game and still wasn't home yet) and heard him say touchdown...and she immediately threw both arms up in the air to signal a touchdown. Lol. Funny seeing your little girl do that at midnight with a 103 temp. But a good sign that she doesn't feel too bad too. She was pointing to my phone saying Elmo, apparently wanting to play the Elmo app. So I let her do that for a minute then laid her back down in her crib and she is almost back asleep.

Mrs. Runnfeldt

We had a great time eating lunch with Mrs. Runnfeldt today! We took lunch to my sister at her school. As her big sister, it was neat to see her in that role. All grown up! And she just turned 23 this weekend!

Chest PT vest has arrived

We got Kelsie's first PT vest this weekend and its actually going pretty well. She has tolerated the full 30 minutes every time and even smiles when we pull out, excited that she gets to do it again. I think she sees it as something new and exciting right now but hopefully she will continue to like it when the newness wears off. We just turn on the TV and she seems fine sitting there. I have given her my phone to play with to distract her as well, but the vibration shakes her so much that I think that is even difficult so sometimes she just gives it back. It seems to bother her ears and nose because she rubs them frequently (when Nathan tried it at the clinic, he said it really makes your nose and ears itch) and it also makes her very tired - we always see her rubbing her eyes and yawning during her treatments. I'm so glad that she doesn't mind it though, because if she did, it would be 10x harder on me.  I already don't like it. I'm trying to have a good attitude about it, but its hard. Its hard to see her in it. It looks so uncomfortable and it just reminds me of her disease every time we pull it out. Its a wonderful invention, though, and I am thankful that she has the opportunity to start it at such an early age. I know it will play a huge role in keeping her lungs healthy and I hope that starting it this early will be very beneficial for her in the long run. We have to do it for 30 minutes twice a day, every day, forever, so I better get used to it, right? The machine comes in a bag on wheels, making it easier for transport. But it is still super heavy and is going to be challenging to carry on trips. On the bright side, this now takes the place of manual chest PT and should be more effective in providing good airway clearance especially since she has begun to resist manual PT so much. It still makes me sad to have to make my baby sit and do this for an hour everyday. But its necessary and its really not that bad. Just have to figure out a new way to incorporate it into our routine.

18 month update - Belated!!

Kelsie was 19 months old yesterday but I have been so slack about updating the blog that never posted about her 18 month milestones. And boy have there been many!

- Saying a lot of words these days. I don't think I could even count how many. 
- Will repeat almost anything you say.
- Says mama and dada all day. Its clear that she thinks about us a lot. She also says other family members' names alot: pah-paw in the most dramatic voice...Valerie and Drew, ba-pa, geh-ma, Nana, Will, Wa-Wa (mamaw Roberts), ...
- Says Mommy! And I love it. She still says mama the most but will now says Mommy if you ask her to. 
- Points out things and calls them by their name. For example, she will point to a bird (either in the sky or in a book) and say "bird." When its an animal, she will just make the sound that it makes (animal sounds that she makes- dog, cat, pig, elephant, bird, cow, octopus (which is more of a hand motion), snake, bee, butterfly, owl, monkey, sheep, lion, dinosaur).
- Can point out many body parts - eyes (she even points to my eyes sometimes and says "eyes"), nose, hair, mouth, teeth, tongue, ears, hair, belly button, feet/toes)
- When she something wet (such as rain), she will say "wet". When I put her in her carseat on a hot day, she will correctly say "hot" (without me telling her that I also think it is hot). And when she sees me cooking, she will point to the stove and say "hot."  
- She loves to read books. Her current favorite is a book about going to the potty. Which reminds me...
- She pooped in the potty on 2 separate occasions while at the beach the week she turned 18 months.
- She peed in the potty the week we got home. We sat her on the potty before bath, she wasn't interested in trying to pee at that time, so we gave her bath, then when she got out she kept pointing to the potty and grunting so I asked if she needed to pee, and sure enough, she went! We haven't really worked on much since. I occasionally ask her and will put her on the potty but she wants down so fast so I don't even push it.
Still early for that anyway!
- She learns and remembers things so quick. It just amazes me the things she picks up on. She will see me do something one time, and then I'll notice her doing it herself a short time later.
- This week, I noticed her singing along to the radio! It was Learning to be the Light, a christian song by NewWorldSon. I noticed her repeating the part "wha-o, wha-o, wha-o o". I started singing it to and she liked that. She sang that part every time it the chorus came on.
- She likes to dance, its more of a bounce, but so cute. And she likes it even more when I dance around for her. She just laughs and laughs, I must be a pretty funny dancer! :) (Anything to hear that laughter, right!?)
- She is affectionate but likes her space. She gives the best hugs and kisses. I just can't get enough of them! But at night time when she is sleeping, she doesn't like you to snuggle with her. We have had to get her out of bed to do chest PT every night so we bring her to our bed before we go to sleep and always try to sneak a few cuddles and kisses, but she usually just rolls around and pushes us away.  Makes me miss the days when her favorite place to sleep was on my chest!
- She loves to go outside, I think she would spend the whole day out there if we let her!
- She can walk up the stairs one foot at a time, with me holding her hand, and she will even do alternating steps every now and then. She can also walk down the stairs one at a time with someone holding her hand. And then she gets so proud of herself that she wants to keep doing it.
- She plays with her baby as though she is the mommy. She hugs and kisses them, brushes their hair, lays them down to go night night etc. When I see her showing affection it reminds me how we are teaching her all about how to interact with the world around her. Pretty large responsibility.

Vest, coming soon!

Kelsies chest PT vest should be here later in the week and I am partly excited but also partly sad. She will have to use this machine every day for the rest of her life. It will become a permanent fixture in our home. And I will be honest that I'm not looking forward to it. I'm also a little apprehensive about how she is going to tolerate sitting in one place for 20 minutes twice a day. And how we are going to incorporate it into our routine. But I know I will figure out.

So these are the last few days of doing manual chest PT before the vest gets here. While it will free up our time a bit, I will still miss these mandatory nighttime snuggles with my baby before I go to bed every night.

Lovely fall day!

Thursday's are my favorite. I get to be with my sweet Kelsie all day and we always have lots of fun. Today I took her to her first tumble gym class and she had a lot of fun. She got to play on the balance beam, the bars, the rings, the trampoline, and learn how to do somersaults on the cushy mats. It was a great new experience!

Back home, we spent the rest of the morning playing outside! It was SUCH a beautiful day! She pushed her baby around in the stroller outside, we took a walk, wrote notes to daddy on the driveway, smelled the flowers, blew bubbles, rode in the cozy coupe, threw the ball, and watched an airplane go by. Then this evening, she helped me cook dinner! Their never too young to learn! She stood right next to me in a chair I pulled up for her and separated the zucchini (on her own will) and then dipped them in the flour for as I asked. She even figured out it was fun to stack the zucchini in a measuring cup! (I love watching her little mind figure out little things like that!) We then had a little fun playing with the flour! :p Yeah it makes a mess to let a toddler help in the kitchen but if you don't make a mess, you would miss out on the memories. And to me, any mess is worth the memory. You can always clean up, but you can never get those moments back.

I'm really doing it, I'm hanging here all by myself!

She was so proud of herself. :)

What a BIG helper!

flour on our faces!

Moments

Lying here watching my baby sleep wishing I could hold onto these precious moments a little tighter and not let them pass by so quickly. As each day goes by, she changes a little more. With each new memory made there is another which has passed. A head full of memories, a heart full of love. I just can't get over my love for this little girl!! I relish each and every day spent with her and regret the moments I let slip away with the rush and business of this life. I thank God for giving her to me and pray that He never allows her to be taken away!!

Big girl bed

I think someone is ready for a big girl bed! And if you ask her she will agree!! We ordered one last week so it is on its way! :) she's growing up so fast!

Pretty. Fall. Day.

PT vest

We had Kelsies CF follow up last Friday and she is still doing super. Her weight was up a pound from her 18 month visit which doesn't make any sense but I'll take it. It was 25 lbs 13 oz this time putting her at 50th percentile weight for length. Height 33 3/4in! 95th percentile! Tall girl!

Respiratory wise - still no issues. She got fitted for her first PT vest. This will take the place of manual PT which has become very difficult to do. Even though the vest will add something new to get adjusted to, we hope it will help ensure Kelsie is getting good airway clearance. Manual PT is more difficult now because she is becoming such a wiggle worm, even when she is sleeping. So we think this will be better. It's also going to help because we will no longer have to figure out how to get manual PT in or spend 40-60 minutes of day doing it. But it will also be a bit of a hassle I'm sure as they are bulky machines and will be something we will have to take with us anytime we travel. It's still hard to tell how she will tolerate it. She tried out three different ones. They definitely cause her to vibrate and just looks uncomfortable and unnatural. At first I laughed as she started juggling with the vest, then without realizing it, I was crying. I felt sad the whole rest of the day. She will have to use this machine every single day for the rest of her life. I know she will come to hate it. Even if she is used to it. What kid us going to want to fit that into their day!? We will make it work though.