Breathing treatments begin!

We just started Kelsie's first breathing treatment last night, hypertonic saline.  Her doctor has talked about doing it for a while as a preventative measure but since she never had any respiratory symptoms, there was never any real indication to start it. Then she got that illness with the cough that never wanted to go away, so she felt it was a good time to start.

The first one was kind of rough. For both of us. She didn't like us putting that mask up to her face and I didn't like the fact that I had to. I felt full of tears inside thinking "this is permanent." I give breathing treatments to my patients and their parents have to give them at home too, but for them, its temporary or just when needed. For Kelsie, we have to do this EVERY DAY. SHE is going to have to do this every day! Its both a blessing and a curse. I'm so thankful this exists and that it will hopefully prevent her from getting as many lung infections and untimately prolong her life. But it still makes me sad that I have to make her do this every day. I will not waiver though. It too, like everything else will become part of our daily routine. We will figure out how to add this piece into our lives, embrace it, and thank God we have it available to keep our little girl healthy!

Kelsie got a baby doll after her first treatment. We told her she would get a prize if she did it so I had to follow through. I had a baby doll I was going to give her for Christmas but decided to return...needless to say, I decided to go ahead and give it to her as her reward for doing the breathing treatment. I guess we will need to scale down the prize value if this is going to be a daily routine!! :)

Weight check

I had to go to the hospital yesterday to pick up Kelsie's nebulizer for her new breathing treatments so I just took her with me and put her on the scale to see if she had gained any weight. And to my surprise, she has gained almost a full pound in just 1 week! (And she has been pooping like crazy so she had to have lost a lot of that extra weight during the past week as well.) She weighed 27lbs 6oz!

It was really cold and windy too so I had her all bundled up and had to snap a few pictures of her in her wool coat! (Which I got at a consignment sale for $3!)

Learning new words

Kelsie makes me laugh everyday with the funny things she tries to say. Her language really started coming out over the summer and she has been gaining new words every day. She will also repeat just about anything.

Lately we hear alot of:
Mine!
stop ("dop", "bahp" or other variations)
arn-doof (orange juice) - We hear arn-doof or just "doof" every night after she goes to bed and every morning when she is ready to get up! And she yells it.
Yay! (when she is excited or proud of something)
Woowww!
NO-NO!
toys
walk (she will come up and grab your hand and say "walk", this means she wants you to come play with her)
baby (or just "bay")
Elmo
"Beht-Beat" (Fresh Beat) - her favorite TV show. This is our go to for distractions during chest PT or mealtime or to calm her down if we are out and she is fussy.
"Moan" for phone
Mommy and Daddy of course!

Other words: Mommy, Daddy,  "Keh-sie" (Kelsie), apa (grandpa), mehma (grandma), "Valulwee", "Dew", Nana, papaw, wahwah (Mamaw Roberts), Will, Ava, Keh-kie (Kelly), eat, doggie,  apple, pear, hairbow, ball, book, baby, Alright (or just right), now, tree, star, eyes, nose, arm, hand, feet, toes, beh-ba(belly button), "bupp" (her bottom), hair, ears, eyebrow, throat, teeth, neck, earrings, what?, fit (when she is playing with blocks or shapes), "Kah-ket" (chocolate), bread, bird, "fovers" (covers), mess, wash, bath, "fues" (shoes), boots, shirt, pants, socks, chair, light, poop, peepee, hat, cold, hot, seat, car, off, on, stairs, march, "te-te" (TV), Tarheels, Ramses, ah-pack (wolfpack), bed, night-night, pizza, pickle, cheese, milk, fall, fell, dizzy, help, toys, Ah-Clause (Santa Clause), Reindeer, stocking, tirsty (thirsty), oh-k!, Jesus, angel, shy, house, flowers, more, brush (toothbrush), oopsie, wiggle, blocks, wet, food, pictures, watch, cook, duwl-dee (dirty), moon, macaroni, Max and Ruby (mat and ru-ree), spoon, fork, too, heavy, bye, c'mon, ummmm (when she is thinking about something), num-num, (yum-yum), nummy (yummy), vest, broke, laugh, trash...and I'm sure there are more.

She is starting to try to put together words but doesnt have many 2 word phrases yet: help me and all gone are the only 2 I can think of off the top of my head.

She tries to count but its always the same: "two...nine..." :) (no idea why she picked that up)

When she falls or hits something and gets hurt, she will go back to it and yell "NO NO" like she is getting on to it. I started that...I did the same thing when trying to console her one time after she fell.

Christmas card

Seasonal Chic Christmas Card

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Follow-up

We went back today for Kelsie's follow up appointment. She has been doing well and her cough has essentially gone away. The cultures did not grow any bacteria or viruses so NO INFECTION in the lungs. Very happy about that! So we are now able to stop the antibiotic.

Her weight was up slightly from last week - like 2 oz - but it is still down from where she was 2 months ago so we are going to have to work hard to get that back up. She weighed 26 lbs 9oz today and was 26lbs 13oz on Oct 13th. She's still at or slightly above the 50th% weight for height and they like to keep their CF kids from falling below the 50th%. Kelsie is still eating really poorly but we think that might be coming from constipation so we are going to ramp up the Miralax a little more and make sure we are getting everything cleaned out. We also had long discussions with the nutritionists about how to manage her meals/snacks, new ideas for getting her to eat, and implementing supplements such as Pediasure. She has hit a picky phase of eating which is typical for all toddlers, but with her, we have to more aggressive about it. The Pediasure will help fill in the gaps and give her 100% of what she needs in a meal. So if she goes a whole meal and refues to eat, we can rest a little easier knowing that she is getting the fat and protein she needs from the Pediasure. We are also going to keep trying things like distraction to get her to eat, adding more fat to her diet by adding butter and/or heavy cream where we can, and giving less juice (low calorie beverages) and more milk based drinks (even if that means giving an extra enzyme when her meal or snack dose has ran out).

We are also starting a new therapy called hypertonic saline. This is like really salty water that she will breathe in through a mask for 15 minutes twice a day during PT. they did a "challenge" to make sure she could tolerate it. She did ok in the beginning but only made it a couple minutes before she started pulling it off and fighting it. It causes the airways to spasm causing her to cough. So she has to take albuterol first to keep her airways open so her breathing won't be compromised by the spasms. The salty solution helps balance out the sodium chloride and water transfer which is the foundational problem of CF. This has been shown to be a beneficial preventative measure in people with CF by helping to clear secretions from the lungs. I don't think it took Kelsie long to realize that she doesn't like this new therapy. It causes the nose and throat to burn and makes you cough. Doesn't sound too comfortable to me! They say it will take some time for her to get used to it and we will have to slowly work up to our goal of 15 minutes twice a day.

HOME!

From yesterday:

What a whirlwind of a day! We went in this morning with so many questions and uncertainties. But are thankfully back home now.

Her PFTs (pulmonary function test) looked great, as good or better than the last! Which was great news. There did not appear to be any obstruction in her air movement. They also give Albuterol during that procedure to see if there is any improvement by opening up airways. There wasn't which is a good thing suggesting that things are working like they should at baseline. There was one number that was slightly worse, suggesting some air trapping, but was still within normal limits.

The bronchoscopy showed no secretions in her left lung but did find some white secretions in the right lung - upper lobe and lower lobe. There was not a significant amount and the secretions were not yellow or green, both good signs. They also found her airways to be very irritated and inflamed. There a few things that could be causing this. It could be reflux, could be viral, or could be something like asthma. They also looked in her nose and saw that her adenoids were really large.

The doctor said based on what they saw, she did not see any strong indication to proceed with the IV antibiotics today. But still gave us the option. She said the most aggressive approach would be to go ahead and do the PICC line, start the IV antibiotics and make sure we were getting a head start on it if it was a bacterial infection causing the secretions in her lungs - all with a hope to be done with it by Christmas. But the other option was to wait and see what the cultures show, knowing that if they do grow bacteria, we would have to go back in for the IV antibiotics - potentially putting us in the hospital over Christmas. We took the chance and decided not to put in the PICC line and admit her, thinking this is unlikely to be something that needs IV antibiotics. And if by chance it does grow something that requires strong IV antibiotics, then we will deal with whatever we have to do when the time comes, even if it is over Christmas. I just didn't want to put her through everything that goes along with a hospital admission without knowing it was absolutely necessary.

We are also adding some new treatments to help with the information they found during the bronch. So this is the plan from here:

Restart Zantac (medication for reflux) - we started this medication when Kelsie was only a month old but have tried stopping it several times. She also takes another medication for reflux but the Zantac was added as an adjunct. In the past, each time we have stopped the medication, I have noticed her to start coughing. We last stopped it in September, she then got sick with the cough the first of October. So we never had a chance to see how she would respond to being off the Zantac. The doctor also said they tend to see secretions in the right lung when a person has chronic reflux. So I really feel like this is the issue. Reflux alsos causes chronic inflammation in the airways, so thats where that could be coming from as well.

Restart Flonase (nasal steroid spray) and increase to twice a day - this helps with the large adenoids, inflammation in the nose and nasal congestion.

Start hypertonic saline  - we go back next week to do this "challenge". This is a breathing treatment and it helps her clear out secretions in her lungs. Some times kids do not tolerate well so they like to do a trial in the hospital setting in case she has problems with it. If she does fine, then we will start doing those treatments at home on a daily basis indefinitely.

Continue Bactrim - She still has a little over a week left on this antibiotic so we are going to continue doing that to clear up any infection that is left.

Start nutritional supplements - She had lost weight since her last appointment (about 1/2lb), which was concerning to all of us. Kids with CF are at an increased risk of nutritional deficiencies since they do not absorb fat/protein on their own. She has not been eating much over the past couple of months and has been really picky. Basically, she is eating like a 2 year old, but we can't let her do that. I refuse to get into food battles making her eat because I know that only makes them want to eat less. When you do that, mealtime becomes more of a battleground and less of an enjoyable experience. It is really important that she eats, and that she eats high fat/high protein meals and snacks. But at this stage, its hard to find many things that she will eat alot of. She loves cheese and would eat that at every meal if you let her. I don't like doing that because she still needs a variety of other foods, plus cheese is very constipating and that is another problem for her. Yes, we can treat it with Miralax, but she still has to eat something besides cheese! So for now, we are starting nutritional supplements like Pediasure and Boost. I am also going to look into some new ways to increase the fat content in her food, like using whole milk Greek yogurt for example. Its definitely time consuming not only to find some recipes, shop for the food, make it, and then try one thing after the next during mealtime before you find something she will eat. I think every mom with a toddler has frustrations trying to get their kid to eat, but mine are taken to a whole new level because her nutritional needs are so much higher than the average kid. So I HAVE to figure out how to get her to eat again!

Reassess next week -  We go back next Thursday and the doctor will go over her culture results, check up on the progress of her cough and we will go from there. Hopefully, things will be at least somewhat improved. We do not expect the cultures to grow anything significant but if they do, she will have to get the PICC line put in and be admitted to the hospital after all. But we will continue to pray that doesn't happen!

After coming home - Saturday 12/8
Kelsie is doing really well today. She was really tired after getting home yesterday and unsteady on her feet but otherwise seemed to be back to her usual self. She wanted to lie down a lot, and would snuggle with me on the couch which was unusual for her but expected given what she went through yesterday. She drank a lot of fluids after coming and ate a fairly good dinner last night. She had a fever but they told us to expect that. They wash out the airways with sterile salt water but some of it gets left behind so the body recognizes that as foreign and raises the temperature to try to take care of it. That extra fluid left behind in her lungs also causes a lot of coughing so we've definitely been hearing quite a bit of that. And she is a little extra tired today. Still happy, just sleeping a little more but that will be good for her.

This is in the PFT lab right before falling asleep for the test. They give her oral sedation medicine for this procedure. Its a lot of volume and yucky but I got it all in her. She then sat in my arms watching Fresh Beat Band on the iPad until she fell asleep. 

 

 This was after the bronchoscopy. It took her a long time to wake up from the anesthesia. She first came out of it coughing like crazy, gagging, and very agitated. I would kiss her and rock her and she would calm down, go back to sleep, and then that mucous would come up and gag her and she would get agitated again. She finally went back to a deep sleep and we had to get out a cold wet washcloth to wake her up. I was happy to have it all over with and enjoying the cuddle time! <3

 

Here we are heading home! Getting some juice and puffs after being NPO all day!



 

Finally back home! Some strawberry milk and peanut butter crackers. Mmmm.

Good to be home! 

 

 

Taking it easy with mommy! So glad we got to spend our evening like that and not in a hospital room! Thank you God!

What is necessary

When Kelsie was diagnosed with Cystic Fibrosis, I knew there would come a day where she would be sick. I knew there would likely be frequent respiratory infections and hospitalizations. But of course, I didn't know when to expect them. At first, we expected the worse. But little by little, those anxieties were put aside as we just enjoyed each day with our perfectly normal and healthy little girl. She has been exceptionally healthy and has only had 3 colds her whole life - which in my line of work in pediatric primary care, I know how rare that is. So I think we even started to think at some point, "maybe she is just going to be one of those CF kids who have little respiratory involvement." She literally NEVER coughed until this infection started 8 weeks ago. But now, here we are, her first cough and she is getting a bronch and facing possible admission. And she isn't even 2 yet. I still can't believe it. I know some kids with CF don't experience their first admission until they are teenagers. Others are infants. I always thought, and truly believed, that we would at least make it until school age before Kelsie got admitted. And we still don't know what is going to happen tomorrow, so I'm still going to hope and pray that happens!

I just hate putting my child through these scary procedures. She is too young to understand why we have to do this. I don't want her to hurt and I don't want her to feel scared. I feel so sad that she has to go through this and that I can't stop it. I have done everything I can to avoid this and I still don't know that I have made the right decision. I didn't want to overreact and make her go through all of this without knowing it was absolutely necessary. But I didn't want to blow it off either and risk a subtle infection causing damage to her lungs. I felt completely torn. But then when she woke up this morning coughing much worse than she has been, I knew it was time. I realized it was now necessary and I couldn't prolong it any longer. The realization hit me hard. That no matter how well I take care of her and do exactly like I am supposed to, and no matter how closely I monitor her every symptom, I just cannot prevent her getting sick. Its simply the nature of the disease. I have to accept it. I know its not that bad right now and in the grand scheme of things, things could be a lot worse. But its the first time we are having to go through this and its our first real confrontation with her disease. So its hard. Hard to accept and hard to deal with. But I will muster up the strength to make it through it and will do all I can to make sure it is the best experience for her it can possibly be. I will be right there with her through it all and will make it as fun as possible. We will make it through it regardless of what happens. God will give me the strength to be my best for her and He will protect her. When I can't be there during the procedure, He will be the One holding her hand. And I have to trust that He has a purpose in all of this.

First bronchoscopy

CF seems to be rearing its ugly head. Kelsie has now had a cough for 8 weeks now. It is also the first cough she has ever had, but she just can't seem to get over it. It started out with a fever and a couple of coughs here and there. That went on for about a week and then her doctor decided to start her on and antibiotic (Augmentin) for 20 days. She continued to cough the entire time and the cough even worsened during that time. We saw the doctor again about halfway through that course of antibiotics and she thought she looked great and just suspected that she was hit with 2 respiratory viruses back to back. She advised we continue with the antibiotic regimen and also started a nasal spray to help with any nasal congestion/allergic etiology. We did that for a couple of weeks, but the cough persisted. The amount has varied but there definitely hasn't been a day without cough since this all started.

So about a week and a half ago, I talked to her doctor about her peristant cough and she wanted to start a different antibiotic and talked about the possibility of doing a bronchoscopy and admitting her if the cough did not improve while taking the antibiotic. The cough has since been waxing and waning. Some days the cough is very minimal (maybe 1-2x), but other days it has been much more. The cough seemed to be better overall, especially in the quality (not as wet and junky). It was better over the weekend and I thought it was going away, but 2 days ago she coughed 12 times. Then only 7x yesterday. We talked to her doctor last night and she said she was still on the fence about whether or not to proceed with the bronch. After much discussion, we decided to hold off on the bronch, and do hyptertonic saline (an inhaled therapy) instead. This is like really salty water that she would breathe in through a breathing machine and it would help her cough out secretions. Her doctor and I both thought this was a good middle ground and a good option to avoid the more invasive procedures. We also thought it would give this cough more time to settle out if it were viral or the result of sinus drainage. However, this morning she woke up with a lot of cough again. She has probably coughed 25x today and thats the most I've heard in several weeks. :/ It also sounds junky again too and has almost gagged her a few times. I broke down a couple of times realizing that this bronchoscopy procedure is now inevitable and necessary to make sure infection is not growing in her lungs.

Prior to the bronch, she will have PFTs (pulmonary function test) which measures how well her lungs are working. She has had two of these before and she will get these routinely for the rest of her life. Since she is still too young to breathe on demand and show how hard she can breathe, they have to sedate her for this test, put her in a special box, force air in, and measure how well her lungs are doing. This isn't a bad test, its just the sedation that is the hardest part. So she will have this in the morning around 9am, then while she is still sedated, they will move her to the bronch lab where they will put her into an even deeper sleep, but she will still be breathing on her own.  During the bronchoscopy, they will go down and look into her airways for secretions. We know that kids with CF have more secretions and have a harder time getting rid of them. So this poses this risk of bacteria growing, causing pneumonia and inflammation of the airways.  So in kids with CF, it is sometimes necessary for them to go in and look closely at all the small spaces in the lower airways to make sure there isn't any infection.

If they do find secretions in her lower airways tomorrow, they will take samples and culture it to see exactly what type of bacteria it is growing. They will then go ahead and put in a PICC line(peripherally inserted central catheter), which is long catheter that is inserted in a vein in her arm and ends in a large vein near her heart. This will be there to allow her to get long term IV antibiotics if needed without having to worry about getting multiple IVs and doing damage to her veins. It ensures good IV access so that she can get the stronger IV antibiotics if the cultures show they are needed.

So at this point things are still up in the air. She will definitely get the PFTs and bronch in the morning. If both look good, they will send her home. If they find secretions they will take cultures, put in the PICC, then admit her, and start IV antibiotics until the cultures come back. And the course that follows will just depend on what they find. So please keep her in your prayers and lets all hope that her lungs will look clear and that this cough is just coming from some post-nasal drainage from a sinus infection or virus. Which is also a very real possibility since people with CF are also at a greater risk of sinus infections. They will also look at her sinuses while doing the bronch as well so we will know if thats the source of the inefction as well.

21 months

Kelsie is 21 months old. (once she turns 2, I'll stop counting in months!)

New words she has added to her vocabularly the past few weeks are "MINE" and "toys". Oh yes, we are definitely approaching the terrible 2s. Not only does mine mean she is claiming ownership, but it also appears to mean leave me alone, as this is MY SPACE and I want you out of it..don't try to lean in and kiss me when I am feeling ornery..."MINE". Yes, we hear this many times a day now!
Toys is a really cute sound though. After having a fit in the middle of Kohl's one day, I had a talk with her about not ever doing that again. I then told her that we were about to go into a toystore but as soon as I said it was time to go, she better not cry or have a fit or we would not go back. I asked it she wanted to be a good girl and go look at the toys and thats when she said "toys" for the first time. And then just couldn't stop saying it. And just in time for Christmas.

She is still running around, getting better at climbing steps, still holds our hand but climbs with alternating steps. She is learning to jump - or at least tries to. She is throwing a ball well overhanded. And likes to sling her toys out of the toy box ... like hard. She reaches in and just slings them behind her. Heavy toys too. She even likes to pick up her play kitchen and slide it across the floor. She often picks up heavy toys and carries them into the kitchen. This girl has some muscle!

She is adding to her vocabulary every day. She tries to say any and everything. Most of what she says doesn't sound much like the actual word but I can understand it. She tries to put words together too like "Help me".

She is crazy about Elmo and her baby doll. And quite affectionate and nurturing to all of her stuffed animals and baby dolls.

Still hooked on the paci at night...not sure how we will ever break her from those. But it will happen one day. I haven't even tried yet. But I will conquer up the nerve eventually.

Big highlight of this month is the new big girl bed! We got it a few weeks ago and she has done so well from the very beginning. I was worried about the transition at first but it wasn't a big deal at all. She cried a little more the first night about falling asleep but then slept pretty well. She did fall off the bed a couple of times and I had to go in and put her back in the bed. We have her old crib mattress lying beside the bed and the bed sits really close to the floor anyway, so its only a short distance to roll of as it is. But its enough to startle her. She doesn't do that as often anymore but when she does she just gets back up and climbs in bed on her own. The first week of getting the bed, she would walk up to her room and just laugh, so excited over her new bed! She still loves to go in there and sit and read books. And she now wakes up so much happier than she did when sleeping in the crib. She used to cry when she woke up; now she wakes up saying "ma ma" or "mommy" in the sweetest little voice ever! This morning was the first time she actually woke up and walked to my room without calling for me. It was quite cute to see her walking in here. I'm surpised it took her 3 weeks to do this but am sure this will not be an common occurrence anymore.

She has such a great laugh and I can't get enough of it!

Antibiotics...again

After 3 weeks on Augmentin for the cough that was thought to be from a sinus infection but never went away, we are now on another round of antibiotics. And this time it is much stronger. I kept thinking since the cough was still lingering around, it was probably just all part of a viral infection as her doctor had suggested. But it has now been 7 weeks since it first started and 3 weeks since she has been off the antibiotics. I emailed her doctor to let her know, and she suggested starting more antibiotics first thing. She also gave me a more invasive option which included taking her in for PFTs under sedation, starting a PICC line at that time, doing a bronchoscopy to view her lower airways and planning for possible admission to do IV antibiotics. I have to say, I was pretty surprised at that 2nd option and opted to just try another round of oral antibiotics first. She agreed with that plan but said if the cough isn't improved in a week, she would like to proceed with option 2 next week. So I am just praying this goes away before then, because imagining her being hospitalized for the first time at this age is just unbearable for me right now.

Besides that little lingering cough, she really hasn't acted sick. She hasn't been eating well at all the past 2 weeks but part of me just thought that was normal toddler behavior (although I was still concerned it could be something else). Her doctor was concerned about that as well because kids with CF often have a decrease in appetite and weight loss when they have pneumonia. But I'm hoping thats not what it is. And if it is, I hope this antibiotic kicks in quickly. So far, her cough is much better today. She did cough for about an hour last night during sleep which she hasn't done in a long time but then coughed only once today. She ate better today too. The antibiotic is Bactrim and she is getting the highest dose. She is taking 15ml and boy is it a struggle to get it in her. In the past, she had learned to love taking her medicine because I would sing and dance around the kitchen, but even that isn't working this time. I hate forcing meds but thats what I ended up having to do today and she hated. And so did I. We both cried. Hopefully some of my other tricks will work in the next day or so. I'm really hoping and praying this doesn't turn into anything more and that we don't end up at the hospital next week.

Love of my life

She is the light in my eye
The song on my lips,
The music to my ears,
The joy in my heart,
Love of my life.

Please God, never take her away from me.

Happy Monday!

Had a great day with my sweetie today!

This is what followed craft time today!

Her laughter is contagious and is the greatest sound I have ever heard.

She is doing the big belly laughs now and just gets so tickled. I LOVE IT!

My sweet, beautiful girl!

I love this pucker too! We see it the most when she says "Juice"

 

Her new word today is "toys". And just in time for Christmas.

 

We also have a little battle over the Tarheels and Wolfpack

around here on a pretty regular basis. You can tell she is

already a little confused.

Days of Thankfulness

I will updating this post daily as we prepare for this season of Thanksgiving. Every day we should give thanks to God for all his blessings, but this is a particularly good time to remind ourselves of all we have to be thankful for.

Day 1: I'm thankful for my Lord and Savior
Day 2: thankful for the most precious gift of my life, my sweet and beautiful baby girl
Day 3: thankful for a husband who loves me unconditionally and works so hard to provide for our family
Day 4: thankful for parents who raised me in a Christian home and taught me to live for the Lord.
Day 5: thankful God saved my life and my legs from my near-fatal car accident 6 1/2 years ago. And thankful for what I learned about myself and about life as I pushed through the painful experiences that followed.
Day 6: Thankful for all the kisses, hugs, laughs, cuddles, storytimes, piggyback rides, dances, tickles, playtimes, and countless other precious moments with my little girl and for the beautiful bond we share. I ♥ you my sweet child.
Day 7: Thankful for my education, my career, my job, and the ability to be a part time professional and a part time stay-at-home-mom. I love being both.
Day 8: Thankful for technology so I can still talk, text, and do face time with Nathan even though he's out of the country.
Day 9: Thankful that my mother-in-law is able and willing to keep Kelsie 2 days a week while I work so that we do not have to risk her health by putting her in daycare. And for my mom and aunt for making sacrifices and adjusting their schedules to help fill in the gaps anytime I need them. I am truly so blessed to have such loving and supportive women in my life. Because of them, I can relax while I work knowing that Kelsie (and her health needs) are being well taken care of.
Day 10: Thankful that Nathan made it home safely from Brazil!
Day 11: Thankful for this wonderful day of quality time with the 2 great loves of my life!
Day 12: Thankful God blessed me with a sister, someone I have shared my life with, the ups, the downs, the laughs, the tears, the screams, the cheers, the quiet times, and the hours of conversation. There is no one else I would choose as my sister. We are so alike yet so different but we are perfectly sisters. I love you Valerie Campbell Runnfeldt and I'm so glad you are the sister and friend God chose for me. ♥
Day 13: Thankful for my child's laughter and my ability to hear it. Every day is a whole lot sweeter because of that beautiful sound!

Day 14: Thankful for my scenic drive to work. Fall is such a beautiful time of the year!

Day 15: Thankful for my all my college friends and the times we shared together at Carolina. I miss you all SO much!!

Day 16. Thankful for this job that allows me to work from home on Friday nights.

Day 17. Thankful for a warm bed to crawl into tonight.

Day 18: Thankful for bedtime stories and goodnight kisses! ♥

 

Day 19. Thankful that Nathan is such a great daddy to Kelsie, adores her, and takes such good care of her.

Day 20. Thankful for my family's health.

Day 21. Thankful for the kiddos that make my job more than just a job.

Day 22. I am thankful for the Holiday season. I love everything about it! The time with family, the laughter, the joy and anticipation, the reminder of thanksgiving, the food, the decorations, the tree, the ornaments, the gift giving, the lights, the music, the cheerfulness, the memories made, and the story of the miracle birth of my Savior.

Day 23. Thankful we live just a few miles away from the one of the best CF centers in the country.

Day 24. Thankful that Kelsie's diagnosis was made at just 2 weeks of age so that her lungs didn't suffer any damage before we found out

Day 25. Thankful for the meds she takes everyday that allow her to grow and develop like any other kid her age.

Day 26. Thankful for her amazing doctor that is always there for me to talk to me anytime I need her. 

    

 

 

 

 

 

 





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