Good weekend

My sister came up to visit yesterday and we had a great time getting to spend some time with her. Kelsie really loves her aunt Bubba! Anytime I say her name, she gets excited! She loves it when we call her on facetime (over the iPhone) but of course, its even better when we get to spend time with her in person!

We ate at Cracker Barrel. I think Kelsie liked it! ;)

Today after church, we went out to lunch. Like most Sundays, she didn't get much of a morning nap so she was pretty exhausted at lunch. She is always pretty honest about feeling tired!

She took a good long nap after lunch, then we went out for a picnic snack in the front yard. Kelsie enjoyed walking around in the grass  (trying to eat it) and playing with mommy and daddy!



Listening to music with daddy.

Being silly with mommy!

Hugging on daddy!

Kelsie is so affectionate! She hugs everyone and will even walk up to random kids at the mall and give them a hug (I don't tell her to do this, she just does it!) Here she had just seen a picture of herself on the camera and started hugging it making a really sweet, loving voice. Haha. What a sweetie!


            

Someone's stinky!

Kelsie does this every time she has a dirty diaper. She scrunches up her nose and sniffs like its stinky. And she knows when to nod her head yes and shake her head no! I took this video last week and posted it to facebook. Dad requested I post it on the blog too because he loves it so much. And I have to agree, it is pretty STINKING cute!

1st sinus infection

Kelsie seems to have a residual sinus infection from the cold she got from me a couple of weeks ago. She's still a little congested but doesn't have any drainage, I can just hear it and have to suction it out a couple times a day. And her voice just sounds terrible. She is so hoarse and at first I thought it could have been from crying from sleep training but it's only getting worse and sounding stuffy. She's had a dip in her appetite and her naps have been a little off but she's also got 2 teeth coming in so that could explain some of that. But it could still post-nasal drip from her sinuses making her feel yucky so her CF doctor still thinks this is a sinus infection and wants to start antibiotics. I've been on the fence because I don't want to over treat but of course I want her to have it if she needs it. And I can see enough changes in her behavior in the presence of this congestion and hoarseness that I also thinks its time for antibiotics. But it also makes me kind of sad because I know this is only the first of many rounds of antibiotics in her life. I know all children have to be on antibiotics at some point and I know I prescribe a lot of them but most of those kids will grow out of that need, but with Kelsie, her need for antibiotics will only increase as she gets older. It's also kind of a reality check into the pathology and severity of CF. This is only her 2nd cold and she has already gotten a sinus infection from it. If you remember, people with CF are at a greater risk of sinus infections because that mucous has a harder time draining out. In the lungs, we can help clear out that mucous by pounding on her chest but we can't pound on her face to help clear her sinuses. Granted it is much more serious to have multiple lung infections over a lifetime than sinus infections but having recurrent sinus infections will still make you feel bad. So I don't want my baby to have either. I don't want her to have this disease at all. But that's not up to me. So I'll just thank God for making us Kelsie's parents and for assuring me that he knows more about this than we do. And also pray that she will not have many problems with pneumonia and that her lungs will stay super healthy.

This picture was taken before our walk this morning. She's so happy to be outside. And even when she's not 100%, she still has the best smile! I love you baby!

I don't understand

God I don't understand. I don't understand why my child has to have this chronic and "life-shortening" illness. I don't understand why innocent children have to suffer and why terrible things happen to good people every day. But I also don't understand why you decided to bless me so immensely with this perfect little gift in the first place. I don't understand why you shower me with your grace and your love even though I mess up all the time. I don't understand how you can love us so much that you would give your son to die for us. There is a lot I don't understand. What I do understand is that YOU are my God. You made everything. You know everything. You love me. And You love my baby. You made me Kelsie's mommy. And that is the greatest gift You could have ever given me. You also knew what You were doing when you knitted her together piece by piece in my womb. You made her, and You made her mine. So I don't have to understand "why?", I just have to trust that You do.

Whatever you're doing inside of me, it feels like chaos, somehow there's peace.

It hard to surrender to what I can't see but I'm giving in to something heavenly.

(Sanctus Real - Whatever You're Doing)

Pray for a cure.

I have to admit I've been a little down lately. I'm finding myself feeling more and more frustrated and overwhelmed by everything it takes to care for Kelsie and manage her CF. I'm just tired. I'm tired of giving her medicine all day. I'm tired of carrying pills and applesauce with us everywhere we go. I'm tired of filling a spoon with applesauce, opening up 4 capsules, and sprinkling them on top of a little mound of applesauce every day every time Kelsie eats. I just want to be able to feed my baby a snack or give her a sip of milk without having to pull out this whole set up. Im tired of doing chest pt every day, for at least 40 minutes a day. I'm tired of having to carry a mental checklist around with me everywhere I go to make sure Kelsie has had enough fat and calories, enough enzymes (but not too many) enough salt, enough fluids, enough chest PT, and the list goes on... No I'm not asking for a vacation or time away from her. That's not what I want at all! I just want her not to have to deal with any of this ever again. I want a cure. A miracle. Or to just wake up to find it was all a nightmare and that my beautiful baby girl really doesn't have cystic fibrosis. I just want none of these treatments to be necessary anymore.


I feel guilty every time I complain about what I have to do to keep her healthy. There is NOTHING I wouldn't do for her! No matter how much extra time it takes out of my day or how much anxiety it causes me, I will never stop doing what is needed to take care of her. I also feel guilty because I know one day she will take over her own care and at that point I will no longer be the one having to give her meds...she will! And SHE will have to do all of this every day!! It will wear on her, I know it will. Yes, it will become "normal" for her, but it will also be extra tasks added to her day and it will not be what her friends are doing. She will have to make time for her treatments every single day when there will undoubtedly be things she would rather be doing. And there will be a lot more treatments than there are today! It will become exhausting. And she will want to be non-compliant. But she can't. Not if she wants to stay healthy and prevent long term lung damage. I will be there to gently remind her of that and help her through it when she feels like giving up. I just hope I can instill in her the perseverance and resilience to overcome the burden of this illness.

Pray for a cure.

Night #6

Kelsie is still getting herself to sleep on her own! Yay! :)  Last night she cried on and off for about 15 minutes - laying down, getting up and crying, and so on. We didn't do a bath right before bed last night making it the first night we veered from the routine, so its possible that could have contributed to why she didn't do as well. Tonight we did the normal routing, including the bath, and it only took her 7 minutes to fall asleep. She kept picking up the pillow and laying under it though. Haha. Whatever helps you sleep baby! Which I should mention...I just started putting this pillow in her crib when we started the sleep training last week. I thought it would ease the transition. Its from our bed and smells like us...and she likes to sleep in our bed and on our pillows. So I thought it would help. And I think it has!

SLEEP SUCCESS!

Tonight Kelsie put herself to sleep within 45 seconds!!! I had to work so Nathan put her to bed and she still went down for him without problems! Oh my goodness, the freedom I feel and the weight that has been lifted!! Thank you Kelsie!

Sleep training: NIGHT #3

Tonight I put Kelsie in her crib after our bedtime routine and she screamed and protested as usual but within 30 seconds she had already laid down!!! (two nights ago, it took 20 minutes before she laid down!) She didn't fall asleep right away though. She kept getting back up crying and throwing her stuffed animals out if her crib. She started trying to throw the pillow out that I had put in there for her but then just leaned it up against the rails and laid her head on it. Finally, she dropped it in the middle of her crib andjust laid over top of it and gave in to sleep. Only took 4 minutes!!!!!! I didn't even have to go in there tonight! What an amazing transition!! I am so excited and so proud of her! And yes, proud of myself too for sticking with it this time! Tomorrow night I work, so I just hope she does as well when Nathan puts her to bed!!

This is how she fell asleep.

Sleep training: NIGHT #2

Tonight Kelsie went to sleep even faster than she did last night! Which was the goal of course! She only cried for a few minutes before she started laying her head on the side of the crib. She did that for about 10 minutes, still crying out intermittently but then she started just standing there quietly, and eventually just laid down. Last night I went in after every 7 minutes of crying and tonight I didn't go in there until after the first 10 minutes. But I didn't have to go in after that because she was asleep just 6 minutes later. I am still so shocked at how well she has done with this! Thankfully she doesn't wake up much in the middle of the night anymore so that really isn't an issue. But when she does, I have a hard time letting her cry because she still has that brace on and it is so irritating to her skin, plus I know it has to be uncomfortable when she wakes up and is trying to go back to sleep.  She usually wakes up around 5:00am or so but will go right back to sleep in our bed so thats what we do for now. And we all sleep that way so it works! And she goes to sleep easily for me at naptime too, so I'm still rocking her during the day. For now at least!

Sleep training: NIGHT #1

See her little head laying on the side of the crib...poor baby fell asleep standing up

Seconds later she was laying down and ASLEEP!!

Well, we finally broke down and decided to commit to making Kelsie fall asleep on her own in her own crib! Since birth I have held or rocked her to sleep. But that has gotten harder and harder. She has gone through many different phases when it comes to sleep.  She has gone from falling asleep easily in our arms to fighting sleep and back again several times. But for the past 2 weeks, she has fought sleep like a bear and trying to get her to go to sleep for 2 hours every night has gotten really old. I get nothing done that way, plus it is just physically and emotionally exhausting. We knew the day would come that we would likely just need to let her cry in order for her to learn to fall asleep on her own. But for whatever reason, there was always a reason night after night to delay the inevitable. All her issues have made "ignoring" her crying even harder. With the reflux, the brace, the CF - all of it just combined to make it hard for us not to believe that she didn't truly need something when she was crying. But we have finally come to the place where we feel comfortable knowing that her crying at nightime is more of a protest than a need. So last night we decided, "tonight is the night". And we did it. I went through her normal routine and then put her to bed, in her crib, gave her paci and her bunny, kissed her, said goodnight and walked out of the room. She screamed hysterically. But we set the clock and decided to do checks every 7 minutes. After 7 minutes of screaming, I went to her room laid her down, did the same things and told her goodnight. At the 14 minute mark, I went back in and did the same thing. At the 20 minute mark she all of a sudden just stopped crying, laid her head on the crib rails and closed her eyes. Then she would cry out and walk around periodically, but kept laying her head down. So I didn't go up at the 21 minute mark because we knew she was getting close. Then she just laid down and that was all it took. She was asleep! After only 22 minutes of crying. It was hard to listen to her cry for that long but it really wasn't as bad as we thought. We were expecting hours of crying and were shocked that it only took 22 minutes! Lets hope tonight is even better! Way to go Kelsie!!

Snuggles

Oh how I dread doing Kelsie's chest PT every night before I go bed but tonight, my sleeping beauty feels so perfect lying here on my chest!! So even though it sucks pounding on her chest day after day and night after night, these little extra snuggle moments make it worth it.

Happy Easter!

Easter is that special time of year we remember and honor our Lord and Savior Jesus Christ for giving His life for us, so that we may be graciously forgiven of all our sins, and have hope for a future and eternal life with Him. We are thankful for the sacrifice He made for us and celebrate the fact that He overcame death and rose again. Despite the brutal death he endured, He is alive today and lives within those who choose to believe in Him. I love this song that says it so well....

Living He loved me, dying He saved me
And buried He carried my sins far away
Rising He justified freely forever
One day He's coming, oh, glorious day, oh, glorious day

Oh Glorious Day - Casting Crowns 

Here are some pictures from our Easter weekend as well. We went to visit my parents over the weekend. 

I just love the beauty of that small town. 

Today we went to sunrise service and the Easter bunny came!

Sundays - church and lunch at the park

Kelsie still doesn't do well in the church nursery and I don't do well leaving her. She is always fine at first, but about 10 minutes in, she realizes I'm not there, she's in an unfamiliar place, and doesn't know the people threre. One Sunday she cried the entire 45 minutes! So since then, I have just stayed in there with her or left and waited nearby to see how she would act. Yesterday was the same story...I left then after about 10 minutes she became hysterical so I went back in and got her. There was also a child in there with a snotty nose and a cough so I didn't feel comfortable leaving her anyway. It's just difficult though, because she can't make it through the service without getting antsy and making noise (yes, we try every week!) But she doesn't make it in the nursery either and I don't want her exposed to other sick kids anyway. There is a room right outside the sanctuary that is never occupied and you could technically hear the sermon this way but I only get bits and pieces since Im also having to entertain and chase a toddler around. So what all this means is that I never get to sit through preaching. Nathan took her out one week so I could stay and we talked about rotating but just haven't done that yet. Right now it's a very frustrating situation but I know it won't last forever so I guess we'll just deal with it for now.

Yesterday I even had to take her outside because she was fussing while we were sitting outside the sanctuary and I didn't want it to be disruptive. She was happy as could be outside....and no, I couldn't resist taking her picture all dressed up! :)

 

After church we picked up a quick lunch and went to the park. She was so excited and took off without us in the direction of the other kids she could hear playing. She's fearless...and tough! That little wobbly walk gets her far but she still takes her share of falls. She will fall, skin her knees on the sidewalk, get up, brush it off and keep going! I love to see that toughness in her, I have a feeling it will be very beneficial to her one day!

 

Her daddy also took her for her 1st time in the sandbox...and what was one of the first things she did??? Eat it!

It's a cute little Pittsboro park and perfect for these lovely spring days!!