Wednesday, September 26, 2012

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.

Monday, September 24, 2012

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.

Thursday, September 13, 2012

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!

Tuesday, September 11, 2012

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.


Monday, August 27, 2012

Exhaustion

Its been a pretty good week, well, except for the fact that Kelsie has started getting up TOO early! She has been waking up at random times over the past 2 weeks and I don't like it! Its been anywhere from 4:30-6:30 and she used to wake up routinely between 7-8am. And not only is she waking up early, she is waking crying insistent that she is not going back to sleep. Yesterday I tried and tried to make her go back down in her crib but after 30 minutes of crying and throwing things out of her crib, I finally brought her back into bed with me. She continued to fuss and whine but I ignored her and continued to keep my eyes closed, and she eventually laid down and did the same. She then slept until 8:30!



We had a pretty uneventful day...went to buy some fall flowers and then I worked to get those in the ground during her nap. We went to the grocery store as usual (why do I end up there at least 3x a week!?) played outside, watered the grass and Kelsie couldn't help her curiosity and went to see what the sprinkler was all about! So I just joined her and we ran through it together. :) Got all wet and I was super dirty from planting flowers so we took a little afternoon bath. I figured out a new solution to the "mommy needs a shower but what do I do with the toddler?" dilemma. Since my shower and bathtub are side-by-side (but separate), I put her in the tub while I took a shower. I could see her through the mirror and she was content because she could see me as well.  And had a tub of water and toys to keep her occupied. This worked out great yesterday but I tried it again today and it was a disaster. She ended up pooping in the tub while I was only partly through with my shower, so I had to do some poop scoopin, then both of us ran dripping wet to the other bathroom where I finished my shower, then cleaned her up, then got her diapered and dressed, put her on my bed with the TV on while I got back in the shower to shave. Its exhausting just talking about it!

Sunday, August 19, 2012

A weekend of firsts!

We had a great weekend! We started it off on Friday morning by getting up bright and early and driving to Asheboro to see my sister give a speech for the entire Asheboro City School system. She won the Apple of Excellence Award for the district which is the 1st Year Teacher of the Year. So I got Kelsie up and put her in the car at 6:30am and we drove to Asheboro where we met Valerie for breakfast. Which I believe was Kelsie's first breakfast out! Then we saw Valerie give her speech and I cried the whole way through. I was just beaming with pride. She is such an amazing teacher and she did such an amazing job portraying her passion for teaching and her genuine love and concern for her students. I will try to post her speech in my blog later for anyone interested in hearing it! Grandma and grandpa were there for the speech too so Kelsie enjoyed playing with them as well!



Nathan was gone for the week away on business so we were excited to have him back home Friday evening!



On Saturday we took Kelsie to get her first haircut! Her grandmas have been bugging us for more than 6 months about getting her bangs cut and we have gone back and forth about it. We know its long in the front and gets in her eyes but if we just keep it pulled back, its fine. But it needed to be shaped up so we took her anyway. The lady at the hair salon first said we shouldn't do bangs, just pull her hair back to keep it out of her eyes and just let her hair figure out which way it wanted to go. But then she started messing with it and said she could do a few little bangs if we wanted, so we just went with it and needless to say, she ended up with bangs... against our better judgment. :( Now neither of us really like it and are just ready for them to grow! Oh well, it doesn't bother her either way! So its no big deal. She's CUTE no matter what!

Before...





Enjoying her very first sucker that the hairdresser gave her to keep her still.

After!

new bangs and also trying on a new fall outfit! :)

We also turned her carseat around to face forward for the first time!! She looks like such a big girl now!


And she also went to Sunday School for the first time! Now that she has dropped that morning nap, we tried it out today. And I put her in the 2-4yr old class because there is an age gap at the church and there aren't any kids her age right now. I thought she would do better in that class for 2 hours with the other kids rather than in a room by herself with a couple of adults. She doesn't quite have the attention span for that class yet but still did pretty well. I stayed in there today to see how she would do and I think it went ok. She sat in the chair for the lesson for a good while but not as long as the others. But she did sit and do her craft (with me assisting) and sat in her seat for snack. She was more interested in playing than sitting back in the circle for music time, but hopefully she will get used to that structure with more time.

Thursday, August 16, 2012

Health update

Its been a while since I've written about Kelsie's illness, which is a great thing because really there hasn't been much to write about! She has been doing extremely well and I am so thankful for that! But I still like to update from time to time because things do change.

As far as her health and her growth, she is still doing fantastic! She hasn't had any real sickness (with the exception of normal kid stuff - hand, foot, mouth virus a few weeks ago and a little stomach bug a while back) and has been growing and developing just like she should without any setbacks! Praise God!

Respiratory wise - nothing. No cough. No colds. No symptoms of lung disease whatsoever! Part of me thinks maybe this will always be the case...maybe she will be one of those rare people who has CF but doesn't really have any lung involvement. But then on the other hand, I read things that say that EVERYONE with cystic fibrosis will eventually have chronic lung disease and then I go back to that place in my mind where I keep wondering when its going to hit us, when its going to affect her, when is she going to get really sick? I know I shouldn't do that, and for the most part, I would say that I don't really think that way. Most of the time I just relish in the time with her now and think how blessed we are to have her. I think how beautiful she is and smart and funny and I think about what a wonderful future she has ahead of her. I think of where she'll go to college one day and what she's going to be when she grows up. I usually don't really worry about how sick she could get. But sometimes I do, and when I do, I get really scared. Scared enough that I do whatever it takes to keep her healthy now and pray that God will protect her little body always and never allow her to be taken from me.

              ok, so I got on a little emotional tangent there, huh.

GI wise - we're still trying to figure out this whole constipation thing. She is still on Miralax everyday. I'm not happy about giving it to her daily and have noticed that her body has now seemed to become dependent on it (even though thats not supposed to happen with this drug.) On the days that she doesn't get it, she ends up with hard constipated stool. And that never happened before she started taking it. In fact, the only way we found out she was constipated was through the xray. Her only symptoms were large LOOSE stools, intermittent vomiting, and decreased appetite. So I'm ready to go back and discuss this with her doctor to decide how/when to come off of it. She had said before that some kids with CF end up needing Miralax on a daily or every other day basis their whole life. But I'm really hoping that doesn't end up being the case for us!

Chest PT - this is getting more and more difficult. We used to do during the morning nap and at night while she is sleeping before we went to bed. Well now that she has dropped the morning nap, we have to do it during the afternoon nap but she eats lunch right before naptime and we are supposed to wait 45min-1hr after lunch before doing it due to the risk of her having reflux and aspirating. But if we wait too long, it sometimes wakes her up or interrupts her full nap. And at nighttime, she twists and turns and rolls over trying to get away from it. Its obvious she just wants us to leave her alone. She doesn't wake up or cry out but she won't lay still for us to do it for very long. So it ends up taking twice as long but is never as good as it used to be and she oftens ends up getting put back to bed before its even finished because we realize it is a losing battle and we are just disturbing her rest too much. However, she is supposed to get fitted for the vest at her next appt on Sept 7th so I am excited to see how that goes! I hope she likes it (or at least doesn't mind it) because I think it will really free up our time and be a more effective way of giving her airway clearance. And just disturbing her by picking her up out of her crib while she is sleeping makes me feel bad...and she is getting so big! Its hard to get her in and out of the crib while she sleeping. Its just a little annoying to have to do it every night when we are feeling tired ourselves and just ready to go to bed. But its the routine that has worked for us and she needs it so we do it! :)

Naptime PT

Bedtime PT- look how big she is!!! When did that happen?
 

Enzymes and Meds - This is going really well these days! She does so well at taking he enzymes each time and I am so proud of her. She is currently taking 4 enzymes per meal and 3 with snacks (unless it is a big or fatty snack). Its definitely just part of our routine now but its still burdensome especially when we are at the grocery store, the mall, the park, the pool etc...and its time for a snack. Finding a space to pull out the spoon, the applesauce, the enzymes, and open them up and sprinkle them...its just a laborious process sometimes and it gets old. I guess its really not all that bad but I am looking forward to the day when she can just swallow the pills whole. And trust me, we will be working on that at a much much earlier age than most! Given me another year, I'd guess, and we'll be there!

The things that travel with us everywhere we go

A spoonful of applesauce and 4 enzymes...

Sprinkle and give!



She really doesn't take that many other meds...just her vitamins and reflux meds (Prevacid and Zantac). The Prevacid is chewable and I have just been giving that to her whole for several months now. The other 2 are liquid so I have to draw them up. The vitamins are foul tasting and dark orange so they stain horribly! I used to give her 1ml twice a day but I just switched it to 2ml once a day bc that is easier on us and she is doing such a great job taking it. I really feel good about how well she takes her meds and really think I have figured out the trick. Being a pediatric nurse, I used to spend my whole day giving medicine to kids. I remember we would have to hold kids down to given them their medicine and it was such an awful experience for them. Some of them would scream and cry and kick and fight us the whole time. Knowing that Kelsie would have to take medicine the rest of her life, I never wanted her to "hate" or "resist" her meds so from the very beginning, I never forced it. Well I guess I can't say never, because she has gone through little phases of resisting it and I would give her some time and wait until she was ready but if she was just in a mood and refusing it, I would have to figure out how to get it in her anyway. So there were a few instances in which I had to do that against her will. But for the most part, I have never held her down, held her head or her hands while I forced her medicine. I didn't want her to start associating taking her medicine with a bad experience. So I have always tried to wait until she was ready for it and then celebrate when she took it. I am convinced that this has now payed off. Every time I give her medicine now, I throw my arms up and dance around like a silly person singing "Hooray Hooray" and Kelsie thinks it is the greatest thing. She now smiles when she sees her medicine coming and then throws her arms up saying Hooray after she takes it and laughs and laughs at whatever dance I come up with to celebrate. Its just great. I'm so glad we don't have to fight her to take her medicine every day and I'm proud that we never made it a negative experience for her so that she can now "enjoy" taking them.

 Meals - I am so thankful Kelsie is such a good eater! She really likes to eat and will try anything I put in front of her. She sadly is becoming less fond of things such as squash/zuccini and broccoli which used to be her favorite. She will still eat some but not like she used to. I still add butter and salt to most everything that she eats (if it makes sense to of course), just to give her the extra fat, calories, and salt that she needs. She still drinks milk with every meal and usually with snacks as well. She is eating 3 meals with a morning snack and an afternoon snack.

Mmmmm spaghetti dinner with daddy while mommy was at work!


Sleep - I can't even believe how good of a sleep Kelsie is now. When she was a baby and waking up several times at night to nurse and wouldn't go back to sleep unless she was in our bed, I really thought she was going to be a terrible sleeper throughout childhood. But now she is sleeping 7:30pm-8:00am (sleeping later this week but I'm sure that will drop back down to a 7:30a before long) and takes a 3 hr nap from 1-4pm everyday. She falls asleep on her own without crying and doesn't wake up at all during the night. Its just glorious! :) Finding that schedule and sticking to it is key, I'm convinced!

Thursday, August 9, 2012

Museum of Life and Science

My friend Kelly and I took our girls to the Museum of Life and Science today, and as usual, we all had a great time! Kelsie and Ava haven't seen each other in over a month so Kelsie was definitely excited! And she now tries to say her name too, which is very cute. We missed Ava's 1st birthday party because it was the same day as my sister's wedding so we took her gift to her today. Being the big girl she is, Kelsie had to help her open it. :)
Happy Birthday Ava!

Going down the slide





Horseback riding with my best friend

Posing for a photo in the butterfly garden

Smelling the flowers...she really was - grandpa taught her this last weekend :)

Look mom, a butterfly!
 She knew there was a butterfly on her shirt too, I told her that once this morning and she remembered. She will also do a little flutter flutter wave with her hand when you ask her what a butterfly does. They are so smart at this age!! Pick up on everything!!



 Kelsie is 17 months and Ava is 12 months.     Kelly and I were commenting how much bigger Kelsie looks even though she is just 5 months older. 


 
So many beautiful butterflies!

Us and our girls! :)