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! :)
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| Naptime PT |
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| 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!
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| The things that travel with us everywhere we go |
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| A spoonful of applesauce and 4 enzymes... |
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| 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.
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| 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!
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