Wednesday, January 8, 2014


I've been trying to decide what direction to take this blog now that I have given the basic info.  Do I keep going chronologically and write about all the things that stand out from the first 2 years, or do I skip to how things are going now and start blogging real time events.  I decided I will do both.  Now that everyone has the background of our story, I will begin writing about events as they happen, and also sprinkle in some entries about important things that happened the first 2 years of Monkey's life regarding his CF.

Today Monkey had a clinic visit.  We had been to clinic 3 weeks ago, and that visit had not gone well.  He had had a cough for several weeks at that point and even with extra treatments and antibiotics it seemed to be getting worse.  He had also gotten taller, but lost weight, which put him in the red zone.  These were both very concerning to our team.  They did a viral culture (a horribly unpleasant nasal swab) to find out what was causing the awful cough.  We also got orders from his dietician to basically let him eat whatever he wanted, whenever he wanted to get his weight back up. I was afraid we were on the path to another hospital admission, which will be very difficult this year seeing that we have a 4 month old baby that is solely breastfeeding.

His culture came back positive for RSV, which sounds bad, but is actually a good thing for us, because it means a.) we know what is going on, b.)it is not bacterial.  After about another week, his cough was much better, and then gone altogether.  We continued to try to get his weight up by letting him eat what he wanted instead of insisting he eat what we put in front of him or go hungry.  And before anyone freaks out on me, by whatever he wants, I do not mean he ate cookies and candy for three weeks.  We really try to limit his sugar intake and he has never had much of a sweet tooth.  What that means is, if he didn't want to eat what we made for dinner, he could have cheerios, or yogurt, or a banana, or whatever else he requested.  It also meant that when we were out at a restaurant with my inlaws over Christmas, we let him eat 3 buttery yeast rolls and then barely touch the meal we ordered him. 

Well, all this apparently worked because he gained a whole kilo (2.2 lbs) in those three weeks between clinic visits!  His team was ecstatic with his progress, as were my husband and I.  Since allowing him to eat what he wants still means he is eating nutritious things (for the most part), it was decided that we should stay the course for now.  So this means I will continue to pack his lunchbox everyday with plenty of options for him to choose from  if he does not like what is being served for lunch or snack at school.  It also means we will continue to feed him whenever he says he's hungry, and give him (pretty much) whatever he says he wants.  It may cause some dirty looks from people who do not understand his special needs,  but we can learn to ignore them.

So, our clinic visit today went very well except for one small issue.  When the nurse practitioner took out the swab to get his throat culture (done at every visit to test for bacterial growth), he must have remembered the super unpleasant nasal swab they did last time, and he totally freaked and could not be calmed down.  He got himself so worked up that when the nurse stuck the swab in his mouth, he puked ALL OVER (and, of course, he was sitting on my lap).  The nurse said that had never happened to her before (leave it to my Monkey to be the first) and we all felt horrible for him.  So we decided to skip the culture this time, and I got to leave in a stylish new outfit!

Next clinic visit: 5 weeks!

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