This video is hilarious

Charlie apparently does NOT like mashed up banana

Some quick videos of Charlie

Here's a cute one of Charlie driving his "car" in his Nascar uniform that his Grandpa MacDonald got for him this Christmas :)

Quick Introduction and some new pics

Hey everyone :)  I wanted to make a quick introduction to any new people stopping by the blog!  I know this site is starting to be shared with doctors and pediatricians offices (for newly diagnosed parents) so I thought it might be time to say hello!  My name is Cassie, I'm 26, live in CT and I work as a scientist- although don't mistake me for an expert on Cystic Fibrosis because I'm not haha.  My husband is Robb, he's 31 and works as a graphics and web designer for a furniture store.  We both had our first son, Charlie, August 28, 2010 and he weighed in at 9lb 3oz (big dude!).  We found out about his Cystic Fibrosis when he was 2 weeks old, it was discovered on his PK screen (the heel prick they do at the hospital- the blood sample they get is screened for over 50 genetic diseases). 

As a sidenote-  we were intially planning a home birth and had to transfer to a hospital for an emergency C section (long story! see the first post for details haha)....but to anyone who is planning a homebirth please know that you can get a PK screen free from the state of Connecticut in the mail.  So just because you're having a homebirth doesn't mean you can't get the PK screen, it's a harmless little heel prick that could prevent a LOT of other types of damage further on down the line- for all types of genetic illnesses.  All you do is send them the blood from the heel prick in the mail (with the information they send you ahead of time) and they'll inform your pediatrician if anything comes up positive.

Anyways we started this blog to share pictures and videos of Charlie to family and friends that live far away and have started adding more details about his Cystic Fibrosis on here as well.  Please don't feel shy to say hello if you're dropping by for the first time- I'd love to hear stories about your child and/or CF as well!  And if you have any questions feel free to email me at CassandraCyr@yahoo.com . 

Here are some new pictures of Charlie at 5 months- Enjoy!

Sitting up on his own :)

Enjoying some peas and carrots

Looking like a big boy in his jeans!

Having fun playing with Daddy

I have a video too but can't seem to make it upload rightside up....stay tuned.....

Charlie's Sick Plan

Hi everyone!!  Charlie has been a bit under the weather the past week (no worries! he's feeling better!) so I thought I would share what happens when he gets sick.

Charlie's CF team at Htfd Children's Hospital has a sick plan for him to follow for when he gets sick, at each visit they write down the sick plan (in case of any changes) so we always know what to do. 

Last Wednesday Charlie started having a cough and started pooping around the clock (usually he's only once or twice a day....TMI?...) so we called the CF Center on Thursday. They advised to put him on his sick plan and if he was still going to the bathroom a lot to call his pediatrician.  He was acting pretty normal but the diarrhea was giving him a pretty bad rash and the cough was starting to sound deep so we wanted to make sure we called to check in.  His sick plan is as follows. 

First, as always, sanitize sanitize sanitize!

Next we pulled out his nebulizer and we gave him 4x treatments per day of albuterol.  Albuterol is a medication that helps relax his airways, in order to give it to Charlie we need to use a nebulizer which also helps break down his lung secretions.  A nebulizer aerosolizes his medication so he can inhale it and it goes straight to his lungs.  After we give him albuterol we physically break up the mucus in his lungs by doing his chest PT 4x per day.  This routine helps rid his lungs of any extra mucus which could provide a place for bacteria to grow.

One of the most important things when using his nebulizer is sanitation. Before each use each piece of his nebulizer must be cleaned in soapy water, dried, as well as being sanitized every other day.  To sanitize you can boil all the parts in water for 10min or soak in a white vinegar solution.  This nebulizer is a direct route to Charlie's lungs so if it's dirty it could lead to big trouble.  These are the parts to the nebulizer:

  

We have two sets of nebulizer parts so to keep them straight I have labeled ziploc bags for storage, depending on if the parts are sanitized or just cleaned with soap. 

This is what the nebulizer looks like once it's all assembled.  The medication goes into the barrel part on the right and he obviously breathes through the mask on the left.

We give him one vial of albuterol per treatment

Here are some photo's of Robb and I adminstering his treatments (guess which pictures Robb took and which ones I took? haha).  Sometimes it's really hard to get Charlie to sit still for the 10-15minutes it takes to finish his treatments.  He'll shake his head back and forth, scream, cry, wiggle, try and slide off your lap, the works! haha but most of the time he's a pretty good sport about it.  Quite a few times he's even fallen asleep during it, which has been kind of a pain because he won't wake up for chest PT afterwards!

 

We also give him saline spray during nebulizer/PT time to help moisten his nose.  The faces he makes when we spray up his nose are hilarious....

 As I mentioned, he was also having diarrhea so we wanted to make sure he was staying hydrated (he can get dehydrated faster than other babies in this situation) so we gave him lots of Pedialyte.  The nice thing about the Pedialyte is that since it doesn't have fat he doesn't need enzymes to take it!  But the bad thing is that since it doesn't have fat he's missing an opportunity to take in extra calories.  We tried to give it to him in between feeds so he wouldn't get so full that he'd not want his formula.

All that diarrhea gave him an AWFUL diaper rash, poor little guy.  We tried a bunch of different rash ointments but the one that worked the best was bacitracin and A+D ointment.  (you'd think it would be the tube I have the picture of right? Never got around to taking pictures of the A+D....oops!)

Ofcourse all this extra work is easy to lose track of with all of his normal medications he needs to take so I added in spaces for each treatment on his normal worksheet.  We were also careful to write down if things were getting better, worse, etc so we could refer back to specific days in our doctors appointments

Here is where we keep everything for Charlie.  It's right in our living room and has his nebulizer pump, supplies, medications, binder, daily worksheets, etc all in one place.  Doesn't look too great in our living room but what can ya do?  Suggestions are appreciated :)

So after a few days of this his cough seemed to be getting better but he still had diarrhea so Robb brought him to the pediatrician.  They said he definitely had an upset stomach and to try not feeding him any fat for 12 hours to see if it would "reset" his stomach.  I thought this would be WAY worse than it was- he just drank pedialyte and ate applesauce and bananas instead of his formula and he was totally OK with it (Bonus: no enzymes needed!).  Thank goodness!

The day after his pediatrician appointment he was scheduled to go see the CF Clinic so we braved the snowstorm and they were able to check him out, too.  He weighed in at 16lb 8oz (same as a week ago so he hadn't gained any weight....which wasn't surprising, but at least he hadn't lost any!) which bumped him up to the 25th percentile for weight/length ratio!  His nutritionist said if he stays on this path he could be up to 50th in another couple months so that was great news. 

So at this point it looks like his cough has gone away and he's definitely pooping less (although still not back to normal).  The CF Clinic suggested we keep him on his sick plan for a few more days so he was on it for a week total (just finished it yesterday).  It was certainly a LOT of work to try and fit in all those treatments in one day and work around feeding and napping schedules. 

One of the changes in Charlie's treatments is to start adding in nebulizer treatments as part of his normal routine, although thankfully not 4 times a day!  We're going to start doing nebulizer treatments every morning and every night because we noticed a definite increase in coughing during PT afterwards.  We WANT to make Charlie cough during PT time, we want him to cough up that mucus to get it out of his lungs.  Typically we haven't been able to get him to cough much during chest PT, but the albuterol first definitely helped loosen up the mucus and get us some good coughs so we're going to keep up with it. 

As always if anyone has any questions feel free to ask :)