A day in the life

So some might wonder how CF plays a role in our day-to-day life. For the most part the only way it does at this time (besides my fear of germs) is in the way of medications and chest physiotherapy. (He is currently four and a half months old)
Medications:

As I mentioned before, Nash takes a half a capsule of pancreatic enzymes each time he eats. (Which right now is about 6 times a day)  We were told we could try different ways of administering these enzymes, one being with a little bit of apple sauce.  We tried that at the beginning and he didn't like it so for us, we use little plastic medicine cups and have three lined up and ready to go at all times.  We just squeeze the medicine cup, pour them in his mouth and then feed. Sometimes depending on the angle we get them in his mouth he will choke and gag and other times, with the perfect pour, he doesn't even notice. When he starts on solid foods we will then be able to put the enzymes into his food. Yeah!! We are lucky that there is a government program that covers the cost of Nash's enzymes until he is 18. Also, if we are running low, we just call the pharmacy at Children's and they FedEx them overnight at no cost to us.

Enzymes all lined up and ready to go

Enzymes already split up and ready

As for the AquADEKs (Antioxidant Multivitamins and Mineral supplement)...I curse this stupid bottle!  It is bright orange, stinks and stains everything it comes into contact with.  I have said from day one, whoever came up with this stuff obviously did not have to give it to their child.  However, Nash loves this stuff!! He would drink the whole bottle if we let him.  This bottle comes from the States as there is no equivalent in Canada at this time so we can only get it from the pharmacy at Children's Hospital.  We only have to pay the dispensing fee which for us, would be the same cost if we had to continue giving him daily Vitamin D drops. (Which we don't as there is Vitamin D in the AquADEKs) We give this to Nash in a syringe once a day but I know that others who put it directly into a their bottle or give a little bit at each feed to equal the amount needed in a day.  Once he is older there is a pill form of this so we will be done with the orange stains on everything!! I try to keep certain onsies, sleepers, facecloths and receiving blankets that are specific to when we give him the vitamins.

Nash also takes Ranitidine twice a day for reflux.  We are told that many CF patients take this and is also helps with the enzymes.  Funny enough this medication smells like mint and you would like he would like it but he scrunches up his face and gives me a dirty look every time.  He doesn't fight it though.

Lastly, we give Nash a salt solution mixed into a bottle once a day.  Again, in the beginning we tried to do a little at each feed in a syringe but as you can imagine, drinking salt water no matter how small the amount is not fun so I pump to be able to give him one bottle a day with the salt solution.

Chest Physiotherapy:

I've touched on this a bit in a previous post but here is a picture of the onsie we were given to remember where on an infant we are looking to do the chest therapy.  We use a cupped hand and do "percussion" over these areas. Right now this is approximately 30 minutes, twice a day.  We use the Baby Einstein DVD's to keep him entertained and still while we do this.  There are some areas that I can do while he is asleep and it amazes me that he can sleep while I beat away on him.  They say that for some babies/children the repetitive beat/motion is calming for them and often will put them to sleep. We are lucky that is the case with Nash and hope as he gets older he won't fight us.  If Nash were to get sick, we would have to do chest therapy approx. 4X a day.