Tuesday, August 3, 2010

Lots of new stuff

Hi all! Sorry this has been a long time coming, been a bit busy. There has been SO much going on here in the Ruple household, kinda crazy actually. So Emmies surgery went well. Labial adhesions taken care of. We had clinic this past week and am (somewhat) happy to report that Miss emilie has been put on a diet! That is actually one amazing feat for a CF baby!

Em previously would not eat any solids without severe bribing. When we went to clinic last week she was up almost 4 pounds! Seriously? So they gave us 2 options. 1.) start diluting her pediasure half water and half pediasure or 2.) cold turkey her pediasure altogether.

I came up with my own idea I guess, we have cut out all pediasure except for our nighttime one. Seems to be working ok as of now we are only 4 days in so we will see. Also, decided to change her albuterol to xopenex, (she has been getting really twitchy at night)and we have attempted it and so far not really impressed. She did MUCH worse on the xopenex vs albuterol. So now we are going to just get through the xopenex we have open in the morning albuterol at night and from then on continue with straight albuterol.

They have also changed her nasal spray b/c she was complaining of burning, have not picked that one up yet.

Also, on a mad hunt for source cf vitamins. Can't seem to find a pharmacy in this area that can stock it. I have not used the CF pharmacy ever yet and not sure how it works so any input on that would be great.

On another note we are feeling very blessed to have such a healthy little CF warrior on our hands. I am extremely nervous about our nutritional health as she does not want to eat what she should be. I am excited about the fact that her dietician went through a list of what EXACTLY she was eating before we went to clinic and told us she had only been getting about 1000-1100 calories a day. Really? for a CF kid that is incredible. They actually want us to cut that down a bit. I think we will be ok.

Emmie is now doing her vest again. She took a break for a while. Not a mom approved break may I add. She would just scream, and her nose would get nasty. So a break it was. We are now back at it full force. Pulmonologist said we only need to make certain we are doing 20 mins a day. We are doing it wether she likes it or not now. I am not going to let this disease get me down. Earlier in the day today I made a phone call b/c I was just a bit overwhelmed. Got calmed down. Thanks Grandma. Medications can be insane sometimes. Finding a pharmacy that carries them insurance to cover them. A pharmacy tech that is cooperative. Makes you want to pull your hair out sometimes! It is now under control.

Another great thing we are working on is getting a float for the Rock CF Foundation in the Bay City St Patricks Day Parade. This event is huge around here drawing in crowds of 8-10,000 people anually. Imagine all the attention CF can get especially if we have an awesome float that I know can be designed between myself and Miss Emily Schaller! Soooo excited about it! Can not wait.

We are looking at doing a pancake breakfast also. Lots on our plate right now, speaking of which apparently Jason has dinner done. Probably should go eat!

Jason, Melissa, and Emmie too!