SiCk

Yes, that's right....we have ALL been sick :o( It has been a loooong week. Jordin and I got sick first, then Ashlee, then Dad...like a domino effect all within a few days! Sore throats, body aches, snotty noses, coughing...yuck...all that nasty stuff! Jordin has kept a good attitude about it all, doesn't keep her down...a couple nights I couldn't run her feeding tube...but getting back on track! She has that nasty cough left over as always...hoping it goes AWAY SOON! Ashlee was down for a day or two...but wasn't going to let it keep her from school! She was so worried she would miss school! LOL Silly girl :o) She is still stuffed up and gaggy in the morning...hoping she doesn't develop a bad cough from it (what? I can hope! LOL) I am still all clogged up w/ a cough, so I can't expect them to be any better than me.
Clinic on Monday morning for both girls! BRIGHT and EARLY! Ashlee is concerned she is going to be late for school! ( I am kinda concerned too since it is picture day! Grrr...) Hopefully we can get her there on time for pics! Hoping for weight for both of them! Ashlee has been having issues drinking her Boosts, so not too convinced there :o( Hope Jordin has gained a little despite being sick! STILL waiting on insurance approval for Jordin's new tube formula...don't know WHY it has to take so long or WHAT I could do to make it happen faster.
SO many of my FB friends are having issues w/ their CF right now. I hope for the best for all of them, including Skye (many issues like Jordin), Eve (had a lobectomy at age 4 and is sick again), and Jordan(22 years old waiting for a 2nd double lung transplant and not doing so well with waiting so long). I am so happy to have met these people, even if it is just through internet. The list goes on and on though... It is scary what we have to go through. Just when I think WE have it bad...I look at these moms of these children and can't even imagine being in their shoes. Please keep them all in your prayers :o)
Hoping for a good clinic visit for us on Monday!!! Just wanted to slip in a quick update!

Sorry I have put this off so much. Things have been so busy and I have so much paperwork and crap to take care of, that this just didn't make the list. I wish I could be better about taking the time to update this more often. I will try my best! I am working my way to being caught up with things!
So, as most of you know, Jordin had her surgery on Tues, August 17th. She had the Nissen and a g-tube placed. She spent 3 days in the hospital and we got to go home by Friday morning! It was probably our shortest stay we will ever have! LOL She was in alot of pain for a few days or so. Then for a couple weeks it hurt her to cough, so we had to help with that cuz Jordin is a cougher!
For the first few nights of feeding, it went well. She had taken 2 cans of Pediasure throughout the night. Then about the 3rd or 4th night...she would start coughing about half way through the night. I would turn her machine off as the coughing had gotten bad and she would continue coughing for the next 2-3 hours :o( No sleep for us for a couple weeks. 90ml became her max through the tube.
She started Miralax, Reglan, tried new formulas...nothing worked...still causing her to cough. One night I decided to try putting more enzymes in her tube after 4 hours of running (about 2am). NO to minimal coughing! So, we have continued on with that and she is doing well! IF I neglect (or don't get up by alarm on time) to put her enzymes in...coughing! Weird! SO I have to make sure that she gets her enzymes in the night now! She is now using Peptamen Jr at night (well, until I ran out of the samples...waiting on order/insurance now)...it will be easier for her to digest. She is up to 320ml (40ml/hour x 8 hours) of the Peptamen. I have decided to put her at 8 hours rather than 10 cuz if she goes over the 4 hours without enzymes it causes coughing...so 10 was not a good number. Maybe in the future.
She hasn't really gained any weight yet...but we haven't gotten her figured out completely yet until now either, so hopefully NOW she will gain some weight!
Ashlee is now in Kindergarten! She is LOVING it! She goes 2 full days one week, then 3 days the next week...she is getting a Boost in the middle of the afternoon to keep her weight up.
Me, I am TRYING to work part-time still, but keep getting taken from work! Had to leave the other day to get the girls' flu shots, otherwise wait another month. Today, got a flat on the way to work...had to deal with that, was late! Grrr... Grandma has been a HUGE help to us and has been coming to our house to help with the kids! She is THE BEST grandma EVER! I couldn't do this without her! Dad still has training to do...grandma has little practice, but can do the basics :o)
Well, I will try to update sooner (as I say every time)...