Clinic with TWO

Wow, you could never imagine being in the doctors office for 2 hours w/ a five year old and an 18 month old. Seems like an eternity! What a stressful 2 hours!
Get both weights/heights/pulse-ox/temp and whatever else they need...that's the easy part! LOL (Well, Jordin HATES for me to set her on the scale to weight and measure her, but other than that they do well with this part!)
So then we sit and wait...sit and wait...going insane trying to keep them occupied til the doc finally comes in! THEN, I am trying to converse with the doc and Jordin is getting into things, Ashlee won't stop yapping...and so on. The WORST part that almost gave me a heart attack...I turn my back for sanitizer for 1 minute and what do I see when I turn back around?!?!?! JORDIN picking her fruit loops up OFF THE FLOOR and SO close to putting it into her mouth! You can bet I almost FREAKED out! LMAO I told the doctor, as jokingly as possible...but FAR from joking...that I am glad we hadn't done the throat cultures yet, cuz I am sure we will have something by the time we get out of there!

NOW the doc goes to get them crayons and stuff. Don't tell them that Jordin colored on the wall while I was, again, trying to converse with the doc! LMAO What a mess though, I HATE going to clinic! It takes too darn long in that office!
Anyways...now that I have vented about our visit, I will tell you how it went 'health' wise :o)

Ashlee is just above the 25th percentile, which earlier this year she was as the 45th...so we have lost some on the chart percentage wise. BUT she still went up a number since last time...now 36 pounds, so they want me to continue our positive reinforcement w/ the silly bands to drink her Boost and eat her meals. It seems to be going well so far, so hopefully we can keep this up!

Ashlee was quite healthy otherwise :o) YAY!

Jordin...thinking she's got it down pat already :o)

Jordin is now in the 25th percentile for BMI! She is moving on up! YAY! Great news! She now weighs 19 pounds 3 oz! Let's keep that up too! We are still working w/ her feedings/meals as she has a hard time tolerating it. I just don't get it. I am kinda irritated w/ the doc there. I told him how I have read up on Slow Gastric Emptying and that it TOTALLY fits Jordin. I told him I am convinced it is what she has. He looked at me and said "I'm sure she does". That was pretty much all he had to say about it! I asked him, "well shouldn't she be tested for it?". He said since they have the upper GI scheduled, we will do that test and then go from there. Well, she had an upper GI in May, showed nothing we needed! WHY are we going to do another one which in turn will just lead to doing other tests?!?! Grrr... Why not just do the gastric emptying test to begin with? They have ruled out other things already! WTF? Why are they wasting our time like this? It just makes me so mad. I don't have time to waste and Jordin has been through enough. We just want to get to the bottom of it all. She does seem to be doing better w/ eating and her Boosts during the daytime :o) Good sign! I have brought her down to only 3 feedings per day, rather than the 4 they want. This gives her tummy more time to digest before her next feeding.
Anyways, I am happy she has shown a plus in weight for now. Hopefully we can keep going up from here! For both of them! LOL
We were doing good w/ Jordin's feedings the past week prior to the appt...next night, not so great...next night after that...not so great either :o( Grrrr.... I hate having her coughing in the night from her feeding. And I can't keep her propped up either! She wiggles her way out in a matter of minutes! I am up and down all night long trying to keep her propped up.
So we go to the surgeons on Monday. The doc will show me how to change out Jordin's Mini One button and she will get a new button in :o) Then her Upper GI on Tuesday and then more feeding therapy on Thursday. I am worn out from having all these appts in GR. Our whle day has to be planned around them. Like our days don't have enough planning in them!
Also Ashlee's Parent-Teacher conferences on Monday night. See how Ashlee's doing in Kindergarten!

Ashlee, fell asleep in her Vest playing on the computer. Tired much?

I think that's all for now. Got everything off my chest! LOL Hope everyone else is doing well!

Vests :o)

Jordin got her new 'wrap' vest! Saving my arms a TON of work! Here is a video of Ashlee and one of Jordin doing their vests! Ashlee's was done a while back...

Good stuff :o)

Things are going well here. The girls are finishing up antibiotics and seem to be getting better! Jordin's tube feedings are going well at night. The docs want more, but her little tummy just don't want as much as they want it to have! SO I am just keeping it at a rate she is doing well with, that way it is running every night and we don't have to turn it off early. Hopefully she will gain some weight by the time we go back to clinic, otherwise we will have to find another solution and probably have more tests done :o( They also want her to have more during the day, but when I feed more through her tube after she eats like they want, she ends up throwing up...and that's NOT good! So I also try to take it easy with her there too and not over do it. She seems to be gaining to us, so lets keep our fingers crossed!
Jordin's wrap vest came today too! SO excited to start using it! Save my arm some work! LOL We've had a few other good things going on around here too...so hopefully we can keep the good coming!!! Just wanted to update and let everyone know things are going well right now!

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)...

Less than a week...

Jordin will have her surgery in less than a week! She stopped eating much of anything for a couple weeks...we think her reflux had gotten so bad, she just couldn't handle anything...everything made her gag :o( So, I pushed (and I mean I had to push hard to get anyone to listen) but I got her appt moved up w/ the surgeon. So we have seen the surgeon and scheduled her g-tube and Fundo surgery for Tuesday the 17th. It's coming WAY too quick! Not sure if I am ready for this! We did increase her Prevacid and she isn't gagging as much and started to eat a little more the past week, so at least she is getting something for the time being!
Ashlee started running a fever yesterday and was not feeling good, puked in her room last night and still has a temp this morning :o( Hoping whatever it is, Jordin don't get it before surgery. Hopefully Ashlee will recover quickly...she was pretty down this morning when I left for work.
I just wish we could catch a break somewhere! I don't see one yet on the road ahead! Hopefully soon? Please pray that everything goes smoothly with Jordin on Tuesday and that Ashlee and Jordin can be healthy!!! Thanks everyone for your support!

Was hoping for a better vivist :o(

Well, Jordin has been gradually losing a pound for the past 2 months...no gain since her hospital stay, only loss...she is now down to 17 pounds. We recieved 2 referrals today, 1 to Peds Surgery and 1 to an Intensive Feeding Program. She has poor growth and the doc said it is time we step in and put in a g-tube :o( They cannot risk her little lungs any longer. They have given her time to 'catch up' and she is falling behind even more now. This will have a toll on her lungs later in life and she needs the weight. They also said she has GERD and needs a nissan fundoplication. They will do that surgery at the same time as the g-tube.

So, within the next month, that is what we will be doing...getting a g-tube placed and having a nissan fundoplication. Fun, fun...I am SO excited...NOT!!!! Grrrrr.....

Oh, I should add that Ashlee has Hand, Foot, and Mouth Disease (HFMD) and has many sores in her mouth. She is doing okay though, just not really eating a whole lot and not drinking her Boost at all. Hoping Jordin does not come down with it...Here she is in her neb mask and wanted her goggles so the 'smoke' didn't get in her eyes! LOL

Well, that's really all I have to say right at the moment. I am just stressed out and tired and now Jordin is waking up. Will try to post news as it becomes available.