So much...

I don't know what it was that kept me away from here for so long...but something did! I guess I feel I don't always have the time or energy to sit and type up a whole blog. IDK But I always feel good once I get it all out and posted!
So, alot has happened since I last posted. Jordin ran that course of abx for the Psuedo, then 3 days before finishing her Cipro, started getting sick again. Her culture at the clinic was clear, had slight irritation in her ear and a bad sinus infection. She was then put on another abx, Omnicef, to clear all that up! So, as you can imagine we have been on increased treatment for what seems like FOREVER! Jordin hardly EVER gets a break from increased treatments! During the last abx, she got diarrhea and we got on a probiotic too...not sure we can keep it though...could hardly get the ins to pay for this dose! So, now she has finished the last abx and seems to be improving daily :o) FINALLY!
Forgot to mention, during the last abx round as well, Jordin came down with a yucky stomach bug which left her puking and laying in one spot hardly moving for about 24 hours straight :o( My poor baby was NOT feeling well at all! Glad it only lasted the one day and I was able to keep her hydrated!
Jordin also had her 18 mo check up...she looks great! (to the ped that is! lol) And the pediatrician is looking in to why her referral to GI was never taken any further...driving me nutz! Jordin doesn't constantly puke....but it is frequent enough to get sick of it! I HATE puke! I am SO
sick of cleaning up puke! Grrr... Still not sure myself what exactly is causing the puke...not always the same circumstances. Alot of the time it is cuz she gets worked up...the littlest crying will help to induce her puking :o(
Ashlee is going to be 6 years old tomorrow!!!!!!!!! Woohoo!!!!!!! She is so excited! She is having a party with her friends this weekend :o) I don't know if I told you guys, but Ashlee got 10 inches chopped off her beautiful curly head and is donating it to Locks of Love :o) Bad news for her...she came down with a bad cold/cough last Thursday :o( She missed school Thurs and is staying in from recess for now when she has school. Hopefully it passes quickly. It has been just about a year since her admission...
Along with all that, my family is not in the healthiest of conditions either :o( Many heart attacks and other medical problems going on with my grandma's and my own Dad :o( My dad is still young and has had 3 heart attacks :o( I hope he can find it in him to stick around as he is my daughters' only grandpa! Please pray t hat my family finds good health right around the corner! Way too much stress to be dealing with!

Good thing I got these silly girls to keep me smiling :o)

Where do I start?

Well, it has been quite a week already. Hard to believe it is only Tuesday? Wow. So anyways, I called clinic on Monday cuz Jordin's cough had increased. We were going to start abx on Friday if she had not improved, BUT I really thought she had improved, so I didn't want to call and start abx. Well, by Sunday night she was coughing in the night :o( So I decided I better call on Monday and see what the doc says.

Went to Ashlee's PT conferences... GREAT news as expected! Ashlee is doing wonderful :o) A little smarty pants. A few thing to work on, but overall doing her best in school! I was all hyped up about the great report on Ashlee to get home and find out on a message that Jordin needs to start Tobi and Cipro. Well, that could only mean pretty much one thing...she cultured Pseudomonas again :o( I confirmed that with the cinic on Tuesday morning on the way to her upper GI appt. SO, that will tac on another 30-45 minutes to or morning and evening treatments. Wow...not sure how...but we will do it! She hasn't wanted to wear her mask again, so that will be an issue to. Her cough today is viscous. My poor baby girl :o( We Need to get this bacteria out of her lungs. She don't need it!

Her upper GI went well, in a sense...her Nissen is working wonderfully and there is no reflux! WHAT? That is crazy. Then WHY is she puking on average at least every other day???????? I am shocked w/ the result today. I seen it myself. Nothing was coming up! Se was crying, screaming, and coughing...and nothing. The coughing and crying def triggers it at home, so I am stunned. It was sad though. She hated it. They strapped her down and shot a bunch of yucky Barium mixture into her mouth, forcing her to drink large amounts of it, while she cried and gagged :o( I hate watching her go through all this :o( I just wish the test would have showed SOMETHING. I mentioned the slow gastric emptying to the tech and he said that she was emptying great as well. Her small bowels were already filling up as we watched. Interesting.

Oh and Jordin got her first new button change on Monday! She has a nice shiny new button :o) It was very simple. I mentioned the slow gastric emptying to the surgeon as well and he said if the upper GI showed nothing, he would order the test for that. So, we'll see if that is still what he wants to do. I think we are about at a stand still. Not sure what comes next? Scared for Jordin though.

Will keep you updated :o) As you can see, she is still keeping her spirits up! She is such a happy baby when she is allowed to be! FUCF!

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)...