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)...

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.

Well, as you can tell...the blog is on the bottom of my 'to-do' list. Probably because I am not sure how many people actually READ the blog...so I am not sure if it is worth it or not. If I KNEW there were a bunch of people reading it, it may be bumped up on my list :o)

This has been a very sad week for the CF community. Conner, a sweet 7 year old boy, lost his battle to Cystic Fibrosis :o( This broke my heart...I am SO sad for his family, BUT he is 'breathing easy' now :o) His mom is the strongest women I have EVER gotten to know (only through FB and blog, but it feels like I KNOW the family)! She is an awesome woman! Please keep this family, Sarah, Brad, and the two little brothers, in your thoughts and prayers. ALSO, PLEASE wear RED in rememberance of Conner on Wednesday!!!!! Thanks for your support!

We are all doing well! Jordin had gained 2 pounds in the 2 weeks she was at the hospital!! Yay Jordin! Then she came home and came down with the flu 2 days later and I ended up taking her to Zeeland hospital for IV fluids due to a really high fever that was not going away all day and vomiting/diarrea...not the best combination for her! But, we did the IV fluids and got to go home within hours :o) SO, hoping she didn't loose too much weight during those days she was not up to par AND that she has continued to gain weight! She goes to her 1 year appt at the pediatrician tomorrow, so cross your fingers!!!

Jordin is WALKING all over now!!! She doesn't crawl much anymore! She looks so silly walking around cuz she is so tiny :o) It is so cute!!! LOL Gotta love it!

Down side...she has developed an increased cough AGAIN in the past week :o( She is coughing through the night, so not much sleep around my house lately. Hoping to stay off extra meds, but at the same time expecting for her to be put on more steroids :o( AGAIN! UGH!

Ashlee is doing GREAT! She just finished her Tobi last week and does not have any cough! She went to bible school last week and now I am signing her up for a bible class there on Tues and Thurs for the next month. She is pretty excited :o) She LOVES bible school!AND she learned to ride her bike without training wheels in a matter of 15 MINUTES!!! Yes, 15!!! LOL She is a smarty pants and glad to be riding a two-wheeler!

I was going to post videos of walking and bike riding, but this won't let me right now for some reason? Oh well!

Well, we are all mostly just happy to HOME together!

Hoping our next hospital stay is FAR AWAY in the FUTURE!

Bronchoscopy

Just wanted to update you all on Jordin's stay here. Things went great over the weekend (well, of course things would go smoothly while grandma stays...saved the dirty mess for mom :o))! My only problem I noted over the weekend was from Sat, grandma told me they did a blood draw then came back later to do it again stating that they 'lost' the last one! Are you kidding??? You lost her blood, now you're taking more? I would not have been happy if I were here and they WILL hear about that from me! Anyways, I got to spend the weekend home w/ Ashlee and got some much needed rest! THANK YOU Grandma!!! Jill is the BEST!
So, Monday night was another fasting night (of course they had to do a blood draw in the night and ended up waking her at 4:30 am :o( UGH! pissed me off!...no food/bottle after midnight, clears til 9am and nothing after that til after her bronchoscopy, which ended up being about 2:30 before she finally got to have a bottle. She was VERY happy to have that bottle! (and so was I after a long morning!!!)
Her bronch went very well and quickly. Dr. Millard found lots of mucous again and suctioned out as much as she could. Some of it had particle like stuff in it, we are hoping getting a bunch out will help her out some. All that will get sent in for a culture (which her throat culture from Tues came back clear, hoping for the same results with all this!) Dr Millard was concerned with all the mucous left even after beingon abx for a week already. She has also said that the tracheomalacia Jordin has is considered moderate. Her cough will be worse for a while after her bronch, but otherwise she is just happy go lucky climbing all around and trying to get into everything like normal again!
Oh yes, and AWESOME news is that she is gaining weight!!!! She has gained over a pound in a week and is now 17 pounds!!! She is eating very well! (Well when they let her!!) So happy for the weight gain and so were the docs!
I will be here through Thursday, I think Jill will be coming back up Thursday night so I can still prepare and have our yardsale this weekend :o) We have lots of crap to get rid of and could use the money! I think that's all the news for now...things should be pretty steady from here on out (I can only hope!). Just running these IVs and hoping we can get out of here in the 14 days planned :o) We'll keep you all updated...

Another admission for Jordin :o(

Well, here we are again...in the corner of the hospital w/ Jordin looking over Grand Rapids. She was admitted again from her clinic visit for many reasons...wheezing, bad cough, low weight/height, and lots of mucous production. We are looking at 14 days with her this time.

So our first 24 hours have been the worst EVER! I can't even believe it has only been one day. I will try to make this as quick as possible...She got her IV after we got here, nurse screwed up trying to 'drop' blood samples from the IV before completely placing it, so now Jordin has a nasty ugly bruise on her arm ( to go along with her other 2 or 3). Then come to find out an hour later that she didn't even get all the blood they needed?!?! So she had her blood done 3 times yesterday :o( Then, no meds delivered for bedtime...so I gave her the meds I happened to bring along and they did her nebs at a decent time. Sat here trying to keep her busy for about 2+ hours (with nothing going on, not even abx started yet) then finally got her to sleep around 10ish and in her bed around 10:25. Plugged in her IV machines, and not a second later they come in saying they need to take her down for a chest X-ray! Are you kidding me? I was furious! I argued, but they insisted it had to be done. So off we go for x-rays...she slept through to the end and woke up for a few minutes, but luckily went back to sleep once we got back to our room :o)
Fast forward to about 3:30 am when they came in to check her vitals, woke her up taking her temp. So I got up, she finished vitals and I said she would probably need a bottle to go back to sleep at that time of the night. Nurse told me she couldn't eat! She was NPO since midnight for her central line in the morning! I was NOT informed of this prior to bed. AND, if she can't eat, then DON'T wake her up!! SO I spent the next hour laying here fighting her to go back to sleep. Finally got her back to sleep. Morning comes and nobody can seem to tell me what time she is having her central line placed! 9am rools around and I am SO mad cuz Jordin has already missed 2 bottles and is starving! Now the student nurse that comes in tells me she is not having her line placed till tomorrow, she is only having an Upper GI and a swallow test today! WHAT?!?! My 1 year old is starving and she shouldn't be???? Excuse me??? I must have been turning red, cuz everyone got very apologetic and sympathetic. I was SO upset! Then the RT wants to do her nebs before she eats?? I don't think so, hello...she has been waiting all night to eat! Forget all you! So anyways, she got to eat and then had to go back to NPO for her 2 tests she did have. The doctor had scheduled her line to be placed on Thursday, so she is not sure what or how things got mixed up. And needless to say, the social worker felt it necessary to get Patient Relations involved in such a screw up on an infant. Still waiting for them to come to my room.

She did well on her Upper GI and everything seemed to look fine with her anatomy. It wasn't her favorite thing, but she made it through. She was passed out while waiting for the swallow test since she hadn't gotten decent sleep the night before and I told them she was not going to be interested in eating all their crap they had planned for the swallow test if they woke her up. Well, of course they didn't listen to me...We propped her up in the seat and made her wake up, only to shove a bottle in with barium in it, which she didn't drink the amout they wished her to, but the couple sucks she took looked okay, then she ate some of the applesauce/barium and that was it. She was done AND of course never went back to sleep after that, so crabby ALL afternoon! I finally got her down for a nap around 4:30 and things have been much better since then...hopefully we can stay this way.

Unfortunately we have to wake up by 4:30am to feed cuz after 5am this morning she can only have clear fluids til 9am, then nothing til after 1pm when they place her central line. So it will be another long day...

Waiting for culture results to confirm she didn't get any of the B Cepacia from that darn Tylenol.

She is on 2 IV abx, 1 IV steroid and 1 oral abx (that she hates!). The doc said she was sounding better already today :o)

Well, I think I have said everything I wanted to, sorry i am so full of it tonight, but it's been a long day! I am off to bed!

I am going to try to post this video I took of Jordin letting everyone know what SHE thinks about all this, not sure if it will work or not!

May is CYSTIC FIBROSIS AWARENESS month!

Let me start by saying...things have been very hectic around here! If you don't already know, we have relocated to Zeeland's Logan Estates community :o) We have an awesome new double-wide w/ plenty of space, new carpet, new paint and an overall MUCH healthier living environment for the girls! We are more than pleased with our opportunity to move!
Ashlee is doing great and sticking around the 45th percentile for weight. She had a great clinic visit and does not need to be seen until her normal 3 month check-up. She has been a little stuffy/slightly coughy, but the way it's going...we ALL have been having problems :o( Not sure what the deal is, but would like to get to the bottom of it all and get us all healthy! UGH! So frustrating!
Jordin has still been wheezy on and off and still consistently coughing. Her cough is heartbreaking. I wish I could make it better for her. At her last clinic visit she was put on a months taper or steroids. She is just about done with that :o) We knocked out her Ursodiol (for her liver) and hoping her blood test at next visit shows she is good to go without that med. Hoping to get rid of iron at her next visit...fingers crossed!
She had an Airway Fluoroscopy (sp?) a couple weeks ago. Her test showed she has Tracheomalacia. This means that her trachea is floppy rather than rigid, so when she breathes, her trachea flops together between respirations causing this wheezy, noisy breathing we hear. It is also part of the cause to her coughing. From what I read, she should grow out of it by about age 2, but not always the case. So hopefully that will be Jordin's case :o) They put her on Singulair, and the night we started it stopped her nighttime coughing fits! She seems to be doing better at least through the night :o) I still have yet to talk to the docs about what this means for her condition, I just pretty much got the results and have only read up on it myself.
They are also concerned about her weight (of course!). She is not on the charts for her age, only for HER weight for height. She looks good, but probably not compared to another child of the same age. SO the feeding tube was dropped on us again, as with Ashlee. With Jordin being sick most of her life, it is something we would have to consider if she doesn't start to jump up. We have since gotten her to start eating more throughout the day (and let me tell you, she is a piggy!) and she has been getting up in the middle of the night for an extra feeding...so hopefuly we can dodge this bullet once again :o)
Well, Jordin is about to turn 1 year old on May 6th!!! Can't believe it has gone by so fast! She is such a little honey!
I hope this catches everyone else in good health! That's all for now!

Lots to catch up on...

Well, since SO much has gone on since I last posted...this will be long winded! Hang with me!
It started out that Ashlee had a cough for months that would not go away. Continuous CF lung exacerbation untouched by oral antibiotics. After trying so many oral and inhaled meds, it came down to her needing to be admitted to Spectrum for IV antibiotics for 10-14 days. Typically called a 'tune-up' for CFers.
SO Ashlee was admitted on Feb 8th, did GREAT with her IV (only the thought of it made her cry, they numbed it and she never felt a thing!), then got a PICC placed a couple days later. This was to avoid any further poking during her stay, everything could be done right through her PICC. She did Vest and neb treatments 4 times per day while hospitalized (which was wearing her out)! She was a trooper though and made it through 10 days locked in a hospital room! She did get to take a 4 hour leave of absence to go to her Valentine party at preschool, which was quite awesome and she enjoyed every last minute! It was hard to see her go BACK!
Anyways, she was released on the 18th and has been doing GREAT ever since!
During Ashlee's stay Jordin was continually wheezing and coughing. She was put through a cycle of abx and steroids and then another cycle which did NOTHING! Might I add, she had been teething this whole time as well! Not much of a happy camper, especially all the time she had to spend at the hospital unable to climb all over!
SO, off we went to clinic AGAIN, with Jordin wheezing significantly. They did a miracle duo-neb that made Jordin sound the best in a while and said she had to be admitted right away. We were not even able to go home to get anything! Best part was that Jill just arrived home from Florida that day! So she was able to come get Ashlee and get her home to her meds and bed until Dewayne got home from school! Greatest help of all!
We waited for a room and bed to be available in the closed clinic, then walked to the hospital with the doctor. Jordin got her IV and labs done shortly after with no problems (except the typical crying from being woke up with a needle!). She was doing so great while at the hospital. She was put on IV steroids and the abx as well. We were hoping for just a few days stay with her (come to find out I was having my chain pulled all along...JUST as I thought!...and there was a standard on the abx...so from the beginning we needed to stay a min of 7 days! UGH!)
During her stay, I think Thursday, she got the flu (probably brought in by a nurse). It seemed to only bother her for the morning, then just less appetite throughout that day. Friday, I went home for a while, then the weather got bad, so I stayed home with Ashlee. Well, right in the middle of making dinner, I got so sick! I could not even get up for the lat 3 hours of the night, not even to finish the dinner :o( Ashlee had to take care of me all night! Obviously, I had the flu (to go along with what I later found out was a sinus infection I had during these 3 weeks of hospitalizations!) It took me a day or so to start feeling better from that, but my sinus infection kicked in to it's worst. Then, Dewayne came home and ended up with the flu on Sat night! So needless to say, Jill spent a couple nights at the hospital taking good care of Jordin for us! Couldn't have done it without her!
During the time that Dewayne was there, they had to replace her IV with a new one :o( (was hoping this wouldn't happen while I was gone!) He called and said they were having a hard time finding any more good veins. They told him she had a good one in her head though...and you know he wasn't having that! I was a wreck when he called and told me this (as well as just getting over the flu the night before). I was waiting for someone to call and talk to me about it when he called back and said they finally found one in her hand! YAY! She went through much torture without me there to comfort her though :o(
Anyways, all went well after that and she was scheduled to come home on Tues. When we woke up Tues, after being taken off all IV meds, she was again wheezing significantly :o( I was SO worried they would make us stay longer! We got the duo neb going again and it worked really well. The doctor wanted to know if I was really ready to go try this at home and I was FOR SURE ready to get out of there! Her asthma is something we are going to have to find a way to make better at home...she can't stayed hooked up to IV steroids the rest of her life!
Jordin was SO happy to get home and get around on the floor and do her own thing! She is VERY mobile now and gets everywhere!
We have been home for over a week now and Jordin still wheezes during her active times (which is most of the day) and has a yucky cough and hoarse voice at times, especially when crying. I broke down and called the clinic today, waiting for a response at this point...dreading it :o(
GOOD NEWS! We may be moving VERY soon!!! Picked a place and waiting on approval, but looking good! This new place will be SO much more healthier for the girls and will give us some much needed space! SOOOOO excited!
Sorry this had to be so long! I really gotta get on myself and keep up with this! lol Hope I didn't forget anything (I probably did :o))

Okay...so, I know I am slacking! Get over it! There has been a lot going on around here lately...I guess I should get you guys up to date! We just went to a clinic visit for each of them on Tuesday the 26th (Ashlee's birthday!)
Lets start with Jordin! She is now slightly over 14 lbs...good for us! (not good enough for the doctors, as always!) She is still under the 3rd percentile (not considered to be on the growth chart at all). She is now taking 30 cal/oz formula in hopes of boosting her weight. She LOVES to eat our food now! She is such a pig! lol So hopefully that will help with some weight gain. She has been really healthy lung wise lately until just a couple days ago she started getting congested and coughing a little now. She seems good after her nebs and will be starting a nasal decongestant spray soon.
She is a very wiggly little girl. Loving to crawl around and get into things and just starting to stand up by some things...won't be long before she starts walking! Yikes! She is a Mommy's girl though, and if I am nearby, I HAVE to be holding her or else she will just sit there and whine til I come get her. SO, best for me to stay in the other room! lol
Now, lets move onto Ashlee. She has been having a bit of a rough time lately with a cough. She is having a lung exacerbation from her CF. She has been on multiple antibiotics and breathing medications over the last couple months. 2 weeks ago she was put on inhaled TOBI and oral Cipro (which she hates the taste of!) and we were given 2 weeks to get rid of this cough or she would be admitted for 2 weeks of IV antibiotics. She starts with the Albuterol inhaler, then inhaled Pulmozyme (10/15 mins), then inhaled TOBI (25/30 mins). All this is done while doing her Vest for 25 minutes (morning and night). A session of Albuterol and Vest are also done in the afternoon.
Anyways...our 2 weeks is up today...BUT at clinic on Tues, they gave us another try and another 7-10 days! YAY! She has crackling in her right lower lung. She had x-rays done that day...waiting for results. Hopefully they don't see more than what is heard. They have extended her 2 weeks of Cipro to 3, and her Tobi to 28 days instead of the 2 weeks. They started her on Hypertonic Saline 7% inhaled med. This takes about another 15 minutes! Let's just say she spends ALOT of time doing treatments lately! She did this new neb once at the clinic to make sure she did not have a reaction to it, and she has done it once at home so far. I makes her cough so hard she is choking, we have to break cuz it is kickin her butt!
It is so hard to watch her go through all of this, but I just remind her that it will be MUCH worse in the hospital if we can't tackle it at home. So we gotta keep our heads up and keep pushing! She will go to the pediatrician next Friday to listen to her lungs again and decide if she has improved or if there is still crackling in there, she will be admitted for IVs. :o( Everyone, please pray that this new med works! I don't know how I will handle her in the hospital! I will be sure to keep you posted!
Good news! My baby girl is 5 years old now! She has had a wonderful week. Even the clinic gave her a monkey game for her b-day while she was there! She had birthday with mom, dad, and Jordin on Tues, then she was then birthday girl at school on Wed, and tomorrow she will have a party with her friends at Chuck E Cheese! She is so excited and so am I! Can't believe she's 5 already!