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!

I know...it's been a while!

We've been real busy here! Lets start with some excellent news! Ashlee has FINALLY made it to the 50th percentile for weight! It took 4 1/2 years...but she made it! She is now pushing 33 pounds! Not sure how, cuz she doesn't eat hardly anything! But somehow...she has made the doctors happy! Since we're talking about Ashlee I will tell you they have diagnosed her with a 'mild pulmonary exacerbation'. She has had a cough for a couple months on and off, that's all this means. She was put on antibiotic the other day at the clinic. Hopefully we can get her back to normal with no cough. Hopefully her culture comes back clean too. Other than that, Ashlee is doing great and loving school! She just missed her first day cuz she was coming down with a cold...hopefully it passes her easily! Dad had it, then Jordin, now Ashlee...I hate to think where that puts me!
Jordin is such a cutie pie! She has been doing well also. We had an incident where she started getting hives for a few days. We had an appt at the clinic so we waited til the next day to have them looked at,of course, by then they were going away (a good thing)...so we still don't know what she came in contact with that she was allergic to. Despite our carefulness and cleanliness, at that appt she cultured a bacteria called pseudomonas, which is found pretty much everywhere. (I later read on the CF website forum that the bacteria could have triggered the hives...not sure but possibly) So she was put on an antibiotic and a new nebulizer called TOBI. Which brought us to 13, yes...13, medications! Our house looks like a pharmacy!

We just had another clinic appt on Tuesday and she weighed 11 pounds! YAY!! Well, for me! LOL The docs of course are not happy enough with that! Oh well...give me 4 more years! She is in the 3rd percentile right now and has been steadily. She still eats great, much better thatn Ashlee ever has! She has been gaining about 1 pound each month. She also added one more medication for reflux. She is already taking Zantac for it, but now...to try to help more with stomach acid for maximum food absorbtion we are going to use Prevacid 1 time and Zantac 1 time each day. I hope someday soon we can cut BACK on some meds!
She still gets up usually just once per night...thinks it's morning around 6:30-7...She pushes herself up in her bassinet until her head is protruding out the top (well it of course stops...I have a better pic of it, this one doesn't show as well) then goes to sleep. She's a hunny! We love her! She is full of smiles, as long as Mom is home. (well, she's getting better with Dad now too...now we're working on Grandma Jill! She likes to scream out of control when she is not with someone she is used to when I or Dad are not around!)
Well, that's all for now...next time I will try not to stay away so long! Hope I didn't forget anything important!

Thriving and gaining!

Hi everyone!
Jordin is doing great at home! She had a weight check just the other day and is a whopping 8lbs 13.5 oz and thriving! She is such a hungry little girl and she sure knows how to tell us! She is also very spoiled and like to be held and attended to at all times! (We love it since we have missed so much time! Yet we do need to get some other things done too, and she is a fussy one when it comes to her getting the attention!)
I have started back at work this week and will be working part-time. Mon/Wed/Fri type of deal. It has been okay this week so far. I think Jordin knows and is not the fondest of the whole situation, but will get used to it. This week I just did half days, next week I will be full days on Mon and Wed. She doesn't go to sleep for Daddy while I am gone as she usually would so hopefully that will change so that Dewayne can get a few things accomplished while I am at work! She just likes to give him a hard time! :) I don't blame her!
I came down with sickness Sunday night, so I am still crossing my fingers that nobody else in the house gets sick!
Well, just wanted to let everyone know how well she is doing and post some pics! (If you can't tell, Ashlee loves her sister to death and just can't keep her hands off of her! She's just gotta be in every pic! :) )

Home, sweet, home...

Jordin has finally made it home! We got her home on Sat night. They said on Friday that they were talking discharge, then the docs did their rounds and seen she lost 1oz over the night. Then they decided they wanted to watch her over the weekend. I disagreed! I made sure she came home Saturday! And she is doing GREAT! She is so comfy at home with her family. We are so happy to have her home. She is alot of work, her meds/feedings/treatments/diapers sure fill up our schedule!
She's so adorable though! I don't think she can find more comfy places anywhere but home!

Want to hear the words...

Jordin has been doing very well! She has worked her way up to full feedings and will be able to get her broviac out of her chest soon! She gets to eat on demand every 2-4 hours. She has tried breastfeeding a couple times, but prefers the bottle cuz it comes out alot faster and she is a piggy! Hopefully the doctors order for that to happen today...we'll see.
Her jaundice may be taking it's time to get better but they did an ultrasound on her liver and have ruled anything bad out there. That was relieving! They said this should not hold her discharge date back any. We had a meeting with the doc on Friday and he said 1-2 more weeks. If everything keeps going as well as it has been the past couple days I am hoping to hear the words 'discharge' or 'home' by the end of this week! Not keeping my hopes up though. Don't want to be disappointed when it is not.
Her cough is still there, just seems to be getting better. I guess we just continue treatments as far as the lungs go.
She is very happy and content though! She likes to be held and cuddled, so she gets much attention there. :) Wish I could do it more! Very soon, very soon... Can't wait!

Happy little girl!

Jordin has been such a happy girl lately! She is eating real well. She is now up to 38ML every 4 hours, she needs to get to 90ML. They are giving her 4 more every 12 hours until she can't handle it anymore. I fed her last night and she seemed to lose interest toward the end already, about the last 5mls were a struggle to get her to take. She did take it a few minutes later. Hopefully she continues to eat more and it doesn't bother her. If she does well they said it would be about 9 days til full feeding. At that point they will be able to take her broviac IV out of her chest.
She still has a cough but her cultures did not grow anything so they are holding off on any antibiotics. She is getting the nebs and chest pt still. I guess they are just hoping she fights whatever it is off.
She is very happy though and smiling all the time! I think she likes to be on her belly too. She looked so comfy one day when I showed up.