The 'not so great' news...then the 'great' news.

Well, as most of you know already, Ashlee was diagnosed w/ pneumonia as well last Tuesday. So she started abx and steroids too. She has been having a hard time w/ treatments (coughing and puking up mucous for about 1/2 hour straight) and still coughing all day long. She has missed the whole week of school :o( Hoping to just bring her in for her Valentine party on Monday w/ a mask on. There are 6 kids out sick in her class so the teacher says she is scared for her to come to school even if she does improve! OMG! How do I know when it's safe again?!?! Anyways, she had x-ray and labs done on Thurs to check for mono and check her lungs (Later I will tell you why the mono). Her lungs were junky, but no more pneumonia and bloodwork was neg and looked fine :o) So, we are just waiting for her to improve, I guess...if she doesn't improve by Monday they will swab her for Pertussis (Whooping cough)...unlikely...but who knows anymore in this house! So that's Ashlee...about where we were last year at this time except she was in the hospital right now last year! Jordin has been sick nonstop lately :o( Wed night I came home from work to find her not feeling well and spiking a fever. I called the ped on call (happened to be ours :o)) and she said to take her to ER in GR! Planning on admission :o( We got admitted finally aournd 2am. She had spiked fever of 103.5 while in ER still. Every day since she has been still getting a fever. They have run many tests, poked her poor little arm too many times and dug around a couple times. Also did a urine catheter in ER to get urine. Her liver enzymes were elevated and white blood cells we low. They have been waiting for all that to get back to normal...have been running IV abx...done all kinds of cultures and tests and everything comes back neg. Was leaning towards Mono, but that is now neg too :o) NOW I am sick so she is at the hospital w/ Grandma taking care of her. Couldn't do this all without her <3 They figure it is a virus. Supposedly she is still 99. something today temp...the doc said she cultured some Psuedomonas conlonies, BUT they are switching her to inhaled Tobi and oral Cipro and SENDING HER HOME TOMORROW! That plan sounds AWESOME, but I am concerned about stopping the IV meds when she is growing Pseudo?? Can't wait to get her home, but I hope it is not going to bite us in the ass down the road. I assume we should be on every other month Tobi now cuz this is her third time culturing Psuedo :o( The ONE plus here..was that we were in the brand NEW children's hospital!!! VERY nice :o) Update on my grandmas...My grandma Cherie is home now doing well and my grandma Sullivan is still in the hospital and not able to talk understandably or understand what is going on :o( Please pray she improves <3 Possible small strokes? Waiting on more test results.

Pneumonia :o(

Well, I'll start by saying...things kinda suck around here right about now :o/ Not the best of weeks.

(They only 'look' sweet and innocent! lol Just kidding! They ARE sweet 'most' of the time!)

I'll start with Ashlee. She has had a cough for over 2 weeks. Saw the ped at 2 weeks and she said she sounded good, so she would give her another week to knock it out herself. Well, she is not imroving, so I assume she will be on abx soon. She is on increased treatments already of course. She had a low fever the other night, but nothing else the next day. Otherwise doing well and only missed 1 day of school for this (except the snow day they had). I think that is her 2nd absence so far this year. Doing good :o)

She did turn 6!!! That's GREAT news! She's getting so old! lmao

Now Jordin...this may take a while! lol Jordin started w/ dirrhea last Saturday :o( Then come Monday night, she started puking...puked many times. Every time she would start to fall asleep she would start puking again :o( Low grade fever for the next few days. Tuesday and Wed she layed on the floor w/ a pillow ALL day long. Sleeping on and off, laying and eating a few bites of food here and there and also drinking water. Wed afternoon I got some Pedialyte. Started bolusing that. By 10pm she was sitting up, snacking a little still. Took her to the ped on Thursday cuz she was still having diarrhea and her cough had increased more :o/ She was satting O2 at 93% so the doc gave us a treatment to give her, then she was up to 97. BUT her lung was sounding junky. X-ray. Pneumonia :o( New oral abx and steroids. Man I got a video of Jordin taking her steroids like a champ and I (stupid me) accidentally deleted it! SO mad at myself! Hopefully I can get her to do it again tomorrow! lol Hoping for improvement by Monday. Still a bad cough and she is REALLY cranky and irritable. (See Below hahaha)
Not like Jordin to be this way? Oh yeah, still diarrhea...had to collect a sample (OMG what a job! I will spare you the details...just know it sucked! lol) Finally got a sample Fri night, dropped it off Sat morning at the lab. Testing for C-Diff :o/ Please pray it is NEGATIVE! I am sure I will hear tomorrow. I am so nervous. Pray for neg results PLEASE! <3

She tries to help out when she can :o)

Me? Oh, well...I think I am a wreck. I try to put on this happy face and make everyone think I am grand...but really I just want to cry. Both kids are sick...same shit same time as last year! Well, Jordin's been on 3 abx since like Oct I think. 1 after another. I have to know in the back of my mind that an admission is soon approaching :o( I just don't know how I will handle it? Hopefully we can stay out, but I am trying to prepare myself for the possibility.
Another thing that is killing me inside right now is my Grandma. I always call her. We talk for hours on end. I do nebs, vests, feedings, whatever while I am on the phone with her. She means so much to me. I called her the other night (I had just talked to her a few nights prior) and my aunt told me she can't even get out of bed by heself anymore. She can't hold a conversation with me anymore. Wasn't sure if she would even say anything to me. She did say a few words, I told her I loved her and she told me the same and that was our phone call. 1 minute. maybe not even that long. My aunt was holding the phone for her :o( She is old. And unhealthy. I know her time is coming...I just don't want it to. I can't take all this right now. It's killin' me.

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!