Too Much to Handle

Let me start out on a super good note to get you settled for this long blog I am about to spill out. Dewayne and I will be GETTING MARRIED on August 27th, 2011! FINALLY :o) SOOOO Excited!!!
Now, back to reality...lol I will start off with our clinic visit April 27th. Good: Ashlee gained weight and is now darn near 40 pounds and in the 50.9% for BMI!!! RIGHT where they want her! And she has been eating really good lately! Hopefully we can see another big gain next visit!!!! Everything was good for her, only thing was that she started coughing out of nowhere a couple nights before clinic. They said if she was still coughing same time next week to call and they would start an abx.
Jordin on the other hand, lost weight again. She was 20 pounds, 9 oz :o( Little peanut <3 Love her <3 She is trying so hard! She got car sick on the way to clinic that morning :o( Yuck! Anyways, they started her on Bactrim (mind you this is abx number 7 since Sept) and are waiting to see what the ENT has to say. Thinking sinus surgery is in sight. Treatmens to 4 times per day :o/ That's rough :o( So, that was that. We just got her Peptamen Jr 1.5 which is what we will be switching her to during the day through her tube. That stuff is $11 per can! It's over $1000 per month! And that doesn't include her night feed supplement! Anyways, the doc and nutritionist is hoping she will not be puking this up at all. She has been having some more issues with food sight, usually while on her tube or just after. She will starts gagging and or puke :o( We were at Bob Evans the other day for brunch and she was in the middle of a feeding. As soon as the food was all being placed on the table, she started gagging and ended up puking all over the floor and her seat and self :o( Ugh. That sucked...don't think I will take her out to eat any time soon! She has done a couple similar things at home too...usually not the formula coming up though. Mostly whatever she has eaten/drank, so maybe the formula is good...I am wondering if being taken off the Pariactin a few weeks ago has anyting to do with that. SO I have started her back on that to see if it is helping w/ her visual issues and puking. She did it twice just today. Oh, and he said if this did not help her puking, then he was going to refer us back to the surgeon to redo her fundo surgery. I am not with him there. I do not want her fundo redone. I am sticking firm with that. Obviously, she can puke for a reason! I am not going to sit and watch her heave. It is not going to stop her from having to puke. They are trying to cover things up instead of fix them! I am not happy with them. I would, and I think the surgeon may agree with me cuz he had mentioned it, move on next to the gj tube before doing anything more about her fundo.
Jordin had her ENT appt on the 29th. It was supposed to be the week before but the doc was sick and our appt got cancelled! She also got car sick on the way to this appt! They checked her out, and put a scope/camera into her nasal passage :o( She hated it :o( Ugh...makes me cry. They held her head on my chest so hard that my chest was briused the next day! She was fine after :o) It is just hard to see them deal with all this stuff non stop :o( The doc said she DIDN'T have ANY polyps!!! AND her adenoids we small to medium sized and not enlarged! She is now scheduled to have a CT scan of her sinues (well, we're waiting on an appt date), then we will go back to see the ENT again to discuss the results of that. Could be 3-4 weeks before we get through that. Oh and he agreed that it would be ideal if we could do sinus rinses on her, but she will not allow it and screams and cries and could end up aspirating it into her lungs and it is not worth the risk.
I called the clinic today to find out about the girls' cultures. They called back and told me that Jordin cultured staph and psuedomonas, and Ashlee cultured psuedomonas! Also that they were not going to treat them differently right now! Nothing more for Ashlee (her first psuedo culture!) and Jordin is already on an abx...not sure if it is for psuedo though, but this is her 4th time culturing it :o( I ain't a doctor, but I KNOW they should both be on TOBI right now! I am SO mad at the clinic! What are they thinking??! Jordin needs to run it every other month. She has been non stop sick and it probably has something to do with it! And for Ashlee they should be trying to eradicate it right away by treating it aggressively! DUH! Not really sure what our doctors are for anymore. I can't wait til we go to Ann Arbor May 20th! It can't come soon enough! I am going to be calling the clinic in the morning and they will be treating this psuedomonas for both of them! Sucks, I hate the thought of adding Tobi (1/2 hour to each morning and night treatments for each kid!)...but they need it!
I think that our clinic is in too deep and they can't handle everything. Jordin needs an appt to be seen back in 4 weeks, Ashlee not til July...BUT they have NO appts in either month!!! How can they not have any appts open in July!?!?! They have to make appts and call us! EVERY time! This happens at EVERY appt! It is so dumb. They have no time to see them if they are sick. I have had enough of that.
Oh AND Jordin will be 2 this week!!!! (Dewayne 39!) lol I can't believe she is getting so old!!! My baby girl is growing up! She is so funny though :o) And she says alot of stuff!!! It is so cute!
Well, I think I included most everything. If I forgot anything I will add it later. Til next time....

Back pack, Back pack :o) lol

Can you see we've had some nice days and have gotten some outside time lately!!! Didn't last too long, but at least we got to play a little! That's her in her little backpack!

BACK TO REALITY! lol Well, it never fails lately...Jordin is on her SIXTH!, yes, 6th antibiotic since November. It was her sinuses yet again, which in turn is causing a nasty cough to go along with it :o/ She is on another 3 week course. We are about 13 or so days in right now, so not much longer...She is doing well, but it always goes this way...a week after abx ends, we are back to square one. Her cough is not the greatest though. She has been doing really good with all her nose drops and sprays too :o) She is a pro! Still looking for the one that disappeared...good thing for refills! lol I have a feeling it went down the toilet first! Which brings me to tell you what Jordin did last week!

She flushed our bath tub plug down the toilet! It costed us enough for them to come get it out too! lol It was quite funny though, regardless of the cost :o) haha
I got our pediatrician to refer her to an Ear, Nose, and Throat doctor. We see them on the 22nd...next Friday! Hopefully we will get some answers about her nose there. She can't keep being on these abx ALL the time, year round. It's getting really old.
Oh, and she has started using her new feeding backpack! She is doing REALLY well with it! We had some puking episodes the week before she was put back on abx, but nothing since I switched her formula during the day. I asked them 2 weeks ago if we could switch to the Peptamen during the day (since we were already using it at night and she seems to tolerate it better). It took them 2 weeks to decide to switch it! I had already switched is since we had extras and I was able. Just waiting for them to adjust our WIC. Turns out we will actually be switching to the Peptamen 1.5 during the day...BUT anyways, she just wears her backpack like another peice of clothing 2 times per day for 2 hours each time. She's such a cutie :o)
I ALSO got the pediatrician to get us an urgent appt for a second opinion over in Ann Arbor! OMG! We go on May 20th! I can't believe it! Going to have to make sure I am extra prepared for this one! (we go to our clinic for both girls on the 27th of April...so the week following Jordin's ENT appt.) Hoping things at the new clinic go well. Will be kinda weird though, going to see new docs. Hope we like them! Sucks it is 2.5 hours away though.

Ashlee has been doing VERY well...hoping she gains back her 2 or more pounds by the time we go to clinic on the 27th!!!! She is finally going to school without a scene again as well! Lots of school field trips coming up! Hopefully she can stay healthy through them all! Greenhouse, Zoo, and the Pool! She just got done going to the butterfly gardens w/ all her Girl Scout buddies!


Just wanted to update you with some of whats been going on here. Hopefully I didn't miss any important tidbits...

Life as we Know it.

Hello :o) Hopefully I can keep this kinda short and sweet, but I know it might get long. ALOT has happened since my last post.
We tried Jordin's newest Nasonex nose spray, hoping to clear up some of her congestion. No such luck. We went to the neurodevelepmental doc (pictured below) last week, then the GI doc shortly after!
Visited the Children's Museum in between :o) SOO much fun!
Anyways, nothing the neuro doc said really had any impact on what was going to happen. Seeing as how we are seeing her for the puking issues and we were just about to have our fist consult w/ GI hours after that. She mentioned a couple different formulas we could switch her to and another med we could try and also made note of a gj tube recommendation.
At our GI appt, we talked about possible causes, and the doc was mostly stumped as I have been! lol He ocnsidered the med the other doc had recommended, but was hesitant. We agreed to start w/ getting her a back pack and running her feeding pump 3 times a day for an hour, in place of the bolus feeds she gets right now. This was a week and a half ago and I still have yet to recieve the backpack! The nurses never were told to order it...I ended up ordering it myself on Fri last week (did not know I could do that else I would have to begin with!). Still have yet to see it though. I guess I will call Airway and see tomorrow again.
We also considered her sinuses playing a huge role in all this. (Oh, I forgot to mention, Jordin went ALL of Feb without puking, then started back up in March again?? wierd...now its been over a week since she's puked again, except last night when she got mad about going to bed) SO we had to start another abx :o( Grrr...She has done well on it though, BUT it hasn't done anything good really. I took her to the pediatrician on Wed morning. She says it doesn't look infected, but there's def lots of snot and boogers, every day :o( She doesn't even want her nose touched anymore. She used to let us wipe it or clean it out no problem. But we have overdone it w/ so much problems every day, now she hates it. We started her on Claritin to see if it helps any, and she got bloodwork done today to screen for any resp allergies. Will know soon if she will be referred to an allergist or and ENT. The clinic wanted me to do sinus rinses on her! LOL I tried one night, got 50 ml through her nose. Next night, one squirt and NO more! She will not allow it anymore :o( Poor kid.

NOW, for Ashlee...she started w/ a high fever last Wed, and it lasted until Sunday! I noticed on like Fri or something that her eye was red. Didn't really think anything cuz figured she was getting a bad cold or something. Realized Sunday that it was pinkeye!
Called the ped on Monday and they said to just call if it got worse. It never had much stuff come out of it, mostly was just red/pink and watery. She said it hurt a little but not itchy. It seems to be all better now :o) She sounds junky though and has a runny nose still. Her nebby tonight was making her cough which only happens when she's sick. And she missed another week of school :o( She has missed 8+ days already (she only goes part time to begin with!) She missed a storybook parade the kindergarteners were putting on. I didn't even tell her! I am not sure she even knows now :o/ lol

I am personally finishing up and abx for my own sinus infection! I got this same crap last year and couldn't get rid of the sinus infection! I think it is the same this year! I seem to still have the post nasal drip in the back of my throat :o( Grrrrrr.........I have NEVER had any kind of allergy or sinus problem! Oh forgot to tell everyone, some prob know, but we got a new van! A new used van of couse, but I love it! It is a Pontiac Montana! Seats 8! It is super nice and we got a great deal on it! Had to let go of our Grand Prix. I am going to stop here cuz I have spent way too much time here! lol I need to hook up Jordin's tube yet and get to bed! I will update again soon w/ anything I may have missed!

Oh! One last thing! I got Jordin her own Vest machine and a new pink full vest!! Lovin' it!!!!! Yay!!!!! Alright, see ya'll later!

Clinic Update!

Well, both girls did WONDERFUL at clinic today! Both had blood draws...was quite the scene I tell ya :o) haha We got redirected through the hospital cuz the place we normally get labs done at was having issues w/ someone, so nobody was avail to do the kids labs. So, they got us in and we made it to our appt 15 minutes late. And of course, Jordin can't be away from me and Ashlee wants me to hold her for her draw too...so it was funny. lol Total time for blood and appts today was around 3.5 hours (not including the drive) :o/ Fun. That place is so stressful w/ 2 kids in a little room for 2+ hours! At least we have good news in the end of it! Ashlee was perfect, even gained another pound! She's 43.4% BMI! I still say it's gotta be the Mountain Dew she has been drinking! lol I can't think of anything else that would be making a difference. That's 2 pounds in the last month and a half! AND in the midst of being sick!
Jordin still has SO much snot in her nose each day. They were going to slap her on another round of abx, but we talkked about it and decided to hold off for a minute. We are going to add another nasal spray and see if it helps. Otherwise I guess we'll be starting abx AGAIN. Hopefully not though. Of course, they don't say much about her puke(and she is back to puking again the last 3 days)...but I did get him to talk a little about it and he thinks they will prob look at trying continuous feeds. We go to GI next week! FINALLY! Oh, and she is 21.9% BMI.
But, needless to say, the doc was SO excited that they were doing so well after such a bad bout the last 2 months! YAY!
THEN we got home to find we're locked out :o( I lost my key and Dewayne had thought I got new ones made, so he locked the door when he left! Jordin was sleeping, so Ashlee and I just hung out and read some stuff for over a half hour. After Joridn woke up I got them out to play (Jordin don't really like the cold though). Then Ashlee had been at the neighbors telling them we were locked out. He came and broke in for us ;o) Good to know it was so easy! NOW I gotta make that not so easy! OMG!

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)