It's true.  The blog is being SLOWLY moved...

Check out where the most recent updates are at THE NEW BURGE FAMILY BLOG.

If you scroll down a bit, I was able to upload Reagan's funeral video.. it's about 20 minutes long, but worth it! 

Thanks for keeping up with us.. please follow us to the NEW blog..

The drugs, the disease, just everything...

In looking for an old email, I stumbled upon emails from when Reagan and Addy were born... I never deleted them..

I sit here in tears... I'm just not me right now.  This disease catches me at my weakest moments sometimes.. physically and mentally.

I'll be fine.. I'm just frustrated...


(Quick FYI - I ended up in the ER on Wed due to a severe reaction to Humira.  After dilaudid, phenergan, and pepsid and fluids, they discharged me and at the same time Addy was home puking and did so for 24 hours.. luckily she didn't need IV fluids, those she was VERY close.  We're both home resting at this point...)

Thought you'd all enjoy a picture of our little lucky charm!   We are so very fortunate to have this little girl.  Throughout everything, she continues to bring us MUCH joy!

19.5 months, man she's growing up TOO fast!  (And, we're letting her bangs grow out.  She's pretty darn good at keeping bows in her hair, but when she gets to playing, sometimes it falls out.  It's still curly in the back and straight as can be everywhere else, and ULTRA-fine).

Just some rapid updates so no one worries...

1) Addy is MUCH better.  We bought the nebulizer and I'm glad with all the weather flucations we've needed it.

2) My Humira FINALLY arrived after a 3-week battle with insurance and pharmacy (that is an ENTIRE post in and of itself).  I did 4 pens yesterday and 2 the 2nd part of the loading dose in 2 weeks.  I should know in about 30 days if this is going to work.

3) They switched me from Lexapro to Celexa back around September and now I'm moving to Zoloft.  I basically and having meltdowns over stupid stuff.  I can't focus and I get upset when anything is out of order. Which right now is tough because I have had to let a LOT of stuff go with all my medical issues since July.

4) Charley had kidney stones and is better, if I forgot to mention that.  Urologist says everything looks great.

5) I'm busy busy BUSY with the state youth tournament here in Evansville (of course so are MANY other volunteers, so if you are reading, a shout out and thank you!).  But, it's wearing me down fast.  I can only do 1 day of 2. 

6) I'm having difficulty sleeping.  I just saw my doc, but I'm going to have to call.  I may need to do sleeping pills for a few days to get my system realigned.  No idea..of course being up at all hours of the day last week with RSV...well, THAT might be why it's now midnight and I can't sleep.

7) I have many cake orders this month!  4 at least and maybe a 5th.  That's relaxing to me....

Off to bed...will update with photos and such soon.. promise.  We need to go decorate Reagan's grave for Easter.  Plus, we need to get photos of Addy and in addition, we're working on getting a fence as word has it Addy might be getting something fun to play with outside this summer (for her birthday of course!)!  Not only that, Miss Addy LOVES to play outside... I mean LOVES it!  She's a wild thing and just having free reign thrills here.  So, even if it was just the grass between her toes... and a fence to yield her in, she'd be content!

It happened.  The dreaded RSV.  To most toddlers and infants, it's not horrible, but with a preemie who has immature lungs?  A nightmare. 

The good news - We caught it quickly.  Her oxygen levels appear to be normal.  She's pretty active, but has her moments.  She's 19 months and not 7 months like she would of been this time last year.  She received several months of Synagis LAST year, which obviously probably helped her.  Clayton, Addy's cousin & BFF, though we thought for SURE they had the same thing, is RSV FREE!  (We think this is because Clayton is 2.5 months older and also obviously has a stronger immune system then Addy.)

The not-so-good news - She's on a nebulizer, which we just flat out purchased as RSV can last a week to 2 or 3 weeks.  It's a nasty viral bug.  Addy has to be quarantined for 5-7 days away from kiddos that is.  This bug to adults is just a cold, but to kids, it's ugly, especially infant and toddlers. 

The bad news - Mommy is a nervous wreck.  I'm completely worried sick she's going to end up in the hospital.   So, please pray we are going to just ride this out at home.  Sick kiddos are no fun, but with something like RSV?  It's awful...


A little more of a detailed update about all this....

Last week, my parents were on vacation, so my sister-in-law (SIL) and I were helping each other with babysitting so we could both manage work and childcare.  Everything worked out great.  I had the kids Tuesday & Friday and SIL had them Wednesday & Thursday.  They had a blast together and on Thursday it warmed up enough that they were outside playing with side-walk chalk and running around.  Addy was plain FILTHY!  If I back up a bit though, on Wednesday, when I dropped Addy off, my 2 nephews were coughing, runny nose, and one had a fever.  Nothing major, and they are ALWAYS around each other, so I figured it'd be ok.  Because, honestly, they are TERRIBLE about sharing binkies, sippy cups, etc.  You'd think they were actually brother & sister, and we've been asked in public if they are twins (which is a bit of a sore spot, but then allows me to talk about Reagan, so it sometimes feels ok).  SO, yeah right on keeping them away from each other!  Addy accompianed them to the doctors office on Wed, which turned out to help because on Friday, when I had them, Addy started coughing, so since they have the same doc, I just called up the nurse and she called in an antibiotic and put her on motrin and pedicare cough.  Good deal, or so I thought.  Clayton started running a VERY high fever on Friday, so he was clingy and sat on my lap and I kept giving him tylenol, but Addy was up and running so I didn't worry much.

The weekend just got worse, day by day.  Saturday was ok.  I was giving her round the clock motrin & pediacare and we had to venture to the bowling alley, but she was a very good girl and we were mainly around adults (THANK GOD! I'd feel AWFUL if she were around kids!).  She played and got spoiled.  We left and she was not feeling well at all, so I ran into Wal-mart with her to get some more pedialyte and search for some foods she might eat.  We tried mac & cheese and a pedialyte popsicle for dinner, but she didn't eat much.  She did however ABSOLUTELY love that I bought her some new Disney Princess PJs that she picked out.  Yes, she pulled the right size and all off the wrack as I was trying to find pedialyte.  It's cute though...long sleeve PJ dress...comfy and with the up and down temp, she was VERY comfy Saturday night... 

Sunday?  was just worse.  Cough worse, more mucous, more fussiness, hotter/more feverish, etc.  I called my SIL.  We conferred.  At around 8pm, I questioned taking her to the ER, but then thought about convenient care/urgent care.  But, called the urgent care, and they did not do the RSV test, so I found it a bit pointless when I knew my doc would send us down to the hospital for everything the next day.  So, my SIL and I set a game plan.  She'd call at 7:30 to get us an ASAP appt.  Worked great, except Addy woke up screaming at around 2am and I just fell asleep at around 1:30am.  and then I couldn't get back to sleep until 4:30am and she woke me up with a phone call at 8:11am for an appt at 8:45am.  We were bringing them in together.  I woke Charley up and he got her dressed and I got a fast shower and threw some clothe son.  When we got there, they actually had one doc with Addy and one doc with Clayton.  Worked out well.  We stuck around because they ordered a chest x-ray for Addy & a CBC/blood count and RSV test for both.  They swabbed both for flu, but both were negative.  As soon as the doc put her stethoscope on her back, she went.. "OMG, she's wheezing and very gurgly!"  My heart sank.  Especially when the flu test came back negative.  Call it mommy instinct, but I knew.. I KNEW what it was going to be... RSV.

So, SIL & I headed to the hospital to support each other, though I think she held me up more then I did her.  My mom (who is a mother to my SIL too) is stuck out of the country right now because of the ice storm that hit the south, so the earliest flight out is Wednesday, when they were supposed to be back yesterday.  So, SIL & I decided to do this together... good thing too because Addy was a basketcase after I had to help put her into the toddler torture device of an x-ray system.  Dear GOD!  I hope I N.E.V.E.R. E.V.E.R. E.V.E.R have to do that again!  It looked like something straight out of silence of the lambs.  She sat on this bicycle seat through a small hole and then the plastic shielf forced her arms straight up (as if she were reaching to the sky) and then they locked the contraption around her.  I had to help pull her legs through and it took all 3 of us forcing her.  She's VERY strong girl.  Tears were just streaming down her cheeks and all I could do was hold her hands and sing to her, but at this point, she was so mad, and coughing harder and almost dry heaving (I've about got tears in my eyes thinking about it again).  This was the worst of it and they gave her Cat & the Hat and she carried him into the waiting room where "Aunt T" and Bubbi (Clayton) were.  She immediately went to Aunt T and started to calm down.  We got them settled and headed back to lab.  Luckily, we went to lab first, and they put numbing medicine on their arms.  So, when we went back, the blood draw wasn't terrible.  Addy's was NOT great because she moved and it took 3 of us holding her down and Aunt T feeding her cheerios to get through it.  They BARELY had enough and we had to wait in case it clotted, we lucked out and she was fine though.  Clayton handled his blood draw like a champ.  And, they both got the RSV suction test, which was NOT fun, but they did pretty well with it.  And, then they gave them both a pengiun and the cutest them was to see them all completely tired with bags under their eyes, their coats on, binkies in their mouths, and they are waddling down the hallway with their penguins.  They loved them!  Actually I'm laying with Addy & she's got her penguin right next to her.  I'll have to get some photos up again soon..

So, we headed to go get Addy a nebulizer, and the kids fell asleep, so it allowed me to wait for the machine and not have to come back later to get it.  Then we swung by and grabbed us drinks & lunch and then went to McDonalds and got the kids their favorite lunch because neither of them had eaten or drank much at all in the past several days... so we got their faves.. and they ate pretty good.  We just wanted them to eat something at this point.

About an hour after that, Tera got a call... Clayton was clear of RSV, but Addy had it.  They told her because they want them apart for 5-7 days...uhm yeah, damn near impossible...

So, it's now 10:20pm, and I'm wiped.. Addy is coughing horribly...to the point she will throw up... so we are having to be careful about when we give her antibiotic (she's on a z-pac now) and were trying to flush her with Pedialyte, but EVERY STINKING place I know that sells APPLE pedialyte is SOLD OUT right now and it's pretty much the only want she cares for.  So, I bought bubblegum because it's the ONLY flavor I haven't tried yet.  She hates the popsicles and just about every other flavor.. but with the puke and now the diarrhea (thanks antibiotics!) and the lack of eating and drinking, we're offering as much pedialyte as we can, but she's just picky I guess.  Ee did manage to sneak a breathing treatment in while she slept....she just cries in her sleep... I just don't know how I'm going to leave her with daddy and go to work tomorrow... I know she'll be ok... but I just feel so bad for her...  And, I'm scared to death this is going to get out of conrol and send her to the hospital.

So, unfortunately, the one thing we tried SO VERY HARD to keep her from getting....she got... 19 months later.  I guess I'm glad she got it now and not earlier, but man.. this ugly viral bug is no fun at ANY age.... 

Forgive typos..I'm beat and I'm not checking for typos right now...

What a week..short update and will fill in the details later!

Had my appointment in St. Louis - It went well.  We are going to try Humira first, then Cimzia, then Tsyabri, then surgery.  I'll explain the reasoning why later.

Charley was in the ER on Wednesday, suspected kidney stones, again.  He's still in pain and having pressure and hoping to get into his urologist soon to see what's up.

I caught Stomach flu Round #2 (from Miss Addy).  I was up puking the same night he was in the ER.  Luckily, my dad went with Charley to the ER and then picked up Addy when he dropped Charley off.

I made another cake (don't ask how I had the time, even I don't know).  I'll post pics later.

Busy busy busy!  State Tournament in Evansville Starts TOMORROW!  Have much to do..

Hope to get you some more updated info by Sunday....about my Crohn's, about the cake, etc...

Gotta love HEART day!   Especially when it involves cute pigtails and a shirt that says "You make me blush" with a pink giraffe on it.  Despite being so icky yesterday, she's started to eat and drink more, but has only been wet just a little twice today.  But, she's up and playing and Daddy is now home and running to get her more pedialyte soon.  Hopefully once we rebuild some electrolytes in her, she'll be good to go. 

(Ignore the awful mess and I don't know how the shot of the tv in the background just so "Happenedly" caught a BRA commerical! - But, the mess is primarily bags of stuff for my nephews birthday cake and since Addy's been sick and clingy, I haven't had a chance to pick much up)







So, Miss Addy, all in all, had a good V-day!  Daddy gave her her gift on Thursday (besides the balloon yesterday).  And, Aunt T & Uncle Stevie gave her her gift today and so did Mama & Papa. 

Daddy gave her the most adorable "Princess" Charm bracelet.  It looks like it'll fit her too!  So, we'll have to try it on soon. 



Aunt T & Uncle Stevie & Trenton & Clayton got her a Princess Wand and also a Monster Truck.  Yes, I said a Monster Truck.  She's always stealing Clayton's trucks at work when they are playing together and I thought it was kind of funny.  And, to be honest, she's played FAR more with the truck tonight then the wand.  Go figure eh?  Got myself a tomboy!



And, MaMa & Pape (Addy is referring to Papa as Pape or Poppy now...just started doing that a couple days ago) got her the V-Day TY teddy bear.  She loves those.  Carries them around the house and puts them on her shoulder and pats their back.  That's her little baby!

And, Sweet Reagan.  Never forgotten. It was a nice day, but the wind was brutally cold!  A far cry from Thursday's great weather!  But, we stocked up there and cleaned off the Christmas decor and put some red & white roses in her vase with some v-day sprays and a balloon.  Daddy got her an orange butterfly.  And, I found some cute garland to wrap around one of her shepherd's hooks.  Oh, and Mama & Papa got her a TY bear just like the other 3 grandkiddos got. 

Yup, Addy has the stomach flu for the 2nd time this winter season. Poor thing is having a rough go at it. She threw up her entire breakfast this morning and got down to throwing up phelgm. She's completely depleted and refusing everything. I've gotten about 10oz of Pedialyte in her and a little bit of applesauce (she loves cinnamon, so I got cinnamon applesauce). She went to bed at 6:15...poor girl   Then got up because she was obviously hurting again at which point she threw up pedialyte.

We've only had 2 diaper changes today.. 1 wet, 1 dirty.  I'm hoping by tomorrow morning after a good night's rest that she'll eat some plain waffles or cinnamon toast and drink a good chunk of juice or pedialyte. I even made sure to get her the apple flavor this time. I usually buy the off-brand, but after I watched her literally gag and puke up everything and refuse sprite, I bought all I could of her favorite flavor. She usually will drink the grape or fruit punch...but loves the apple the most..

She's now sleeping on me all bundled up. We've been through I don't know how many outfits today.. for puke and her spitting her motrin out. I'm almost forcing that in her. She was hurting so bad today.. literally laying her head on a pillow and crying. We talked to one of our coworkers who's granddaughter had the stomach flu a few weeks back and she complained of a headache, so since Addy was a little warm, we've been rotating motrin and tylenol to give her some comfort...

And, Daddy is gone until late tomorrow   She cried so hard when he left... He did bring her a big singing balloon from the store for V-Day..

*sigh*  Sick babies are just no fun!

Well, if you are around southern Indiana, you'd know how funny our weather has been!  First, a severe ice/snow storm that left us powerless and below zero temperatures.  Then, a few weeks later, 70 and sunny! 

Well, it wasn't 70, but with a sweater on and in the sun, it was probably in the upper 50s and beautiful!  Addy was a ball of energy, so we took her 4-wheeler out that Charley's mom & stepdad got her for Christmas because the car she got from my parents is at work since she has room to ride it there.  Anyway, she loved it!  But, we have a lot of neighborhood dogs and everytime she'd hear or see one, she'd hop off her 4-wheeler and start running down the sidewalk after them!  One of our neighbors came by and she got a big ol' slimey kiss from one of the BIG "puppy"s. 

Here's a few fun photos!

So, Addy loves books, but her new favorite book?  The Vera Bradley Catalog.  She opens it and points at all the ladies and oohs and aahs over it.  She has a little Vera Bradley cosmetic bag that she uses as a purse, but now they have an "Audrey" mini purse for little girls.  I see that might be an Easter Bunny present!   She's such a little girly girl!