The Burge Family

Can a girl catch a break?

Kaycie and Charley — Tue, 02 Dec 2008 22:47:19 GMT

Seriously!

I had a check-up with the family doctor today on my anxiety/depression. It's primarily because of my Crohn's now, but I started it because of the grieving process. I felt like I was chasing my tail, so to speak, so back in April, my OB put me on Lexapro and it did the trick. Well, insurance decided they didn't want to cover that drug anymore, so my family doctor made the switch for me and also gave me Xanax because I had a rough patch around the time of the Girl's birthday. She's SUPER about checking up on you when you are on these drugs, so today was my 3 month check-up, and it wasn't good.

The steroids are wreaking havoc on my body, more then I really care to realize it seems....

I've gained 21 lbs in 3 months, and I swear it's all in my ankles and my face. It's steroid related, OBVIOUSLY.

My blood pressures are dangerously high. In the left arm it was 148/88 and in the right arm it was 150/110. Just so you know, NORMAL pressures for me around something like 100/60. I have NEVER EVER had blood pressure issues.

So, my family doc had me call the clinical people for the study to see about adding medication. She's nervous this is too high (as am I). So, I'm to track the pressures for a week and if no improvement, we are going to start blood pressure meds. She also now wants me taking DAILY Xanax, whereas it has been just as needed and I maybe take a 1/2 a pill once a week, at best. Now I'm taking 3 doses of 1/2 a pill/day

I will be returning to St. Louis for a 6 week check-up this Friday for the study. I'll see Dr. Stone at that time, so Caroline (my researcher) and I discussed it'd be wise to track the pressures with the Xanax adding and see where we are Friday. If Dr. Stone feels the steroids are the contributor and it's weighing AGAINST my health, then we will contact the pharmaceutical and start weaning off the steroids sooner then later, so long as it doesn't affect the study. My family doctor is pretty much in agreement that the blood pressure issue is because of the steroids. Then, we'll reassess the situation again on Tuesday next week, after I have a full week's worth of blood pressure measurements.

The Xanax KNOCKS me out, so that IS the downfall. I took my meds tonight at around 8pm once Addy was asleep, and I passed out for 2 hours and I do not think it'll take me long to fall back asleep...

I'm REALLY going to get nothing done now, but after resting tonight, my blood pressures went to 126/78....obviously better, but still on the high side for ME.

OH, the FRUSTRATION! Some days I want to scream, and today was DEFINITELY one of those days....

ON a good note, did you know my baby girl is 16 months old today? WOW! I cannot believe it. She's a little pistol these days. Rotten to the core and funnier by the minute. I need to start getting some more pictures of her. She's got an array of Christmas outfits that she looks super cute in! Give me a few days. Like I said, overwhelmed and frustrated...and on the bad days, I just do good to get her and I both out the door.... we're making do..somehow, someway!

Thankful

Kaycie and Charley — Thu, 27 Nov 2008 16:23:44 GMT

Sure, it's probably the entry title for many today, but today, I am thankful. We are thankful.

Thankful for the GOOD AND THE BAD. Because, without the bad, there would be no good.

We have loved and lost much in the past few years, but we are forever grateful for what we still have because it is what keeps us going, day in and day out.

I could sit and list all we are thankful for, but the list would go on for ages... but since it's only appropriate, here are a few things we ARE thankful for...

We're thankful for:

Reagan - She has humbled us and taught us so much, especially about Hope
Addy - She has brought laughter and love and made us know, "It's going to be ok." Pretty good for a 16 month old!
My Crohn's - Without it, I likely wouldn't have my girls. Lots of things lead to having twins..
MY PCOS - Again, without it, I wouldn't have my girls
My endless doctors - Seriously, I have a FANTASTIC network of doctors. Sure, I get frustrated. Who doesn't? But, I have one of the best Reproductive Endocrinologist (fertility doc), Maternal Fetal Specialist (our pregnancy doc), gastroeneterologist, colon surgeon, family physician, etc..etc.. even their nurses have been great. I've had a bit of trouble with a few, but all in all, I cannot complain. And, we are so thankful for the docs that took care of the girls.. From Dr. Quintero to Dr. Turnquest to the Neos... (Dr. Vincent)... they have all etched a permanent place in our hearts and minds.
Our beautiful home (though it's a bit - ok a lot - messy at the moment)
Our friends & family - you know who you are!
Our huge support network that is always there for us...always...
My Parents - They have been there for us left and right. They have be our backbones of our marriage and family as we have dealt with infertility, Crohn's, prematurity, and losing a child. They have gently reminded us that even during the hardest decisions of our life, it will be okay, somehow, someway. And, throughout ALL of our decisions, they have sat back and supported us...helped us.. loved us. Thank you!

Again, the list could go on and on... that's just what's on my mind at the moment...

We wish everyone a wonderful Thanksgiving. We'll be spending ours with family. And, we'll be visiting Reagan too.

I hope you are getting the placebo!

Kaycie and Charley — Mon, 24 Nov 2008 23:24:55 GMT

So, my 2nd infusion for ABT-874 (1 of 3 different doses or the possible placebo) was today. I have to have a short physical by a study doctor. My doctor is part of the study, so he typically dose this, but he's out of the country this week. (P.S. What's up with that? I must have a thing with docs going out of the country during times of need - The girls were born when my doc was out of country, I was dx with Crohn's when my surgeon was out of country. Go figure, eh?) So, one of the other study docs did my physical. Super nice guy and he's how the convo went:

C = Caroline, my case researcher/nurse that takes my vitals and weight and reviews my charts and all before we get the infusion.
D = Dr. Corba (I think that was his name), the GI who examined me today.
M = Me (Yeah, taht was a hard one, eh?)

D to C: How are we doing?
C to D: No improvement
C to D: Do you want to do an exam?
D to C: Does she have perianal disease?
C to D: Yes
M to D & C: Yes, Perianal disease with it found sporadically through my large intestines. They've yet to find it in my small intestines. I have fistualas, abscesses, fissures, and a skin tag, but the only think currently bothering me is a skin tag.
C to D: Do you want to do an exam?
D to C: Sure, if you need one.
C to D: No, we don't
(Insert my SIGH of relief!)
D to C: Ok, let's let Dr. Stone do it in 2 weeks at her next follow-up
(Insert BIGGER sigh of relief)
(Doctor starts exam - just thyroid, swelling, heart, lungs, etc.)
D to M: How old are you?
M to D: 26
D to M: How long have you been diagnosed?
Me to D: 3 years
D to M: It's not fair, is it?
(Realizing that, yeah, it's not, but I respond): There could be worse things...

Lots of other random conversation and after he pushed on my belly enough to make it feel uncomfortable, he shook my hand and said as he walked out the door... "I hope you are getting the placebo."

Took me a minute to get it. But, I hope I'm getting the LOW dose of the drug OR the placebo, because I've OBVIOUSLY not seen ANY relief. It'd suck to know I got the placebo, but quite honestly, I'd PREFER to know I'm not getting the full drug, so that when I DO get the drug, MAYBE< just MAYBE it'll work and I'll get RELIEF!

Onto another day.... We go back in 2 weeks for a quick follow-up and then 2 weeks after that for the 3rd infusion. I am at week 4 now, starting week 5. So, in 8 more weeks, I can wean off the steroids (hopefully). I will start that near the end of January. As much as I hate these steroids, I wouldn't be functioning without them...

Our little bowler...

Kaycie and Charley — Sat, 22 Nov 2008 21:06:59 GMT

Well, most of you know Charley & I are both avid bowlers. Well, I'm not bowling right now, but bowling is still my passion. I volunteer a lot and Charley is the local coordinator for high school. I run a tournament. I'm primarily in charge of the state tournament coming to our city in a few months, etc. The list goes ON!

Anyway, Miss Addy got her FIRST experience bowling tonight. And, where at? Her daddy's first ever bowling center. It was way cute. She made it through about 4 frames and then was done. But, hey, that's pretty amazing for a 16 month old! She did good, even got her first spare, of course Daddy helped. But, here is some video and pictures to share! (Oh, and we were there because her cousin's 6th birthday party was today!)

Yes, she was purely MESMERIZED. She just stood their and watched the ball go all the way down. She did go over the foul line a few times and tried to run down the lane once, but seriously, 16 months, and she's already enthralled with the sport! Our little bowler... we just need to teach her to be a lefty, FOR sure!

And, here's some video for kicks!

Bigger

Kaycie and Charley — Sat, 22 Nov 2008 04:12:01 GMT

With all the "bad" news in the world today, I seem to be deep in thought anymore. The obvious horrible economy, the crashing stock-markets, the people losing their jobs (just before Christmas), the rising prices on everything, the list just seems endless right now. On my drive to work every morning, I seem to always be deep in thought. If i could blog in my 5 minute drive from my house to my job, I think I might have some interesting things to say... must be that I'm not fully awake at 7am, but yet I am... there's a little girl that gets me up bright and early at around 6:30am EVERY morning!

That said, "bigger," came from one of those drives to work this week. So much "bad" news in the world, and really....there are so many things "bigger" then that....

Just a few days before Thanksgiving and we are reminded to be thankful for what we DO have. And, it seems this year, that we all feel a little extra blessed and a little extra cursed at the same time. Sort of bittersweet, eh? Trust me, I know that feeling. Hands down.

Today, someone lost a child.
Today, someone lost a grandchild.
Today, someone lost a niece.
Today, someone lost a nephew.
Today, someone lost a cousin.
Today, someone lost a friend.
Today, someone lost a mother.
Today, someone lost a father.
Today, someone lost a grandparent.
Today, someone lost an aunt/uncle.
Today, someone lost their job.
Today, someone lost their home.
Today, someone lost their car.
Today, someone lost.......

Despite all the negativity there, I can assure you there is some blessing in disguise. It's just a realistic thing. But, it's so hard to find that positive when the negative is so bad. There are much BIGGER things in life then money, jobs, homes, cars, etc. I mean, yes, they are important. We ALL want to provide for our families, but in the realm of things, all we need is a quaint home to keep our family safe and food on the table. It's back to the good ole sayings, but it's true. It's bittersweet because so much heartache and stress has come from the stress of the economy, but when you look at the grand scheme of things.... it's so easy to say how thankful we are that our families are here and safe and sound. It can be taken away so easily.

I have no idea where some of this comes from. I've been reading lots of blogs lately of those who have lost children. And, I've found a wonderful place to go for pregnancy and loss awareness (If you are interested and have experienced such a loss, Leave a note or email me at kc6313@aol.com and I'll happily direct you there.) And, I've been connecting with a mother who is going through the bittersweet feeling of bringing home one child while burying the other. My heart breaks for her daily.....daily. All of these resources are helping me grieve, as I wonder if I really ever took the time to grieve. Let's face it. The girls were born August 2nd. We buried Reagan August 8th. Addy came home September 24th, and I was back at work October 1st. Literally, where was time allowed for me to grieve? It wasn't. I think that has been some of my overwhelming feelings lately. All the stressers of the economy and me being sick (STILL!) just make me think about these things. Plus, the impending holidays...well....holidays are just tough. I never thought I would grow to despise Christmas in the LEAST bit. I have ALWAYS been a HUGE Christmas person, but now, it's bittersweet EVERY year. Last year, only Christmas was really hard, this year? I don't know...we shall see. But, what I'm trying to get at, is this stressful economy has impacted SO many, but there really are things bigger in life... and though I know many of us have had some major setbacks, there are BIGGER things in life... and I'm simply grateful that my family is here with me. I wish and pray with all my might that Reagan was here too, but I'm so grateful that Addy is here and I still believe without a doubt that without Reagan's loss, I wouldn't have Addy. I trust in Him....

So, don't sweat the small stuff... a LOT of it really is small stuff....

Horrible Blogger!

Kaycie and Charley — Sun, 16 Nov 2008 21:49:31 GMT

I think that describes me. I'm trying like heck to keep up with this blog, but honestly, I don't consider my blogging to be very good lately...

All that being said... I have some updates.

First, Miss Addy! She had her 15 month check-up. She now weighs in at 20lb 13.5oz (and that was after a BIG lunch!) and is 30.5inches tall. She is long and lean! She did take a nice growth spurt from her 12month check-up and went from the 8% to the 19.75%, so Dr. K was super happy with that. And, her height, well, she went from around the 30th% to the 53%. So, she's just going to be tall. I tell ya though, clothes are a semi-nightmare with her! We typically stick to leggings and dresses with tights (she looks really cute in them!), because just about any pair of pants that are LONG enough, simply FALL off of her. And, she's not shy about it. If her pants are slipping, she'll take them off herself and then hand them to you. Well, she does at home anyway.

And, here's a short video of Miss Addy. It's way cute. We did Remodeling and Energy Expo and Addy went with us to set-up as Charley had to work. Well, she was NOT very helpful. She clung to Grandma and then finally Grandma got her occupied with a box of mini-frisbees. Well, then this is what she decided to do with them...

And, well, there were 24 frisbees under that shower, but hey, she had fun! (And, yes, she has her own Bayer's Plumbing onsies! ).

As for me?
Well, not so good. Luckily, my surgeon is giving me pain pills. I'm not abusing them by any sense. It's a Norco, and I take maybe 1-3 a day. But, yes, I'm still taking daily pain pills, my bowel frequency has let up a tad, but not nearly enough. The steroids still make me feel horrible, but I'm hanging in there, I guess. I did have a REALLY bad night last night. Something I ate I guess.. but it triggered me and wow... I even needed to to take a Phenergan because I become so completely nauseated. Well, it also made me sleep REALLY well...

All that aside, I'm just struggling to stay afloat. Between work and taking care of Addy, life is just simply "tough" right now. I'm completely overwhelmed again, but it's just because I've been sick for over 5 months and still no true relief. I'm having to do whatever I can to just take care of me, Addy, and work. But, I'm making it work...somehow..someway....

We leave this coming Sunday to get infusion #2 on Monday. Wish us a safe drive there and back...lots of deer this time of year!

Peek-a-boo! I see you!

Kaycie and Charley — Tue, 04 Nov 2008 21:45:05 GMT

That's our new favorite game! The funny part? She forgets to cover BOTH her eyes, or even cover her eyes at all sometimes. And, when she does it, she's often giggling. And, tonight, she found it funny to use MOMMY'S hands and cover MOMMY's eyes!

What a little giggle box I have these days! Toddler-hood, though sometimes wears you out mentally and physically, is amazing.... I can handle all her meltdowns and hitting and biting episodes for those few moments of peek-a-boos! Oh, how great it is to be a mommy! God is good.....

Not to spoil our Christmas Cards (yes, I'm thinking ahead, NOT like me! I know!), but thought I'd share this fun photo.... (Don't worry, there were tons more photos that I won't show until you see them on the cards in December!)

15 month old!

Kaycie and Charley — Tue, 04 Nov 2008 02:50:52 GMT

That's right. Addy is OFFICIALLY 15 months old! Her 15 month check-up is this week sometime (gotta check when), so I'll update with stats soon! I think she's hit that 20lb mark now. She's DEFINITELY tall. All her clothes are basically 12-18 month now and mostly for height. She wears a ton of leggings and tights because most of her pants, though they fit GREAT on length, they fall off her waist. I'm on a hunt for some baby belts for her. Someone led me to this website Baby Beltz. I need to just get on there and order her a belt! We found some at Children's place that were size 6-18month, but they are STILL HUGE on her little waist!

I'm glad she's tall and skinny and not having to fight weight like I am, but man, clothing a tall skinny toddler is no easy task sometimes!

The PUMPKIN PATCH!

Kaycie and Charley — Tue, 04 Nov 2008 02:47:16 GMT

A day late and a dollar short, but hey, more pictures, so are you really complaining?

When we got "stuck" in St. Louis because of the delay in the test for the clinical, we decided to go to the pumpkin patch. Addy had a blast. She loved playing in the pumpkins and there was a choo-choo train that she rode in. Well, mommy had to ride in it with her, but I strapped her in initially and had the driver been able to see her directly, he would of let her ride by herself. She smiled HUGE when I buckled her in. She was so excited!

Enjoy!

Happy Halloween!

Kaycie and Charley — Tue, 04 Nov 2008 02:40:54 GMT

Can you believe it? This time last year, Miss Addy was around 7lbs soaking wet, and we spent the evening home passing out candy and snuggling with our baby girl.

This year? She went trick or treating! Just to daddy's work, and a few family homes. Heck, we didn't get home until late, but it still fun to dress her up and take her out. She enjoyed it too!

During the day, we dressed her up in her UK cheerleader outfit. Gotta love it! I need to submit it to UK's website, they said they'd post the photos on their website. I didn't get a good one of her in her outfit, but here are some anyway!

And, for trick or treating, Addy was a Butterfly Fairy! This costume was cute to begin with, but man, to see her toting around in this tutu was way cuter. She certainly lived up to the name "princess" in this outfit! LOL! And, yes, she wore the hat. Pulled it out a few times, but luckily, we didn't fight it TOO much!

And, that is Addy with her Cinderella carved pumpking, courtesy of Daddy! And, that's her baby pumpkin next to it.

And, of course, we went and saw sissy. Addy has so much fun playing at Reagan's grave. It's quite humorous. My parents went up there with me. They had something to put on her grave too and then we went to dinner afterwards (Charley was working). I took Addy's "baby" pumpkin and Reagan's pumpkin so we could get photos. Addy, of course, just like a sister, kept taking Reagan's pumpkins.

Wow....another holiday come and gone....where does time go?? Thanksgiving and Christmas will be upon us in no time. And, honestly, I think it's still going to be hard. Last year was tough, but I still feel a tinge of pain with the holidays, which is difficult since I have always loved the holiday season!

11?!?!?!

Kaycie and Charley — Tue, 28 Oct 2008 19:38:26 GMT

11? Anyone want to guess the significance of that number?

Uhm, well, I'll give you a hint, it has to do with the topic I discussed last week and decided to "spare" you all the details!

Yeah, 11 bowel movements. Sorry to be graphic, as I know it is for some. That was my total today, well, thus far. The day isn't quite over. Granted, I'm physically exhausted, mentally exhausted, was munching all day to stay awake and probably ate a few higher fiber foods and whatnots that didn't *help* the matter, but 11 was the count.

You might all wonder why I am counting anyway? Sounds kind of gross to some. Well, it's part of the study. I'm required to keep a daily journal. It's quite simple though. I right down 3 numbers. Number of soft/loose bowel movements, a number for my pain for the day, and a number for my general well being for the day. I'd have to say today has been the worst out of the 11 or so days I've been journaling. But, I had a LONG week last week, and I know I'm just tired from it all. When I get worn down, my body just can't keep up the fight and I pay for it this way.

So, you are all probably wondering about yesterday by now? Probably sick of hearing about my bowel movements by now too! Oh well, it's my reality, yet again!

Well, we got there around 12:20pm yesterday. And, much to my surprise, I was not 100% qualified for the study yet. They had to do yet another physical, by my new GI (which I absolutely love tho!), take my weight (lost 2.5 lbs - that boosted my self-esteem JUST a little!), blood pressure (130/84 - it's been so high since on steroids), temperature, asked me a few more questions, clarified my medical history yet again, went over my journals, had me feel out a 10 page survey (which is part of every infusion from now on - more on this later), and get blood.

Oh, did I mention, get blood? Sheesh! I have the pickiest veins. Good veins, but I'm anemic and you can imagine with this disease, easily dehydrated. Add to it that we had been out of town for a week and my normal munching on ice and water throughout the day went out the window. 3 sticks, 1 blown vein, and an IV later, they get enough blood. And, sure enough, my hematocrit was 37 (should be somewhere between 38 & 46), making me anemic. No surprise. And, after that and about an hour, I qualified. It took about 45 minutes to mix the drug. We're still completely in the dark as to whether it was the placebo, or one of 3 doses of the drug. We'll find out around 12 weeks I guess, or if I feel better. I certainly don't expect instant relief from it. To recap, when I started Remicade, it took 6 weeks for me to feel solid relief, and then thereafter it took about 48 hours after each infusion to get relief. So, if I see relief, I think it'll be after the 2nd infusion and I don't expect it immediately, though I'm hopeful I got the drug. Instinct just tells me so, I guess.

Anyway, about the 10 page survey. Wow. It was easy stuff, but I never realized HOW sick I was. It asked all kinds of questions. One of "How many hours of work have you missed because of your disease in the last 2 weeks?" I hadn't missed any, in fact, I haven't missed any work since being back on Sept 2, with the exception of doctor's appointments. But, the next question was, how how your qualify of work been? And, 1 being not affecting it all and 10 being not being able to work. I wrote an 8. Seriously, between needing pain meds almost daily to even FOCUS and stay out of the bathroom, having to fight through the meltdowns taht the steroids seem to be giving me at times, it has really affected me MUCH more then I though. On top of that, when I rechecked everything, I was surprised out how my general mental health about it has been. I keep a fairly positive spin on it, thanks to an awesome family and friend support network. I try not to sweat the small stuff too much, though it does bog me down at times. But, I just didn't really focus on me... I really am very sick and not noticing it. I just push through the day. I get up around 6:30 every morning or earlier. Get Addy ready, well, Charley dresses her most mornings, I get everything laid out the night before, get to work by 7:30, do the normal work day, leave work at 4pm, either go home or run to the grocery or pharmacy, get home, fix Addy and me supper and Charley too if he's home by then, get her a bath, get my emails and such checked, get her a bath (Charley does about 1/2 of them), get settled and things ready for the morning and then just crash on the couch between loads of laundry and dishes and normal household stuff. I've let a lot of stuff go to the wayside because I just don't feel well. It asked on a scale of 100 how I felt...0 being the sickest and 100 being the best. I put a 35. That was being honest. 0 would of been July. And, I've come up to a 35 since, but seem to not feel much better then a 50 the majority of the time. I guess the survey just made me stop and go "wow!"

But, the ultimate goal? Feel better. I can push through this daily stuff. It's hard, but I've been doing it since July. I attribute a lot of that to little Miss Addy. Those morning kisses and smiles get me going. That cuddling time we have at night as she falls asleep...and those nights were Daddy finds us crashed on the couch together. It makes it okay. Makes me keep going. Kids are just amazing. They really know when something isn't right. And, though she's started having what we call "meltdowns" (Seriously, I need to video this and show you...all I can do is LAUGH when she has a "meltdown."), she still can brighten my worst of moments. An amazing little gift from God....So glad I have her to wake up to in the mornings! Of course, Charley is there too! And, my mom has been nothing short of amazing! She has helped with Addy when I physically couldn't. She has just made me feel better about me and knows when I've had enough. She can see right through me when I'm sick. I sometimes think she counts my trips to the bathroom better then I do! What are moms for? I'm slowly learning how wonderful they are...and I tell ya... if you haven't today... tell your mom that you love them! My has downright been my backbone through my last 3 or so years of inferility, Crohn's, and helping me survive losing Reagan. Amazing woman! Yes she is!

Okay, this post was a BIT all over the place. Sorry! I took 2 pain pills after bowel movement #11 and Addy is playing and we're getting ready to settle in for bed. I'm looking forward to resting with her.

Will keep you all updated, but here's a teaser from the pumpkin patch we went to on Sunday. We had SO much fun!

APPROVED!

Kaycie and Charley — Mon, 27 Oct 2008 09:33:09 GMT

Approved for the clinical trial, ABT-874. YAHOO! We get to go HOME! I can't wait.

Will post more later. We had a BLAST at the pumpkin patch yesterday with our 2 twin girl cousins and Addy. I'll share photos later!

My infusion will be around noon! Pray I don't have any crazy reactions. I should be fine, other then my own anxiety, which I can take a Xanax or pain pill if I need to (I've been having a bit of a rough morning and yesterday evening as it is), so I should be fine on the way home, but a tiny bit of me worries about something going wrong, though I should be completely fine!

Gotta run....need to load the car and a few other things...

A quick FRUSTRATING update!

Kaycie and Charley — Sat, 25 Oct 2008 11:17:17 GMT

Stuck....in St. Louis. Sounds like some really bad crooner song or something! Nope. It's us, but with great company!

So, on Tuesday, they pricked me, poked me, stuck stickies on my dry skin and ripped them off, took my "samples," and asked me questions until I was blue in the face. Rushed all my results off to the pharmacy that evening and Wednesday came, Thursday passed, and on Friday morning I called. "We're just waiting on the stool sample to come back." Are you serious?? The one test that about made me puke and now it's a reminder of WHY I couldn't get the drug on Friday? Ugh! Oh well, I'll get over it. But, we're still quite frustrated about it all, to say the least.

The good news? We're staying with great family. Having a blast talking about all kinds of old stories. Addy is having a ton of fun playing with Abby & Reagan (her 22mo old twin cousins - I don't know if it's 2nd, or 3rd or something like that!). And, I'm not joking about their names. I HAD NO CLUE that was their names when I named the girls. Until their mom emailed me and I went in my head "Oops." I'm not one to steal baby names! Addy was a done deal, but Reagan's name was in the air. We'll leave it to divine intervention at it's best! What else can you put that on? It's been fun, and with the extended stay, we think we're going to take the girls to the pumpkin patch tomorrow and they have matching outfits, no joke! It'll be the cutest photo ever!

Well, I'll update more later, but yeah, right now, frustrated and enjoying some laid back times.

The good news is that the 6 tests are all fine and my GI doc took one look at my pain/symptom/# of bowel movement sheets and said "Your on 30mg?" puzzled...and said... You pretty much qualify based on that. I just hope I don't run out of pain meds. I've had a few bad spells here...

Oh, one last thing. They dropped a bombshell on me... I CANNOT taper off steroids after the infusion. I have to STAY at the same dose for 12, yes TWELVE more weeks! AWWW!!! I want to scream, but oh well. 12 more weeks is less then 1/2 the time I've been on them already, but frustrating to say the least. I just hope my weight gain stabalizes....that's the worst of it in my mind right now... oh and the insomnia, but I have Xanax and Ambien to help with that!

Gotta run this time....

And, we're off....

Kaycie and Charley — Tue, 21 Oct 2008 08:22:16 GMT

Well, the day has come! Testing day at Wash U for the clinical trial. Wish us luck. The worst of the testing is over as I had to do it at home. I'll spare you all the details, but let's just say I hope to God I never had to collect my own sample EVER again. I thought I would want to be a nurse after all I've been through, but I think I'll work in the NICU if that happens because well, seriously, baby "samples" are MUCH different then adult "samples," and I'll leave it at that!

If you are the praying kind... here's what we need prayers for...
1) That the test get all done today and sent off (critical in order to get the infusion by Friday).
2) That I get APPROVED for the study. All my tests go through a special lab....let's hope and pray that happens..
3) That I get the ACTUAL DRUG and NOT the placebo!
4) That are travels are safe! (And pain free - tho, I think I'm going to need a pain pill soon!)

Will update more later... maybe tomorrow. We'll have some downtime, but we're staying with some wonderful family and we can't wait to spend time with them too!

Ta ta for now!

Coincidence? I think not....

Kaycie and Charley — Thu, 16 Oct 2008 22:16:20 GMT

First, visit here.....

Names in the Sand....

Then.... I'll tell you the story...

So, in this "circle of friends" that I now have...one I wouldn't trade for the world, but I hope you don't join this circle. This circle is those of us who have lost a child. We connect on a level that not many can even fathom to understand, and we all hope you never have to. But, regardless, like I've said before, something so beautiful can come from this. It's AMAZING our our children's short lives continue to TOUCH SO MANY!

Anyway, someone on my "circle of friends" who lost 2 precious twin boys in March, sent me this link. I checked in on it and emailed it and really thought it was going to take several days, maybe weeks, or quite possibly a month or two before this transpired. I logged on to actually just check and see what was "new" on the blog...and much to my surprise... My sweet Reagan's name has been "written in sand." And, the coincidence part? On October 16th, 2008.... Do you all remember what October 16th, 2007 was? That's right, my due date for the girls! Reagan's still here folks... she's still here... She was and still is an amazing little girl that lived the life of an 80 year old man in just 1 hour and 27 minutes. People have NOT forgotten, even though some days it seems that way, and for that, I am FOREVER grateful....

God bless you if you still remember my sweet baby girl... that means the world to me!

And, as for Miss Addison? She's cutting THREE teeth at the SAME time. We still only have the bottom 2, but she has 3 top teeth coming through. Poor girl is fussy and not hungry, but we'll manage! She curled up on Daddy asleep right now... off to hold my other little girl.... my other miracle!

Following suite in Remembrance & CELEBRATION

Kaycie and Charley — Tue, 14 Oct 2008 19:47:33 GMT

October 15th - Pregnancy & Infant Loss Remembrance Day.

Tomorrow? Can it be? This time last year, we celebrated with a special candle we bought and we lit it 9:13pm (the time Reagan entered this world) and 10:40pm (the time Reagan grew her wings and went to live with Jesus). Has it REALLY be a year since we've done that?

It seems that the further we get away from that day....August 2, 2007, the day our lives changed FOREVER, the time goes faster.

Regardless, this post is to honor our daughter, Reagan Dawn Burge
...who lived a beautiful 1 hour and 27 minutes in this world
...who showed ONLY her mommy & daddy her BIG beautiful blue eyes for mere seconds,
...who survived an amazing fetal surgery
...who struggled in utero to live so her sister could surviv
...who taught her ENTIRE family about life, love, faith, and HOPE
...who will always be our firstborn child
...who will always be loved
...who will always be remembered....

Dearest Reagan, We miss you baby girl, but we know you come to play around us all the time. We hope Heaven is a beautiful place and one day....we will all reunite again... Love Mommy

And, in memory of all the other babies that have left us far too soon, I ask you to please post a comment and I will post to this blog (this post) your child's name, their date of birth/loss, and any information you supply in their memory. As you may of noticed on other blogs, I'm following suite in rememberance.

Let us HOLD our Earthly children just a little tighter tomorrow and let us CELEBRATE our Heavenly children that much more.

God bless you and your families, whether they are here with you are looking down from above....

Looking for a new look. Can you help?

Kaycie and Charley — Sun, 12 Oct 2008 21:00:49 GMT

Well, I see all these pretty and fancy blogs around (I'm an avid blog reader!), and I want one!

I have my own website and I'm not through blogspot as most people are, so it might be a bit more complex. The template I'm using, there aren't many more options, but I like that we have our own webpage and it makes it super easy to give my information to others..all I have to say is.. "Visit theburgefamily.org"

But, I want a PRETTY blog! I want to put some more photos of Addy and Reagan in the sidebar. I want to do more with it. Can anyone help? Any recommendations? I'm pretty computer savvy....so try me!

Almost set!

Kaycie and Charley — Sun, 12 Oct 2008 20:53:50 GMT

Hard to believe... We're leaving for St. Louis in about 10 or so days. A month ago, this time couldn't get her soon enough. I've packed on enough weight from the steroids to make me miserable. I can't seem to stay out of the bathroom, and I'm still taking pain meds (My surgeon finally gave me some!). The steroids are the worst of the trouble... I cannot wait to get off of them! 5 more weeks...that's it and I should be COMPLETELY off them!

Here's the game plan...

I have to sign and mail my consent on Monday to the researcher. From there, she will fax me my "diaries." I have to keep daily diaries. I'm sure it's food, bowel pattern, meds, etc. Basic stuff. It's going to be difficult to keep up with that, but I have to be honest.. I'm getting 2 years of FREE medication and all I have to do is keep a diary? I cannot complain. Not when my past doses of Remicade were something like $17,000 PER infusion. Yeah, that does a number on your insurance maximum...

So, on Oct 21st, we're headed to St. Louis. That afternoon, I have to do the following:
EKG, Blood Sample, Urine Sample, Stool Sample, TB test, X-ray.

I had my colonoscopy in March, so they just pulled the records... Then, they will ship all this information out Tuesday evening and have it back hopefully Friday morning and we'll get the infusion Friday afternoon and then either head back Friday night or Saturday sometime. We're not sure exactly when we're coming back. My mom mentioned maybe staying an extra day just so if I have a reaction, we're right by the hospital and not en route.

Again, we won't know for 3 months if I'm getting the medication or the placebo. But, since I'll be weaning off steroids the DAY I start infusions (I'll wean by 10mg - So, I'm at 30mg - will be off steroids 3 weeks from the Friday I start the study), I'm pretty certain "I'll" know if I've got the drug or not by around week 2 when I get down to 10mg. That's when it hit last time. I've met someone on a message board receiving the drug and they weren't sure it was working either, but then they said aroudn week 2, they started to feel better. So, it might be a miracle drug, but it might be a slow-working one too. Only time will tell! If I do get ill, (either from receiving the placebo or simply the drug not working on me), the doc can pull my chart and see if I'm getting the drug or not and then offer me the drug. So, I'm hopeful, nervous, but hopeful.

It might be a rough few months still, but I'm keeping everything crossed that this will stabalize me. Anything is worth a shot right now as there isn't much left in the cards for me to do!

WIsh me luck and I'll be sure to keep everyone posted on my progress!!

Addy's BIG girl bed!

Kaycie and Charley — Sun, 12 Oct 2008 20:53:48 GMT

Two years ago, I NEVER thought I'd have children. I just overstimulated on injectables and was undergoing all the pre-tests and treatments for IVF. Now, I have 2 little girls that are the light of my life! One from Heaven and one in my arms...

Who would of thought.....

Don't mind the sippy or the junk everywhere! We haven't had a chance to clean up the room..and honestly, I'm not sure how the sippy got there in the first place!

Yup, that's my baby....asleep in a toddler bed. This is the bed at work. We just had a port-a-crib, which has worked great up until I moved offices and things are not as quiet. She sleeps good in this bed... I was nervous about giving her a pillow, but she's 14.5months old now, and her breathing has been a-ok for a long time now. But, it was just time, and we could tell. She has learned how to get off the couch by herself and she has been sleeping with blankets for a while now... so, a leap of faith we took!

And, yes, we're working on fully babyproofing her room at home and we'll hopefully be getting it turned into a toddler bed soon. She's such a climber as it is, that's she's actually SAFER in this style bed then in a crib... we've caught her almost climbing OVER a gate already. Yes, arms and all hanging over. Oh boy! Our little monkey!

Addy's and her Baby

Kaycie and Charley — Sun, 12 Oct 2008 20:53:46 GMT

Miss Addy is learning all kinds of new words, or at least attempting to babble them!

Her newest, most used word now is "Baby" Sometimes it comes out and she says "Ba-bye" (though she LOVES to wave ba-bye now) or sometimes she says "Bar - Bra" (Name of one of her favorite friends that gets her to sleep at work nearly every day! ).

But, anyway, back to "Baby." EVERYONE is a baby. If you are a child under the age of 5, you are a "baby" to Addy. She about trampled a baby in a stroller tonight and this little girl looked to be a few months older then Addy. I had to chuckle and explain. Addy got a Madame Alexander doll from her Ma-Ma (aka "Ma") for her birthday. I had a Madame Alexander doll when I was little, so it's a treat! Well, I left it on the piano in it's box one day because I wasn't sure if my mom wanted me to preserve it or let her play with it. Well, grandma said she could have it and one day Addy pulled the baby off the piano in it's box and brought it to me. We took it out and after a few weeks of throwing it in and out of the toy box, she now LOVES this baby! LOVES it! She picks it up and kisses it and hugs it and says "awww" It's WAY cute! WAY cute!

My baby is growing up! We go night-night with this baby now. I think we may have gotten ourselves a "lovey."

Oh, and yes, she's got her Gymboree Skeleton PJs on! Aren't they cute? She glows in the dark! She hasn't noticed it yet, but it's very cute! October here we come! I'm SO excited for fall to FINALLY be here! We have some seriously cute clothes for fall!

So, here's some pictures! (And, whenever I get my computer to cooperate, I'll post a video! Apparently, the max upload is 100mb, and the video is 106!)