I still hadn't heard anything from GI so I left a message at 8:30am today. Still hadn't heard from them at 2:40 and they stop returning phone calls at 3, so I left another message. Did I get a call back? No. THIS is why we're going to STL for care. So ridiculous.

Still waiting...These people must have no idea what this is like. Having to carry the burden of something possibly being terribly wrong with your infant, testing for it, and then having to wait until they feel it's convenient to share the results- it's just cruel! I've baked and chopped everything in sight. I've baked gobs of mini muffins, two batches of homemade granola bars (so much better than store bought, super easy, and without all the horrid preservatives), chocolate chip cookies (I even froze dough balls to have for another time), and angel food cake. Our dinners have been superb and semi-lavish (compared to the normal spaghetti and macaroni and cheese). I've actually caught up on the laundry. The girls had their bath. I'm doing all I can to pass the time but I'm running out of things to do! *sigh* I guess I'll keep waiting...

Tonight were going to the Hereford House to celebrate my moms birthday. I'm really looking forward to their amazing food! I saw they had a lump crab and asparagus salad and a four berry one. Mmmmmm! I think I'll pass on the meat tonight, though. I've had it a few times recently and am in the need of a break. I do love me some veggies!

I'm starting to get my plans and lists together for my vegetable and herb garden in the backyard. Not to mention the flowers! I can't wait for Spring to come bless us with its presence. I long for the mornings where I can run to the back porch in my robe and smell the dew while I'm picking my fresh basil for our eggs.

So this is where our journey ends today. Thanks for listening...er, reading. I'll post results as soon as I know them!

Waiting is so hard. Day 6 and no results.

The girls are doing well today. They spent the morning playing together while I gathered insane amounts of tax information. Good thing I like dealing with numbers.

El has a mysterious rash on her face and nose, one that she only gets when she gets a hold of some food. But she hasn't had anything and Emme swears up and down she didn't give her anything. Who knows!? Maybe it's a reaction to the new med. I sure hope not, then my 2 hours in the car would be for not.

Do you ever have those days where you're just so tired that you can't seem to get anything done? Yeah, it's one of those days. It doesn't help that the sun isn't out, either. I always do better when the sun is out. This isn't to say I haven't done anything productive today, because I have, just not what was at the top of my list.

I made mini muffins this morning and put them in snack baggies. It really saves money and helps with portion control. Who knew that a $1.69 box of muffin mix would make 13 snacks? I also sliced and bagged our blocks of cheese and summer sausage. I sliced and diced my snack veggies and a few other items. I feel mildly successful. Don't tell anyone! Oh, I did manage to do the dishes and start a load of laundry. But that's all folks, we wouldn't want to aim too high now would we?

Emme and Ellie have been playing together lately. Other than a few attempts to tackle and lunge at Ellie, Emme has been so kind and loving. She tells her all about the toys and "Baby EinSCine". She calls her "sweetie pie" and "honey". I got Ellie belly laughing on tape at Emme the other day. It was just t-o-o sweet. What a cool gift to give them; a sibling. I hope they are close.

I think we need to be checked into the looney bin. Josh and I have started talking about another kiddo. I know, I know. It's crazy. It really is. We both keep saying, "Are we nuts!? NOW!?". I guess it's defeinitely in our cards though. If it sounds like a good idea during all of this, it's probably meant to be. I mean, that is, if God thinks it's meant to be. (Did I really just write that? I'm normally such a private person. Hmmm...must be the crazy person talkin'.)

The week is shaping up to be pretty boring. And I'm thrilled! I hope to do some more baking with Emme. Maybe some random organizing (who doesn't love a perfectly organized closet or bathroom drawer?!). Tomorrow I'm going to a vegetarian cooking class with my girlfriend, Courtney. It should be an exciting time. I just love to cook and am thrilled with any adventure to further my knowledge on this subject. I heart food. I'd like to learn more about wine. Not sure why, really. I don't care for drinking it (I'm a Amaretto Sour kinda' girl). I guess I just feel the need to be well-versed on all things food. The whole cheese avenue doesn't really interest me, though. Again, I'm not sure why. Maybe because it's stinky and bitter. I never want to eat anything that has a tendency to smell like Frank H----'s feet. I'll pass on this one...*shiver*

We still don't have Ellie's biopsy results. I guess God is doing all he can to teach me patience. I'm far from patient, but much, much closer than I was before. Hopefully we'll know in the next couple of days...?

Well, I should run. Tonight I'm making Imperial Chicken for dinner and I need to go spruce up my bread crumbs. I know, it's exciting. What can I say? I like to live on the edge.

Sometimes I think God hates me and shows it by my interactions with the CVS pharmacy here in Raytown. I mean, seriously, I've never been around so many incompetent people before. I honestly don't say that to be rude, but they really are. To make an obnoxiously long story short, I tried to fill an RX on Wednesday of last week. They said it wouldn't be in stock until Friday. We go to pick it up today, Sunday, do they have it? No. Was it ever taken off hold? No. They told us not to worry, the CVS in Independence had the medicine (only 30 minutes away). Halsey and I run to Independence and get the meds. As I'm sitting in the van examining the bottle, I realized I didn't recognize the generic name. Or the strength. Seriously!??! I push the call button to ask why the strength is different. She says that it's not, she filled it for what the sheet said. I asked to see it, she points to the top one. That would've been great if I needed the drug that was on top! AAAAAAHHHHHHH! Blah, blah, blah, they don't have the drug in stock- no one has the drug in stock. I called every other pharmacy around. No one has this drug. So I just drove 30 minutes out of my way for a medicine they didn't even have. To make matters worse, the only way Ellie will get this medicine is by us (me) driving alllll the way downtown to the Children's hospital to get it.

Have you ever seen those SNL blurbs from "Weekend Update" where Seth Myers and Amy Pohler do the "SERIOUSLY!?!?!" sketch? Well, this is exactly one of them.

Needless to say CVS will be getting a very lengthy call from me in the morning.

Oh, and while we were at the drive thru trying to get the meds in the first place, the two moron teenagers that worked drive thru window 1 at McDonalds decided it'd be a great idea to drop a chain of napkins out the window and the LIGHT THEM ON FIRE! SERIOUSLY!?!??!?! You do this crap when there are cars in plain sight!?

I'm convinced everyone is just...well, ignorant would put it kindly.

*sigh* I feel better. Thanks.
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Don't worry, I've saved the day and won a MOTY (Mother-Of-The-Year) award!

Ellie sleeping off her anesthesia.

The only good picture I've been able to get of Emme lately. She's always whining or making a weird face.

Ellie stealing Emme's oatmeal bowl. Whoops...

Smiling at Daddy!

In desperate need of a nap.

Isn't she just too cute?

I have no idea why this keep underlining! Ahhh!

We don't have too much happening today. Ellie has her monthly allergy appointment at 11:15. Other than that, I think we're just going to take it easy and watch a movie. We can all use the rest!

We'll be sure to keep you updated on the biopsy results.

Why the heck is this underlining!?

We're home. All was fine. No problems with anesthesia. Gave her an enema before the procedures and it took her an hour to pass it (after everything was done). Just watching for more blood in her diaper. She's pretty cranky. Just laid her down and we're all hoping to get some rest. He said there appeared to be nothing "grossly abnormal" just from looking but the biopsies will tell everything. Pray we get some answers.

Sorry for keeping you on pins and needles with no update.

The meeting with the Chief went well. I'm glad he's not our normal GI (very arrogant) but I got my concerns addressed and my questions answered which is all that really matters.

He already added on an endoscopy for tomorrow. I'm glad. I don't wanna have to sedate her more than once. Her biopsies will be tested for Hirchsprung's, Celiac, Eosinophilic Gastroenteritis and Colitis, and allergy inflammation. She will be given a saline enema at the hospital since she reacted to the one last week. Only anesthesia can answer our questions as to how they will put her out because she's violently allergic to soy and most likely egg. Only anesthesia can answer if she'll have to stay longer to be monitored. It should take 3 business days to get the biopsy results back. If the biopsies don't show anything, which he thinks they'll show at least allergy inflammation, then we'll just keep our appointment on 2-2 with their motility specialist, Dr. Cocjin, and talk about motility studies/scans then. (A motility problem is when the muscles in your stomach don't contract as they're supposed to to move the food along the GI tract.)

Yesterday was rough in general and I know today will be no different. El's appointment was at 1pm yesterday, and her nap is at 12:30. So needless to say she didn't sleep but one hour for her afternoon nap once we got home. Talk about cranky! She cried herself to sleep (which she hasn't done in a long, long time) and woke this morning at 5:30 crying. We tried to comfort her but she didn't want anything so we just left her. I couldn't go back to sleep so here I am! She can't have anything to eat until this afternoon. She can have Pedialyte until 8:45am but I don't think she'll be too happy with that. Oh well...

I'll keep you posted!

Since last Thursday there has been a lot going on...as always. But hey, I can't complain. As annoying and frustrating as this all is, if this is all we have to worry about, we're doing pretty well.

After Ellie got her enema last Thursday she broke out in a horrible rash. Surprise, surprise! Yet another thing she's allergic to. We gave her some Zyrtec in hopes of calming it down but had no such luck. We've been lucky so far that none of the reaction are anaphylactic (sp?). Close, but not quite there. We gave her a suppository on Thursday night before bed and Ellie was just screaming and crying. She was finally able to get something moving but had quite a bit of fussing to go along with it.

Friday morning Dr. M calls to see how Ellie is doing and tells me she's waiting to hear from the GI doc on call. El isn't really doing any better at this point, not eating much, etc. One day (maybe it was Friday...? IDK, they're all a blur) she only had, and kept down, about 4 ounces. She says either she or GI will be calling me to set up an appointment to see Dr. F for that day. A little while later a nurse from GI calls and wants to set up an appointment to see the NP, Kathy. I kindly told her that we (Dr. M and I) were told that Dr. F would be seeing us and we were told that we'd most likely be admitted for the weekend. She said she wasn't aware of that, she'd talk to him and then call me back. I hurry and leave a message for Dr. M clearly knowing this isn't what was supposed to have happened; Dr. F told her on Thursday during their conversation that he'd see us. GI calls back and says Dr. F was just under the impression that she needed to be evaluated and the NP was going to see us. *sigh* Whatever. I then politely tell her that I've been seeing an NP since September and get nowhere with them, except a new list of drugs. Obviously she can't do anything about it, so my bad for taking it out on her. Sorry, Lady. I get in touch with Dr. M as we're dropping Emme off at Nana's and she is so upset. Dr. F told her that he personally would see us. She decides to call the head of GI and ask him for a favor since she rarely sends kids to them. He said he would make sure we 100% see a physician. We get there, the NP comes in and asks questions about the past few days, and goes to talk to Dr. F. Did we ever see a physician? No. Their suggestion: try Lactulose. Mind you, we've tried everything else that thers is to try, nothing works. This isn't going to be any different! Not to mention we've been advised from EVERYONE to not use this because of the stomach pains that come with it. They said they can admit for the weekend to monitor Lactulose or we can go home. Naturally we decide to go home. They also want to do a flex sigmoidoscopy and rectal biospy but can't do it until this Wednesday, admitted or not (I don't believe this). *bigger sigh* I call Dr. M on our way home and leave a message. The first thing she says when she calls back is, "I canNOT believe this! You need to call the Chief of GI (gave name and number) and patient advocacy to file a complaint." As soon as I was near a phone I left a message for C of GI and a patient advocate. This care is just getting ridiculous! Fast forward to today...

I get in touch with a patient advocate who is more than compassionate with the less than satisfactory care we've been given. She says she will page Dr. F to call us since I had quite a few questions. It's so crazy because instead of calling us, he wants to see us tomorrow at 1! It's amazing how things work when you have a patient advocate on your side and the doctors are afraid of getting in trouble...

So as of now, that's all the juicy news I really have. El still won't eat hardly anything. She's had 8oz. total today and it's almost 2pm. I'm thinking we'll end on 12-13oz. today if all goes well.

Oh, I forgot to say, Dr. M wants us to consider her having Eosinophilic Gastroenteritis and Colitis. We won't know for sure until Wednesday when they run the tests (are trying to schedule an endoscopy, too). It's basically where you're allergic to anything that enters your gut. For Ellie it's both areas; from stomach to bottom. For now, we'll err on the side of caution and avoid all food. This isn't something you're ever cured of but you can go into remission. If she does test positive for this, she'll most likely have to avoid any and all food for a long while and have a good chance of having a feeding tube so she can get the needed nutrients and calories. Eventually you do a food challenge to one food at a time and see how they do. I know a lady whose 2 year old can only tolerate Neocate!

Anyways, I'm in need of a little rest!

As always, this week was filled with more excitement than necessary. Be warned that this post might be a little TMI.

On Tuesday, Ellie started vomiting randomly. We, and the Ped, determined the cause to be from an extreme back up in her system. Because she couldn't keep much food down, we gave her some Pedialyte in a syringe. Tuesday night we tried a suppository to get her some relief but got nothing. Wednesday was an okay day with only one bottle refusal. We tried another suppository- nothing. We considered taking her to Urgent Care but knowing that they don't know our story and it's way, way, way too long to tell them, we opted to not. Josh got her up this morning to feed her and as he put her on the changing table to change her diaper she vomited again, even though she hadn't eaten in 12.5 hours. This time it was pinkish brown. Needless to say we hurried and got our showers, LeAnn came to stay with Emme, and we rushed her to the Ped. Our overly amazing Ped gave her a rectal exam (no thanks!). She could feel a lot of stool in there and El was pushing had to get it out. Still nothing. *sigh* So we head to Children's Mercy South to get a tummy x-ray to make sure there are no bowel obstructions. Once we leave there with an okay, we were told to give her an enema. Talk about nasty. The box says it works in 1-5 minutes. It took Ellie 40 minutes to go. When she did finally go after straining and straining and screaming, it was just colored water. I call Dr. M as I was supposed to and let her know what's going on. She says to try another suppository tonight and an enema in the morning and call her afterwards. This poor girl! It's terrifying how much she's had inserted into her rear! :( It makes me so, so sad to see her in pain. I burst into tears at the office this morning because of all this. It's just been SEVEN months of trying to get her to poop...on her own. It's pretty upsetting to say the least. Our Ped is calling one of her friends from Children's who we have an appointment with on 2-2 to get his advice (he's a motility disorders specialist). This is getting old and my sweet baby needs help now. I don't need a new list of drugs or new things to try. Obviously what we're doing isn't working. There are more serious problems going on.

Please pray that God provides accordingly to pay these bills. I know He will, as He always does, but it can still be scary!

I think Emme is having a great day with her Nana. She really enjoys spending time with her. I'm so thankful for the special bond they seem to have. I can't wait to get her and snuggle her tight! She's just too darn cute.

For myself:

4 hour schedule finally achieved at 6.5 months.

7am: wake and feed
830-11am: nap (meds at 10:15)
11am: wake and feed
1230-3pm: nap
3pm: wake and feed
445-530pm: catnap
630pm: feed
700pm: bed
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Ellie has an appointment at the STL Children's hospital on 2-10. They're reading over our case this weekend and are going to call Monday to say if they know of what tests they'll run, etc. We're still going to Columbia for the reflux stuff (as far as I know right now at least) but have decided to cancel our appointment with the Ped GI there because he won't read her case or anything beforehand. She's also started shaking within the past week. Not terrible but shaking nonetheless. Shaking like you do when you haven't eaten in a while or have had too much caffeine. Hopefully we'll figure something out. I've found a few things I'm going to ask about but don't want to post them yet so no one freaks. Lol. :) Better run. Emme needs a snack! That bottomless pit!

Wow! Talk about exhausting. That's just what this last week and a half has been.

Josh's family was in town from Chicago so we spent most of our free time last week hanging out with them. I love them all dearly and cherish the time we have together but loathe the chaos that comes with it. I'm not a fly-by-the-seat-of-my-pants kinda person. I need a plan; something to look forward to. I'm sure it's crazy but Cheryl understands, right?! The week was spend playing many games of Dominos and eating way, way too much food. All in all it was a great visit.

I wish I had more to say about Emme. :( She's old enough now where she doesn't hit a milestone every day or week. She keeps cracking us up with her funny sayings. We have the silliest conversations sometimes. She had Josh almost in tears last night laughing. She's pretty darn cute! I mean, but would you expect any different? She loves her dollhouse (or "dollShouse" as she calls it). She's really into me reading to her. She loves music. She's very bossy to her little sister and sometimes attempts to talk to us that way. She's my sweet Princess and I love her more than life!

Ellie is...well...Ellie. I'm sure you've figured out that nothing good lasts for long. Things have been getting pretty bad again the past two weeks with the screaming and not pooping, etc. She's not napping well and is very unhappy. Long story short I decided to try and get in to the Ped. GI that specializes in her field (GERD, motility and Celiac disease). He had a 3 month wait but I name dropped our Pediatricians name and we got in in two weeks. :) Gotta love the connections! A few months ago, before our first GI appointment, I wrote out Ellie's whole story (dates of doctor visits, what was said, what we went for, meds, formulas, reactions- everything). I decided that it was time to update it and combine her "story" with how her GI visits have been going. It was 4 pages long! Yikes! There is a really, really awesome website called MARCI-Kids. They're a very up and coming research group on GERD and motility problems in infants. I decided, "Heck, I have Ellie's whole story written out for our new GI appointment in two weeks. I'm going to send it to them and get their input as to if they have anything specific I should ask for (med, tests), add, etc." I didn't figure they would respond as I'm sure they get tons of emails a day asking for their input. I sent it to one of the research doctors that deals with the medicine/drug side of things and another research doctor who is the professor of childrens gastroenterology. Come to find out they are based out of MU!!!!!!!! I about peed myself with excitment when I found out that world renowned doctors are just an hour and half from us! Luckily, I made it to the bathroom in time. :) Ok, so, I emailed them her story. You'll never guess what! I got a reply from one of them within 20 minutes! Ahhhh! AND, what's even more shocking is he is out on research until the 19th. So the fact that he checked it and emailed me back right away was incredible. He said he wants to see us asap, so we're in the process of getting an appointment set up. They'll probably admit Ellie for a few days to run a wireless pH probe and do a few other things to see why she can't poop.

So in a very small nutshell, that is our exciting news! Hooray! Please pray that God will provide accordingly for the costs of all of this and that Ellie will do well with all of the tests, etc.