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
-------------
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.

Where does the time go? I didn't realize it had been so long since I've posted. Oh well. :)

Christmas was great. Emme made out like a bandit. So much so that we had to clean her toy box out and gather up a trash bag of toys to take to Goodwill. She got a dollhouse, lots of clothes, books, hair stuff, etc. You know, all the girly necessities! Ellie got clothes, diapers, a few toys, stuff like that. It was a really great day! No, I didn't get any pictures. Yes, I know I'm a bad mom.

Emme is doing great. She's just talking up a storm. Sometimes I just forget how little she still is. Josh got me a card for Christmas where you can record a message on it and Em left, " I love you, Mommy! Merry Christmas!". I just burst into tears like a blubbering idiot. It's so easy to forget how tiny their voices still sound, especially when you talk with them everyday. She is currently obsessed with Ratatouille (the movie) which she calls "Gooeyrat". She loves, loves, loves to cook (she really is my child) and Papa got her a Sesame Street cookbook for Christmas. I know she is going to have a blast using it! She is starting to be somewhat bossy with Ellie. When Ellie starts fussing she'll say, "No, Ellie. No crying! I'm right here!". It's too funny. Or if Ellie is sitting on the table in her Bumbo and tries to grab something, Emme is quick to correct her and remind her that she is just too little for M & M's.

Ellie is super. She got another tooth the other day. Can you believe it!? She's almost 7 months. She's doing super with her solid foods. We can add sweet potatoes and bananas to the allergy list. Her banana reaction was bad, too! I'm really not looking forward to having an EPI pen in my purse for her, but hey, it could be worse. Better safe than sorry! She's having quite a few good days now. She's babbling a lot. She loves to jump in her doorway jumper. (Thanks, Dad and Shannon!) She's rolling allll over the place. I put her at one end of the rug in the LR this morning and she was at the other end in a few minutes. She's got the chubbiest cheeks ever. She doesn't have dimples like Emme so her smiles is a MAJOR wrinkley nosed smile because the cheeks have no give.

Better run for now! I'm in desperate need of a shower!

Congrats to my dear friend and her hubby on expecting their first! I couldn't be happier for you! Love ya, girl!