Good Riddance, 2011 (aka a Year In Review)

It is with much pleasure that I bid 2011 ADIEU, Good riddance, don't let the door hitcha in the butt on the way out, get the heck out of Dodge, GOODBYE!!!

Honestly, we do have a sense of humor about it all but I thought it would be fun to recap the crap of this year (and some of the good too):

JANUARY: Colby has shoulder surgery, rendering his right arm completely useless for 8 weeks (aka I became his right arm); Emily has the worst swallow study in her life.

FEBRUARY: Emily sees a neurologist and a pulmonologist.

MARCH: My parents and sister visit to celebrate my mom's birthday. Fun is had by all!

APRIL: Emily sees an allergist and has an extremely positive celiac blood test

MAY: Emily sees a gastroenterologist, has an endoscopy and severe celiac disease is diagnosed. Ally has an extremely positive celiac blood test.

JUNE: We go to Disneyland! Fun is had by all!

JULY: We have an epic camping trip in record heat. Kids are nearly killed by rattlesnakes and the dog nearly dies from heat exhaustion. Colby has a swallow study because he nearly choked to death at work. Ally sees a gastroenterologist and has an endoscopy to confirm severe celiac. Emily fails to respond to a gluten free diet.

AUGUST: School starts and we have a 1st grader and a pre-K'r! Emily begins steroids and Colby has an endoscopy.

SEPTEMBER: Birthday season begins! Ally turns 6 and I turn 30-something. My parents visit, Colby and my dad take a flying lesson. Emily has her first positive AE test result.

OCTOBER: Birthday season continues! Emily turns 5 and Colby turns 30-something. We celebrate 11 years of wedded bliss. Colby goes hunting and returns empty-handed. Emily has her second positive AE test result.

NOVEMBER: Emily has an endoscopy and colonoscopy. A bunch of stuff is found, nothing is diagnosed.

DECEMBER: Emily gets referred to a doctor in Boston. Ally, Emily, Colby and myself are DONE with 2011! Hasta la vista baby! WELCOME 2012!!

Caringbridge

http://www.caringbridge.org/visit/emilymeyer

Sigh.

No test results. Nothing. I have called or contacted everyone I can think of to get results for Emily. I am truly frustrated to tears.

Tomorrow she goes to Denver Children's for an endoscopy and a colonoscopy in the hopes that the doctor can physically diagnose the AE. If her villi look as bad or worse than they did in May then we may be able to get a definitive diagnosis tomorrow. If the villi look good/healthy, then hopefully the doctor can see or find what is actually causing the problems (ie Crohns or Colitis).

Any prayers would be wonderful right now. I'm emotionally drained.

One Thousand Gifts

31. Phone call from my hubby that he is coming home from hunting today

32. FaceTime with my sister and nieces over the weekend

33. Mucinex

34. Colby's BFF Andrew who somehow finagled our local Safeway to put in the largest gluten free section in the store within the entire region. Unbelievable awesomeness.

35. My mom

36. Rice pudding right out of the oven

37. My dog, who has not left my side since Colby left for hunting last Thursday.

38. Family movie nights, cuddled on the couch with the kids and popcorn and a cuddly blanket

39. Neighbors who check on us

40. New boots on a cold day

Emily Update

I jokingly texted my friend Laura this morning that we probably wouldn't get Emily's test results today because that's how things seem to roll...and wouldn't ya know, we got no test results today. When Mayo says "end of the month," they apparently mean 11:59 pm on Monday night. Jeesh.

We did spend 40 minutes with the GI doctor, who has sufficiently prepared me for the test being positive. We discussed again all of the things she wanted me to know (we will need to go somewhere else for treatment at least initially, tacrolimus is the drug she will go on, the drug completely suppresses the immune system and she'll basically have to live in a bubble the rest of her childhood, etc).

At this point, she believes we will have caught the disease early enough in its process that the terrible end of the spectrum (organ transplants) will hopefully never be a reality for us. Being that it is an autoimmune disease though, the reality is that going into and coming out of remission will be what we do from here on out.

I have to put her on a - get this - formula ONLY diet for the weekend (yay me! This should go really well!), as her diarrhea is really out of control and we need to give her gut a rest. The term for this is parenteral nutrition but the doctor is allowing us to try to get her to take it orally versus intravenously. (Did I say yay yet?)

Today she hit a wall of sorts. In Costco, she developed a fever and appears to be in the throes of another migraine. She's refusing to eat and is lethargic. I cannot - CANNOT - believe it has taken this long to get any kind of answer for my kid. Prayers right now are for the lab tech to please get things wrapped up and the lab sent back before this mama completely loses her mind.

House Remodel (main level only)

So, somehow the Hubs and I got ourselves into a little project. Neither of us can recall exactly how this started, but as things typically go with us and projects, it turns into quite a hullabaloo (case in point: the microwave handle broke off a few years ago; therefore, it was imperative that we replaced all kitchen appliances with stainless ones).

My picture taking skillz are completely lacking, so for that I apologize. Once I get the good camera out, I will retake everything and post better pics. And for anyone who doesn't know what our house looked like before, my apologies for that too. Well, actually, not really. You wouldn't want to know what it looked like. Suffice to say two cats and 'dogs we no longer speak of' did plenty of "bizness" all over our carpets, baseboards and floorboards. We were not pleased to say the least.

Without further adieu...

THE DINING ROOM!

THE LIVING ROOM!

AND LAST BUT NOT LEAST, THE FAMILY ROOM!

And finally I can say that my house is becoming a home I truly love to be in! : )

Em update

I had hoped to have more of an update for Emily by now (my delay has been because I assumed to have SOME answers by now, but to no avail). We are at week 5 of waiting for the 2nd round of AE test results. I did actually find out some interesting and positive news about that test that I am hanging onto for dear life. Apparently if her AE test comes back exactly the same as it did before (meaning a positive test, but only in the first 2 dilutions of the test, not all 6), it means that she has somehow developed an antibody to that disease, which would always cause her to test positive for it, even though she wouldn't technically have the disease. This is a crazy concept to wrap your head around, I know...but our pediatrician has a 6 yr old boy she cares for who tests positive for HIV but he doesn't have the disease. So, I am obviously praying this is the case with Emily. Crazy, yes, but at this point I'm just praying for a miracle here.

She is on a second steroid now. The Prednisone she was on did nothing, so they moved her to an adult Crohn's disease steroid, hoping it would keep her diarrhea under control. All it has done is cause her daily migraines and she has started having rage temper tantrums again. I called the doctor's office yesterday after putting up with this for 10 days and begged to please give me the ok to wean her off of it. She's had diarrhea for the past 3 days, so clearly this one has stopped working also.

We are likely going to have to get her scoped from both ends now. Her last round of test results indicates she is developing Crohn's disease as well...however it is likely in a microscopic state at this point.

That is about it. Still waiting as usual...