Help me, Santa

I don't know why, but Halloween is my trigger for Christmas shopping. Probably because Ethan's birthday is only 10 days after Halloween, so I'm already in shopping mode.

Now I love Christmas, all the holidays in fact-- October 15- Jan.1st is the best time of the year. But this year Santa is a little weary of holiday shopping. This Santa, you see, hates toys. I'm sick of them. They are all crap and I'm tired of cleaning them up day after day.

BUT, I'm no Humbug, and will not be one of those Santas who refuses to buy my children toys. I just have stipulations-- they have to be cool toys that at least keep my interest through un-packaging on Christmas day.

So fellow elves- give me your best shot. My kids are 6 and 4 year old boys, and a 1 year old girl. Tell, me your favorite Christmas gift as a kid, one you're buying for your kid or grandkid, something new that looks too good to live without, or just make something up!

If I happen to buy you suggested toy for my kids this year...hhhhhmmmmmm........I mean if Santa happens to get it for them-- I'll put you on my Christmas goody list this year.

Oh yeah, I'm taking suggestions for what should be on the goody list also!

Priceless

Size 2 diapers $9.99. Size 2 shoes $14.99. Growing-- even just a little bit....priceless.


No really, we can't afford her. My house cost less. My credit cards are experiencing sticker shock. I'm mortgaging my future faster than the government! Okay.... not that bad, but at least kids are worth it, right?!!


Yeah, okay, the diapers are a little big still.



And no, I'm not trying to save money by never changing them, but go Pampers-- they can handle a load!

I know, I know... these last two pictures have nothing to do with my post, but my brain gets off track sometimes--- a lot of times-- and it really is priceless that he walked around for several hours without know I put this on his back!

Fondant

Let me just put it out there. I strongly dislike it--and I'm terrible at working with it. Ava's birthday cake was so disappointing to me, I wouldn't even post a picture of it. First off it was suppose to be chocolate fondant-- that turned into nasty boxed fondant, that turned into-- well I didn't like it and that's all that matters.

So my sweet neighbor's Birthday is today and she asked me if I would make her a cool cake. I said sure (cause she is awesome and I couldn't turn her down)-- just find a picture of something you like and I'll do my best.

What did she pick? What do you think she picked? I smiled through my teeth as she pointed to a picture of a lopsided cake covered in ....yes, fondant.

So, I braved it. This time with homemade fondant, which tasted much better, but was still a pain in the butt. I though the results were a little better this time, but please don't look too close-- I'm very critical of my work.

Ethan sat watching me and talked about his Birthday cake. (coming up in a few weeks) I could see the wheels turning in his head, and I hoped they weren't liking the awful fondant. (How bout that dump truck cake that takes about 1 hour start to finish?!)

But.... I know me, and even if he doesn't ask, I'll do it again, cause I just can't stand when something eludes me in the kitchen. Anyone give fondant lessons?

Co-pay

$238 in co-pays a month, on JUST her prescriptions. If my phone becomes disconnected, you'll know why!

The Good, The Bad, and The Ugly

Well, after 21 hours spent in doctors' offices and hospitals in the last 7 days, and consultation with 6 different doctors and a stack of lab and tests results that would wear out any printer cartridge, we think we are finally on the right track with our little Ava monkey.


The Good

We are fairly certain she does not have a metabolic disorder. YEAH! There are still a couple of possible tests to be run, but after examination by the genetic counselor and geneticist, they are are confident that the methylmalonic acid build-up is secondary to her GI issues. Now the only concern is why they are out of whack and how to get them back in normal range.


The Bad

Ava's endoscopy and sigmoidoscopy did not come back clean. (though fortunately she came through the procedure with minimal anesthesia issues) In a way this was a blessing as it pointed fingers away from metabolic issues and back to a more manageable diagnosis.

She has been officially diagnosed with Eosinophilic Esophagitis (EE). While I had hoped she wouldn't go down this road, it is almost a relief to have a diagnosis we can begin to manage.

This diagnosis does not change her anaphylactic food allergy diagnosis-- it is a different mechanism, and though related, remains a separate issue. She has also officially been diagnosed with Asthma. This diagnosis too, is somewhat of a blessing since she has a documented "Asthma Action Plan" and there is no more guessing at how she will be treated. This also means NO MORE BREATHING TREATMENTS!!!! We hate giving breathing treatments--they are time consuming and she does not like to sit still for them. Her asthma will now be managed with inhalers and oral meds that are much easier to administer.

The Ugly

Unfortunately, an EE diagnosis just brings a whole new host of questions as to what is causing it, and how we will treat it. She has a new allergist that specializes in this disorder, and I really like her after the two hours she spent with me yesterday. Her approach is tiered in 3 parts. First, we put Ava back on reflux medication and a nasal spray to determine if the EE is being caused by environmental allergens we don't yet know about, or GERD that is untreated. In two months she will be scoped again. If this works great, if not, we move onto allergy testing for a ton of food and specific environmental allergies that may be causing the issue. After 2-3 months on a new, further restricted diet, we scope again. If it's clean great- keep going, if not the last step is a purely elemental formula diet.

Although the doctor says her gut tells her we're going to end up on the elemental diet anyway, she wants to give Ava every chance to take the easier road out! Since she is already on a solid diet it will be a brutal transition at any point.

She is being put on 5 new prescriptions for the next couple of months and we will see how it goes. There is no telling if or when she will outgrow, but the doctor did warn me that only a very few come out of this with no restricted diets as adults, especially since we have the anaphylaxis and asthma diagnosis in conjunction. BUT....she said kids surprise her everyday and we can always hope Ava will be one of them.

So there is the scoop we wish we never had to share!

Thank you for all your prayers on her behalf. We really appreciate all of you!

Two Facts

Fact #1 I am left handed.



Fact #2 I cannot be trusted with a knife!

(Oh, and just in case you're wondering, I happen to really like Hello Kitty band-aids)

Testing 1...2

Several of you have asked what is going on with Ava, so I'm going to explain it here one time. It is a little complicated, and I am definitely not the expert on these things. (I only know what I have been told and have read.)

Ava is considered FTT (failure to thrive), has sever food allergies, and RAD (reactive airway disease--basically asthma, but they don't technically diagnose asthma until the child reaches a certain age).

About 6 weeks ago, she went back to the allergist for some skin tests. The allergist found a few more allergies and was concerned that her weight was only 13lbs. 6oz. She contacted her pediatrician and they recommended that Ava be seen by a GI doctor (gastroenterologist).

About a month ago, we took her into the GI doctor. Both doctors she saw were immediately convinced she has an eosiniphilic disorder (an autoimmune disorder where the body reacts to the protein in foods). They determined she would need to have an endoscopy and sigmoidoscopy performed to biopsy the tissues in her digestive track. (this is the only way to diagnose an eosiniphilic disorder). Pending the results of those procedures, she would most likely be put on an elemental formula diet with little or no other foods allowed. We are hoping they are wrong.

About 3 weeks ago, Ava's pediatrician ordered another round of testing prior to the scopes. I felt this was a waste of time, but I took her in anyway. Last week the pediatrician called and informed us that a couple of her labs had come back abnormal. Apparently, the first round of labs a couple months ago showed an elevated level of methylmalonic acid in her urine. This time, her urine and blood were tested and elevated levels showed up in both. Long story short, elevated levels of methylmalonic acid present in both urine and blood, is the main diagnostic test for methylmalonic acidemia-- a very rare genetic metabolic disorder. I will not bore you with the details, but basically it means that your body is unable to process fats and proteins correctly and methylmalonic acid builds up in your system causing-- let's just say-- bad consequences. We are hoping they are wrong too.

In addition, Ava has been struggling for the past 5 weeks with her asthma. We can't seem to keep it under control and she basically sounds sick a majority of the time.

So that is where we are. She is scheduled to undergo her scopes tomorrow morning at Children's hospital, and will have an appointment with the geneticist next Tuesday. We are worried with the procedures tomorrow, as there is some concern with her allergies and asthma in conjunction with the anesthesia.

I obviously want everyone to be wrong and have her magically begin to turn this around on her own, but I now realize that I may have to accept some challenges. You can pray all day in vain for something you're not likely to get, but I have found it more productive to accept the things you can't change and begin to pray for the best likely outcome.

So, if any of you feel inclined to keep her in your prayers, we would sincerely appreciate it. We are praying for answers how to help her grow and be happy and healthy, and hoping for the lesser of two evils-- if you will-- in a diagnosis. And....holding onto a glimmer of hope that she will just outgrow all of this and be a normal little girl!

Laugh it off

I guess I've been too stressed to blog lately-- sad, cause that's when you get the best stories-- Like the construction barrel I hit today while on my way to the doctor--we'll save that story for another time, but in restrospect ( after the scathing death looks from Colonel Mustard) it was kinda funny.

The outrageous fees from an independent lab that my insurance won't cover-- not so funny. Neither was the phone call informing me of more abnormal test results for our littlest twit. Or... the pap smear (hate those) I had today... though my doctor's face was priceless when I discussed our form of birth control would be "choppin' 'em off."

Maybe that's my problem. I have failed to laugh enough. Not that everything should be lighthearted, but one can't deny the positive energy created from laughing at your troubles.

So today, the hospital called to run through some pre-procedure questions for Ava. "no, no, yes, no, not sure, don't know yet, yes, no...." And when she got to the last question she said, "Now in regard to her diet... never mind. I'm just going to put that she's allergic to everything." She probably wondered what kind of mother was laughing at her own child's aliments, but in my mind I saw the preview to that movie-- you know the one with the food falling from the sky-- something about meatballs-- and "run for your life!" Literally!

Yeah, I'm crazy, but I feel a litte better now that I laughed it off.

Maybe I'll go up the road and see if I can find the mirror to my car!