Gratitude

I have been lacking in gratitude, and happiness, lately. I think part of it has been the weather, or maybe I need happy pills. Either way, I figure maybe being thankful for what I do have will help, and at least it will be a good thing, even if it does not help.

Anyway - here goes - in no particular order!
1 - We leave for Disney in 8 mos and 3 days - and the kids have no idea!
2 - I have 4 wonderful daughters who love to make me laugh.
3 - I have a wonderful husband of 12 years!
4 - God watches over me and He seems to have a lot of faith in what I can handle :)
5 - Anastasia is not as sick as she was one year ago.
6 - We have a great house that keeps us safe and warm.

What now?

Wondertwin A has been having issues again for the last 2 weeks. She is not eating, has tummy pain, throat clearing, and cranky-pants-itis. A call to the GI, and we were seen yesterday. She has gained a pound since Dec (how is that possible? she does not eat!) so there will be no ng tube at this time. We are going to wait and see for 2 weeks to see if the other symptoms go away on their own. If so, great! If no, we will schedule another endoscopy.

Keep praying please!

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Allergist update

Our allergist is leaving OSF. Sad, sad, sad day. Luckily, she may be going into practice closer to us.

Today - Wondertwin A was put on inhaled steroids to get her "Reactive Airway Disease" aka asthma under control. We also have put in for this nebulizer. It is super tiny, smaller than my digital camera and silent. Since A will be using it daily, silent would be a big help. Please pray that insurance agrees with us.

Wondertwin C will be doing a pear food challange once our allergist gets settled. We are not confident that she will pass, but we want to be 100% sure that the reactions to unknowns are actually hidden pear.

Curly Girl - starting Nasocort tomorrow. She is pretty gunky, so hopefully this will help.

The girls at Rock City in Chattanooga TN.

Way over due update

I must apologize to my real family and my blog family. I know that many of you rely on this blog to keep you updated on the status of little A, but I have been unable to post. So here is the short and dirty version...

• biopsies from 2nd EGD came back clear - with means that A does not have EE or that if she does have EE, then we have eliminated the food(s) causing it
• We agreed to a 4 week food trial for corn. A failed it in 7 days, we kept her on for 10 to be sure. Symptoms: painful tummy, clingy, crying, insomnia, moody, reflux, coughing
• Removed corn from her diet: long term.... we did not remove corn derivatives such as malodextrin, but we did remove corn syrup and corn starch this time.
• Accidentally gave her powdered sugar (has corn starch) - painful tummy and clingy
• Mid Sept to mid Oct - food trial for wheat. She passed and is eating it in all forms multiple times daily
• Weight history June 30, July 31 lbs, Aug 30 (due to corn fail), Sept 31 , Oct 32
• Since the weight is going in the correct direction (UP), we will not trial foods at this time.

She has also had a respiratory infection (flu?) which led to a pretty stressful week of ongoing asthma issues. Currently, she is having GI issues (diarrhea) and a cough. I really hope the fever stays away.

In other news - Curly Girl had pneumonia last week. She is better, but her asthma also flaired.

Endoscopy #2

A had her second endoscopy yesterday.

The one in April looked totally clear, only 1 biopsy taken - from the stomach, no one even looked for eos like they were supposed to GGRRR. Fired that GI when he lied to me and wanted to "wait and see" if my 4 year old would miraculously heal herself.

The one yesterday - New GI. Scope shows esophagus has bumps on it and inflammation, stomach has an irritated area. 8 biopsies from the esophagus and 2 from the stomach were taken. Duodemum was visually clear and no biopsies.

GI said that it could all be related to GERD or she could have EE. We wait for biopsies. Follow up appt is next Tuesday.

I am frustrated that she looks worse, she is on 2 reflux meds (recently increased for weight gain) and off of 20 foods.