Friday, May 29, 2009

Day 3

So day 3 of extremely limited eating. At least today she drank 3 servings of the formula so she received 1/2 of a day's nutrition that way. She at 1/4 cup of refried beans, a little bit of pineapple, 6 bites of apple, 1/2 of a hard boiled egg white, 1/4 cup cereal. She is still losing weight and looks sick again. Please continue to pray.

Food is highly over rated

This is little A's philosophy. She currently has decided that since food hurts her tummy, she will stop eating it. This means that she is eating less than 1/3 of her needed calories each day. She is getting about 450 calories from EO28 Splash. So, I am sure she is losing weight, and she is grumpy!

She will willingly eat rice + apples + beef + muffins + cookies. But not a lot of any of it.

Tuesday, May 19, 2009

Homeschooling - the Spring Edition

Curly Girl does not like to come inside and complete her school work. Today, I took the work to her. Here we are in the fort of the swingset, reading.

Sunday, May 10, 2009

First Communion

Diva received the Precious Body and Blood of Jesus for the first time on May 2nd. It was a very special time for her, with many family and friends here to celebrate.

Diva with Emily and Cecilia

Grandpa Gail and Val at the Church.

Diva and Momma

And of course the wonderful cake made by Kris.

GS Day at the Capitol

Last week we took 8 Girl Scout Daisy's to the state capitol. It was exhausting but fun. Here are some pics.

Diva enjoying her cookies :-)

Diva and a very tired Curly Girl

Curly Girl playing "Graces" - a game from Abe Lincoln's era.

We heard Miss Illinois speak.

Here we are, Diva, me and Curly Girl.


Just so you do not think that A's medical takes up my entire life, though it nearly does, I thought I would share how we spent Mother's Day.

We went on a slug hunt.

Yep, it seems that my little "ladies" love slugs. They are keeping them in a covered bowl outside. They have 5 or 6 I think. I personally am quite disgusted!

Allergist and GI update

We saw the allergist and GI nurse on Thursday.

Curly Girl and Wondertwin C had their regular 6 mos allergy appointment. Nothing new was determined, no testing done.

Wondertwin A - a different story....

So, A had her scope, and it was visually clean, and the 1 biopsy taken (from her stomach) was also clear. Her GI said that she does not have EE or Celiac based on this one scope and one biopsy. You really do need more than 1 biopsy, more like 15-20 to rule out EE.

We went to our 4 week post scope appt, with the allergist first then the GI nurse. The allergist was confused about the scope. She referred us due to suspected EE and wanted more biopsies taken. A has lost weight in the last 4 weeks, therefore, we were advised to give her 3 servings per day of EO28 Splash or Neocate - these are Amino Acid formulas for children with severe GI issues or multiple food allergies. We have samples of each, and A likes the Splash.

At the GI appt, the doc was on vacation and therefore not available. The nurse was confused about why only 1 biopsy was taken. Based on A's history, she was expecting EE also. She gave us more Neocate and Splash samples.

We go back to the allergist in August for patch testing, with an appt with the GI nurse the same day.

A is currently self limiting amounts of food to about 1/3 of what she used to eat, so less than 1/2 of what she needs.

She is off:
allergies: chicken, turkey, fish, and seafood
sister's allergy: pear
reflux triggers (suspected): tomato, dairy, citrus, mint, chocolate

She also tests negative to all foods on RAST and SPT.

We will continue to call it "multiple food allergies with GERD" and treat her as if she has EE/Eos.