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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.

School

Well school is starting soon, the end of Aug. to be precise.

Diva is a second grader, but first she will finish up her 1st grade Math book. She has requested that the entire year be devoted to Abe Lincoln. I am pretty sure that her sisters will not go for that LOL. She would also like to learn to write cursive. Hopefully the left to right progress of all letters will assist her in keeping from reversals.

Curly Girl is a first grader. She wants to learn about dinosaurs and bugs and stuff.

The Wondertwins will be preschoolers again, who are along for the ride.

We are also participating in Classical Conversations this year. This program will be a wonderful way for us to stay on top of things this year.

New GI

Little A saw her new GI today. I really liked him. He is also thinking that she could have an EGID, but is not limiting his vision to just that. A has another EGD/endoscopy scheduled for this coming Tuesday, please pray for her. Doc will take multiple biopsies from multiple places.

Forgot to update...

Not long after the last post, we made more changes to A's life.

1 - her patch test should up as positive to pork and beef. We eliminated these 2 meats from her diet, and therefore she is essentially vegetarian. She does eat venison when we can get it.

2 - we fired her GI doc. Well not officially yet. He wants to wait and see for 3 months, to see if she will feel better. This is too long in my oppinion for anyone to be in pain. He also wants to wean her off of her reflux meds in 3 months. He said this right after I said that she refluxes if we miss one does. Lastly, he lied about how many biopsies were taken. He told me that he took one from the esophagus and one from the stomach. The esophagus one was lost. His nurse told me that there is no record of the esophagus one on the surgical report.

3 - A feels so much better on the current diet. I am worried about nutrition and calories. She does not eat enough food most days and has been refusing her Splash.

4 - tomorrow we head to the new GI for A's first appt.

Another pic of patch testing results... I know that all of these pics have spots that are just a little red, so I am not sure if the results are positive or negative.

Oops - the picture that I was going to post is on the computer whose motherboard just died. You will just have to believe me that the milk patch and whatever was just above or below it (corn?) is also reddish.

Thank you to everyone who has been praying for my little sweetie.

Patch test results

Hard to see, but the spot to the left of the beef is red too.

The beef reaction (on the bottom) - red spot where pork was (on top). Is this a pork reaction?

The beef reaction - kind of looks like ringworm.

Update on little A

It has been a crazy week. A is still being very self limiting on what she eats. She will eat hamburger, apples, raisins, hummus with wheat free pretels; and a few other things. She will drink some of her formula daily, but not enough.

Our wonderful WIC nurse spent the day on the phone trying to get coverage for EO28 Splash thru the WIC office. She was finally successful!

The allergist has officially decided that we need to go back to the GI doc. We are out of her league.

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.

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.

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.

Slugs

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.

Lab results

I just received the pathology report the 1 biopsy showed reflux. Yep, they took exactly 1 biopsy from her stomach. Arg! I thought we were scoping to rule out EE and other EGID disorders, but you need 15-20 biopsies to make that call.

Scope results - take 1

A's scope appears to be clear. We are waiting on the biopsy results.

Scope time

Wondertwin A will be heading to the Children's Hospital for an EGD (aka upper GI scope). They will be looking to see what kind of shape her esophagus, stomach, and upper small intestine are in. If there is a certain kind of damage, they will be taking biopsies. The 2 main things they believe it could be is EE and Celiac.

Another update

Little A has been referred to a pediatric gasteroenterologist - or something like that.
I am not sure what he will want to do next.
My poor baby is probably in constant pain.

Update on Wondertwin a

For those of you following our saga, A has added another med to her diet. Zantac. This is for her reflux, in addition to the Prevacid, also for reflux.

We are also awaiting a referral to a Gi doc.

Overheard...

These twins crack me up...

We were talking about going to the doctor tomorrow, for Curly Girl's flat-footedness. A was sad that we are not seeing her doctor. Somehow it comes out that A and C share a doctor.

C says that she does not want to share a doctor.
A tells her "C, we are twins, we can share a doctor."

Me - I started cracking up.

Too Cute

Diva's 4th birthday party.
Here she is with her King.

Reflux

I spoke with the allergist's office today. I wanted to touch base regarding little A's reflux. I was informed that A has severe reflux. Until today, I did not know if she fell on the severe or mild end. Now I know. I also asked if the Prevacid should get rid of ALL of the reflux, or if we would still need to change diet. I was told that once the meds start working, we should be fine to eat whatever we want (avoiding allergens of course).

Where we stand:
- we pulled tomatoes from A's diet, for now, because it is a known reflux inducing food for her
- we know that A does not seem to feel pain from her reflux - or her pain tolerance is very high
- A will be at a 45 degree angle as she falls asleep - due to the fact that her bedtime snack is being refluxed
- A will not be allowed to drink from her water bottle after 7 pm

When I told A that the docs asked for the above changes in her life, she said okay Mom. No arguments, nothing. Thank you God for this little trooper, the only one of our girlies who could handle these changes in stride.

Did you know?

Please tell me that I am not the only person who did not know that you can make your own colored sugars. I found out today that white sugar + food color + ziplock + 3 year old shaking = colored sugar. We made purple.

Also, color paste does not work, it must be liquid. Found that one out by trial and error.

Lent 2009

Lent begins tomorrow. As a family we are preparing for this special time, mostly with discussions. Lent is the 40 days (excluding Sundays) that are between Ash Wednesday and Easter.

Preparing our home. We are preparing our home for Easter. I plan to complete my first ever Spring cleaning and purging before Easter.

Preparing our hearts. We are preparing our hearts for Jesus. Diva has requested reconcilliation tonight. So we will be going to that, followed by Mass.

What to Give Up? Traditionally Catholics fast from something they love during this time of preparation. As a family we are fasting from meat and eating out. Diva is fasting from candy and gum. Curly Girl is fasting from juice.

What to Add? As a family we will pray the rosary, at least 1 decade daily. We will attend Mass on Tuesdays as often as possible. We will "put away" the alleluia (as soon as I make one to put away).

With all of that, our regular life stuff, and medical appointments, I think that is all that I can handle as a Mommy.

Moms

This is floating around in cyberspace - so I thought I would ask my oldest 2 girls and see what they say. :)

Why did God make mothers?
CG - so they can take care of you
Diva - so they can take care of their children
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
How did God make mothers?
CG - I have no idea
Diva - out of love
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What ingredients are mothers made of ?
CG - love
Diva - skin and hair
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Why did God give you your mother and not some other mom?
CG - because He wanted someone who love and my mom is pretty nice
Diva - cuz she's caring and helpful
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What kind of little girl was your mom?
CG - one with blond hair
Diva - American
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What did mom need to know about dad before she married him?
CG - if he was the right guy for mom
Diva - that he loved her
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Why did your mom marry your dad?
CG - cuz mom thought he was handsome and good
Diva - so she could have us
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Who's the boss at your house?
CG - mommy
Diva - Momma and Dad
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What's the difference between moms & dads?
CG - b/c they have mommy and daddy parts
Diva - daddy is bossier
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What does your mom do in her spare time?
CG - clean the house
Diva - clean, help the kids, and do daycare
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What would it take to make your mom perfect?
CG - take out for ice cream each week
Diva - just loving her
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If you could change one thing about your mom, what would it be?
CG - that is hard...i don't know...change her into being flat foot like me cuz I like having flat feet.
Diva - her clothes because she needs more clothes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Life is Good

There is more to our life than medical appointments...

- Wondertwin A is officially fully potty trained
- Hubby bought a car for himself
- The house is fairly clean - hubby and the girls picked up the playroom without me asking
- I am taking the girls to a basketball game - a pink Illini game to be exact
- Curly Girl is reading fairly well
- Diva is a math wonder
- The Wondertwins keep me on my toes.
- Hubby has a good job
- We live in a house we love - though we would love it more if it self cleaned LOL
- We have food in the freezer

What more could we ask for....

We have news

Little A's sweat test came back negative - she does not have cystic fibrosis. We pretty much knew that, this was a formality.

Her upper GI test came back - she has reflux. I do not know how severe. I do not know what is causing it. I do know that as of tomorrow, my baby girl will be taking yet another medication. This one is Prevacid.

Wontertwin A update...

Little A went in today for a sweat test and an upper GI.

For the sweat test, she did great! She sat there, and waited, very patiently.

For the upper GI, she drank the Barium, blow bubbles, and did exceptionally well. We did see some reflux on at least 1 of the x-rays. The Radiologist will look at the pics and decide if she has GERD or not.

We should know tomorrow.

Today is the Day

Today we head to our hotel for the night. Little A's tests are tomorrow. Please pray for answers and cooperation from A.

Happy Birthday President Lincoln

Anyone who has read my blog knows that Diva loves history, and her favorite subject is Abe Lincoln.














Today we went to an Abe Lincoln Birthday Celebration here in town.















We gathered at the flagpole,















heard the story of his birth,















heard from his "dad,"















and even ate cake. Fun was had by all.


























Did you notice that Diva is dressed in her prairie dress and bonnet?

Small Successes 1

Danielle Bean has started something called Small Successes. Basically, moms need to recognize the small successes in their everyday lives. 3 for each week. Here are mine.........

1 - I managed to get A's appointments all arranged, and care for the other children.

2 - I did not lose my temper this week.

3 - I allowed the children to play outside, in the mud, despite the knowledge that they, and their clothes, would be totally trashed.

Tagged

I love this tag. I was tagged by Word from the Herd. I now tag: Jennifer, Sharon, Mimi, and Tracy.
Here are the rules:
1. Choose the 4th folder where you store pictures on your computer.
2. Select the 4th picture in the folder, and post it on your blog.
3. Explain the picture.
4. Tag four people to do the same.
5. No cheating (cropping, editing, etc.)


This picture was taken in the spring of 2007. We are at our local U-Pick farm getting ready to pick blueberries. This picture is on their website!
Diva and A are in the back, Curly Girl and C are in the wagon.
This is my picture.

Confusion fixed

Little A will go in for an upper GI (aka Barium swallow) preceded by a sweat test next Wed. Her first appt is at 8.

This poor child will be awakened at 1 am for some yogurt. She will not get any food until after the upper GI scheduled for 9:15 am.

Please pray for her.

More confusion

A is not having a GI scope to test for EE, she is having an upper GI (aka Barium swollow) to test for GERD.

Step 2 - date set

We are going to Peoria for testing on Thursday Feb 18th. She will have an upper GI and a sweat test at that time.

Step 2 - pending

I just received a call and A is being scheduled for a sweat test (to check for cystic fibrosis - I doubt that she has this) and for an upper GI (to test for EE).

We are thankful for all of the prayers, and especially for our good friend who is willing to take the big girls for an overnight if it become necessary.

Step 1 - compete

A had blood drawn today for a RAST test and a chest x-ray. The x-ray was a repeat to see if an abnormality that was on the previous one is gone. The x-ray was clear. Because of this, the pulminologist has passed up along to the allergist.

Step 2 is wait for the RAST results.
Step 3 - who knows...

Oh My Goodness - I forgot the best part - the clear x-ray means NO CT SCAN!

Here are my 3 youngest at the same age. They all look really similar. Above is C, then A, last is curly girl.

Anastasia - Just Starting

Little Wondertwins A was at the allergist's office on Monday. The allergist was a new one, and we competed a very thourough history. We realized that A has the symptoms for various GI and lung disorders. We being testing this Friday to determine what is going on with her.

Some ideas being looked at:
asthma
more food allergies
environmental allergies
Eosinophilic esophagitis
GERD

Please pray for our little girl.

Spanish

Ana came in and asked me where her Princess pelota was. I knew that pelota was Spanish for something, but could not remember what. She found her princess pelota - and showed me her ball.

The Dentist

Pics at the dentist watching a video of how to brush your teeth. (L to R) - Curly Girl, A, Diva, and C.


My girls love going to the dentist. They actually get jealous if their sister gets to go and not them. Lately I have over heard them playing dentist. They even brush and floss each other's teeth. If you know how I feel about teeth, you will realize that they do not get that from me!

Too cute not to show you...

Wondertwins C on the left in pink, and A on the right. They are just a little crazy.

First Reconcilliation

On December 13, 2008, Diva made her first reconcilliation. She was very excited and said it was fun. We are so proud of her. She is growing up.

Please pray for her as she prepares to receive her First Holy Eucharist in May. She is ready, just a little way to go.

I love seeing them learn.

I get a lot of enjoyment out of watching my girls make discoveries. Just before this video, Ana squealed when she realized that red and blue make purple, her favorite color.

What color is yours?

Today Wondertwin A received her new MedicAlert bracelet. All 3 little girls had outgrown their bracelets and their allergies had changed, so replacements were ordered.

Today they were comparing colors. WT A said that hers was the same color as purple cabbage, which she then requested for snack. While, Curly Girl's is orange, her favorite color. WT C's is pink of course, because every princess needs a pink allergy bracelet.

Strange child

So do you think Curly Girl would be allowed to sit like this for Math class in a public school?

Gentleness

After reading on 4real the last few days regarding gentleness, I have decided to try to put it into action. Now whenever one of my little angels enters the room, I try to look up and smile at her. When I am frustrated, I try to speak more quietly, rather than louder.

It has only been 4 hours, but so far so good. I have only yelled once. I am typically a yeller.

My word for 2009 is patience. I think that gentleness goes along with this.

Wondertwins

C to A: I am going to sing "Go My Own Way." Come on, there are 2 parts, for bof us.



Now - how on earth does my 3 year know that there are 2 parts, one for each of them?

3 year olds are overrated

C: Those are your 2 choices. Dairy Queen or let me watch tv.
Me: Neither
C: Mom, those are your choices. What do you want?

So Gross

Diva was eating an apple when she asked my why it was red, inside.
Her very loose tooth was bleeding.
I had to pull it out cuz Daddy Bear cannot handle anything remotely related to blood.

EEEEEEEEEEWWWWWWWWWWWW

Carry on....