Absence makes the heart grow fonder.

I think that if motherhood is a test, I'm pulling in a B-. I have so much to learn, but I know enough of the basics to wing it most days. It's kinda like college, I find myself struggling the most when I choose not to plan ahead, and breezing through on the days that I am prepared. You would think that I would learn my lesson and always pick out clothes and pack lunch the night before, but do I? Nope.

However, nothing could have prepared me for what we have been dealing with over the last month or so.

Kate has had an "angry tummy" since she contracted giardia (a nasty parasite common in swimming pools, shopping carts, dirt, etc.) last summer. She was sick enough that she was losing weight, lethargic, and scaring her momma big time. We ended up switching pediatricians over the whole thing, because our former ped would not perform a stool sample, (poop in a bowl) saying that even if it was giardia, it was "self-limiting" and that it would resolve itself. In his opinion, it was a virus. Shocker.

The next day, she had a dentist appointment where they took her vitals and her weight had gotten down to 29 lbs, which meant her total weight loss was around 11% of her body weight, and I started panicking, worst case scenario style.

I called around and got her in with a new pediatrician, Dr. Ramsey, who took us seriously and ordered the stool sample, got her on the hardcore antibiotic...no more giardia, good as new, right?

Except Kate never really got back to normal. Her tummy always hurt, her "throw up" (throat) hurt, she was alternating between diarrhea, constipation, bloated, flat tummy, irritable, happy, fatigued, energetic, hungry and full. We chalked it up to the terrific three's and Dr. Ramsey called it "postviral gastroparesis," or indigestion caused by an infection. She put her on Prevacid for the reflux (she would have random vomiting episodes, as well) and Miralax for the poo issues. She ordered an abdominal x-ray, which showed Kate to be full of you-know-what, and prescribed enemas and suppositories to clean her out. Now it was labeled "chronic constipation."

Well, I was not really happy about my child taking two longterm medications at the age of three and a half, so I tried increasing her fiber, giving her more whole wheat items, oatmeal, prunes, raisins, etc. It didn't seem to matter what I fed her, she never had two days the same. And every night, she told us her tummy hurt.

It got to the point that she had a preference between two types of glycerin suppositories because one was less uncomfortable than the other, and she would ask for Mylanta before bed every night.

I felt like something was wrong, and none of what we were doing was solving the problem or even really treating the symptoms.

Meanwhile, my own stomach was giving me grief. I have had heartburn off and on since I was pregnant with Brooke, and it started acting up more frequently during all of this. My doctor had me start taking Prilosec, then increased to a double dose when the single dose stopped helping. I had an upper GI performed, which was absolutely horrible. But a story for another day!

Anyway, everything appeared normal, and at my follow up appointment, she changed my PPI to a prescription and asked me if I or anyone in my family had ever been tested for Celiac disease. My answer was no, I have only known one person ever with it, he lived across from me in high school and I think I may have spoken three words to him in my life.

So she said she wanted to test me the next time I came in for bloodwork in June, and I headed home to, of course, scour the internet for info on Celiac disease.

And it all described my baby girl's ailments.

So the following week, Kate had a follow up, and I asked Dr. Ramsey to do the blood test for Celiac disease. She was not convinced that it wasn't "garden variety chronic constipation," but she tested her, probably just to appease me, since I'm pretty sure that between my two girls, we have paid for her summer vacation this year.

A week later, I called the office, and they told me that Kate's results were in and they were high, so I needed to make an appointment with a pediatric gastroenterologist.

What?!

Me- "What does that mean, the results are high?" Nurse- "Well, it means that you need to see the gastroenterologist."

Thanks for the info. So I called the man, Dr. Villa, and I got an appointment for the next afternoon. I'm thinking this guy must be top notch if I have an appointment in less than 24 hours. That doesn't even happen at the car dealership.

So we went, and I answered all the questions about Kate's diet, her medical history, my medical history, T's medical history, and that of every family member I can think of who has ever had a significant medical problem. Then we saw Dr. Villa.

He was very good with Kate, not too pushy, and felt around on her belly for a minute, which made her laugh because it tickled.

Then he told me that her antibody levels indicated Celiac disease, with her chances of having it being in the 90's. I was floored, I could not believe that my child, who came from my own body, could have this and not even I could tell. I went through all the stages of grief right there in his office in about thirty seconds, to which he responded that this was not a bad disease.

(I KNOW THAT! IT'S NOT CANCER, OR AUTISM OR ANYTHING LIFE THREATENING BUT I AM TERRIFIED AND MY CHILD IS SICK SO GIVE ME A BREAK!) - Internal Rant

Then I took my beautiful girl home, and two days later, Dr. Villa performed an endoscopy on her under general anesthesia and took biopsies from her esophagus, stomach and small intestine. Our friend and priest, Rich, came and sat with us, providing comic relief and prayer, which is a great combination. Meanwhile, T's mother drove in to keep Brooke for us, and we had many prayerful women from the Daughters of the King praying for Kate and her doctors. I can't speak for Tommy, but I felt at peace. I had no anxiety, Kate was charming all the nurses, and when she woke up, she looked around and asked where the doctor was, then wanted to go home and eat. Dr. Villa said her tissues looked normal, but we would have to wait for the biopsy results to be sure.

The following Wednesday, or one week ago today, we went back to Dr. Villa's and were told that the biopsies confirmed that it was Celiac disease, and the only treatment is a 100% gluten free diet. Gluten is everywhere in almost everything. T was in Brazil for the week, my brain felt like it was in the washing machine, and so my reaction was to drive over to Whole Foods and wander around. At 11:30 am. With two hungry, tired and cranky toddlers.

So I spent $80 on 10 items, then came home, made mock flour tortilla quesadillas, put the girls in bed and purged my pantry. I also had some crying spells thrown in here and there, driving, sitting, laughing and then crying. I felt like a crazy person.

I know it's not the end of the world, and I know it's not a death sentence. But in a way it is. Kate will never have a carefree existence. She will always have to prepare and plan ahead, I will always have to prepare and plan ahead, which we have already determined, is NOT my strong suit.

The absolutely fabulous news is, we will be much healthier, savvier consumers, since Kate being gluten free means that the rest of the family will be mostly gluten free as well in order to protect her little intestines from being attacked. Eating gluten free means reading every label on every item you purchase and bring into your home, so you are much more conscious of what you are putting in your body.

It also means very little eating out since the only way to be sure of your food's safety is to prepare it yourself. Which means me. In the kitchen. Three meals a day. Downside, lots of dirty dishes. Upside, new cookbooks and recipes, some of my guilty pleasures!!

I gave myself a full 24 hours to grieve, then got busy figuring things out. I emailed a college friend whose daughter is also Celiac, had a great conversation with her and immediately felt less isolated. I also decided not to Facebook and blog and spill to the world about this until I was ready to deal with questions or well meaning and sometimes irritating comments.

We haven't "told" Kate anything, I've told her that she can only eat what Mommy and Daddy give her, and when she wants something she can't have, we've told her that the food in question will make her tummy hurt. Which is not something she wants! So far, she has done great, she eats whatever we give her for the most part, and has only told us a couple of times that her tummy hurts. Her preschool teachers have been awesome, letting me know what snack is at school so that I can bring Kate a healthy alternative, and following my directions for preparation. The next test will be Easter weekend when we have family coming in and we will be going out to eat!

So here's where I am today.
1. Don't take no for an answer when it comes to your child's health. It is your job and your right as the parent to ask questions and expect great care.
2. If you feel like something is not right, it probably isn't.
3. Circle the wagons. Decide who needs to know and who doesn't and keep it that way until the family is ready to share. My decision was based on T being basically incommunicado and respecting that he needed his vacation more than I needed the heartfelt sympathy of Facebook nation.
4. Planning and preparing are tools for success! I was always able to wing it and succeed until I had two children and a laundry list of responsibilities. That is one positive to come out of all of this, but not the only one.
5. Know that if your child has a disease or disorder, you need to become as much of an expert as you can, because you are their only advocate, and no one else is going to make informed decisions for them but you. The nurses at the doctor's office, the dietitian, even the friends whose children have the same issue, not one of them knows your child like you, and as long as your child is small, it is up to you to direct their care.
6. It's better to know than to wonder.

The next step is having the rest of our family tested. Brooke had her blood drawn last week and we are waiting on the results. T and I have to have our blood drawn, which will include the antibody panel and the genetic screen. Pray that Brooke's levels are low and she will not have to undergo the endoscopy. Pray for patience for me while I navigate through this transition. Pray for the healing of Kate's body and that we can continue to see the upside in all of this.

Stay tuned for fun with GF cooking!

UPDATE* Dr. Ramsey's office just called and Brooke's bloodwork came back normal! Hallelujah!