Results - Celiac Sprue Sept 24, 2015

Well, it's confirmed, this little angel has Celiac Sprue. Poor dear, I can't imagine what she's felt like eating gluten, and how sick it's making her. It's no wonder she's not a big eater, it all makes her sick. 

When the doctor told  us, I don't know why I felt so devastated. I had all the information, the doctor even told me she was 99% sure a week ago at the procedure. But I was still hanging on to a shred of hope that the results would be negative. The more research I did, the more I wanted it to go away.

But alas, it's here. It's here and we need to just deal with it head on and get this girl healthy.

So from here, we have appointments with a nutrionist and dietician to get us going on our new lifestyle. We have a lot of work to do getting her back on track, healing her guts, and getting those nutritional deficiencies back in order. 

Eve is so awesome, she just said "Ok mom, lets go get some food that doesn't have gluten for me." 

So we did. 

Sky Top Orchards

What better way to spend a day off school, than to go apple picking? I'm going to be honest, the day was a bit of a disaster. It was a lot farther than I anticipated, about 2 hours away. The kids were ornery and tired when we got there, and I found it was really rough terrain, really hard to push the stroller. It actually tipped over on our way into the orchards. Rough start, but the cider doughnuts made up for it! They were amazing, and since we were going to be seeing the GI specialist the next day, I told Eve to eat up, because it may her last cider doughnut.

Eve picked apples with our friends the Fisher family, their daughter Eva is Eve's best friend and just her age. Greta didn't like the smell, so she stayed in the stroller, leaving Graham and I to pick some apples. It was actually really nice, he got so excited at every apple, it was so hard for him to only pick one basket! Most were from the bottom of the tree (that he could reach) and were no where near ripe. But we did buy a bag of really perfect apples at the store portion on the orchard. But it was fun towards the end, and the kids were exhausted and slept most of the way home.

Sunday Walks

Sunday walks may be my favorite tradition of ours. We don't have to go anywhere fancy, just down the greenway, around the neighborhood, you name it. I just love seeing the kids explore and getting to spend time as a family.

Anniversary, 2015

A mere 7 years ago, I married the man of my dreams. The greatest man I knew, and he is still holding on to that title. He's the greatest choice I made, and I'm grateful everyday that he's mine for eternity. 

We got to spend our anniversary attending a wedding! It was so fun! His coworker was getting married on our anniversary, and we thought "what better way to spend ours?"

We spent the day hearing romantic vows, celebrating love, and enjoying time away from the kids, just us two. It was a sweet way to remember our own wedding. 

Back to the Doctor's office Sept 18

Remember I said Graham took a spill outside school when Eve had her procedure? Well it got really bruised and swollen right across the bridge of his nose. Just what we need, a broken nose. 

Luckily, it has all the aesthetic signs of a break, but the bones were fine. He just got really bruised and puffy. Thank heaven!

Missing her other half sept 8, 2015

This was Greta on Graham's first day of school. She missed her little buddy so much.

Greta girl....naughty moment

So I got eve home and put to bed, so my friend then dropped off Greta. She was excited to be home and got right to her toys. I sat down, and must have fallen asleep. I don't remeber falling asleep, but I woke to a searing pain under my left eye! I opened my eyes to see Greta holding scissors and the skin under my eye was being cut with them! I shrieked in shock (and pain) and she dropped them thankfully! I said "what are you doing?!" and I looked at her, and her shirt was in tatters. I remember seeing the clock at 1:10 pm, when Greta came home, and this happened at 1:20...she's quick.

The scissors were promptly moved from their "safe" place in the drawer, to a high shelf in the pantry.

Most kids, if they get scissors, would probably cut a pillow, toy, couch cushion, etc. Not their mom's face. I guess she likes to "think outside the box". 

She may have shaved a good 5 years off my life with this one.

Endoscope DaySept 17

The day before her surgery, Eve started to get nervous, scared, and emotional. I kept explaining how she would be fine, that it's very routine and the doctor has done it many times, there's nothing to worry about. But worry she did. She eventually went to sleep, and I was asking her "auntie April" for ideas I can make it easier for her. 

I was so humbled and grateful for such an amazing friend, by morning, I had a whole bunch of videos meant for Eve. Some from friends telling her that they love her and that she'll be fine. Some from people who have had the same procedure. All encouraging and positive. It was absolutely perfect.

Eve and I got all ready to go for an early morning at the hospital, leaving Braden to take the babies to preschool and friend's house. 

Turns out, Graham had a really rough wipe out on his way in to school, leaving him with a bloody nose and lots of swelling. Rough day for the Edwards kids. But he recovered quickly, he was anxious to get to school! Braden joined us at the hospital shortly after. 

The staff was great, really understanding and patient. The nurse came in with the blood pressure cuff, and she says to Eve, "I'm going to measure your muscles!" In a very perky way. 

Eve rolls her eyes, and says "uh, you're going to use that to see my blood pressure."

The nurse was surprised, and stumbled over her words. She said, "yes, you got me." not really sure how to react to this 3 year old sized 5 year old telling her what's going on.

Procedure went well, Eve was hilarious on the "happy juice". I got some good video of her giggling and making nonsense conversation.

She loved the teddy the nurses gave her. The most expensive teddy she'll ever receive. It's so hard seeing your kids have to go through stuff like this, I hated seeing her in surgery, no matter how routine it may be.

We had a brief meeting with the GI specialist after she finished the procedure, and Eve went to recovery. She explained that she was 99% sure it's Celiac Sprue. She showed us pictures she took of Eve's intestinal walls, stomach cavity, esophagus etc. She showed us how the intestines look "bald" and that there as a lot of inflammation. She said it can't be officially diagnosed until the samples they collected came back from being biopsied.

She also said with a wink "enjoy your last week eating Gluten." I'll see you for a follow up next week.

GI specialist Sept 10, 2015

Well, the GI specialist went through all of Eve's blood work, and explained the situation to us. Eve is most likely suffering from Celiac disease. Where her body attacks any gluten that enters her system, and during that process is killing off her villi in her intestines. They can't be positive until they go in and taken a look via an endoscope. But, she was also very deficient in many other vital vitamins and minerals, despite the multivitamins I've been giving her daily. 

The doctor suggests that the deficiencies are further evidence that Celiac is the highest likelyhood, and that we should get her an endoscope sooner rather than later so we can figure it out. She said if it is, in fact celiac, that it would be quite aggressive if it's been causing a growth plateau for this long.

It all came as a bit of a shock, even though I was suspecting something like this. I wasn't expecting it to be so intense. 

The doctor was really funny, she was describing the surgery she kept saying "the princesses in your belly" and things like that. She didn't know that Eve is very literal and doesn't like to be patronized haha. So here's how it goes:

Dr Rhue: "Ok Eve, I'm going to listen to your tummy with my stethoscope and listen for princesses playing in there. Do you have princesses in there?"

Eve: "No, that's not possible, they wouldn't fit in there."

Dr Rhue, with a surprised look on her face, "Oh, how smart you are. Are we very literal?" I nodded. So she continued "Eve, I'm listening for *such and such* etc"

Eve, "Ok, sounds good."

Dr Rhue continued on, and came to the part where she discusses her surgery with me, just things to expect etc. She tried to explain it to me leaving out key words that a little kid might find frightening.  Eve kept looking between the both of us with an eye brow raised. I asked the doctor to just explain it, Eve prefers so know exactly what's going to happen, don't sugar coat it. So she goes on telling the both of us about the procedure. 

I was amazed at how well Eve took it. She's interested in the human body and its functions, always wants to play doctor etc, so it shouldn't have been THAT surprising. But she wasn't scared, wasn't nervous, she just accepted what was being told and went with it. 

She's so old in spirit, I often forget she's only 5. She's amazing. And she's looking forward to feeling better and getting healthy.

My little morning buddy

I love my little buddy, she's challenging, but we really love our mornings together. Graham is loving preschool, and Greta finally gets me to herself for once. Yes, we are running errands 95% of the time,  but we still have fun. 

Results round 1

The results came back. Her xrays showed that her bones were chronologically accurate, so we could rule out her being a "late bloomer". That was one possibility the doctors thought could explain the lack of growth. 

I knew it wasn't the answer, call it mother intuition, but I knew there was something going on with her guts, that's why I tried to take her off gluten and dairy for a while before. Not 100%, but limiting those foods I knew could cause inflammation. Her stomach distention went down when I tried that, so that's why I encouraged the doctor to do her blood work and check for any signs of intestinal problems. 

Her blood work came back. And her TTGs were really high. Those are the "tissue transglutaminase antibodies" specific to celiac disease. So we made an appointment to see a pediatric Gastrointestinal specialist.

Poopocalypse Sept 9, 2015

Greta's been challenging lately. But this one took the cake.

I call it: Poopocalypse.

She had gone in for her nap for about an hour. I went in to check on her, (I thought I had heard some rustling) and what I found was horrifying.

I said "oh no, what happened?"

She replies, with the most innocent face she can muster, "yucky."

It was like a CSI crime scene, but instead of blood it was feces. It was everywhere! Eve's bed, sheets, frame, ALL over the carpet, smeared on the stool, inside Eve's jewelry box. It was inside drawers, clothes, blankets, shelves, pretty much everywhere except that perfectly placed potty seat sitting right next to her bed. Ironically that was the only clean thing in the room.

The clean up was over 3.5 hours. Worth the 1 hour of alone time? Not a chance.