And the Journey Continues

Two and a half weeks in -- here's the scoop

Hannah is doing fantastic.  I think we've only had one little tiny incident.  She made some candy sushi and had a bit of the cand -- that night as we were going to bed, she doubled over with a small tummy cramp - lasted a couple of minutes and then she was off to bed.  Next morning she asked me if one of her friends at school that has peanut allergies could eat it, so we checked.  We were good with peanuts, but in reading the ingredients, come to find out, one of them had wheat. Hannah had picked up the candy, all of which she had checked out, but one of the was mini's, not the regular candy, guess they used flour to keep the candies from sticking -- other than that, we haven't had any issues with anything.

She seems to be feeling better and has a better outlook on life.  It's amazing to me how many things I've read that relate to neurological and behavioral issue in children that have Celiac.  Her outlook on life seems to be better, granted we still have some of our normal issues, but I can usually put a finger on what is causing them - usually hunger.  Still haven't been able to convince her to eat any quantity.  Her definition of a meal consists of about 1/4-1/2 cup of food.  TOTAL.  We're going to be working on it, next week we meet with an occupational therapist that is a feeding specialist.  Can't wait to see how that evaluation goes. 

We were cuddling the other morning and when I asked Hannah what she thought about how this lifestyle changed made her feel, she gave me an answer in the form of a most beautiful grin.  Almost made me cry. Right now she's an awesome trooper!!  I only hope it continues as we try to get her to eat a variety of foods and see what the OT has to say.

My journey - not quite the same. The first week I felt like I was covered with poison ivy or bug bites everywhere.  My skin was crawling -- I just wanted to peel my skin off.  My nerves were on end, not just physically, but emotionally as well.  I wasn't sleeping well and was craving sugar all over the place.  About drove me crazy.  Lasted for about a week, still have occasional itchiness, but not so bad. 

Then I got sick, nothing major initially, just sore throat, coughing, sinus gunk, etc..  Put up with it for 5 days or so and then went to the Dr.  Turns out I had a sinus infection and an ear infection - antibiotic on board.  I'm actually done with it tonight and can't say that it helped a ton.  I'm still coughing and sinusy -- YUCK.  Also feel exhausted all the time, I'll sit down for a bit and find myself falling asleep, except when it's midnight and then I'm wide awake.  I even took to sleeping on the couch, so that I wasn't tossing and turning in bed for hours on end, let myself fall asleep whenever it happened.

I still feel like my body is reacting, I'm exhausted and just cranky.  The physical symptoms of withdrawal I can handle, but I'm still trying to figure out the emotions involved.  I find myself reading something and just tear up or I'm in the grocery store, usually with Hannah, looking for all the foods we can find, trying to tempt her to eat something, to pique her interest in something other than the 3 foods she'll eat, and I'll feel the tears welling up.  I know she doesn't get the enormity of this disease, but at times it hits me and I just want have a pity party for her. 

I try super hard to be upbeat and keep a sense of adventure for her sake, but right now I feel like I'm going at it alone.  I really don't mind the cooking and experimenting, but sometimes I'd love to just look at the family and say let's order a pizza" or let's go out to eat without thinking of where and what we are going to do. Oh well, one step at a time and one meal at a time -- today we survived with homemade pita bread and falafel with gf rice krispies instead of bread crumbs.  Part of it though, is the experimenting, I'd love to be able to just pull a recipe and know how it will turn out -- again, time will persevere. 

If you are a praying person, my request is that I'll find someone that has been down this road and that I will connect with.  I know there are lots of people that go gf, but I would love to have a connection with someone that i can just click with.  Okay, enough whining -- off to toss and turn for another couple of hours :-)

Try and try again

Well, we've made it one week!!  Hannah has survived, she has done very well. We made it through eating out, a couple of parties at school, and an overnight visit with the grandparents.  We've also experimented with made from scratch pancakes, biscuits, pasta, and chocolate chip cookies. Nothing turned out horrible, although some were better than others.

The pancakes I made at home - so, so.  The biscuits were made at GraMona's -- again so, so.  Next time would definitely cut down on the fat (plus I forgot the xanthan gum at home, so they were a bit crumbly)  I had planned to stay for breakfast so mom and I had that meal pulled together, but we ended up staying longer and neither one of us had planned lunch.  Last minute, we decided to have pasta.  She makes pasta a bit, so we just made her regular recipe with brown rice flour.  Normally you let the dough sit before rolling and cutting -- BAD IDEA.  Getting used to different chemical reactions is going to take a bit.  I'm assuming that with wheat flour you let it sit so that the gluten can develop -- NOT with RICE!!  So next time, lesson learned, roll immediately.  Again, xanthan gum would have helped.

Then this morning, Hannah told me they were having a chimes party at school and she would like to take something that everybody could eat, not just a single serving for her (that's what we did last week with the school stuff).  Unfortunately, I've been knocked out with some nasty cold/allergy/sore throat whatever and did not feel up to a trip to the store.  Happened upon some choc chips and decided to make choc chip cookies.  What kid doesn't like those. Followed the recipe to the letter and this is what the first batch turned out like.  

Definitely needed more flour, so added that, and not only did they hold their shape while raw, but worked beautifully in the oven as well.  The true test was that Hannah said the kids really liked them and several of them were amazed they were gluten free.  Hannah has been testing out various things the last couple of weeks and "graciously" sharing them with her friends.  They unanimously agreed that this was a keeper. So here's the recipe -- adapted from  "Gluten-free, Hassle Free"  by Marlisa Brown.

1 cup butter
3/4 cup sugar
3/4 cup brown sugar
2 eggs
1 tsp vanilla
3/4 cup sorghum flour
3/4 cup potato starch
1/2 cup tapioca flour
3/4 cup almond meal (I ground it up a little more fine in my dry container Vitamix)
2 tsp baking soda
1 tsp baking powder
1 tsp salt
1 tsp xanthan gum
1/2 bag of chocolate chips or mini baking chips

Preheat oven to 350.
Cream butter and sugars, add eggs and vanilla, beat until well combined, scraping down sides of mixing bowl.
In a separate bowl combine dry ingredients and then add to butter mixture.  Mix well.  Dough should be stiff, but not crumbly.
Place by the tbsp on a baking sheet and bake for 9 -11 minutes.  Let cool on pan for a couple of minutes before removing to a cooling rack. 

I put the rest of the dough (dropped by tbsps) on a cookie sheet and put in the freezer.  Guess we'll find out later if that works or not :)

Day 3 and counting

So Hannah has officially survived 3 days and as far as I know she hasn't had any gluten.  Although, somewhere I'm sure it's lurking the the shadows and she's consuming it in her sleep.  I guess that's my greatest fear - that no matter how hard I try to make sure everything is GF for her, I'll miss something and this will all be for naught.  I know I can't think that way and that I have to trust that God knows the best for her and that he will bless my efforts.  Kind of like this silly blog stuff -- I'm not a writer, but hoping that maybe it will do some good, if not for anybody else, at least for me!!

What a ridiculous day we had - eating GF was the least of our worries :-)  Hannah's Dr. called and requested some more labs and a bone scan.  Turns out, Rachel's Dr. put in orders for her to have bloodwork done as well.  So off to the children's hospital to have it all done.  Got there, signed in, went for the bone scan, told we couldn't do it there, that we would need to go to Asheville Imaging.  Not a big deal, only a couple miles up the road.  Went and had Rachel's blood drawn, where Hannah realized she was going to have to get stuck again too.  MAJOR MELTDOWN for 5 minutes or so.  Finally drug her into the room, had the blood drawn and off to have bone scan.  No biggie.  Keep in mind, I had picked the girls up at lunchtime, assuming we could have this all done and they wouldn't miss much school.  Get to Asheville Imaging, they tell me, first of all, I'm in the right building, wrong floor, so up we go to the 2nd floor where when handed the orders, the receptionist looks at me like I'm crazy and she can't figure out why I'm there.  No appointment.  I went through the whole thing, it was supposed to be a quick scan, we were told we could come in anytime, etc...  Super long story made short - we waited for almost 2 hrs and then it took like 5 minutes to actually do the scan.  So much for getting back to school before music practice.

Decided I was going to tackle going out to eat -- the plan was to get all the lab stuff done, go home, eat and then send the girls back in time for music practice, their big program being in the evening.  Didn't go as planned, so off to Moe's we went.  Rachel ordered, then I asked the dude to change gloves, told him I wanted corn tortillas and to leave them on the foil when he put them on the grill.  He was wonderful, he actually followed Hannah's order the entire way, letting no one else touch it and he didn't touch anything that would contaminate his gloves.  We enjoyed our meal, but more importantly Hannah realized she could and CAN do this.  There's nothing to be ashamed of or embarrassed about, just state what you need and expect in a friendly manner and keep going. 

Day by day -- step by step -- we ARE moving - mostly forward!!!  Now if only I could say the same about my kitchen.  Think I'm going to tackle it this weekend -- wanna come help??

From this day forward ---

9:42 am - phone call that will change our lives forever, but most definitely Hannah's.  The biopsy results are in and there's no doubt that H has Celiac's.  In fact, Dr. thinks she's had it her entire life.  I tend to agree based on all sorts of symptoms.  In some ways, it's a total relief to know that I haven't totally screwed up this little life and raised the monster she sometimes turns into, but that there are reasons why she acts the way she does.  Not that it's an excuse, but not something we have to live with or try to adapt to.

We've been leaning this way for a while.  Her blood work came back positive a couple weeks ago and immediately after the biopsy on Monday, the Dr. told me that her small intestine was classic textbook with scalloped folds, but that the only way to get a definitive answer was to wait until the results came back in. Because we were pretty certain, I've been doing a lot of research and coming up with ways to change our eating habits.  Pretty straightforward - until today.....

I lost it!!  Spent 15 minutes or so on the phone with the nurse and then i was off to have my own blood drawn.  After that was over with, I headed over to the local bookstore to do some searching.  I don't mind the internet, but prefer a book to hold in my hand and reference to over and over.  I was standing there looking at the selection of gluten-free cookbooks and then headed over to the medical section, trying to find something other than cookbooks, something on how to live the day to day life of Celiac. Standing there, the tears just started to flow -- they wouldn't stop. I finally pulled it together, checked out and then sat in the car bawling.  Made it home, and just let it go.  I don't know if it's the relief of finally knowing what's going on, the overwhelmingness of what it's going to take to help Hannah,  the frustration of taking 10 years to figure it out, or a combination of it all.

Talked with my Mom, she shared this quote -

Don't forget that you're human.

It's okay to have a meltdown

Just don't unpack and live there

Cry it out and refocus on where you are headed --

I'm now refocused and am ready to tackle Day 2.  We made it through Day 1 yesterday, so it's step by step moving forward.