May- A Month for Sharing Awareness.

Turns out May is a big month for us when it comes to sharing awareness.  May is both Celiac Disease Awareness month and Apraxia Awareness month. Both very near and dear to our lives!

Celiac Disease is extremely common in people living with Type 1 Diabetes.  As a matter of fact, studies show that 1 in 10 people with Type 1 have Celiac Disease. 

A few other quick facts about Celiac Disease:



• An estimated 1 in 133 Americans has celiac disease, yet 83% are either undiagnosed or misdiagnosed.

• Celiac disease is a genetically based autoimmune disease that is triggered by the ingestion of gluten – a protein found in wheat, barley and rye.

• 5-22% of people with celiac disease have an immediate family member who also has the autoimmune disease.

• When a person with celiac disease eats gluten, it sets off an immune reaction that damages the villi (fingerlike projections) in the intestine and interferes with the absorption of nutrients.

• 1 in 22 first-degree family members (parent, child, sibling) and 1 in 39 second-degree family members (aunt, uncle, niece, nephew, grandparent, grandchild and half-sibling) are at risk for celiac disease.

• Classic and non-classic symptoms of Celiac Disease are:  Anemia, diarrhea, weight loss or failure to grow, constipation, abdominal pain, skin rash, fatigue, headaches, infertility, and nutritional deficiencies.  It's important to note that some people with Celiac Disease show no symptoms at all!

 

If you suspect you may have celiac, or if you have a close family member with Celiac, it is important to get tested.  Early diagnosis can help reduce your risk for other problems including: osteoporosis, infertility, recurrent miscarriage and thyroid disease. You can help prevent the development of other auto-immune diseases and even certain cancers, like lymphoma! 

 

Ask for the following blood tests:  Total IgA, IgA-tTG, IgA-EMA

 

 

May 14th is Childhood Apraxia of Speech Day. 

 

Most recently my dear #2 Daughter Avery was diagnosed with Apraxia of Speech. 

Apraxia is an uncommon, neurological speech disorder that affects a child’s ability to plan, execute, and sequence the movements of the mouth necessary for intelligible speech.

Avery's case started out pretty severe.  She just turned 3 years old in April and has a very limited vocabulary.  In the last few months she has made leaps and bounds in learning to form new words; we are so excited for what the future holds and hearing her say so many new "first" words. 

Apraxia is different from a Speech Delay.  With a speech delay, although they are not up to age standards in speech, they continue to learn at least one new word each week. 

Characteristics of Apraxia of Speech include:

• Limited babbling is present in infancy. These are quiet babies.
• Few or no words when other babies are talking by age 2
• Poor ability to imitate sounds and words
• Child substitutes and/or omits vowel and consonant sounds in words. Errors with vowel sounds are not common with other speech disorders.
• His word attempts are off-target and may not be understood even by parents.
• He may use a sound such as  da for everything.
• Often his errors are inconsistent, or he may be able to say a word once and then never again. The child understands much more than he can say.

Avery struggles with the formation of words, but knows them and their meaning. She is learning sign language as a way to communicate her needs when words fail her.  She is a bright star in our universe and we pray daily that she will continue to grow in her communication and will over come her speech disorder.

Please consider wearing blue on May 14th to show support for Avery and all of the other children who are unable to share their voice with the world.

 

 

 

 

 

 

 

 

 

 

 

 

How to invite a Gluten Free Family to a Gathering

Ok, so having kids, we're invited to alot of social functions. I'm sure most of you parents who have multiple minions (I mean kids) can relate.  It can be a little complicated when you're a Type 1 Diabetic, then throw in the need for strictly Gluten Free food, you might find yourself staring into space fighting off a panic attack.

Soo.  The truth of the matter is, we make all of our own food. If you invite us to something, you can guarantee we will come prepared to meet our own needs.  There is nothing you need to do, unless of course you WANT to.  Emphasis on WANT. Please do not make a big deal out of us being different, it just makes us feel bad and emphasizes the fact that we're being left out from what everyone else is enjoying. This is especially worse for small kiddos.

Having said that, I've come up with a few tips for people who may want to invite someone with a special diet to a gathering. It's really simple actually.

1.  Don't make a big deal out of it. Your sisters, husbands, brothers, Wifes, Aunt doesn't need to know all about what we can or can't eat.  If we want to share,  WE WILL.

2.  Speaking of which, please avoid saying anything resembling, "well, what can you eat?!?" unless of course you really want to be educated and care.  Otherwise, just be quiet.

3.  If you plan on making Gluten Free foods, please ASK us for suggestions and how to prepare to avoid cross contamination. Trust me. You do not want to know what happens when we eat gluten.  It. Is. Not. Pretty.

4.  Just ASK us to bring special items for ourselves! We were already planning on it, but if you tell us what you are making, we can put an extra effort to bring similar items so our little ones don't feel left out.

5.  If you TRY to make us feel like we're included, it means a lot to us! Really, it does.  Trying to make foods that we can eat and keeping us included makes us FEEL INCLUDED!  So give it a shot, really, you'll make us feel the love.

6. If you're going to try making gluten free food, please avoid cooking areas and utensils that are known for harboring gluten.  Things like Toasters, wooden spoons or utensils, cutting boards, pots you use to cook pasta. Even condiments you might have double dipped into while making a sandwich.  Always, always cook the Gluten Free food first.

Last but not least, remember we're people first and we just want to have a good time.  Constantly thinking about what we can and can't eat gets really old!  Helping us to feel like our lives are as normal as possible is the best way to love us. 

Buying Gluten Free hot dogs and buns for the barbeque... Now that's love.  lol.

DKA- Our Story

Sometime, at some point in my journey I found myself able to fully process our Type 1 diagnosis.  I'm not really sure when it was, or how it happened.  But I was finally able to forgive myself.

If you have been through a Type 1 diagnosis, you know what I'm talking about.  The fear; the soul crushing thoughts that you should have known.  That, maybe, there was something you could have done to prevent your child from getting sick.  It took me a long time to finally tell myself that I could not have stopped what happened.  But I will never be convinced that maybe I could have caught it sooner. Maybe my sweet girl would not have had to go through what she did.  I admit I missed a lot of signs, but I'm ok with it now.  I didn't know. How could I have?

Our story begins a little bit before Miss Lily's 18 month well child visit.  We had indeed noticed that she was getting thinner. She was drinking a lot as well.... BUT it was summer, she's getting older and taller.  Maybe it was normal for her to be skinny?  We thought it was normal.  Looking back at her picture, I know it wasn't.  She was too skinny, and it breaks my heart. 

When we went in for our 18 month well child visit, the Dr. came down on us.  She had lost weight.  We didn't know what was going on, she was a good eater we were not doing anything different, and yet, here we were, she was losing weight.  The Dr. treated us as if we were doing something wrong.  We were told we needed to come back in a few weeks for another weigh in, we left feeling like we were being accused of child abuse.  Sad and slightly attacked.  We KNEW we were doing nothing wrong, and yet, here we were.  The Dr. never questioned that there might be a health reason.

So, we went back for a weigh in,  AND she had gained some weight.  The Dr. was happy and said everything was fine, she "must" have been just having a growth spurt.  Growing taller and thinner she said.  We didn't question it, we were happy that the Dr. thought all was well! 

Fast forward to Christmas week 2010.  I was 24 weeks pregnant, and my now 23 month old daughter was sick with what appeared to be a cold or flu.  She had a fever and runny nose.  I took care of her just as I always did when she was sick... Then, after a couple days she still wasn't feeling any better.  The runny nose was gone, but she still had a fever.  She did not want to play, she just wanted to cuddle.  All day.  This is not how a normal almost 2year old acts.  Even a sick one!  At the time I didn't know that.  I'd never had a two year old before!  I'd been in contact with her dr.  reporting in with them and continuing to give Tylenol or ibuprofen for her fever and made another dr. appointment for her on the 23rd of December.

In the middle of the night she started throwing up.  And did not stop. Everything that went into her little body was instantly rejected.  She was really sick.  Barely moving but to throw up.  By the time we got her to the Dr. she was breathing heavily, panting, like she couldn't get any air.  The Dr. took one look at her and put her on oxygen and started a breathing treatment.  They thought she had a respiratory problem.

It was during this time our daughter became unresponsive.  The nurse, wrapped her up in a blanket and said, "let's go, pull your car around front, we're going to the emergency room".  This amazing nurse went with us, in our own car to the ER. She walked in and straight back into the ER rooms with our daughter.  Now, we were to find out that our local hospital was not equipped to deal with small children, but it was our only choice.  Our daughter was in an almost catatonic state.  When she did speak she asked for water.  The nurses refused to give her water.

The sad part is they needed to give her IV fluids and draw blood, but she was so dehydrated they could not get a vein.  They tried her hands, arms, legs, even her head.  Finally they ended up drilling into her calf bone's soft tissue.  It was traumatizing.  By this point Miss Lily was incoherent.  She would look at us like she didn't recognize us and I realize now she was going into a comatose state. 

After the IV had been inserted they dr. immediately told us that she had Diabetes and they had called our regional Children's hospital, which was sending their Pediatric ICU ambulance and emergency care team down to get her. Her Blood sugar was over 700 and she was in severe Diabetic Ketoacidosis and we were fighting for her life. To say we were in shock was a mild understatement.  We were devastated.

We were not allowed to ride in the ambulance with the emergency team, we headed home and gathered some clothes and essentials (Lily's favorite blankie) and drove to the hospital.  When we got to the PICU our daughter was being exceptionally well taken care of. God had blessed us with a competent care team.  She was hooked up to IV's and monitors and looked so small laying there asleep. The PICU doctor came in and explained to us that she was fighting for her life, and we would know in 12 hours if she was going to make it.  We sat through those 12 hours, every test, every dr. visit waiting for our good news.

Finally, our little lady woke up!!!  We knew she was going to be alright when she recognized who we were and cried to be held.  We knew we had a long road ahead of us. We spent Christmas Eve in the PICU.  Santa found us though, thanks to all the great volunteers at the hospital.  Lily didn't really care, but it meant the world to us. 

The following four days were spent learning how to take care of our daughter.  Leaning about our new life.  Thankful for the opportunity to LIVE that life and determined to kick diabetes butt.

Miss Lily Before Diagnosis

 

One Month After Diagnosis - Chubby cheeks are back!

 

Grace, Grace, Grace...

Amazing Grace.

The past week life handed me some new challenges.  At first, I was upset. I was thrown; I didn't know how I could possibly handle just one more thing.

I prayed. I cried. I called my mom. These are the things that help me feel better.

But still, I had started to question my God. Why? Why so much? Why so little?  Just WHY?  I was sad. I was confused. I was struggling.

Then.  Grace.

A friend reminded me of Grace.  Then the word. Just that word started popping up everywhere I looked. I saw it multiple times a day.  Grace.

I've seen it 15 times today.  I know. I counted.

God was telling me something. He was reminding me of Grace, and it's with Grace I will move forward.

"My GRACE is sufficient for you, for my power is made perfect in weakness"
2 CORINTHIANS 12:9

"Grace is the power of the holy spirit to enable you to go through things that seem impossible" UKNOWN

Cookies Make Me Happy

“When the going gets tough, the tough make cookies.”
― Erma Bombeck

Yesterday.
It was NOT a good day.  Yesterday served up a huge dose of high BG and combative child.  This is not something you want first thing in the morning.  We're talking BEFORE coffee.  I was not even armed to handle the day and I was dealing with an raging kiddo.  It wasn't her fault though and I've come to terms with these "moments" in our life.  I know that she is not in her right mind, but it still hurts my heart all the same.  We call them Mr. Hyde or Tiger Lily moments.  They pass when the Blood Sugar goes down.

If it weren't for this blog I would never speak of these moments.  But I'm sure I'm not the only one who goes through this.  It's just part of the struggle, part of the life.  One of our personal and sometimes daily struggles.

So.  After having my day start with lemons... I decided to make Lemon Cookies!!   A little ray of sunshine in an already gloomy day. They were delicious. See, don't they look delicious?

Here's the recipe

My Little Ray of Sunshine- GF Lemon Cookies

1 2/3 Cups Gluten Free Flour Blend ( I used Better Batter Blend )
1 tsp. Xantan Gum (if your blend doesn't already include it.  Better Batter does)
3/4 tsp. Baking Powder
1/2 tsp. Baking Soda
1/2 tsp. Salt
3/4 Cup Butter or Butter Flavored Crisco
3/4 Cup Packed Brown Sugar
1/3 Cup Granulated Sugar
1 1/2 tsp Lemon axtract
2 large eggs
2 cups white chocolate chips

Bake at 375 degrees for 8 to 10 minutes

Zucchini Noodle Nirvana

Once in a lifetime you come across something that makes you so inexplicably happy that you have to blog about it.  Ok, I'm being a bit dramatic.  But my new spiral veggie slicer is AH-Mazing. 
I received it in the mail as a gift from my Aunt and Uncle and let me tell you, once you start spiralizing... you CANNOT stop.

Cue picture of my new amazing veggie slicer.

I went through EIGHT zucchini's before I even realized how many I had done.  It was that much fun! Look at these cute noodles.  What is even more amazing is that the cutter even cores out the seed part that you don't really want to eat or use. 

 

So Much fun and delicious too!  I tossed it in a hot pan with some olive oil, garlic, salt and pepper.  It was Quick and easy and delicious.  Even the two year old ate it.  Double bonus points for me!

 

You can find one just like mine HERE.

Party like a Type 1 Celiac

Ok, so we've all been there.  That stressful place we mom's find ourselves in just weeks before our children's birthday.  You know, the one where we have to out-do ourselves in planning the most perfectly pretty princess party.  The hours we spend pouring over pinterest boards looking for ideas to make the party fabulous and ensure squeals of delight from our child.

Hopefully I'm not the only one!  I do really enjoy a good party and planning it is half the fun.  The other half?  Those excited squeals from my daughter!

Planning a birthday party for a diabetic child is a challenge.  At least for me it is.  You won't find some of the most popular party themes happening at our house (think Carnival or Candy shoppe) and for obvious reasons.  You won't find an abundance of sweets or goodie bags for the kids; but what you will find is a good time with family and friends.

We celebrated Miss Lily's 5th birthday this last Saturday with about 40 of our family and friends in attendance.  So how in the world do you plan to feed a large group without breaking the bank and making sure our own needs are met?  Here's what we did.  FIRST, ask for folks to bring potluck dishes, if they know how to do gluten free, and offer to do so, take them up on the offer.  SECOND, make sure you have yourselves covered first. 

Our menu consisted of simple and easy to make picnic type dishes.  Think a variety of sandwiches, salads and lots of veggies.  I took charge of covering the gluten free folks.  I set out trays of freshly slice GF deli meats and cheeses, a condiment tray and GF bread for a make your own sandwich bar.  For the other guests (on a separate table) we put out sandwiches made on fresh deli rolls which my mother in law made.  Let me tell you, having a mother in law who used to work in a deli really has it's advantages.  She really came through for me, with chicken salad, ham, turkey and cheese rolls for the other guests. 

Salad wise, you'll find that most picnic salads are both diabetes and celiac friendly.  Think sides like, potato salad, broccoli salad, coleslaw, and crock pot beans.  All of these items can be easily and cheaply be made diabetic and celiac friendly. 

For the cake situation I made a GF cake for our Celiac friends and the birthday girl and ordered cupcakes  for everyone else.  Believe it or not ordering cupcakes is a lot cheaper than using our expensive GF flour blend!  And I'm sure your wondering, "Do you do Sugar Free for the diabetics"  and I'm here to tell you, NO!  It just doesn't taste as good, and quite honestly during a birthday party, the kids are so active you will inevitably go low right before it's cake time.  What better way to cover a low than with a big ol slice of birthday cake.

I came up with a recipe for GF lemon cake (as requested by the birthday girl)  If you'd like to give it a try here is what I did and it was delicious.

2.5cups  Gluten Free All purpose flour ( I used Better Batter brand)
1.5 tsp Xantan Gum (if your blend doesn't include already. Better Batter does)
1tsp salt
1/2 tsp baking soda
1/2 tsp baking pwd
zest 3 meyer lemons
1 cup buttermilk
2 cups sugar
1 stick unsalted butter at room temperature
1/2 cup applesauce
3 eggs
juice of 3 meyer lemons

Mix together all wet ingredients, then add dry.  Bake 350 degrees for 30 to 35 minutes.  Cool and frost with your favorite frosting.  NOTE:  the cake is better without being refrigerated.  I noticed that it was way more fluffy without refrigeration, so I recommend storing the cake and frosting shortly before you plan on eating to avoid refrigeration.  It was still delicious, but just more dense. I like a fluffy cake!

Here is a picture of my cake.  Sorry no inside pictures, we were all too busy munching away to remember to take a picture, then it was gone and too late!