Ketchup

I have been out of the loop lately! Things are crazy, busy here...but a good crazy.
Just a few updates:
*Alex: had her 5 year check-up and Dr. Bain said she's perfect. I still count my blessings when I hear those types of things considering where we were two years ago.
*Carson: still progressing daily-- he's imitating animals, loves puzzles and sings entire songs. He's so engaged and incredibly interactive. I am beyond thrilled with his progress.
Family: we officially have a month of GF living under our belt! I am proud of everyone in my family for being such troopers. We are doing great so far. It's a lot of time, effort and money (holy mother of gluten you should see our grocery bill), but it's worth it!
*Mel: loving my new job! I forgot how much I enjoyed working. My team is fun, laid back and very helpful. Staying very busy and learning/attempting to find the balance.
General consensus: Life is good!

VBC

Cutie girl is all ready for VBC! She is having a blast at church camp. So much fun in fact, on the way home last night she asked me, "Mommy, so this what heaven is all about? I haven't wanted to go, but if it's like camping, I think that might be a little awesome." HA! I love that she calls it camping. I tried to convince her we weren't headed to the woods with a tent. Here is a pic before we headed out today:

21 month update: Wow!

Wow, I am still in disbelief...we had such a wonderful check-up for Carson today. I've been behind on well visits because the three therapy sessions a week + chiropractor appointments + cooking everything we eat has taken hostage of our calendar.
The last time Dr. Bain (pediatrician) saw Carson it was a very sad/difficult appointment. He was 15 months old and she said, "On a scale of 1-10, he's a 9 with Autistic traits...this is a huge red flag."
As you all know, we hit the ground RUNNING. There have been days where I wonder if all of this is really worth it. It's exhausting at times and we've had a lot of days where Carson has been "lost in space"-- as if he isn't aware of his existence in space & time. I know it sounds crazy, but that is the best way I can describe it. He has also had severe sensory integration issues. They are still hanging around, but many of the behaviors are already resolved.
The past two weeks have been absolutely 100% gluten free for everyone in our home. As I mentioned he was eating wheat in the chicken (and I didn't realize it) so we changed it out and man, can we tell a difference. I don't know if we are reaping rewards from therapy, or the clean diet...I am guessing it's a bit of both.
Okay, back to the appointment. Dr. Bain watched Carson interact with me. He counted 1-5, sounded out the ABC's, said "Ready, Set, Go!" and sang two songs for her. She looked at me and said, "Who's child is this?!" She was extremely impressed with his behavior, interaction with others and his speech development. So, I had to ask her where she would put Carson on the Autism scale now. She said, "honestly a 2 or maybe 3. This is a different child. You guys are literally changing his life with what you are doing. I am so thrilled you had faith and are investing the time in changing him for the better now. I always say it is easier to prevent disease than it is to treat it." Amen! His gut is still extremely distended so we are going to test using Comprehensive Digestive analysis as we did back in January to see the progress we are making.

Stats:
Height: 35 inches, 89 percentile
Weight: 26.65 lbs., 43 percentile
Head Circumference: 19 inches, 50 percentile

Go Carson go! Here's to progress and GOOD freaking news ;) It's about time!

Here's our little chip thief

He strikes again!

All giggles & grins after our great appointment!

Mel made the news!

I wish it were for a better reason, but here's the video:

Of course I was headed to the pool with the kids so I looked lovely.
Ha!

Family results

We finally have the results for our entire family. There are two genes tested: DQ2 & DQ8.
What is the meaning of HLA DQ2/DQ8? As an autoimmune disease, Celiac Disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop CD; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop CD, rather, that they have a genetic compatibility with CD. Conversely, the absence of DQ2/DQ8 almost certainly rules out CD.

That being said, here are our results:
*Carson tested positive for DQ2
*Alex tested positive for DQ8
*Nathan tested positive for DQ2 & DQ8
*Mel tested negative

As you read previously, it doesn't mean that any of the three will absolutely have CD, it just means that the genes are there that cause it. It's our job to eliminate the "environmental factors" so the disease is not triggered.

Our doctor believes that Nathan's type 1 diabetes is a results of repetitive exposure to gluten. I tend to agree with him. The true blessing is having this knowledge now so we can hopefully prevent these types of complications in the future for our children.

Here I have been thinking all along that I have done so well with Carson's diet. Just today, I learned that hot dogs contain gluten (a food he ate for 6 months on a daily basis) and his current staple, Sprouts rotisserie chicken, uses flour in the skin and spices that contain gluten. Ahh! Clearly, I have a lot to learn.

Thank goodness, I have access to amazing resources. I am meeting with a nutritionist and she's given me a recommended meal plan for the family. Yesterday, we met at Whole Foods and did a store tour together. Next week, we are taking a hands-on cooking class with Dr. Claudia Pillow. I am looking forward to Nathan being a part of the cooking class and learning with me. He's had such an incredible attitude and is "all in." That really helps! We are going to be spending a lot of time in the kitchen together, and we are excited to learn. It helps when you have an amazing spouse :)

Last night, we explained everything to Alex. We used puppets and a lot of humor to explain how and why we can't eat wheat. She absolutely understands and seems to be on board! We are on day 3 of GF in our house! Here's to being on the road to recovery (I hope!)

Alumni Stunt Fest

Last weekend, a group of 6 Baylor alumni cheer got together for a stunt day. Let's just say me & Rachel got a serious workout. It took me a solid 3 days to start walking normally again...and I'm not joking! It was worth every ache!

Ronnie, David and Adam were amazing. Anything and everything we wanted to try, they could do. I did things I thought I would never do again, and even tried some new tricks. At the end of the day, at 31, it just feels great to know I can still do this. The guys really pushed us out of our comfort zone and that was welcomed.

Partner-stunting is one of the best things I've ever done. It's a blast. Not too often does one get to fly. We all kept laughing at each other b/c we were all "perma-grin"-- we all felt young and giddy. It was a perfect day.

We took the party to La Fiesta afterwards to recover and visit and catch up on life. Here are a few pics. We took a ton more, but here are a few of my faves:

540

Toss-scorp with Ronnie
HAHA! Has to be my favorite pic. It looks like I can grab the rafters. The jazz hands are equally entertaining. I couldn't believe we threw baskets!

No, this is not photo shop. One man has two girls over his head. Amazing, huh? Stud!

Awesome with Adam. We were partners for 2 seasons.

Video with David Prado. He's a rock star!

Thanks for the incredible day, guys! You were all amazing!

Celiac Sucks!

I couldn't find a more appropriate title for this blog post, so there you have it. We got Alex's test results back and she tested positive for the DQ2 gene as well.

What does that mean?
It means that both of our children are allergic to gluten (wheat, rye, oats & barley). Unfortunately, they do not have a cure and it does not go away. I have had several people ask about the difference between having the gene and having the disease. This is how my physician explained it to me: If you carry the gene, assume you have the disease. Many doctors wait until there is a symptom (i.e. diabetes, cancer, rheumatoid arthritis) to diagnose the disease. My doc said it's just a matter of time. The more wheat they consume, the more complications they will have. So, why on Earth would I continue to feed them wheat?
I agree with our doc! I do believe Carson already has the disease. I have seen symptoms with Alex (hand tremors, rash on cheeks, concentration issues) and I certainly don't want to wait until one of them are diagnosed with Type 1 Diabetes to do something about it. So, as far as we are concerned they both have Celiac disease. It seems pointless to me to "wait and see" what happens.

Nathan & I are awaiting our results, but one or both of us will also have Celiac. It is highly genetic. I won't be surprised if we both do.

I am so thankful we have answers! I am overwhelmed and of course sad to know that both of my "perfect babies" have a disease that will change their lives forever. Now we understand what Nathan's parents went through when he was diagnosed with Type 1 (obviously on a much smaller scale). I wish I could take it away :( But, I can help! We will be come a "GF" (Gluten Free) household as soon as I meet with the nutritionist and get a plan.

The good news:
1. We are going to be crazy healthy eaters. There's the silver lining.
2. We caught this early (it takes the majority of Celiac patients 11-20 years to diagnose)
3. We have time on our side...they are young and hopefully we can prevent the additional diseases by eliminating the gluten.

Here is a great article that explains the gene & disease difference:
http://www.celiac.com/articles/21521/1/How-Early-Can-Celiac-Disease-Be-Diagnosed/Page1.html

I am learning so much through this process. I believe we will find other family members that have the disease and I hope and pray it can help. Please pray for patience, understanding and great resources. This will be quite a new life for us, but I am ready! Love you all!