It's Always Something!

So......sit down for a long story........

On October 6th I took Ethan to the Down Syndrome Clinic at UAMS in Little Rock.  The clinic is for teens and adults.  It took me nearly five months to get in, so I was not going to miss that appointment!

Meet Dr. McKelvy (I love him!!) - he is kind, knowledgeable and loves people with Down syndrome!

 

I met with Dr. McKelvy, the nutritionist, and the PT - since Ethan is under great care with his hearing, sleep apnea, and cardiology we didn't meet with those people.

Ethan also had to have a long, full battery of blood tests done.  Being prepared, I prepped him with some cream so the needle poke wouldn't hurt.  Sometimes it is difficult to get blood from him, so we came prepared.

I should not have worried, the young man drew blood like a pro.

Unfortunately, less than a week later I got a call from the doctor.  The blood work did all look favorable.

Ethan's blood work suggested (strongly suggested) that he has celiac disease.  I took him back up to the clinic in Little Rock immediately so we could get some more work done to double check.

While waiting, I prepared for the worst case and started to "de-gluten" my kitchen.  Where to begin?  I decided to start at one end and work my way around.

I checked every single bottle I had in the cupboards - including medications and vitamins.  The vitamins I have been giving him contained wheat - so out it went.

The spice cupboard was next.  I literally threw out a bag of spices I could no longer use.

Including my most very favorite!  Goodbye, Tony, it has been good knowin' ya! And, yes, it is great on everything.

Every bowl, utensil and container that was plastic, wood, or rubber got put in the box.

Allowed to stay were the items that are stainless steel.  With the exception of my baking pans and colander (a great colander I might add) - they had to go.  Including pizza pans and restaurant quality baking pans that have been my kitchen buddies for a long, long time.

I couldn't throw out my cast-iron - I just couldn't!  So I put them in the oven and set it to "self clean" - it baked every last possible micro-fiber of gluten off and I am re-seasoning them.  Some things are just worth the extra effort!

It literally took me all day.  Measuring cups and spoons (and if you have seen my kitchen you know I had a TON of them) are gone.  I went to Walmart and bought some stainless steel.

The toaster and griddle had to go.

Hotpads and dishtowels - gone.

Every cabinet was washed out repeatedly.  Sponges were tossed.  Plastic containers for food - tossed.  Every bit of grain was taken out of my kitchen.  Every bottle in the frig that may have come in contact with a knife that touched bread - gone.  Soy sauce - gone. 

I could go on and on, but you get the picture.  No more cheerios before bed.  Every label is checked before it is purchased.  Beans and rice have to be extra-rinsed.  Gluten free oats had to be purchased for breakfast.

Ethan, who loves Taco Bowl and Sonic, had to go out to Chick Filet for dinner.  His grilled chicken nuggets and GF waffle fries didn't quite satisfy, but he was a good sport.

Friday night I was hankering for some Reuben sandwiches.  So we tried some GF bread and chips.

It wasn't quite the same, but we can learn to love it when the mood strikes.

Today I made some homemade chicken nuggets - with GF flour.  

We can do this!!  Ethan has been GF every place but school, but officially GF since Thursday - there was no school on Friday and the school cafeteria is prepping a place to prepare his GF meals starting Monday.  He will have his bloodwork checked in 6 months to see how he is trending.  The doc said it would take a year to heal, we just have to be diligent for the rest of his life!  Even cross-contamination to gluten will cause damage.

He has to take calcium, vitamin D, and iron on a daily basis now - until he heals and starts to absorb the nutrients from the food on his own.

Those of you who know me well, know that I have thousands of pounds of stored grain.  Fortunately, others from church are purchasing my storage and my wheat grinder.  That will help pay for the VERY expensive GF products I have to buy, which right now is mostly the flour, oats, and bread - which we really don't eat much of.  We aren't buying convenience foods - they are just too much $.

So, that's what we have been up to.  It's always something, right?!?

14

October 19, 2000 (I don't have any infant pictures, really, it was such a stressful time the camera was the last thing we thought about!)

From cool dude....

to cool dude....(a night out at the movies)

The man wants a pirate costume - the man gets a pirate costume.

And.....never-ending pasta at Olive Garden (which may be his last - more on that in another post).

We feel pretty lucky to have him.  I can't believe he is 14, in some ways it has been a long fourteen years and in others it has flown by.  8th grade - 14 years old - I never would of pictured us here all those years ago when we didn't know what his future would hold.  We still don't in lots of ways, but we have a more clear picture of the path, and it isn't a bad path to be on.

But I can say that about all of my kids - they are all unique, different, and on a path they set for themselves.  Ethan is no different, he just needs us along for the ride more than the others :-)

I love it that he still believes in Santa and gets excited about Christmas twelve months out of the year.  I love it that he is super happy when mail comes and a card has HIS name on it.  I love it that he is always sooooo happy to see you - and it doesn't matter who "you" is - a teacher, a friend, the bus driver, the secretary, or even a total stranger he just met.  He is a good example to all of us.

So Happy Birthday, Big Man.  We love you!

Riding "Special" Style

Yes, we are still here.  And today was Area 6 Bicycling Special Olympic style.  Area 6 is from Batesville, but they came to Searcy and even though none of the Searcy teams came, we decided to take Ethan out of school and let him participate.  I mean, really, the bike shop family doesn't come to the bike ride?  That just wouldn't be right!

The day was cloudy, on the verge of rain, and was just right!  Ethan rode the recumbent because the three wheel trike just didn't seem cool enough, plus we thought he could go faster on the recumbent.

It took a while to get organized.  Some of the teams from up north took a while to get here.

Yes, I thought I had other pictures,  namely the one with his medals, but I am having technological difficulties at the moment.  We will aim for another try later.

I was impressed with some of the riders!  One girl with Down syndrome was all decked out in her spandex and biking jersey - she looked really good!  She rode her two wheel bike like a pro, I was super impressed.  She was adorable.

On another note, I win the "Mom of the Year" award because I planned ahead and brought numbing cream to Ethan's doctor appointment at the Down Syndrome Clinic.  Who knew they had a clinic in Little Rock??  Not I!   But I found out from a nurse at my school and I signed Ethan up.  It took almost 6 months to get in, but it was worth it.  I LOVED the doctor there and all of the other specialists.  They will help guide us through the transition of adolescence to adulthood.  I found out that many children with Down syndrome have active imaginations, so Ethan is in good company.  Also, that rash he always has....well, he will always have it.  Apparently children with Down syndrome have a skin regenerating problem, so now you know.

This is Ethan with the cream on.

And this is Ethan after painlessly donating many vials of blood to be tested.

It was a l-o-n-g afternoon, but well worth the time....plus Ethan got a Sonic cheeseburger for his efforts, so life is good!