#StriveToBe

Last Sunday, as a family, we watched the Face to Face event broadcast by the Church of Jesus Christ of Latter-day Saints, which detailed the changes that are being made to the Children and Youth Program. Our children and youth are capable of becoming excellent leaders and disciples of our Savior, Jesus Christ! 💜💜💜 #StriveToBe  (If you want to see excellence in action, watch the recording at the link above!)

This week was busy! Even though Ryan only had one physical therapy session this week, every day was still full of appointments, errands, and odd projects. He still gets exhausted very quickly, but little by little he's able to do more at a time. In physical therapy, we are still noticing improvements in his balance and strength, but those improvements are coming at a much slower pace now (which is to be expected). Here are a couple of videos of Ryan's latest achievements.

The stretchy band around his legs, just above his knees, offers a lot of resistance, which has been difficult for Ryan to overcome. But, as you can see, he's doing it! In this exercise he's supposed to keep his feet at least hip distance apart as he walks sideways.

The dreaded "walk backwards on the balance beam" exercise! But notice how he prevents himself from falling!

And now he can do it with more confidence! Step by step!

Now for the big news I alluded to two posts ago: according to Ryan's gastroenterologist, if the events of this summer were a movie, he can't say for certain that celiac disease played the starring role, but it was definitely in the credits (and most likely a big part). There is a medical condition related to celiac disease called "gluten ataxia" where the antibodies released in reaction to the gluten attack the cerebellum in addition to the small intestine. This condition is controversial, and not widely accepted by all medical practitioners, so we'll discuss it in further detail when we see Ryan's neurologist next month, but if you do some research online you'll find how well it fits in with the events that occurred with Ryan this summer. The damage to Ryan's cerebellum as shown in his MRI's had confused one neurologist because it appeared on the part of the MRI that shows chronic damage. This may have been something that Ryan was dealing with for a long time, and his brain was just fighting to find ways to work around it (until the damage became too great). Also, with celiac disease the body doesn't get the vital nutrients it needs to protect our neurons (fat-soluble vitamins). In connection with the endoscopy results pointing to celiac disease, Ryan's blood test results confirmed that diagnosis. His TTG AB IGA (immunoglobulins/tissue transglutaminase) came back at greater than 100 U/mL. A result of 0-3 is normal, a result of 4-10 is weak positive for gluten-sensitive enteropathy, and a result greater than 10 is positive. Once again, Ryan is being an over-achiever. 😉

Going on a strict gluten-free diet is incredibly important for Ryan. We have to be careful about what pans and utensils we use now, because gluten can harbor in many places. We have to watch out for labels that say, "May contain traces of wheat" or "Processed on equipment that also processes wheat." Cross-contamination is a big deal, as even the tiniest amount of gluten can cause severe damage to Ryan. It's comparable to someone who is deathly allergic to peanuts or bee stings -- it doesn't take much of an allergen to cause a significant reaction. Going out to eat at restaurants, even when they claim they have gluten-free items, is discouraged because of the risk of cross-contamination. We were told that the general population has about a 1 in 100 chance of having celiac disease, and that first-degree relatives of someone with celiac disease have about a 1 in 25 chance of having celiac disease. A simple blood test can help diagnose this condition, as long as the person being tested is eating a gluten-containing diet when the test is done.

Ryan's small intestines showed pretty severe damage in his endoscopy. It will take at least several months of being on a gluten-free diet for them to heal.

To end this post on a happy note, we had a wonderful Thanksgiving dinner with Ryan's family yesterday. Then we played a game of "drop the cool whip in someone's mouth from as high above them as possible"... 😂 I'm sad that I didn't get more pictures, but here is the result from Cole's turn in the game:

Have a beautiful Sabbath day! Remember that you are a child of God, and He loves you and wants you to have joy in life!