Tyler's trials and triumphs

So Tyler and I made another trip to CMH for a little Rehab, Physical Therapy and a Neuro visit.  They had added to the schedule another EMG, but on his upper body this time.  I was in pain just watching him.  He's one tough cookie, no matter what he thinks.

This was just one of the many spots of needle insertion today.  He was also poked in the arm, abdomen and the neck.  Yeah, that one freaked me out a little.

The doctor during the EMG mentioned that Tyler is showing signs of Myotonia, or a neuromuscular condition in which the relaxation of a muscle(s) is impaired.  Basically, his muscles are working all the time, even when they are suppose to be at rest.  This term was also mentioned later at the Neuro appointment, along with the term Gower's sign.  This relates to his lack of proximal muscle strength, especially in his lower limbs.  He also must "walk" his body to stand up from a sitting or laying down position.  For most of us, this is easy; second nature almost.  We don't have to think about how to do it, we just do it.  For Tyler, he doesn't realize what he's doing, he just does it because his body doesn't work the normal way everyone else's does.  On a more positive note, he has gained 10% flexibility over the last 6 weeks with his physical therapy.  :)

The next step for Tyler is a muscle biopsy scheduled for July 12. Although a relatively routine procedure, it is still a surgical procedure so there is risk involved. He will have a pre-anesthesia test sometime before the actual day to ensure his there are no complications.  From now until then, the doctors will have more tests run, mostly genetic testing, keeping the Myotonia and Gower's in mind.

Please continue to keep Tyler in your prayers as we make our way through this maze of questions and answers, more questions and answers, to find an outcome that proves successful.  Thanks in advance!

God Bless!

Update on Tyler

Instead of trying to call everyone with news, I thought I would leave it here.  For about the last 6 months, we have been back and forth between Children's Mercy South and Downtown trying to figure out what is going on and how to best treat it.  For those of you who don't know, the last couple of years has been physically difficult for Tyler. Tyler is just shy of 17, just under 6 feet tall, weighs about 125, and wears size 11 shoe.  This boy should be ruling every aspect of athletics, but he cannot pass a physical.  He physically cannot pass.  Not even a squat.  We thought at first he had just grown super fast in just a short amount of time.  No such luck.

It's skipping ahead a little, but I will just cover the basics.  We did some blood work, had a CT scan, had an EMG, which tests the muscles and nerves in his legs, back and feet to see if they are working, had an MRI of his spinal region, from top to bottom, had another EMG, the first was giving false positives from the physical examination that was taken.  Basically, the tests should that his muscles and nerves were working, but when asked to do a physical task, he cannot.

We are dealing with the neurology department at CM (Children's Mercy); they have ordered another series of blood work plus a urine sample.  Yeah, Tyler is so very excited about this part.  I don't understand all this medical jargon and what the testing will show, but the doctor mentioned amino acids, ammonia and something about metabolic.  I really don't know, except for what I Googled. :)

Basically, Tyler is a guinea pig of sorts.  Of the 1500 or so cases they have done genetic testing for, 9 of these cases have attributes similar to Tyler.  Bad news, these cases have still not had final answers to their origin or complete success.

Please continue to pray for Tyler.  Pray for wisdom with the doctors that they can quickly and successfully find a solution to the problem.

Thanks for all your continued love and support.

Les Misérables - I cannot contain my excitement any longer....

15 on the 15th

Sydney, my oldest daughter, turned 15 on September 15th at 4:11 p.m. to be exact.  This beautiful, smart, amazingly talented little girl is turning into an awesome, fun-loving young lady.  What joy, heartache, laughter, tears, smiles and fun you have brought into our lives.  Everyone says that you are the spitting image of me; I am still debating if this is good or bad!  :)

I cannot wait to see what life has in store for you in the future years.  God has big plans for you and I hope you accept every challenge with all the heart and soul of the true inspiration that you are.  Do not change who you are.

 Be yourself.  People will either love you or hate you.  That fact you cannot control.        

 Give of yourself and help those who need it.

 Be kind.

 Be understanding.

 Love with your whole heart.

And never forget, no matter what, I am proud of you and will always be here.  

Happy 15th Shoog!

Labor Day Fun in the Sun

As a kid, my favorite times with family were spent at our cabin outside of Galmey at Pomme de Terre.  So many memories and fun times were had by not only my own family, but with cousins, aunts, uncles and grandparents alike.  I cherish these times and want my own children to be able to do the same.  Our annual Fall Clean Up is another time where we can enjoy each other, fellowship with wonderful food, and make more memories.

This Labor Day weekend, Rod and I took the kids to the cabin for a much needed getaway.  Despite the weather, yes it rained all day on Saturday, we had a wonderful time.  So many of these times were spent on the porch swing, singing along to our favorite tune, or watching the squirrels jump from tree to tree.

We met up with some friends on Saturday night for a cookout; they were staying at the Pittsburg State Park campground.  Ribs, loin, potato salad, mac and cheese, pasta salad.  What a feast it was!  Because of the busy water on Sunday, we elected to hold off on the tubing and knee board until Monday.  We found a couple of coves to swim in for the little ones and enjoyed the sunshine.

These times we have together are a gift and I cherish every one of them.  I want them to remember and have the same wonderful experiences that I had growing up all those years ago.  I thank my aunts for keeping the cabin up and running for the future generations to enjoy.