3 day excitement

It is hard for me to believe that the adventure is almost here. Just 2 days and a wake up. My body is ready as it will ever be without having been on the road for days. I have all the equipment that I need, some that I don't and some that I just want, like my air horn and the bike alarm.
The problem I am having now is turning off the brain so my body can rest. I am sure you have all been here. What am I forgetting? Oh yes, I need to call so and so. And just now, I remembered I still need to stop my mail!
I am re-routing, all be it small changes almost every night as I receive offers of lodging along the way. I got 3 more last night!
I almost wish I had a day or two off before hand just for preparations. Most of it now is just the simple questions. How many changes of clothes, what shampoo, what other clothing to take? What ever I choose I will make do with and note for the future, not that I am planning on doing anything Never Say Never?

11 days to go

The weather has turned cold here again and I have to admit that it makes me a bit nervous. I am strictly a fair weather rider, that is why I picked the beginning of April for the ride. not too hot, not too cold. This morning would have been too cold for me. If you can see your breath it is way too cold for me!
I really don't have a lot to tell. I continue to hit the gym every day that I can except on Wednesday. Wednesday is my day for Argentine Tango and that is not negotiable. I am hoping it will warm up for my last week at home so I can just ride my bike loaded around here for awhile to get use to the load. If not, I figure it will get lighter everyday and I will get stronger too!
I am getting lots of moral support from every one, family, friends and co-workers, even lots of new supporters/friends, I feel like the luckiest woman on earth! Oh how blessed I  am!

Update on Clay

February 11th we made another trek to Driscoll Children’s Hospital in Corpus Christi to see Dr. Wang, Clay’s neurologist. He is amazed that someone with so little muscle is still walking on his own. Clay weighed in at 65lbs and was 64.5 inches tall making his BMI 11%. Dr. Wang said that he has NEVER seen anyone with such a low BMI. He has ordered another round of test to get a molecular diagnosis, we are still trying to understand what type of Congenital Muscular Dystrophy Clay has. He put in the order but like the last time we expect Medicaid will deny the testing. If that happens we will have to figure out how to pay for it ourselves or go without and see what else we can do. Right now we are just in the holding pattern until we hear back from them. Dr. Wang wants to start seeing us every 6 months versus once a year. 

February 25th We returned to Corpus Christi and The Driscoll Children's Hospital to see Dr. Nolan our favorite Pulmonologist. He called me yesterday to let me know that he got the results back from the latest sleep study. Clay now has a couple of new diagnosis. On top of it all he also has Obstructive Sleep Apnea Hypopnea and Central Sleep Apnea.

Clay will be using a BIPAP Ventilator every night. The BiPAP must be approved by Medicaid before we will have it. Until then Every night Clay sleeps he is at risk of brain damage caused by the lack of oxygen getting to his brain.

This was the good news. The bad news is that Clay now has Atelectasis of the right lung. Meaning in his case that the lower lobe of his right lung has collapsed from the fluid buildup. There is really nothing to be done for it that we aren’t already doing. Dr. Nolan now wants to see us every 4 months instead of every six. Now we wait for Medicaid to approve the BiPAP.

March 2nd, In spite of all of the new complications Clay competed at the Weimar Fast Relays. Weimar Fast Relays is a track and field meet that is put on by Weimar FFA for Special Athletes.  Athletes of all ages and abilities get to participate in running events (with and without walkers), wheelchair races, softball throwing, tennis ball throwing, and long jump. Clay competed in the 25m and 50m running race, and tennis ball throw. Metaling in all events. Most importantly having a wonderful time!

On March 4th we got the call that Medicaid approved the BiPap and we would be picking up the machine on the following Monday. We finally get to sleep! Clay is sleeping through the night and waking rested for the first time in a long time! We are still waiting to hear about approval for the testing but we are hopeful.

 

(Obstructive sleep apnea-hypopnea syndrome (OSAHS) is characterized by repetitive episodes of airflow reduction (hypopnea) or cessation (apnea) due to upper airway collapse during sleep. 1  

(Bilevel positive airway pressure (BiPAP), commonly referred to by the trademarked names BiPAP and BIPAP, is a form of non-invasive mechanical pressure support ventilation that uses a time-cycled or flow-cycled change between two different applied levels of positive airway pressure.  It generates inspiratory (IPAP) and expiratory (EPAP) pressure gradients that complement the patient's own respiratory cycle, optimizing the lungs' efficiency and reducing the work of breathing. BPAP has been shown to be an effective management tool for chronic obstructive pulmonary disease and acute and chronic respiratory failure.)2

(Atelectasis (at-uh-LEK-tuh-sis) — a complete or partial collapse of a lung or lobe of a lung — develops when the tiny air sacs (alveoli) within the lung become deflated. It's a breathing (respiratory) complication after surgery.  Atelectasis is also a possible complication of other respiratory problems, including cystic fibrosis, inhaled foreign objects, lung tumors, fluid in the lung, respiratory weakness and chest injuries.  The amount of lung tissue involved in atelectasis is variable, depending on the cause. Atelectasis can make breathing difficult and lower oxygen particularly if lung disease is already present. Treatment depends on the cause and severity of the collapse)3

1 (http://www.mayoclinicproceedings.org/article/S0025-6196(11)62751-1/abstract)

2 (https://en.wikipedia.org/wiki/Bilevel_positive_airway_pressure)  

3 (http://www.mayoclinic.org/diseases-conditions/atelectasis/basics/definition/con-20034847)

Small Town Life

I grew up in Brownsburg Indiana, a small town outside of Indianapolis. It was the typical suburb. Our neighborhood was the one where all the homes looked basically the same and almost everyone had toys and or bicycles in the yard. We would play with the neighborhood kids for hours and hang out on front porches. A regular summer day would include at least one trip the the "corner" drug store downtown and then just a little further to the town park.
As I grew older my bike rides would get longer. I remember speeding down the hill on Tilden past what had been the cement plant then around the back roads all the way to the park off 21st St, where the church would have Sunday Picnics.
My biggest ride that I remember growing up, was one that I took to see my brother. I rode from home to his house outside of Plainfield. It was a little more than  10 miles.  Our mother thought, it would be awfully hard but she let me "try", with the stipulation that I would be very careful. I don't remember how long it took me to make the ride. I remember thinking how hard it was.
I can only imagine what my parents would think of my adventure. My father Robert Standiford, would be tagging along taking pictures at every turn, just as he did during Band trips with school or the Little League pictures he took. My mother, Roberta Standiford, would be worrying while she was packing snacks and camping gear and bandages for me.  I know that they both would be waiting at the end of the ride and busting with pride, if they were still alive. But I know for certain both of them will be watching over me throughout my journey.

One Month

In the morning it will be one month or 31 days until I start "my Adventure". I go through mixed emotions every day. I know this is going to be the most physically grueling thing that I have ever done.
Actually, I thought that until this evening when an old friend, Russell Spalti, reminded me that once many years ago I lived and breathed the 8 hardest weeks of my life in Paris Island. United States Marine Corps Basic Training. I survived that. It changed my life forever. All those years ago I just knew I could do anything. It turns out I could with a lot of "encouragement and directions" from my drill instructors.
This trip is going to test me my strength, endurance, courage and shear will power. Even though I have been training for this, I am sure there will be times when I want to give up and I won't have that old DI Gunny Buckley, standing over me encouraging me to continue. So, spread the word, if they see me out there to give me a nod, a thumbs up, a simple smile or a parade wave. I will gladly return in kind along with a ring or a honk. This is a just a lowly 3 weeks. 21 days on the road is gong to be a long long ride.
So, Thanks Russ for reminding me. Why do we do it? It is All because We Can!