April Fools?

CR0_8082Flying through the air? One handed push up? Nope, diving catch during Spring Training for the Rockies, March 2019. I will work on detail blog updates from January 1, 2019 to first week in April, including Jim’s surgery for a feeding (Peg) tube on April 2. Stay tuned…

SO finally….THE UPDATE!

I wanted to write an update on all things Hilliard for the first quarter of 2019 and before I had any inspiration to peck out words and feelings on WordPress, it is the middle of April.

First, I will update on Jim’s Surgery April 2. The night before, we had a lovely Hilliard family gathering for dinner. We always love the support we receive when we are there for medical trips. Thanks to Mike and Claudette for the constant assistance and company while we were in the hospital. We love you all so much! After a 5 hour wait in the admitting waiting room, we were finally placed in a room with a really sweet guy named Brian, who was also getting a Peg tube placement and has ALS. His sister Missy was with him and we began that bond that only ALS patients and families can understand.

Surgery went great, but no one informed us that this would be a two step procedure. He got the peg tube, along with about 18 inches of tube attached. Not what we were expecting! So as we manage the intricacies of cleaning and flushing the hose…after eight weeks we head back to Houston to have the low profile, Mikey Button placed. Should be super easy, outpatient and only a few minutes. Fortunately it is the same time we are scheduled to go to Houston for our quarterly ALS Clinic in June.

January: The beginning of 2019 was smooth and easy. The highlight of the month seemed to be the arrival of our Sleep Number Bed! We love our remote control dual king bed, complete with heated foot of the bed and adjustable firmness. Watching TV in bed was never more fun! The end of January meant that Sam would pack up and leave for Scottsdale, Arizona. We love having him home for the off season, and this year it was too short! He packed up his truck and drove to AZ on January 27. We already were counting the days until our visit to AZ in March!

February: We traveled to Houston for our ALS clinic visit on February 7. We always stay the night before in the Marriott Hotel, adjacent to the Houston Methodist Hospital, so that we can arrive first to line up for Clinic. Doors open at 7:30, but we have learned that it is first come first serve! We have met several friends that we continue to stay in contact with in those precious hours before the door opens! Clinic environment is very social and lots of people catching up and having coffee and lunch provided by volunteers. It is a well oiled machine, and within a few hours, we have seen every discipline needed at this time. We usually see the Neurologist, Pulmonologist, Occupational Therapist, Speech Therapist, Physical Therapist and a few others that won’t make much sense to you readers! After meeting with the Neuro Doc, she recommended that Jim go ahead and schedule for the Peg Tube Placement, since his respiratory functions had slowed a bit. So we scheduled it for April 2. They are very pro-active at Methodist ALS clinic and we have been pleased to be a part of this clinic so far. Four times a year is no big deal and the cherry on top, is a Hilliard family dinner with our Houston Peeps, each visit!

Tracy and Sam both had birthdays this month, Tracy on the 5th and Sam on the 21. We have enjoyed our visits to Blake and Tracy’s to see Charlie and he is growing and changing so much! We would have to wait until our visit in March to AZ to celebrate with Sammy.

March: Could not come soon enough! We loaded up the car, complete with R2 D2 and enough clothes to stay 6 months!  We leased a VRBO that was really close to Old Town and enjoyed nearly two weeks of MLB games and dinners with Sam. Claudette came for a full week and our friend, Don Guion also flew out for a few games. My friend Tana Herrington lives in Scottsdale and we always get together for a game or dinner out. We always enjoy our time with Tana and Brent and they introduced us to a new restaurant that will surely be a favorite going forward! Virtu Honest Craft. Simply wonderful. Tana and I spent one day going to the Botanical Gardens ( amazing cacti!) and had a lovely lunch on the patio.

Baseball of course was the main attraction, and we got to see Sam play against the Rangers, Cubs, Brewer, Angels and Giants. One highlight for me was having the privilege of meeting Steve Gleason, former New Orleans Saints Football star and now current ALS patient and warrior. He happened to be at a Chicago Cubs game vs the Colorado Rockies, and our son Sam was playing for the Rox. Since Jim’s diagnosis of ALS last year, I have met many people who have this incurable disease in various forms of progress. I have never met anyone who uses the Eye Gaze technology and is totally immobile except for his eye movement. I have followed Team Gleason for a while now and have admired his work on finding a cure and his collaboration with updating technology to help patients maintain their voice. He was recently awarded the Congressional Medal of Honor, by President Trump, the first NFL player to receive this honor. What a treat to meet Steve and his sweet family and at a game of baseball that we both love. The second photo is of Steve’s son, holding his daddy’s hand over his heart while they played the National Anthem. I am NOT crying….your crying!

The last week was a bit more boring for us, but not for Sam. He got to go with the Big League team for a special exhibition game in Monterrey, Mexico against the Diamondbacks for a two game series, sponsered by Major League Baseball.  He said it was super fun and he got to fly on the Rockies plane and see a part of the world he had never been to. When he came home late Sunday night he came down with a bad cold and was sick for several days. We did spend our last night there having a lovely dinner at Elements with a beautiful view of Camelback Mountain and had a late Celebration for Sam’s 25th Birthday. We love our time in Arizona.

We arrived home on the 15th of March just in time for an awesome St. Patricks day meal with sweet friends!  By the end of Spring Training, Sam had once again earned a promotion and was placed ont the Rockies AAA roster, The Albuquerque Isotopes. He still remains on the 40 man roster and is a call up away from his first MLB game during the season.

We enjoyed celebrating Charlies First Birthday at Blake and Tracy’s home with a lovely party with family, presents and cake. The pictures tell the story so much better! Happy Birthday Charlie!! “Being One is SO FUN!”

April: On April fools day, we made the trip to Houston to have the Peg tube placed and you already know that story.

The only other milestone we marked in April, was the one year anniversary of Radicava Infusions. Jim began the two weeks on, two weeks off rotation of daily Radicava infusions on April 15, 2018. He still drives himself to North Richland Hills each infusion day and I have discovered, he really likes flirting with the nurses! I think that might be why he doesn’t want me to go! We still really don’t know if the medicine is slowing the disease or not, so we are going to do it as long as it makes sense. Though Jim has seen some decline in function across the board, ALS still seems to be progressing slow and we are so grateful for that!

There are so many Scriptures that we hold onto, but this one is a staple.

Proverbs 3:5-8 
5 Trust in the Lord with all your heart,
and do not lean on your own understanding.
6 In all your ways acknowledge him,
and he will make straight your paths.
7 Be not wise in your own eyes;
fear the Lord, and turn away from evil.
8 It will be healing to your flesh[a]
and refreshment[b] to your bones.

We LOVE OUR TRIBE! I cannot say enough about our friends and family who continue to pray for us, love on us, support us, feed us, entertain us and all around are the best tribe any one could ask for! We love you all and are especially grateful for the Lawrence’s, Veigel’s, Ortegel’s, Loveren’s, Guion’s, Barksdale’s, Bulick’s, Horton’s Harris’s, Ramsey’s Brentlinger’s, Crudup’s, Personetts, Craines, Gils, Nicholson’s, Deskin’s and Minnerly’s. Without mentioning all our family, I am sure I am leaving someone out…but if you are in our life in any way, you are appreciated.

Some fun things are coming to support awareness for ALS and the fight for a cure….May is ALS Awareness Month, and although we are VERY AWARE of it…..we want others to know how they can support us, and all of those livng with ALS, in this journey. Stay tuned!

Until next time….

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