Ups and Downs- The Determination Gene

Life is really full of Ups and Downs.

A major event happened a few weeks ago, my parents ran a half marathon!
They are amazing people who wanted to do something to help. They came up with the idea to fund raise for Mark Henry's ongoing medical needs, and were determined to make it happen. So they set to work training for the race, walking 5-10 miles every other day for months leading up to the event.

We put together a mailing to friends and family and amazingly you were all so generous and the support began to arrive. It was so motivating for them as they were training and the encouraging letters and notes started rolling in. I was in shock and awe everyday as I got an update on 1. how far they had walked and 2. the generous people that had sent in their support! Friends flew in from Chicago to run the race with them, they also did some fundraising, great people Beth and Don, thank you! The fundraising even spread overseas where my Aunt Angie did several events to raise some funds, thank you!

So thank you so much, to many of you that supported this amazing event1 We well over exceeded our expectations and beat our goal of $10,000. This will help with ongoing medical costs for equipment, therapies not always covered by insurance and also help to establish up a special needs trust fund for Mark Henry.



The day before the race, we had very sad news from England that my grandfather, John, my Mom's Dad passed away. This could have put a damper on the race, but yet again proving the determination gene is in our family, the race went on. They finished in just under 3 and a half hours, a great time and even received medals for their efforts. My mom said "I did it for Mark Henry and for my Dad." Mark Henry is definitely blessed with the determination (aka stubborn gene) and it was also a trait my grandfather had! He was an amazing husband, father and grandfather and will be missed, love you Gumps.





A week after the race, my parents boarded a plane to England to be there for the services for Gumps. They had the most challenging task ahead to enter his home just as he left it the morning he fell ill. He had known about the race and the fundraising efforts and they found on the kitchen table an envelope with a check for Mark Henry. We also knew he had called some of his friends and family to raise some funds even up until the day before he passed. Several of those have contacted us and its amazing to me that even to his last days he was wanting to help and determined to do so.

We also had an appointment at Mayo this week, to get the result of the gait lab study. Unfortunately the news was not exactly what we were hoping for. The team determined although they believe Mark Henry is a strong candidate for the surgery he is not ready yet. He is weak in his trunk, abdomen and therefore would be challenged to manage the rehab, intensive therapy after the surgery. He needs to gain more strength so that if they do the surgery which will drastically reduce the tone (stiffness) in his legs, he will be able to use his upper body strength to compensate for the spaghetti legs and work thru the rehabilitation. If they did the surgery now it would be very hard for him and may not be successful if he finds the therapy too hard to do. So, we will be back to Botox treatments every three months and will work hard at therapy to strengthen him ready for a re assessment in the gait lab next year. We we also be ordering new leg braces, hinged AFOs, same as he has now just larger as he has almost out grown these. Will also be ordering a new walker as he has grown so tall his current one is too small!

This news was definitely disappointing as we have anticipated an planned for this for over a year, to do the gait lab and had mentally geared up for the surgery this year. However, we respect the experts opinion and understand the reason for this delay.
I am now busy planning how we can get Mark Henry the maximum therapy this summer and even looking at Horse back riding therapy and Miracle League- special needs kids baseball!

Mark Henry also started at a new school. He goes to public school just one day a week for an hour and a half and is in a class with 7 other kids with special needs. He loves it but I wanted him to have more time with kids and especially some with typical peers. I have been trying for 6 months to get him into a private program and finally my determination paid off! So he is now going twice a week to this program 3 hours per morning and is in a pre school class with 14 kids! His Personal Care Assistant goes with to assist him and so far he just loves it!
We do have to work a bit on adjusting to the 3 hours, its a long morning. He is working on sitting with the kids for snack, so far has drank some milk but not sure about snack- probably a lot going on with this many kids to watch! He did have a bit of a melt down the other day when it was time to go outside for play. We realized they were putting on his coat to go out and he likely thought he was going home and got upset. so he missed out on outside play, will have to work on that!

We are making baby steps with communication, he has a PECS binder, a book full of picture exchange cards, cards with icons and velcro on the back. He is learning to exchange the picture for the item he wants and making choices for toys, drinks, food etc. He is more vocal but no consistent words yet, signing inconsistently "more", "eat" and "all done". Still using the ipad and hoping to get him using one finger in isolation to point to touch rather than his whole hand. He can swipe but needs assistance selecting. We have several Apps he likes to do and will work on the fine motor skills needs to be more successful with it for communication. The speech therapists are confident he will speak when he's ready, everything eventually comes just in his own time.

So February was a bit of a rollercoaster, as just when you think you know what's coming next... things change. We will make the best of it and that is not always easy to do but easier when you have so much support from those around you and determination that runs in the genes!