Today Marks The 6th Year Anniversary of Jake's Military Accident

Today is Sunday April 5, 2020 and it marks the 6th anniversary of Jake's in-line of duty military accident from El Paso, TX. As you can see our updates are now fewer and farther between, as the progress and challenges have now come to a plateau. 

The plateau has resulted in Jake's medical "Rancho Los Amigos Cognitive Functioning Level" to range and fluctuate between a level 7 and 8. As parents, we are very thankful for this progress Jake has made in 6 years. We continue to model and support Jake with daily living skills and social interactions of experiences to build his life-long learning confidence.

This COVID19 health crisis we are currently experiencing has set back his daily community outings, yet we still get out each and every day to take walks in our neighborhood and within our wide-open spaces of our patio, backyard and pool lounge area. We are also very purposeful in providing Jake hands-on learning experiences of being a sous chef when cooking - his favorite is helping with making homemade pasta from scratch. Also we provide guidance and assistance with Jake of maintaining a simple budget, where he makes a shopping list of grocery items, personal items and specialty food items. He is so proud to be incharge of these budgetary tasks, and making/purchasing these transactions with guidance, as it gives him a sense of purpose and independence. Then when the food and personal items are delivered, he ensures he unwraps them and puts them away in their proper place. To him, when something is delivered to our home, it is like Christmas and very exciting. 

Jake still maintains a very consistent -almost OCD schedule. Yet this vital and important routine provides for his structure and to be in control of his life, which is so very important for all TBI individuals. When his learning day is interrupted, or a routine or time needs to take be changed, it is very difficult for Jake to refocus and let the change pass. Where you and I may get over it within a few minutes or the house, it takes Jake up to an hour or more for him to adjust, calm his mind, and accept the change has to occur. So patience is a virtue in these situations, and planning in any change of routines needs to be adjusted to everyone's schedules.

A healthy diet, appropriate sleep and a daily calming rest time is still essential and consistent routine for Jake. His routine consists of the following:

• Wake up 7:00AM each morning and enjoys coffee, water and light breakfast
• Morning walk from 8:30AM-9:15AM
• Workout exercise and hygiene routine in our in-home gym and his finalized private bath and walk-in shower 9:30AM-11:30AM
• Healthy lunch by 12:30PM
• Afternoon quiet calming time and afternoon daily living skills or a social outing 1:30PM-3:00PM
• Afternoon tea and food treat break, or daily living skill activities with swimming in the pool relaxation 3:30PM-4:30PM
• Outdoor Ping Pong 4:30PM-5:00PM
• Happy Hour and Social Hour 5:00PM-6:00PM
• Dinner and dessert 6:30PM-7:30PM
• The watching of Wheel of Fortune 7:30PM-8PM
• Calming time prior to bedtime 8PM-9PM
• Lights out by 9-9:30PM each night by Jake's choice as his brain is so tired

Also taking brain breaks is essential for Jake, which includes listening to music, reading a short portion of a book, and watching music and drumming videos. This entire routine is a true reflection that Jake's Army soldier mentality is forever instilled within him, and how he has adapted to accommodate to his disability. 

The greatest change that has occurred this past year, is Jake's high pitch hearing sensitivity to environmental sounds and noises. The neurologist have documented Jake's heightened sensitive of hearing is due to being in a coma for almost three weeks, and this is why we say he has "rader hearing" and it is so true. Yet due to all the poly-trauma of Jake's past broken bones from the accident, the heightened sounds and pitched noises (like a female voice, car squealing of brakes, the Kcup coffee maker, wash machine etc. ) actually resonates the noise and vibrations through his body causing increased nerve pain. I know this may be hard for some of you to understand, but this is true, and these are the same type of nerve damage pains that amputees experience with sound and noise irritations through vibrations.

After almost one year of trying to help him find a solution for this painful situation, we have tried strategies of Bose conversational earbuds- which have worked very well, to isolating him from social groups of more than 3 people, and for myself to speak more quietly with my female voice. Yet these three types of strategies, can cause Jake to be more anti-social - which not good. So we preserved and worked with Barrow Neurological Institute in Phoenix, AZ, where an amazing neurological worked with Jake over several appointments and found a nerve pain non-addictive medication to control the heightened nerve pain in his body. And it is working!!!! It is not perfect, yet it has decreased his pain by 75-80% and has allowed our social interactions and community outings to be so much more enjoyable as a family, or when we each take Jake out independently.  *Please note - Barrow Neuro team of doctoral residents also just created the approved PPE 3D printed N95 alternative face mask device, and ready for the mainstream! You can even get the template here and create one if you have access to a 3D printer, so you can can donate your final product to the healthcare profession. 

We are very thankful for the small gains Jacob is still making, even though they are far and few in-between. Yet knowing that he is in a place that he can demonstrate his independence safely, vocalize that he can be in control and wanting to try new experiences, and expressing at times when he needs guidance and support from us as parents- fills my soul with gratitude that he is living a quality and happy life most of the time. 

I know Jake and our family will continue to face futuristically challenges with more knee, ankle and foot surgeries, changes in pain management and seizure medications, and support of his social and emotional learning well being. Yet this is the task we signed up for as parents and when deciding to have children. It is our parental responsibility to provide, guide and care for him when he can not for himself. 

Be well everyone, put your family's health and safety first and stay home during this COVID health crises.

Jeff and Naomi Harm