Still here, still going
- Kabrina Ishmael
- 1 day ago
- 6 min read
Hey fam! If you are
still here with us 4.5 years into this journey you are definitely family! So many things going on here, lots of changes, and I cannot wait to share with you all some of the cool stuff Jared has going on.
If you read the last blog in December, you know one of our biggest goals is to have Jared be as independent as possible...safely! We continue to work on safe transfers, standing balance, walking and eating!
As we have come to an end with the group that had been treating Jared since October, Rehab Without Walls, we move into uncharted territory.
But, before we get to the right now, let me fill you in on all the things he had been doing from the last time you visited here to now.
SPEECH
Christin continued to pour everything she had into Jared. She loves to push his buttons and would love it if he got to the point of yelling at her. She was working with him on vocal exercises, taking advantage of when his voice was going and in a talking mood. Unfortunately that was not every day. Their sessions were jam packed with breathing exercises, tongue movements, voicing, reading, writing, picture identification; and music was almost always playing, and we know she was hoping Jared would just start singing to her. We ask for continued prayers in that department, that Jared will just get back to talking to us like we know he is capable of. As we have said before, this would be the game changer and open up more opportunities and give him back much of that autonomy we know he craves.
PHYSICAL/ OCCUPATIONAL
Trena and Bethany were whipping Jared into shape. Strength and endurance have been the name of the game. If you follow me and now Jared (jaredsawall_tbijourney) on social media, you have probably seen the weekly videos of him doing things ranging from floor work, getting up on his knees from his belly all the way to pushing himself up to his wheelchair.
Outings at putt putt golf, doing laps around Scheels sports store, even climbing stairs; and visits to the YMCA. Lots of walking using an upright walker, up and down the street, and using some of the equipment we have in the garage. I have lots of videos to share with you all!
Next up, some videos from a few of their outtings...
On to the current happenings...
Jared has been out of therapy since the end of March. It was due to an error on the insurance side of things, and then turned out to be a huge headache that we were not actually able to fix. If you have been with us on this journey you already know how many woes we have had dealing with insurance coverage for various things for Jared. Back when he was in a coma living in the LTAC and then the nursing home, that is where we met some of our biggest insurance obstacles. And that is where this amazing community helped us out.
If you are new here, I'll give you a refresher...
Insurance was no longer willing to pay for Jared to stay in a SNF (skilled nursing facilitiy), also known as a nursing home. And, we were still in the covid era, so it was already difficult finding a place for him originally. Since Jared was not showing any improvement in his vegetative state, insurance was cutting off and we were going to be forced to pay out of pocket for Jared to keep a bed there. We had just been in Medical City Plano for the New Year holiday for Jared to get his VP shunt placed and we were not going to be able to go back to the nursing home, without a months payment ahead of time. Jared had his tracheostomy and a feeding tube, so placement somewhere else during covid was not going to be a simple task.
My co-workers (anesthesia providers, nurses, and fellow scrub techs) raised money with out me even asking and insisted I set up a GOFUND ME, and that is how we were able to keep Jared in that facility. For Jared to lay in a bed, not receiving any kind of therapy or anything special other than his tube feeds, it was costing a little over $10,000 for a month for him to stay. And as much as we wanted to bring him home, with him having a trach and not having his bone flap on his skull yet, I was not prepared to safely take care of him at home. So when I call this community family, this is why! You all made it possible for Jared to continue being where he needed to be at that time, your support and prayers have made the difference and still are, so please continue to show up here, and pray for Jared and my family, IT'S WORKING!
We could use the prayers to help us navigate what is the best next step for Jared on this recovery road. Does that look like more therapy in the home, does that look like outpatient therapy somewhere, does that look like a little sebatical for Jared? God has not steered us wrong yet, so I will let go and LET GOD!
Since, the last blog post (I know, I gotta be better at doing these more often), we made it through the holidays, had some family over; cousins, aunts and uncles, my younger sister, and my grandma...pictures to follow.
Ok, now that we got some of the flashbacks covered, let's get into the NOW-ish!
We have had a few outings of our own, along with the regular doctors appointments, a couple g-tube swap outs (as we are really hoping to get that out permanently), but mostly just therapy for Jared since we last posted! My sister got tickets for us to go to the Grand Prix races, where we had beautiful weather, and a new experience of of getting to see just how fast and LOUD those cars are!
Since, he has not been getting therapy for the past few months, we have been doing what we can at home on our own! Some days look great and we get a lot accomplished and others not so much, but just as life as its own ebbs and flows so does this part in our journey.
We have made some changes in the garage to try and utilize the gym set up we have. However, with the Texas summer underway it is toasty out there so we try to get in when we can.
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PRAISE REPORTS
We had two treadmills donated to us! The first one that was donated to us a couple months ago died, but within a few weeks, someone else donated their treadmill to Jared! The treadmill has been a game changer in Jared's at home therapy. When he was doing PT, his therapists were really working on his strength and endurance with his walking. And since not being with RWW the treadmill has allowed us to continue working on that with him.
I have been able to change my work schedule to be at home more during the week to help out with Jared's "therapy" more.
We were able to give back the standing frame that was donated to us from Able Faith! Jared originally was denied one from insurance, and ABLE Faith gave us one! Jared used that standing frame for about 2 years, and now he is at a point where he doesn't need it. We do still work on his standing balance but it has gotten so much stronger over the last year!
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PRAYER REQUESTS
That we are able to find the next best place for Jared to continue getting therapy. Whether that be in the home, or at a facility.
Continued prayers for strength in eating, we would love to get that g-tube out of his belly!
Prayers Jared finds the want and the ability to keep using his voice and getting better with communicating in any form.
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For anyone who might be new here, or wanting to know how they can help, here are a couple options:
-- The link to Jared's Amazon gift registry here, I have updated it with Jared's daily needs.
The most needed items (due to everyday consumption) are briefs, wipes and the various vitamins and supplements. Contributions and/or gift cards are also very helpful for random items that pop up as well.
-- And his GoFundMe is still alive and always useful.
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