We are trucking along in the new year, I cant believe we are already 3 months in! We are settling into our new routine since moving over to a new neuro rehab.
Jared's morning routine looks very different than it used to, from when he was at Pate. Now he goes to therapy from 11AM to 4PM, so he has more time in the morning to get ready. Before it used to be very rushed to get him up and out the door, now he is able to sleep in later but also really work on some of those independent tasks like his ADL (activities of daily living). He is doing great, brushing his teeth, washing his face, combing his beard, and getting dressed with minimal assistance has been a big accomplishment. We do have to help him stand up to pull up his pants but he is helping in ways he did not before. And speaking of this we know he can stand up on his own, he has been doing this more and more at home, which we love, however we have to remind him that although he is getting stronger and we are excited to see it, we still have to be safe. And this is where that standing balance that he works on everyday in physical therapy will eventually come to action.
Last month, Jared had a new swallow study done. It has been since summer and that is when we found out Jared was having so much trouble swallowing, and that is was basically taking him 5x more work to swallow one bite. So we had taken a few steps backs and began to carefully work with him at home on easier foods and assisting him with the feeding task.
After this most recent swallow study, Jared got to move back to a level 5 diet on the IDDSI (international dysphagia diet standardisation initiative), which is what is also called a "minced/moist" diet, smaller bites in a gravy like consistency is best way to describe it.
With this diet upgrade, he is now able to work on eating during his lunch hour at therapy, rather than an automatic tube feeding. The video below, shows Jared getting to work on some spaghetti (one of his favorites) during his first week of eating at lunch time at CNS, he shocked the techs that work with him during this time at how much he could do... when he wants to!
We have also started with a new Physical Medicine and Rehabilitation doctor at UTSW. After our first appointment, I left feeling very grateful that even though Jared was very sleepy through the appointment, our new doctor took the time to ask tons of questions, evaluate Jared and really look at his history. We are on track for setting up several more appointments with some other specialists to hopefully address some things. A urologist for a possible neurogenic bladder which may be a factor with continence training. Jared did some blood work so we can touch base with a endocrinologist as I am learning that TBIs can really throw off all kinds of hormone levels. A dietician to discuss Jared's tube feeding formulas and new diet changes, this will hopefully give us some solutions to the gut issues Jared has been dealing with for the last few months. And we are going to change up some things and get in with a new oculoplastic surgeon, but first meeting with a neuro-ophthalmologist and a cornea specialist. Prayers for all these upcoming appointments that we are able to get some clarity and answers to some of the things we are dealing with.
March madness! March has been a very defining month for us in Jared's journey, all of which has led us to these moments...1 YEAR OF JARED BEING HOME!
It was last March, that we brought Jared home for good, after being at Pate in-patient for 7 months, it was time for Jared to transition home, and though we were all a little terrified with the changes to come, we were ecstatic that the Lord had made it so, where he was ABLE to come home. So now here we are a year since then, and it really has flown by.
Here is a condensed timeline recap for you guys, when I say March has been a BIG month for us over the last couple years.
March 11, 2022- time for Jared to get his bone flap put back on. We were told by his neurosurgeon that this was purely a cosmetic procedure and for safety reasons, that this would not affect change in his neuro status...MAN WAS HE WRONG, God had a different plan!
March 21, 2022, the biggest day, the thumbs up that put everything in motion! So much emotion was behind this video and I get teary eyed thinking about this day, after this day, we had Jared evaluated, insurance kicked back in, and we got a spot at Baylor Institute for Rehabilitation, and as I have said in the past BIR was one of the best experiences for us!
So here we are March 2024, what does God have planned for J next? We can't wait to see!!!
This month Jared and I will be celebrating 14 years together and next month will be our 5 year wedding anniversary. Since we don't know exactly when we started dating, we use St. Patricks day as a timeline, here our some pictures from our younger years....2010.
Wedding Day, April 27, 2019
We are seeing his therapy days come to action at home, and believe it or not, Jared's least favorite therapy session when he was at Pate, has become one of his best at CNS. The use of his right arm and hand has been progressing, and I can see it when he reaches across his body to grab something, if he bends down sitting or standing to reach for something, when he brushes his teeth using his dominant hand, the way he is wanting to self feed himself and pick up his drinking cup with his right hand.
Jared has a new obstacle, his new, least favorite session, is a therapy session called "education." We are still trying to figure out what the goals are with the therapists that run these sessions, as this tends to be a trouble area. Jared has a lot of active and passive refusals for the tasks they ask him to complete. I asked Jared one day when he came home, why he didn't participate, he simply answered "dumb," so this tells us it is not a deficit, but more of that free will kicking in, and Jared just doesn't WANT to do it. Prayers that Jared will power through these "dumb" tasks and show them that he does know what they are asking of him, and that he can get through it and hopefully move on to something else.
His main speech therapist, Garrett is one of Jared's favorites at CNS, we are working on his phonation, getting stronger with swallowing and just overall communication skills. We continue to ask for BIG prayers in this area, we know being able communicate effectively with Jared will make many things easier.
I want to share this awesome moment, last week, mom was headed back to Houston to finalize her retirement and to do a final walk through on her house, we asked Jared to tell her "Happy Retirement" and he did! This moment made mom's day!
Prayer Requests and Praise Reports
Krissy travels to South Africa, for a llittle R&R and also to some servant work for the Lord. Prayers for safe travels and for her cup to be filled.
Mom has officially retired, finished PT for her knee, and put her house on the market!
Prayers her house sells quickly.
Jared's muscles that are needed for speaking and swallowing continue to strengthen
For me, I'm tired. Physically, mentally and emotionally. Between work (physically strenuous) and home-life, prayers we catch a much needed break soon!
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For anyone who might be new here, or wanting to know how they can help, here are a couple options:
-- I'm going to drop the link to Jared's Amazon gift registry here:
The most needed items (due to everyday consumption) briefs, catheters, and wipes. 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.
Thank you so much for any contributions and/or purchases. We appreciate it more than you know! We look forward to the day when Jared is FaceTiming all of you to share his gratitude as well!
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