Hello friends and family! It's been almost 2 months since our last post, and we apologize for that, but life has been hectic. As I sat thinking about all I need to update y'all on, it's not lost on me that 6 months ago was Jared's first night sleeping in his own bed since 10/30/2021. And that thought pointed me towards one word: Gratitude! We have so much to be grateful for - people, things, experiences (highs AND lows) and of course, Margot! Jared may not want to admit it, but he does like her and she is HERE FOR IT!
Before we dive further into the most recent happenings, I definitely want to thank all of you for your prayers and PRAISE THE LORD that we seem to have a handle on Jared's gut issues. His wonderful neurologist gave my sister some helpful tips that have worked amazingly well. As much as we think it's great, I can only imagine how relieved Jared is! I told my sister, Dr. B. (his neurologist) was Jared's angel that day! He was there for his routine botox injections (right arm, leg, toes, neck) that help his muscles relax and allow him to participate and continue to strengthen that side of his body in PT/OT. She was instantly concerned when she walked into the exam room and pulled my sister out to chat. She noticed how lethargic Jared seemed and took the time to go over all of his meds (that the physician at Pate has him on) to find out what could be causing this kind of turnaround in progress. Several of the meds that he is currently taking (and has been since July'22-some 3x a day) are fighting each other and causing many of the side effects that we've been thinking were regressions. Again, what an angel -- she could be like most physicians and just treat what the appointment is for, but her genuine concern for Jared and my sister led to a conversation that has already helped change some of the difficulties Jared has been experiencing. We are so thankful to Dr. B, not just for that appointment, but for the way she cares about Jared --i'm sure she's like that with all of her patients and that is a huge blessing for any/all of them.
"Work willingly at whatever you do, as though you were working for the Lord rather than for people."-- Colossians 3:23 (NLT)
Since our last update, all efforts have been focused around Jared's right eye and all the different iterations of treatment. Next week (9/13/2023) Jared heads back to his Oculoplastic surgeon (a doc I bet J never imagined he'd ever need and/or see) for the third attempt in the last 2 months to sew up his R eye and keep it closed. His cornea is extremely dry and irritated because that eyelid hasn't been able to close fully since the accident. He's had 3 different gold weights put into and removed from the eyelid to help weigh it down and close, but to no avail. Since those efforts weren't successful, his cornea is currently living on a prayer and at very high risk of drying out completely. These next few photos are Jared's attempts at "fattening up Dr. G's pockets."
For the first round, they inserted a new gold weight and did an 80% sewing closure (of his R eyelid) and though Dr. G suspected it would open back up a little, he did not expect Jared's stitches to be non-existent within a week! I joke about how strong that eyelid muscle is and if only his other muscles were that strong...
About 2 weeks later, we were back at Dr. G's trying yet another solution to help save that right cornea! This time his surgeon sewed the eye completely shut and hoped the heavier grade sutures would keep the eyelid shut. However, within a week of the second surgery, we were back at Dr. G's and this time, he removed the gold weight and used an even heavier grade suture and closing mechanism to try to keep that eye shut. He is now Pirate-Jared with that blue covering (last pic), and has to wear it for bed and during the day at therapy. If anyone can rock it, Jared can! He is an official One-Eyed Jack for now!
Next doc visit took us to Baylor-McKinney for a Modified Barium Swallow Study. His Speech therapist was concerned with his lack of ability to finish swallowing food, drinks/liquids and even his own saliva, so she requested this test. What we found out from this is that Jared overuses his muscles (swallows 5x more than normal) in the back of his tongue and throat, so eating is not enjoyable and it really tires him out. This also helped us understand why he had gone from yanking Rudy's BBQ sandwiches from Kabrina, twirling and eating some spaghetti from Orlando's (in Lubbock, TX) to barely finishing a Gogurt! Poor guy! You can see in the video (below) how many times he's swallowing what should have gone down in one effort.
So we've pivoted back to soft foods and lots of liquids. Please pray that his wonderful Speech therapist can continue to work with him to strengthen those muscles and that there is no permanent damage to his cranial nerve. She voiced concern about this since he seems to be lacking a gag reflex as of late. PRAY, PRAY, PRAY!! We know the Lord hears our prayers, and we've seen how God moves when you all lift Jared up -- it's such a blessing! Thank you so much! Along this journey, I feel like I've learned the true meaning of "the comeback is always stronger than the setback." It's precisely in times like these that we HAVE to focus on how far the Lord has brought Jared (1 Sam 7:12) and all the prayers that were heard and answered. These lyrics (below) are in a song that I've sung tons of times, but a few Sundays ago, I heard Phil Wickham sing them live and they hit me hard. Yes, I definitely remember the fear that took our breath away and faith so weak that we could barely pray... BUT HE HEARD EVERY WORD, EVERY WHISPER! Thank you, Lord, that you will always bend your ear to hear our cries - no matter how loud or those so tough we lack the ability to voice them!
Most recently, as in last Thursday (9/7), Jared fell while in transport to therapy and hit his head which meant yet another trip to the hospital. He had a few abrasions from the impact, but nothing that was too bad. They did imaging and checked his VP Shunt and all is well. He was actually supposed to undergo an EEG that day, but we had to reschedule due to the fall and ER visit. He's a trooper though and he definitely needs your continued prayers. Not just Jared, but please also lift up my sister, Kabrina, as she is riding this rollercoaster alongside him.
The last picture above was taken earlier today as Mr. Bump-on-a-Log rested before the 6pm Texas Tech football game. We hoped the mindless flinging of perfectly good tortillas (at the start of the game -don't ask) would wake him up, but we just put a very sleepy Jared to bed. We can't wait to have this guy back up and running again. We know God is still God in the hills and valleys, but we are ready to get back up towards the mountaintop! Ready for goofy-Jared! (No, he's not a hostage! Ha Ha!)
He has another surgery next week (9/13) to attempt closure of the right eyelid (semi-permanently) and if that doesn't work, Dr. G recommends total closure of his eye for 6 months to a year, via skin flap sewn over his entire eye socket (yikes!). I joke with Kabrina that Jared has Dr. G earning his medical degree all over again! In the same breath, we are extremely grateful that this physician isn't giving up and is willing to try and try again.
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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) are Nutrien 2.0 (since he's barely eating), briefs and catheters. 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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A few Sundays ago, I had a chance to see Brandon Lake and Phil Wickham's Summer Nights Tour in Ft. Worth and this is how they closed the show. I figured I started this blog with gratitude, so might as well close us out with it! I pray this song blesses you. (Excuse the singing, the gal sitting in front of us was making her very own joyful sound). It's worth the view and/or listen, FOR SURE!
PRAYER REQUESTS:
Success with his eye surgery on Wednesday and that his right eyelid muscle takes a much needed break! Pray for the surgical staff and anyone else in that OR.
Continued progress in OT/ST/PT for Jared -- more strength in his walking, more talking and stronger toileting efforts.
Pray that we can get a new schedule worked out that is beneficial for Jared's current stage and that this will help him be more successful at therapy.
Continue to lift up Kabrina as she powers through between work and an ever-changing home life. She is strong, but my prayer is that she allow herself to be humble enough to give everything to God and let him hold her up with his strength and peace that surpasses our understanding. She is tired folks and I get it...
Pray for continued progress in our mom's PT journey and for total healing from her torn meniscus and ACL in her right knee.
Love you. I will be praying For the surgery. praying for all of you.