Welcome home Jared! Yes, it is finally here, after 488 days in various hospitals and facilities, he is home! We have long awaited this! So before I get to the good stuff, let me catch you up on the things leading up to this past weekend.
First off, we want to thank you all for your prayers and support through all of this, we have come a very long way but yes we still have a long road ahead of us. Thank you for your prayers these past couple weeks as we had some obstacles to overcome. Jared had a seizure which required a 911 call and to be sent out to the ER. Thankfully it did not last long, and it was only his second one. After labs, and scans, everything looked okay, and nothing to change or worry about. Then a few days later Jared decided to pull out his peg tube, which again required a trip to the ER. And for a finale, he had a little tumble in the bathroom when I walked away for less than 10 seconds and he decided to stand up on his own and walk by himself. Thankfully, aside from him being very sore from breaking his fall on his hands and arms he had a small cut above his eye and on his chin but he was alright, All of this happened in less than 2 weeks before coming home.
In all of this, we have had many of those, "small world", stories, these are the stories that constantly remind us that God is in the details (as my sister has said to me before), and not just the big picture. Awesome story I'd like to share with you all.
One of my co-workers, Lisa shared a wonderful story with me and and now I must share it. Lisa's boyfriend Bill (whom I've never met) was at a local restaurant near his home, where he was sitting at the bar enjoying a meal. I have heard that Bill is the kind of person to befriend everyone and is always that guy who is chatting with others around him. He began chatting with a woman next to him at the bar and somehow they got on the topic of what they do and did for a living. Bill used to be a surgical technologist specializing in neurosurgery, and the woman he was talking to worked in the neuro field as well. Their conversation led to the woman asking Bill more about neurosurgery and how she has always wanted to observe neurosurgery. They began talking about how fascinating the human brain is, which led to Bill bringing Jared up. not mentioning him by name but something that goes a little like "my girlfriends co-worker's husband was in a motorcycle accident..." Bill then pulled out his phone and pulled up the blog and pictures that Lisa had shared with him. The woman snatched the phone out of Bill's hand in awe and excitedly mentioned, that she knew him, he was her patient, and she knew it was Jared! This "small world" moment was with Jared's previous occupational therapist from our time at Baylor Institute for Rehabilitation in Dallas. LOOK AT GOD! Bringing two strangers together for a conversation that lead to Jared and his story.
I'd like to introduce these amazing people who take time everyday (6 hours, if not more) to pour everything into Jared. From left to right, Raegan (Speech therapist), Jenny (physical therapist), Elba (physical therapist), Chloe (occupational therapist). Since July these ladies have not only put up with Jared's shenanigans but also mine! The further along Jared gets, the more personality comes out, and it is 100% Jared.
It is no doubt that PT is his favorite because Elba and Chris (not pictured, but works with Jared everyday in PT as well) get Jared up and out of the chair and walking outside most days. Sometimes they throw frisbees, golf like activities, and soccer. They continue to work on his standing balance, walking, wheel chair propulsion and most recently working on getting up from the ground and other very low surfaces. In speech therapy, Raegan is working with Jared on reading, which he does very well at, working on that volume and pushing up all that air when he speaks, and most recently she is working with nursing on him taking his meds orally so he won't have to have them via his peg tube, In occupation therapy, Chloe continues to work with Jared on strengthening and range of motion on his right side. They work on a lot of hand-eye coordination activities, grasp and release, oral hygiene, and self feeding.
With leaving Pate as inpatient we leave behind so many people who have grown to be family and have been such a crucial part in Jared's day to day and overall recovery. All the techs from Jared's house he was in, the house managers, and the nursing staff. We have learned along the way, while therapy is so important, the techs and CNAs are some of the most valuable people. Thank you all for your patience, compassion and kindness you showed not only Jared but myself and our family.
This past Friday, March 3rd, was Jared's last day as inpatient at Pate. When we pulled in the driveway much to our surprise, my mom and sister were standing in the yard with a welcome home sign and balloons. My mom surprised all of us with her secret trip to Dallas for the weekend to welcome Jared and his big moment of coming home. It was a very emotional moment and I am so happy to have had my mom and sister here to greet Jared and share this incredible, unforgettable moment. Jared is so blessed to have my family love him and support him so unconditionally. I always joke that my mom and sister tolerate me, but they really do love Jared and would, will and have done anything for Jared that is needed. They deserve so much gratitude for all that they are and have done for me and Jared. No one, and man do I mean NO ONE has shown up for Jared as much and as hard as these two Ishmaels. I tell you, these are the ones you want going to battle for you!
I promised you all some pictures of our completed bathroom for J, so here you go. Thank you to everyone that contributed to the GoFundMe, the majority of the bathroom renovation costs came from those donations. Big thanks to my co-worker Stephanie to putting me in touch with her husband Hayden Shultz and his company Renewed Roof for doing a beautiful job on the bathroom renovation.
Our newest addition, Margot, she likes to sleep in here.
Now to the how it's going part, so it has been a week, and it has been just that...a week. Major adjustments on all our parts. To be honest, I have had a very difficult time, with lots of crying and cussing and asking God when are we going to catch a break. I know we have had hard times and periods that were much harder than this one, but it doesn't mean that this moment isn't also trying with a new set of challenges. I have said on various occasions that I am clearly learning a lesson in patience, and you would think after 16 months I would have learned it by now...WRONG! My biggest obstacle with caring for Jared at home is myself, I am struggling with patience.
This week we have been working on a morning routine mostly, getting Jared up in the morning and getting him to the bathroom, teeth brushed, face washed, dressed and fed, all before Pate transport comes to get him to take him to therapy for the day. Then when he gets home it's hurry up and get dinner figured out, which is always fun, figuring out what will Jared actually eat; and then shower and bed. Overnights are tough, something very new to me. At Pate, there was staff that would round on Jared and the other patients every couple hours to check on him and change him if needed. As we are still working on continence training this role has now become mine, setting an alarm to wake up and check on Jared every couple hours. This has not been fun for either of us, me waking up to do the things needed which unfortunately result in me bothering Jared while he is sleeping. So as I said, it has only been a week, so I am hopeful that things will get easier as we adjust and figure out our new routines. Other than that, I think Jared is enjoying being at home. He has a new recliner, that he picked out himself when my sister and I did a little furniture shopping a few weekends ago with him.
I have taken a few weeks off of work to be here for the morning routine as we make adjustments in Jared's day as he is still going to Pate everyday for outpatient therapy. Starting next week I will have an aide coming to the house in the mornings as I will be at work already when Jared is needing to get up and ready for the day. We are praying that these changes and transitions go smoothly as we all learn new things.
With those trialing times also come some really awesome moments too. We do have a lot of fun with Jared, and now that we can all hang out at the house (weekends are for relaxing), we have some sweet, fun and hilarious moments together.
Another one of my very wise co-workers had some wise words for me last week. She mentioned that in times of tragedy and trauma, many of the people you expect to run toward you, actually retreat and those that you would never expect to run towards you to help. Thank you Lisa Barbee for that moment, on that day.
Thank you to so many of my colleagues who constantly ask how Jared is doing, for asking how I am doing. So many people that I did not expect, especially from my UTSW family ran towards me, and I am forever grateful for that, And always thank you for my mom, and sister who constantly show up for me and Jared. this journey would not have gotten this far without the love, and support from those two, Suzy and Krissy really are my miracles! Thank you to my grandma in Florida who asks for pictures and updates every week on Jared, so she can share with her bible study group; who gets so emotional every time she has seen him when she comes to Texas for a visit. Thank you to my Aunt Sylvia who has made many a trips of over an hour to visit with Jared at the various facilities he has been in, from back in the days of the LTAC where she would come and read scripture to him. Thank you to my Uncle Tim who also made the trip to visit Jared and talk about their time playing golf together and looking forward to the next time! Thank you to those who have driven from out of town for a day or a weekend, to visit with me and Jared.
“My command is this: Love each other as I have loved you. Greater love has no one than this, that one lay down his life for his friends.”
John 15:12-13
For anyone who would like to visit Jared, or maybe some of those who haven't met Jared or myself but have prayed for us we would love for you to stop by sometime and see your prayers answered.
Many of you have asked how you can help now that Jared is home; I have created an Amazon registry with the things he needs daily, which include hygiene and continence products, mobility aids, supplements and medical supplies needed, and of course gift cards.
"Jared's Home" Registry, search "Jared Sawall
Prayer Requests and Praise reports:
PRASIE: HE IS HOME! If we look back at where he was a year from now, it was a very different picture.
PRAISE: Jared READS! He is doing very well with this task with his speech therapist!
Now that Jared is home, we all have lots of adjustments to make and get used to. Prayers that those things happen smoothly and with patience (on my end).
Better eating (chewing and swallowing) from Jared
Successful continence training
Continued progress with Jared's speech. MORE VOLUME!
Continued progress with Jareds balance and walking, this will allow him to be more independent at home.
As we transition to me going back to work and someone coming into our home to help care for and get Jared ready in the morning that things go smoothly and safely.
Lots of Sawalls pictured here. From left to right, Jared's dad, Ron; Jared's uncle Mike; and Jared's grandpa, also Mike...and fun fact for those of you that didn't know, Jared's first name is actually Michael!
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