Hey everyone! Apologies for being so behind on the blog, but on the flip side, now I have that much more to share with you all about Jared kicking butt here at Pate. Well, he has been a busy, busy man with therapy during the week. Thirty hours of therapy is a full time job, Jared is doing more physical work than many others do, so kudos to this guy for working so hard everyday, as we said early on in our journey, Jared is a fighter and we are here for it! We are hopeful and excited to go into a new week with new obstacles for Jared to push through and for him to keep getting stronger and proving all the naysayers wrong!
A few things that I love…his therapists keep a daily log for Jared, they jot down what they work with him on for each session every day, they let me know if he was fatigued, distracted, new accomplishments, fun little things about them getting to know him better or kicking butt in his sessions. His therapists are getting to see more and more of his personality come out as they continue to work with him and that will only help them help him!
Physical Therapy-
Everyday Jared is walking in his PT sessions, he uses an EVA walker. It allows him to stand upright and rest his arms and elbows on a pad and can focus on his gait and legs. He also does about 20 minutes on a hand and leg bike (NuStep), he is doing well at using both arms and legs, we just need to work on his head staying midline. His therapist have taken a few videos for me and I will include them for you all to ooooh and ahhh at!
He was walking about 100 feet in the last week and a half, and now he is walking more than 200 feet during his PT sessions. He is working on a sit-to-stand movement, side stepping, standing balance, shifting his weight back and forth between both legs, and propelling himself in a more low profile wheelchair. He has started to work on kneeling, which I think is extremely difficult and a huge accomplishment as most able bodied people (such as myself) struggle with this task. Aside from working on the regular daily things with him, his PT is always trying to come up with new and fun ways to keep Jared engaged and interested in his sessions.
Occupational Therapy-
Most recently his therapist worked with him on some mindful meditation, which includes deep breathing, stretching and a bit of yoga, she said he had good engagement and participation with this. Sometimes he does a combined therapy with OT and speech, last week they did a baking exercise, and he helps them with preparing, mixing and then his speech therapist worked with him on eating small bites of a chocolate chip cookie! Yay Jared! She said he loved it, and only coughed once!
His OT works his hand eye coordination with a laser pointer in a game and has him identify different objects. They work with Jared every day on sitting at the edge of the mat to help strengthen his core and reaching across his body to grab objects and getting more comfortable in his body space. A lot of stretching to his right arm and hand being that this is the side that is not nearly as active as the left, they use an e-stim and stretch him out a lot to help with his range of motion and flexion.
Speech Therapy-
Speech is one of the most important therapies in this journey I have learned, as they are the ones that controls what goes in Jareds mouth! Since arriving at Pate his ST has been trialing him with ice chips and water and a few other puree like foods, such as applesauce and pudding. She is making sure he is swallowing in a timely manner and with minimal coughing, and from her notes it sounds like he is improving each week. As I had mentioned, he got a couple small bites of a chocolate chip cookie from their baking activity on Friday! They continue to work with him on brushing his teeth every day, and if I haven't mentioned yet he is now spitting! It sounds silly I am sure to most people that spitting is such a small thing but to Jared it is huge. He has had to have a suction machine to complete this task when we were at Baylor and now he will lean forward sometimes even without the verbal cue and spit his toothpaste out. They have him doing many different oral exercises, with his mouth, and tongue. one of my favorite things that his ST had mentioned in her notes was that she was playing a thumb war with him and he used his index finger to snake her thumb down and she made a comment "hey that's cheating" and she laughed because he gave her a good smirk, and she enjoyed getting to see his personality shine! She is also working with Jared on verbal cues and tasks like identifying objects in a field of 3 and competing 1-2 tasks at a time. I made a memory book for his ST to use with him during their sessions, it has pictures that identifies family members and pictures of our house and memorable times in our lives and things going on in his day to day now at Pate that may be able to help him communicate with us. And, although he is not consistently speaking, he has said a few things here and there in a very quiet voice, and we are seeing him mouth more things as well, so we are praying that his voice is coming in just around the corner. On Tuesday, August 9, Jared will be going to Baylor McKinney to have a swallow study done. He has not had one done since early July, so we are praying for improvements and that this will give his new speech therapist the information she needs to begin trialing him with more foods!
His day to day at Pate is always changing as he is making progress and doing more each day. The staff at the house that he lives in is getting to know both Jared and I better, and that is helping with the care he is receiving. We have had some tough days and few issues here and there but there are now more good days of Jared doing something awesome than bad days where the staff is struggling with taking care of Jared properly. As I constantly remind those along the way, I am not trying to be difficult (believe it or not) but I am and will always be the biggest advocate for my husband, as I would expect everyone else if they were in my shoes to fight for their loved one as I do mine.
As some of you have seen from my social media, there are a a couple of horses and a donkey that live on the ranch, and my sister, Jared and I love to visit them and occasionally give them snacks! It is so much fun being in it with Jared on the day to day as more of his personality is coming out and there are so many things that can't or don't get captured on camera and even if it did it is so difficult to portray those things in a snapshot. There are so many little things and things that we would see has minor or insignificant but being alongside Jared for 9 months and where more than half of that time was him not doing anything, those little things are HUGE to us, and they are just so fun when they happen without us asking him to do things or when it just happened as part of his routine or spontaneously. Over the weekend, my sister and her friend, Meggs from Houston were hanging out with Jared and I don't remember what we were talking about with Jared but then he made this face and was mocking Krissy, and there was something so hilarious in the moment about it, that it could not be recreated as it was so precious in that time, of Jared being Jared. So many little victories and miracles are happening and we still have many mountains to move but it has been so amazing getting to see all of these things. Jared is so incredibly alert, or as I would call him "nosey," he likes to look at whatever we are looking at on our phones, or when my sister or I are looking over his therapy notes from the day he always wants to see it too! Some of my favorite things to see are when him and Krissy fall into an instagram hole watching silly videos together. Big shout out to Megan Sherman for making her 3rd trip up to Dallas in the last few months to hang out with us and visit with Jared, one of Jared's biggest fans! Please continue to keep us in your prayers for complete healing, and patience as we continue along on this journey!
Prayer Requests:
We continue to have the resources to stay at Pate and Jared will continue to make progress.
Jared will find his voice and be able to speak...LOUD
Continued strengthening of his swallow moving towards eating food. Swallow study to go amazingly well on Tuesday morning!
Strength and mobility to keep getting stronger and more consistent on the right side of his body.
I am able to find the right contractor to get started on the bathroom remodel and renovations around the house.
Love the updates! Go Jared! Pixxie misses you !