September 5th, 2018 – 9 Weeks

From My Facebook Post:

Taylor Update: 9 Weeks

Taylor slept well last night… but honestly, we stayed up later than usual, so we were all sluggish this morning. Lesson learned, and I guess binge watching The Office will have to get cut off early tonight 😊 I blame Jennifer HAHA!

He told me yesterday that the PT team was too nice… I agreed but let’s not test them just yet LOL Good thing too because it was time to get to work today! T wanted to wear his Wofford College shirt today to represent his sissy’s school… after all, he was wearing the new shoes she got him – thanks sissy!❤️

Each day that passes is another day of victory! We never forget that! The reality is that the results we fight for need to be balanced with patience. It’s been 9 weeks since ‘that’ day. Each day is a gift, but we feel like we need to take the bull by the horns and press on fighting for everything we can! Patience, yes… but sitting around waiting isn’t the answer either, and I’m so grateful that Taylor gets THAT part of his journey. He gets that there needs to be a balance! We try to walk that line, but as it is… everything we measure, it’s ONLY been 9 weeks! 9 Weeks and we are dropping pennies in the jar every day! It’s been a long time but the road ahead is much longer!!

We are just so fortunate to even worry about the balance of results and patience… not everyone is afforded that challenge, and we embrace our blessing and take it very seriously!

What about today? Get back on track Shawn!! 🙂

He worked on some vision exercises – these were interesting. It looks cool, and I am SO glad we are doing these kinds of things, but CVI is so complex; you never know what is good or bad for the brain. We are hoping that, in time, we will be able to meet a CVI specialist who can evaluate his vision possibilities, combine that with his MRI images, and come up with a specific plan. I am working on this aggressively but it’s such a difficult thing to figure out… and the specialists are few and far between too. Nonetheless, what he was doing today was very cool and he did great! KEEP IT UP TAYLOR!! PENNY!!

Taylor’s fine motor skills are getting better every day! Today he practiced buttoning and unbuttoning shirts… this is hard (was even harder weeks ago) but it is one of his goals (increased fine motor skills) so he faced it head on and worked hard at something we all take for granted. PENNY!

During PT today, we reached another HUGE milestone!! Are you ready for this?!??!!?

Treadmills WITHOUT the harness… no safety net… no assistance with weight bearing… just him, and the machine (well, and his therapist haha)! PENNY!! His average for 12 minutes was 2.2 MPH – We are SO proud of you TAYLOR!!!

It was a great day of therapy for T. His legs are tired but he is looking forward to tomorrow… especially since NFL seasons starts! He’s in 3 Fantasy Football Leagues… I worry he will beat me again this year… fingers crossed!

I hope you had a great day too and found your balance between results and patience!! If it feels frustrating, try not to let it get the best of you! – it’s not easy… trust me, it’s something I have to work on ALL the time – it doesn’t come as easily to me as it does Taylor… but I will keep working on it, that’s for sure!

Until tomorrow… Miracles Happen!  WE LOVE YA’LL!!!


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One of my goals through sharing the updates is to share T’s determination, spirit, and story, with as many people as possible! Not only to help him, but to help others too! Please join me in this effort! Share on Facebook and on Twitter

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