July 24th, 2018 – It’s OK to be Scared

From My Facebook Post:

Taylor Update: It’s OK to be scared

T had a rough night.. that easily translates to Jennifer had a rough night. The trach has been irritating him so much that he would cough more then he would not… they were dry coughs, but they took a lot out of him and really irritated him.

As the night grew older, Jenni asked me to come back to Taylor’s room to talk with him – he was having a hard time. He was very upset… he’s getting more alert and gaining more consciousness… which is great, but it also presents new challenges. It’s ok, our tank is full… thanks to everyone’s love and support, we are running on full nearly round the clock!

I’m getting pretty good at reading his lips… he deserves the credit here – he stays patient and enunciates with his lips and tongue so well it just makes it easier.

When I spoke with him, I asked him if he was scared. He said yes, and then some more… I want to go home, now. Will I die? Will I be here forever?

Deep sigh, even right now as I type those things… the feeling I had last night washed all over me again.

As I tried to explain to him how healthy he is, and how he will not be here forever, and he will go home – I also told him that it will be a lot of hard work and it will take weeks… but it will not be like this forever.

Then I realized that I felt scared too. Not sure why… but I did… so I told him that I was scared too… I got a little emotional… and then he mouthed, ‘it’s OK’.

He was consoling me.. while he was there struggling. So I just said, see.. we all get scared.. and like you said… it will be OK. He smiled.. and then cried some more.. and so did I. I just can’t get this out of my head today and I want to share this with you all. What makes it even more profound to me was that this same sort of message was shared to us in a letter we received today – thank you JB – your words and timing were perfect! ❤️

Later last night (very late), Samantha was adamant that the trach came out today because of T’s coughing… I knew what she meant, but also knew that wasn’t an option just yet – but her reminder and determination helped us when we were with the Dr.’s this morning – they quickly removed the ‘balloon’ from the trach – he still has the trach but removing the balloon really helped… and he has been virtually cough free all day! PENNY PENNY PENNY!!!

Despite the bad night, which meant he was very tired today – He did so great in all his therapies!

PT: He worked very hard to start regaining the muscles and movements to walk! PENNY!!

ST: He had a buffet of food to try today – eggs, chicken steak, yogurt, bananas and grits. All pureed of course – he passed on the grits but tried everything else… he did great! He even snuck in a word or two for us to smile and laugh about! PENNY!

OT: He worked on his fine motor skills and then he spent some surprise time with Shyla again! Hey, petting your puppy is fine motor skills too right 😊 Before T arrived at the meeting place, Shyla laid on the floor for a long time just watching the people come in and out of the door, not moving. When T came through in his wheel chair she stood up, ears all perky, just waiting to see him!! Taylor was so happy to have her there again! Thank you to L&B for having him there and being so patient while we figured out a way for T to see ya’ll!!! PENNY!!!

Because the cough is all but gone, Taylor took a good, and I mean GOOD nap this afternoon – he slept like a baby 😊

Tomorrow will be another great day, I just KNOW IT!!

Please continue to send all your love, prayers, positive energy/thoughts and everything else positive for Taylor – we need it, he needs it!

Attached is a video of Taylor and his nonstop determination today – it’s been 20 days… and just look at him go!! The last part of the video is from last night after our update – it was just too good not to share

Please feel free to share this with your friends – maybe they need to hear that it is OK to be scared too. We all need a little reminder that there are others there to help us when we are scared… we just have to tell them. Courage is contagious!

Good things aren’t always big things, they can be small too.. but they add up if you pay enough attention to them!

Click Here to Watch the Video

 

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