September 24, 2009

Isaiah 55:9
"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."

Johnny,
Today is day 100. It seems so much longer and yet 100 days seems too long! It's so hard to see you this way. You've been fighting for the simple things that we all take for granted. Things like holding your head up and brushing your teeth. I'm praying Johnny. I'll keep praying!

I came to visit you today and you were sound asleep. I gave you a shave and rubbed your hands with lotion. Mom came in shortly after that and she told you to give her a kiss and you puckered up. So sweet!

Jerry came in to take you to therapy and had you sit up on the side of the bed and then turned you to put you into the chair. He took you down stairs to the therapy room and Julie and Dwayne worked with you first. Dwayne worked on your arms, hands and fingers to loosen them up. Julie tried to get you to respond verbally to the pain. You would say ouuughh and it was clear that was the sound you were using for pain. Julie put my perfume on a wash rag and let you smell it but you didn't do anything in response to that. I don't know if with the trach you can't smell....I'm not sure. Jerry gave you a peg board and pegs and told you to remove a peg, by color and throw it on the floor. You did that twice. It was a very slow process but you did it. He then told you to take a peg and hand it to your sister. You handed it to me. He then told you to take a peg and hand it to your mom and you did...twice. After that, Jerry had you stand up with his help. You did so good but it must have started hurting because you very clearly said "OOOH GOD". Jerry put you back in your chair and waited a few minutes and then stood you up again. You did better that time. He put you back in your chair and told you if you wanted to go to bed to wipe your face with the wash rag. You thrusted your hand to your face so fast we all clapped and laughed. In light of everything you still have a sense of humor. We took you back to your room and got you all situated in your bed and mom left to go back to work. I stayed to make sure you were comfortable. Jerry was leaving and I told him to have a good rest of the day and he said, "Oh I will" he said that working with you was the best part of his day. I said oh look Johnny, your teacher's pet. Ha! You went from class clown to teacher's pet...

Below are pictures taken from today's therapy. Love you! xo Jen

Before therapy but after your shave

You are reaching for the pain

You touching your chin

You touching your mouth

Mom praising you for a good job!

You with the Peg board

You with the peg board

You with the peg board

Your giving Mom the peg

You beginning to stand for the first time

You standing for the first time

Your second time standing

You using the rag to wipe your face so you can go back to bed

This picture is of the nurse giving you your meds. They put them right into your G-tube (feeding tube).

***Mom heard from the neuro rehab center and they denied you. Your rancho number is a 3 and they require you be atleast a 4. This is on a scale of 1-10. Mom is looking at a few other places. One place is in Richardson and they evaluate patients seperately, not on the rancho scale. They take trachs, and have a respiratory doctor on staff from 7am - 7 pm. Sounds promising...we'll see.

xo Jen

From Diana:
Hey Sweetie, You aren't communicating much with me today. Remember me? We need to start getting rid of these tubes so you can get rid of infection. To many ports, it's inevitable. I love you~ Diana

Johnny- I keep meaning to bring cards that folks have sent us for you. I will try to remember them tomorrow. My memory is getting worse. Everyone loves you and sends their love. Diana