October 19, 2009

Johnny,

Today is Dad's birthday...

You have no temperature this morning. You are on schedule for the baclafen trial at 8am today.

I spoke with Mom at 10:46am, you had the trial injection and it's working. Your bending at the hip and you haven't done that in month's...well, since before the accident. The times you were sitting in the wheel chair, you weren't actually sitting but, you were doing the best you could. Your doctor has said that you have to lay flat on your back with your GI feeding tube turned off until 2:30pm to get the best advantage of the trial to see how you respond to it. Mom said that Craig, your physical therapist is coming by every hour to see how loose you are. Mom said you are moving your legs, with Craig's help, up and to the sides. Mom said your not crossing your feet like you've been doing. Your just very relaxed. That must feel like such a relief to you. I think it's possible that you could gain some weight since your contracted muscles aren't eating up all your calories.

Mom said that you were talking up a storm so she decided to take advantage of it. She said she told you today was October 19th and it was your Dad's birthday. She said, Johnny say happy birthday to your dad and you said, Ha bir da. She called dad and put the phone up to you and you said it again. I know you made his day! So, what do I get him, I surely can't top that! Ha!

Mom wrote down names on a piece of paper and asked you questions...here's the questions and your response:
-Wrote Jackie on a piece of paper and asked you what does that say and you said Ja E.
-Wrote mom and you said moooom. (drew it out)
-Wrote Jennifer and you said Jeeennn.
-Wrote Dad and asked you to point to dad and you did.
Then you were done with that.

Mom said she told you I love you Johnny and you said I la yu. Mom gave you a piece of paper with yes and no written on it and then asked you a series of questions and you pointed accurately to the answers.

Your speech therapist came in for you appointment...here's the results of that visit:
-She asked you if you live in Dallas and you said nooo.
-She asked if you live near Waxahachie and you said yeeeah
-She sang the happy birthday song and had you fill in the missing words...she said, happy birthday to ___ and you said yu. Then she said, happy birthday dear ___ and you said da.
-she had you count from one to five and use your fingers along with the words. She said one, you said one and lifted one finger. She said two, you said two and lifted two fingers. She said three, you said three and lifted three fingers and so on until you got to five. (of course it was in the terminology your able to use)
- she worked on "a", "e", "ooh" and "o".
- she asked what the opposite for left was and you said rigggh
- she asked what the opposite of high was and you said looo
- she asked what the opposite of yes was and you said no
- she asked you what the first day of the work week was and you said munda
- she showed you pictures and you would either say the person's name or point to the picture depending on what she asked you to do.
- you followed swallow commands.
- you gave her a thumbs up and a thumbs down when she asked you to.

Mom said that your wounds doctor came by to check on one of the wounds on your behind. He said that it's looking good and starting to heal. That's good news!

Mom called me and put you on the phone with me and I said hi to you and you said hiii. I said do you know who I am? and you said yeess. I said, I love you. and you said La yu.

Your Occupational therapist, Julia, came by and did some exercises. She's going to cast your left arm at a 90 degree position tomorrow until Friday and then take that cast off and recast etc. This is called serial casting. It's to get you to extend the arm that you keep bent over your chest. This is a really good thing! So, if your visiting Johnny, don't be alarmed. He'll also be having his feet cast in the same manner and that's to reverse the effects of the drop foot. That's the way he extends his toes downward as a result of the brain injury. This is very common in TBI patients (traumatic brain injury). You were x-rayed today, both ankles and a right knee. Mom thinks it's to get ready for your feet casting.

When Jackie got out of school, she called to talk to you. She told you hi and you said hiii. She said are you feeling okay? and you said yes plain as day! We both gasped (she had you on speaker phone).

You are already approved by insurance to have the baclofen pump installed as soon as the trail shows that you are a candidate. I'm not sure how soon but I believe it is as soon as you have been infection free so depending where your UTI (urinary tract infection) is, will determine how soon you can have the surgery. I'm so excited for you Johnny! I really feel like you'll sleep much more comfortably when your muscles are relaxed. And, as much as you've been sleeping, it's not been quality sleep. I am just amazed at your progress today, it's like a switch has been flipped in you. When I think back to the doctor that told mom it was inhuman for her to allow you to continue in the condition that you were in and that it was the better decision to turn off your feeding tube and let you die, I get so mad! I'm telling you, there was no way mom was ever going to listen to him but it was still hard for her to hear those words from him. The little boy I spend time with during the week, Cooper, says all the time, Don't stop, don't give up...that's exactly what your mother has done for you. She hasn't stopped and she will never give up. So, so proud of you little brother!

xo Jen