Johnny,
Things are progressing to get you home. It's exciting and scary all at the same time. I can't wait to see your reaction as we pull into the drive way at home. Mom's house has gone through so many changes. I love spring and summer in the country, it's going to be so nice for you to be able to sit on your porch and enjoy the day.
Buddy came by today and said you were sitting in your room, in your wheelchair. You must have just come back from therapy.
Letter from Buddy:
Johnny,
Tammy & I came by today and it has been a while since we have made it. Things have been really crazy at work with the weather we have been having. You are sitting in your wheelchair as we walk in and look really good. You are very alert today. It is good to see you and I hear you are going home soon. I know you will continue to improve. Keep up the great job.
God Bless,
Tammy & Buddy
Mom worked with you today some on the puzzles I got you for Christmas. She said you did really well. You've always loved doing puzzles!
Take care! Love you!! xo Jen
Friday, January 15, 2010
Wednesday, January 13, 2010
January 13, 2010
Johnny,
Dad visited with you today. Dad said that Julia had you scheduled for an hour today to fit you for some braces for you hands to help straighten out your fingers.
Mom spent a few hours at the car dealership...you are now the proud owner of a 2008 wheelchair accessible mini van. That's right Johnny, you own a mini van. It's really very pretty.
Love you little brother!! xo Jen
Dad visited with you today. Dad said that Julia had you scheduled for an hour today to fit you for some braces for you hands to help straighten out your fingers.
Mom spent a few hours at the car dealership...you are now the proud owner of a 2008 wheelchair accessible mini van. That's right Johnny, you own a mini van. It's really very pretty.
Love you little brother!! xo Jen
January 12, 2010
Johnny,
I was able to go to therapy with you today. We started out in Group where you shined! You answered all questions correctly!!! Then it was off to see Craig. He put you on the tilt table and got you to 80 degrees. You tolerated it really well. I was shocked at how flat your feet got.
Chris was next and put you on a machine you've never been on before. You peddled yourself for about 43 seconds.
Bryan did your OT therapy today and you did not like it. I obviously was being too nice to you because Bryan said something about me being your wife...I said, I am his sister and that is just nasty! I'm going to have to tone-down my level of care so that never happens again. Nikki in respiratory therapy taught me how to put a breathing treatment tube together and how to give you a breathing treatment. She also taught me how to suction you and clean your trach...I played along because I already knew how to do that and have been for months. They are getting us prepared for when you go home in two weeks...or so. As I was leaving, mom was just getting there. She went to your swallow test with you. You didn't do so good but we are convinced it's because of the order they give you the food to test. They start off with liquids and if they started off with the solid, you could have time to use the chewing muscles before giving you something that will just slide down your throat. I'm just upset for you, you don't have too many simple pleasures and you really enjoy eating right now.
Love you Johnny!! xo Jen
I was able to go to therapy with you today. We started out in Group where you shined! You answered all questions correctly!!! Then it was off to see Craig. He put you on the tilt table and got you to 80 degrees. You tolerated it really well. I was shocked at how flat your feet got.
Chris was next and put you on a machine you've never been on before. You peddled yourself for about 43 seconds.
Bryan did your OT therapy today and you did not like it. I obviously was being too nice to you because Bryan said something about me being your wife...I said, I am his sister and that is just nasty! I'm going to have to tone-down my level of care so that never happens again. Nikki in respiratory therapy taught me how to put a breathing treatment tube together and how to give you a breathing treatment. She also taught me how to suction you and clean your trach...I played along because I already knew how to do that and have been for months. They are getting us prepared for when you go home in two weeks...or so. As I was leaving, mom was just getting there. She went to your swallow test with you. You didn't do so good but we are convinced it's because of the order they give you the food to test. They start off with liquids and if they started off with the solid, you could have time to use the chewing muscles before giving you something that will just slide down your throat. I'm just upset for you, you don't have too many simple pleasures and you really enjoy eating right now.
Love you Johnny!! xo Jen
January 11, 2010
Johnny,
You did really good in therapy today.
Mom had a meeting with Rehab without walls. She's also looking for a wheelchair friendly handicap van for you. She test drove one to the parking lot where you are and wheeled you into it to see if you and your wheelchair would fit. Resourceful....that's all I can say!
Love you Johnny!! xo Jen
You did really good in therapy today.
Mom had a meeting with Rehab without walls. She's also looking for a wheelchair friendly handicap van for you. She test drove one to the parking lot where you are and wheeled you into it to see if you and your wheelchair would fit. Resourceful....that's all I can say!
Love you Johnny!! xo Jen
January 10, 2010
Johnny,
Mickey and I came to see you after Church today. You were in your wheelchair because mom was going to take you to therapy but you really needed to be suctioned so she brought you back. You sounded much better after you had a breathing treatment. I got some really good pictures of you today.
I asked Johnny where the baby was and he pointed to my stomach.
Johnny pointing to the "peanut" charm bracelet
I told you to smile and you stuck out your tongue
Your sign for "I love you"
Wide-eyed & handsome
Love you Johnny!! xo Jen
Mickey and I came to see you after Church today. You were in your wheelchair because mom was going to take you to therapy but you really needed to be suctioned so she brought you back. You sounded much better after you had a breathing treatment. I got some really good pictures of you today.
I asked Johnny where the baby was and he pointed to my stomach.
Johnny pointing to the "peanut" charm bracelet
I told you to smile and you stuck out your tongue
Your sign for "I love you"
Wide-eyed & handsome
Love you Johnny!! xo Jen
Saturday, January 9, 2010
January 9, 2010
Johnny,
Today you got a shave. Mom and Jackie were there to see you get a gravity feeding. Mom exercised your right arm some. She said that your left ankle is very swollen...wonder why? Mom said that She and Jackie got you all situated and you fell right to sleep.
Love you!! xo Jen
Today you got a shave. Mom and Jackie were there to see you get a gravity feeding. Mom exercised your right arm some. She said that your left ankle is very swollen...wonder why? Mom said that She and Jackie got you all situated and you fell right to sleep.
Love you!! xo Jen
Friday, January 8, 2010
January 8, 2010
Johnny,
In therapy today, Julia put your hands in paraffin wax again and did some neck stretching. You went to group therapy and did very well...you responded to all the questions with either yes, no or I don't know.
Mom said that she worked with you on the post and beads and you really did good and you tried so hard to work with clothes pins but they were too big and it was difficult for you but the main thing is you tried and you seemed to want to do it.
Mom is meeting...probably as we speak...with the equipment guy about things we'll need once we get you home. I'll post about that meeting when I know more.
Love you!! xo Jen
Update:
Mom feels strongly that you've turned another corner. You are interested in what other people around you are doing. She said that you were paying a lot of attention to the other patients in group today. You also saw Chris, your OT therapist from across the room and you were watching him very intently. This is something you haven't done before.
Dad came in around 1pm today and you just stared at his jacket. He finally told you that it wasn't your jacket. You must have been studying it pretty hard. Dad took you to speech therapy and physical therapy and then they measured you in your wheelchair for a wheelchair to go home in. Dad said that since you were in the wheel chair already, he took you for a trip around the hospital.
Mom said that the spots on your back have turned into sores. I hope that it's not causing you discomfort!
Take care little brother! Love you!!
In therapy today, Julia put your hands in paraffin wax again and did some neck stretching. You went to group therapy and did very well...you responded to all the questions with either yes, no or I don't know.
Mom said that she worked with you on the post and beads and you really did good and you tried so hard to work with clothes pins but they were too big and it was difficult for you but the main thing is you tried and you seemed to want to do it.
Mom is meeting...probably as we speak...with the equipment guy about things we'll need once we get you home. I'll post about that meeting when I know more.
Love you!! xo Jen
Update:
Mom feels strongly that you've turned another corner. You are interested in what other people around you are doing. She said that you were paying a lot of attention to the other patients in group today. You also saw Chris, your OT therapist from across the room and you were watching him very intently. This is something you haven't done before.
Dad came in around 1pm today and you just stared at his jacket. He finally told you that it wasn't your jacket. You must have been studying it pretty hard. Dad took you to speech therapy and physical therapy and then they measured you in your wheelchair for a wheelchair to go home in. Dad said that since you were in the wheel chair already, he took you for a trip around the hospital.
Mom said that the spots on your back have turned into sores. I hope that it's not causing you discomfort!
Take care little brother! Love you!!
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