Saturday, January 30, 2010

January 18, 2010

Johnny,

Jackie went to therapy with you today...she said it was cool seeing you on the tilt table. That was her first time going to therapy. Mom said that you spelled out "I want hot shower" with your magnetic letters.

You got botox in your next, left arm and right shoulder today. You handled it very well. The botox should help loosen up your neck muscles and help you to turn your head better. We've been told that it takes about 6 weeks for the full effect of the botox to set in. Jackie pushed you around the hospital today. You had a pretty good day.

Love you!! xo Jen

P.S. Update on your room:
Sheet rock is done. Next is tape & bed, texture, painting, tile work and carpet...
It's coming along.

Monday, January 18, 2010

January 17, 2010

Johnny,

Mickey and I came to see you after church. You were sitting in your wheelchair so we took you outside to enjoy the sunshine. You pointed out squirrels and birds and an airplane that flew loudly over our heads. I reminded you that there was a time when you would shoot and eat squirrels. You just stared at me.

Your nurse told us that you could be leaving as early as tomorrow....WOW!!!

For Johnny's visitors, if you want to see Johnny, I would suggest calling Baylor first to make sure he's there or you can call the family, of course.

We are so looking forward to bringing you home Johnny, I know your wanting that too.

Love you!! xo Jen

January 16, 2010

Johnny,

Mom and Jackie spent the day with you today. Mom shaved you. Jackie and Mom did your exercises. You had a good day.

Love you!! xo Jen

Friday, January 15, 2010

January 15, 2010

Johnny,

One more item checked off the "bringing Johnny home" list. Mom picked up your Hoiyer Lift today. It's a lift used to lift you out of the bed and into the wheelchair or shower chair and can be used by one person. Very convenient!!

Mom said you shined again in group today. You impressed your therapist with all your correct answers about what hospital you are in and what city. You continue to amaze!

Mom and Craig took you down to the new van and put you into it to make sure everything was going to work and Craig figured out that your wheelchair doesn't have tie downs. So, needless to say, he's working on getting tie downs for your wheelchair.

Dad was on his way to see you but I haven't talked to him, mom did. He and I are playing phone tag so I don't know what amazing things you accomplished...I'll post when I hear from him.

Love you!! xo Jen

January 14, 2010

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

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

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

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

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

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

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!!

January 7, 2010

Johnny,

Craig got you up on a standing frame today. It supports your legs and knees and they take you from a sitting position to a standing. The first time they did it, your blood pressure dropped but the last two times, it didn't drop as much. Your body has to get used to the up and down motion before your BP will stabilize and not change at all. These are the things that we all take for granted!

You are officially off the feeding tube...you still have it but your not being fed continuously. You'll be given what mom calls gravity feeding three times a day, breakfast-lunch-dinner. This will help your brain tell you when you are hungry and it will prepare you stomach for larger amounts of food rather then a continuous drip. This is a good thing!

Love you!! xo Jen

January 6, 2010

Johnny,

You had your Family assessment meeting today and it was pretty much the same as last weeks. They will continue to have them every week while your there. You are listed officially as a Rancho 5. The equipment guy (therapy equipment) is coming out Friday to talk with mom about what your going to need. It's a little scary to think about you coming home but on the other hand, it's very exciting!! Craig told mom that he will be getting you up on the lift tomorrow.

Love you!! xo Jen

January 5, 2010

Johnny,

I caught up with you today in your room just as you and mom were leaving for therapy. You first had group and all you wanted to do was sleep and cough. You actually got kicked out because you were disrupting the class. I had to remove myself from the room before that, I gag everytime you cough now...things will be better after the baby is born, I'll be able to help out more with yuck stuff.
From group, you met up with Craig and he put you on the tilt board. You tolerated it very well and were in a 70 degree position for a while. Mom and Craig were talking shop so I had some one on one with you. I told you I had my appointment with the high-risk doctor and you gave me a thumbs up. I told you what they were screening for and you gave me another thumbs up. You kept looking me in the eye so I know you understood and were trying to comfort me. Mom had a meeting with a lady about outside support and you slept through the whole thing. When she was done, she met me at my doctors appointment which was right up the road from you. She's amazing Johnny...I told her she didn't have to come but she did anyway. It was a comfort to have her there. All in all, you and I both had a great day.

Love you!! xo Jen

Monday, January 4, 2010

January 4, 2010

Johnny,

You had therapy today. Neuro came first and then Craig took you to 70 degrees on the tilt board. That's really great! Chris in OT stretched you out and then it was back in bed. Mom said you were sound asleep after therapy.

You have a bruise on your spine caused by the belly band that they insist you wear to prevent you from messing with your feeding tube. Mom in no uncertain terms told them that the band would be removed and in fact removed it herself. She said that you don't need it, you don't mess with your feeding tube and you never have. Your so thin that anything pushing on your skin is going to cause skin break down. I think she took care of it and your on the mend.

Love you Johnny!! xo Jen

January 3, 2010

Johnny,

Well, I tried to warn you! Mom came in to visit you today bound and determined! She taught you some hand gestures (not the bad ones, ha!) to communicate with. If your visiting with Johnny, here are the gestures he knows:

pointer finger to thumb = I love you
pointer finger to thumb out straight = no
thumbs up = yes
thumb & pointer finger to lips = hungry

We are hoping that you have a swallow test on Monday. You got a shower today. The nurse told mom that you always look so nice and clean cut. I told mom she should have told the nurse it's because you have people that love you!

Love you!! xo Jen

January 2, 2010

Johnny,

Mom and Jackie came to visit and while they were there, I came too. We sat around and talked to you and you played with the magnetic letters but never really communicated. Jackie got a new cell phone so she was testing it out and you kept your eye on her. You didn't have any therapy because of the holiday and the weekend. I guess you were catching up on your sleep. I got news for you little brother...you'll be in for some tough therapy come Monday.

When we left, you were sawing logs....hmmm I wonder where that saying came from?!?

Love you!! xo Jen

January 1, 2010

Johnny,

HAPPY NEW YEAR!!!

Mickey and I came to visit you this morning and you were sound asleep. You slept the whole time we were there. The nurse came in and scanned your bladder and you registered 568. She drained 535cc off your bladder and you just kept on sleeping.
We left a note for Dad and Diana when we left and later Diana told me that you slept the whole time they were there too. I did find out that Dr. Thomas came by and upped your baclofen pump so maybe that's the reason for your sleep pattern.

Love you!! xo Jen