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
Friday, January 8, 2010
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
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
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
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
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
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
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
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