Jeremy went to the doctor again today. This time he went to see the doctor that monitors the baclofen pump. He was very pleased with Jeremy's progress since he saw him 2 weeks ago. We thought they were going to increase the amount of baclofen he is getting, but not so. They are trying to fine tune the amount he is getting. If they give him too much, he wont be able to stand on his legs, but if they don't give him enough, he postures and can't stand on his legs.
They are also talking about another Botox treatment for his right arm. They felt like it has gotten better over the last 2 weeks, but there is a long way to go in getting that right arm to work better.
They added a kind of lap table to Jeremy's wheelchair today, and when I showed up he was using it to writing his name of a piece of paper for the speech therapist. They want to see if they can find a higher one, it is a little low for him. We put his plate on it and it was easier for him to eat. When we got back to the room we put the TV remote on it and he was able to change the channels by himself.
Thank you for your comments, prayers and support!
Tuesday, December 8, 2009
Comments to Jeremy
Since Debi didn't have a chance to post yesterday, I thought it would be a fun idea to make a post that people can comment to and then we'll read them to Jeremy.
If you don't know how to post a comment here are some instructions:
1. If you're on the main page, you can click on the underlined link under this post that says comments or click on the title, "Comments to Jeremy".
2. Once you're on the next page, there should be a blank comment box under this post. Go ahead and type a comment to Jeremy. Don't forget to sign it! (Maybe include where Jeremy knows you from... Sometimes it takes him a bit to remember who people are and that seems to jog his memory)
3. Down on the "Comment as..." dialogue box, if you don't have a Google account, you can either click on "Name/URL" or "Anonymous".
- If you pick "Name/URL" you can just put in your name and skip the URL box. If you pick Anonymous, it will post your post as Anonymous, which is fine as long as you remembered to sign your post.
4. Then you can click "Post Comment" to post your comment to Jeremy.
If this works well, we'll try to do this every once in a while for an easy way to send Jeremy messages! And, if you want to send him a message any other time, feel free to leave a comment and we'll make sure they get to Jer.
If you don't know how to post a comment here are some instructions:
1. If you're on the main page, you can click on the underlined link under this post that says comments or click on the title, "Comments to Jeremy".
2. Once you're on the next page, there should be a blank comment box under this post. Go ahead and type a comment to Jeremy. Don't forget to sign it! (Maybe include where Jeremy knows you from... Sometimes it takes him a bit to remember who people are and that seems to jog his memory)
3. Down on the "Comment as..." dialogue box, if you don't have a Google account, you can either click on "Name/URL" or "Anonymous".
- If you pick "Name/URL" you can just put in your name and skip the URL box. If you pick Anonymous, it will post your post as Anonymous, which is fine as long as you remembered to sign your post.
4. Then you can click "Post Comment" to post your comment to Jeremy.
If this works well, we'll try to do this every once in a while for an easy way to send Jeremy messages! And, if you want to send him a message any other time, feel free to leave a comment and we'll make sure they get to Jer.
Sunday, December 6, 2009
December 6
Yesterday Jeremy had a lot of company which he always enjoys. Today was a pretty good day although I think he got a little bored. He was still on a "I want to go home" kick. I tried to explain that there is more progress he needs to make before he can come home for good. I can't fit him in my car today with the wheelchair, etc! (We will have to plan another day trip as soon as his brothers come home again.) If he couldn't go home he wanted to go to Linda's house (Aunt in California). I have no idea where that came from. We called her on the phone but that made it worse. To get his mind off that we looked for something to distract him.
We ended up going down to the "Bingo" game in the cafeteria and playing. They give you 2 large cards and chips to cover the numbers. I figured it would be good to see how fast Jeremy could find the numbers they called out. Some of the time I pointed them out and other times he would them right away. They were calling out the numbers pretty fast. It was fun and Jeremy got 2 BINGO's. It's time to get him involved with some of the activities at this place. They have quite a few.
Thank you for your continued prayers!!!!!
We ended up going down to the "Bingo" game in the cafeteria and playing. They give you 2 large cards and chips to cover the numbers. I figured it would be good to see how fast Jeremy could find the numbers they called out. Some of the time I pointed them out and other times he would them right away. They were calling out the numbers pretty fast. It was fun and Jeremy got 2 BINGO's. It's time to get him involved with some of the activities at this place. They have quite a few.
Thank you for your continued prayers!!!!!
Saturday, December 5, 2009
December 5
Sorry about the lapse. Jeremy has had a good week. They have been working him really hard in all of his therapies and he is very tired by the end of the day. They have really worked hard on sitting by himself on the edge of the bed, standing frame, tilt table, rolling over, laying on his stomach. All things he is still working on being able to do by himself. Building up those muscles!
Jeremy gained 10 pounds last week so we talked to the nurse today about why they were still doing the tube feedings at night. He not only eats his meals but he eats afternoon & evening snacks. We were told at one point that the patient has the right to refuse service or medication. We decided that we would "refuse" the tube feeding for the next couple of days. At least until they can talk to the dietitian or the doctor. We looked up Jeremy's height to determine what he should weigh and the chart we saw said no more than 195 and Jeremy now weighs 190. He looks good! We will see how it goes. One day at a time!
Jeremy was in one of those "I want to go home" moods again today. I told him we had to have patience and he said "Don't we have patience". It made me laugh. How many times have I said that exact thing in the last 6 months.
Thank you for your continued prayers!
Jeremy gained 10 pounds last week so we talked to the nurse today about why they were still doing the tube feedings at night. He not only eats his meals but he eats afternoon & evening snacks. We were told at one point that the patient has the right to refuse service or medication. We decided that we would "refuse" the tube feeding for the next couple of days. At least until they can talk to the dietitian or the doctor. We looked up Jeremy's height to determine what he should weigh and the chart we saw said no more than 195 and Jeremy now weighs 190. He looks good! We will see how it goes. One day at a time!
Jeremy was in one of those "I want to go home" moods again today. I told him we had to have patience and he said "Don't we have patience". It made me laugh. How many times have I said that exact thing in the last 6 months.
Thank you for your continued prayers!
Wednesday, December 2, 2009
December 2
Jeremy had a pretty good day today. They tried some new things in therapy today. I don't know how thrilled Jeremy was with it all - it was a lot of work.
They tried the side board transfer - there is a board between the wheelchair and the bed or sofa or whatever you want to transfer to. Jeremy has to slide on the board to get from one place to the other. Right now he needs total assistance (someone shifting his hips for him, but we are hoping he will get better at this so 1 person can assist him. The goal is we could do this at home. Right now he has a Hoyer lift that does the all the work. We will keep working on this.
They also sat him by a pole and introduced him to the concept of using a pole to help himself up. He was very tired by this time and was less than excited about it.
They also working on sitting up by himself again. They said yesterday he did 15 second all by himself. Again he has to build up all those muscles we take for granted.
Jeremy went to visit the doctor today. This was the "rehab" doctor he had when he was at St Al's. He is continuing to see Jeremy for when he returns to rehab. He was very pleased with Jeremy's progress. At one point Jeremy handed me his glasses and said "Thank you mom" for taking them. The doctor looked up from his paper with a big grin on his face. Jeremy's speech has progressed a lot since the doctor saw him last and I think he was surprised by his cognition. He said to Jeremy "you know exactly whats going on don't you." Jeremy smiled and shook his head "yes" He adjusted some of Jeremy's medications. Stopped a couple of the meds and made some suggestions as far a other thinks involving his care. He would like to see Jeremy in another month and talk about when Jeremy might go back to Elks or St. Al's rehab program. At least that is the goal. We agreed that having a goal was good!!
This is a special time of the year - a time of hope and healing. Please continue to pray about this in the coming month. Thank you!!!!!
They tried the side board transfer - there is a board between the wheelchair and the bed or sofa or whatever you want to transfer to. Jeremy has to slide on the board to get from one place to the other. Right now he needs total assistance (someone shifting his hips for him, but we are hoping he will get better at this so 1 person can assist him. The goal is we could do this at home. Right now he has a Hoyer lift that does the all the work. We will keep working on this.
They also sat him by a pole and introduced him to the concept of using a pole to help himself up. He was very tired by this time and was less than excited about it.
They also working on sitting up by himself again. They said yesterday he did 15 second all by himself. Again he has to build up all those muscles we take for granted.
Jeremy went to visit the doctor today. This was the "rehab" doctor he had when he was at St Al's. He is continuing to see Jeremy for when he returns to rehab. He was very pleased with Jeremy's progress. At one point Jeremy handed me his glasses and said "Thank you mom" for taking them. The doctor looked up from his paper with a big grin on his face. Jeremy's speech has progressed a lot since the doctor saw him last and I think he was surprised by his cognition. He said to Jeremy "you know exactly whats going on don't you." Jeremy smiled and shook his head "yes" He adjusted some of Jeremy's medications. Stopped a couple of the meds and made some suggestions as far a other thinks involving his care. He would like to see Jeremy in another month and talk about when Jeremy might go back to Elks or St. Al's rehab program. At least that is the goal. We agreed that having a goal was good!!
This is a special time of the year - a time of hope and healing. Please continue to pray about this in the coming month. Thank you!!!!!
Monday, November 30, 2009
November 30
Jeremy is such a funny kid. Today in physical therapy they were working on sitting up by himself. He did great. Finding that center of gravity is another one of those things we take for granted. I'm not sure how much they have worked on sitting on the edge something by himself but he was doing pretty good leaning forward with his head down. They brought a mirror and set it in front of him. he would find that center then he would look at himself and pick up his head, sitting up straighter and fall back and smile. He was pretty proud of himself. He is doing more and more every day. He is getting better at turning from his side to his back and moving his legs more and more. He wants to lay on his stomach more now but with his right arm so tight still it makes it hard. He is getting closer to being able to do that, he's getting more flexible.
Jeremy usually doesn't eat all his dinner. He gets a pain in is backside and then cant think about anything else so we usually take him back to his room and lay him down. Tonight they helped Jeremy get ready for bed and then always ask if he wants a snack. Tonight he ate a sandwich, 2 snack bags of cookies, ice cream!, applesauce and he hadn't stopped last I heard. They weigh him every Wednesday. It will be interesting to see how he does this week.
Jeremy usually doesn't eat all his dinner. He gets a pain in is backside and then cant think about anything else so we usually take him back to his room and lay him down. Tonight they helped Jeremy get ready for bed and then always ask if he wants a snack. Tonight he ate a sandwich, 2 snack bags of cookies, ice cream!, applesauce and he hadn't stopped last I heard. They weigh him every Wednesday. It will be interesting to see how he does this week.
Sunday, November 29, 2009
November 29
Jeremy had a fairly quiet weekend. Visited with a few friends and family. We played a few games that Jeremy won, watched a movie and in between we stretched his arm and hands. We continue to work with Jeremy on slowing down his speech. He has a knack for making a 2 or 3 syllable word into a 1 syllable word. We resort to asking him to spell the word more often now that we know that is easier for us. We are all learning more patience, including Jeremy. They say that outbursts are not uncommon with brain injuries and Jeremy has those, although so far they are not as bad as they told us they might be. Jeremy is still very much Jeremy.
Thank you for your continued prayers!
Thank you for your continued prayers!
Saturday, November 28, 2009
November 27
I was able to be with Jeremy for his occupational therapy today. They put that impulse thing on his right shoulder and upper arm again. While that is on for about 20 minutes she played another card game with him. He wanted to learn a new one today so she played "garbage". You put 10 cards out in front of each of you. you start by drawing and if you draw a 3 you put it in the third spot, then you pick up the card that was turned face down in that spot and put it where it belongs. if its a 10 you put it in the 10th spot. If you draw something you already have it goes in the garbage pile. The object is to get all 10 cards turned over.
Anyway it is nice to see Jeremy being more independent. Getting better at picking up the cards by himself, picking up his arm enough to not disrupt the cards in front of him, and figuring out which spot the card goes. He is pretty good. At the end of therapy he was winning! I took over her hand so she could stretch that right arm after the 20 minutes.
It is a slow process, loosening that right arm but we work on it all the time. I tell anyone who comes to see him - hold his hand and work it. Trying to get that right wrist to move itself will be a great day! He moves the elbow pretty good now, its work for him but he can do it. Next the wrist than the shoulder.
Thank you for your prayers.
Anyway it is nice to see Jeremy being more independent. Getting better at picking up the cards by himself, picking up his arm enough to not disrupt the cards in front of him, and figuring out which spot the card goes. He is pretty good. At the end of therapy he was winning! I took over her hand so she could stretch that right arm after the 20 minutes.
It is a slow process, loosening that right arm but we work on it all the time. I tell anyone who comes to see him - hold his hand and work it. Trying to get that right wrist to move itself will be a great day! He moves the elbow pretty good now, its work for him but he can do it. Next the wrist than the shoulder.
Thank you for your prayers.
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