April 11th, you and Mom took a very special trip to Carteret H.S. for SADD week. We were asked to come and speak to the kids and tell your stories. Liz and Greg came and did a beautiful presentation and Greg spoke about his experience. Betsy was there from Hartwyck and read her story and Aubree read your story. There were tears and the kids were clapping and applauding and even asked questions.
I had never experienced anything so moving as I did that day, we were treated to lunch after and Mom was emotionally and physically drained
April 16th was Day Of Caring and Mom and 17 volunteers from her company came down to Hartwyck to complete the 3rd floor and work outside. There is a new sign in the front of the building and the pond is running. It is so beautiful in the back, it will be even nicer when the kids come from Carteret H.S. and plant trees, shrubs and flowers.
We have been invited by Joanie at Carteret H.S. invited us to a Bears baseball game on the 22nd of May. Not sure if it will be possible due to transportation. First and foremost is making sure you are okay for the trip.
Three weeks ago you were given Botox injections to help relax your muscles so we could do more things with you. However it is possible you were given too much and now you are very weak on your right side. You have been sleeping a lot, so much so that it is hard to wake you up. So much going on but no real answers. I worry all the time Aaron because I know there are no guarantees, especially with brain injury.
Wednesday, April 16, 2008
Sunday, March 23, 2008
Easter Sunday
Update from Easter Sunday:
Unfortunately you were not able to go to Uncle Fred’s for Easter, you were sick and running temps. Mom stayed with you for the day and Dad and Melissa went to be with the family. I stayed with you until you went to bed and I knew you were okay.
It took a while for you to come around but as each day went by you got stronger and more alert and focused. Mom does not do very well when you are not yourself. It throws me in a tailspin and I don’t sleep well. I worry what is going on with you because you can’t speak.
I don’t know why all these things are happening to you Aaron, I just know you have not been the same since the study. It may be a coincidence but you are not relaxed, you get agitated very easily and once again running temps. One day the nurse noticed green discharge on your pillow case and it was excessive. They ordered ear drops and called in Dr. Meir and he had to put you on antibiotics. I believe the infection was so bad your ear drum burst. You were in so much pain, my heart ached for you. It took a few days before you started to come around from the ear infection. You were also very congested and they would have to deep suction you and give you respiratory treatments.
Andrea would still come and work with you but sometimes you were just too tired and did not respond.
Unfortunately you were not able to go to Uncle Fred’s for Easter, you were sick and running temps. Mom stayed with you for the day and Dad and Melissa went to be with the family. I stayed with you until you went to bed and I knew you were okay.
It took a while for you to come around but as each day went by you got stronger and more alert and focused. Mom does not do very well when you are not yourself. It throws me in a tailspin and I don’t sleep well. I worry what is going on with you because you can’t speak.
I don’t know why all these things are happening to you Aaron, I just know you have not been the same since the study. It may be a coincidence but you are not relaxed, you get agitated very easily and once again running temps. One day the nurse noticed green discharge on your pillow case and it was excessive. They ordered ear drops and called in Dr. Meir and he had to put you on antibiotics. I believe the infection was so bad your ear drum burst. You were in so much pain, my heart ached for you. It took a few days before you started to come around from the ear infection. You were also very congested and they would have to deep suction you and give you respiratory treatments.
Andrea would still come and work with you but sometimes you were just too tired and did not respond.
Saturday, March 15, 2008
March 3-15, 2008
Mom took you to the dentist for a cleaning, they did a deep scaling and you were so good. You have no cavities and they want to see you in 3 months. Andrea came and met us there so she could help me get you back to Hartwyck.
Tuesday, March 4th... What a big day for all. You have been approved for the ambien study and it takes place today. It will start around 10 am, they will do the coma recovery scale test to get a baseline. Then they administer 10 mg. of ambien. If it works you will show signs of changing and becoming more alert and responsive. Unfortunately, you went to sleep which is what ambien is for. They tried to arouse you 2 times but were unsuccessful but on the 3rd try you were alert, focused and active. When the therapist administered the coma recovery test there was no change in performance. She believes when they gave you Ridlin is why you were so stimulated and alert. She also felt you were over stimulated and agitated so Dr. McCagg is taking you off Ridlin and will try something with less side effects.
Friday, March 7th... You and I are going to the circus. We will be going by access link with Susan and Sean. We leave at 9:10 and will arrive at 10:15. Well when I arrived at the center you were wide awake and very happy. We got on the van to leave and you fell asleep and never woke up for the rest of the day. The music, screaming, lights and action never woke you up. This is so out of character for you and Mom was really worried.
Saturday afternoon you did the same thing, when I arrived you were still in bed and awake. Greg came to spend time with you because Mom was going to Andrea’s for the weekend. You were very sleepy and calm.
Sunday, March 8th... I came to the center on the way home from Andrea’s and you went into another deep sleep all afternoon. Dad and I could not wake you up. You have not been the same since the Ambien study. Don’t know what it all means but it is unsettling.
Monday, March 9th... You started with agitation and you kept moaning and very uncomfortable. Andrea came at 3 and she said you were this way the entire session and she was very worried. The nurse gave you motrin but it took 2 hours for you to settle down.
When I called in the morning they said you had a temp and was agitated during the night. They had to give you adivan and I came to see you at lunch time and you were very agitated and restless. I felt so bad for you, I left to go back to work and Andrea came at 3. She tried everything to help you through this but nothing worked. Soft music, outside air, massage and a dark room to soothe you.
She called me at 6 and said you had a temp and was profusely sweating. I left home and drove down to be with you. Your temp kept rising so they decided to give you a adivan injection. At 8:30 my cell phone rang, it was Andrea, she came back to the center and brought dinner for us. She was very worried about you and needed to see you once again.
Wednesday you slept and we went for a cat scan. Thursday you were very calm and sleepy. Friday, you were awake when I got there and very calm.
Matt came to be with you so I could go home and do some work.
Saturday, March 15th... I arrived and you were very calm and sleepy. Elsie had to give you adivan in the morning and that made you sleep in the afternoon. I wish I knew what is going on with you because it makes it difficult to understand where you are coming from.
I am taking you to Uncle Fred’ on Easter Sunday.
Tuesday, March 4th... What a big day for all. You have been approved for the ambien study and it takes place today. It will start around 10 am, they will do the coma recovery scale test to get a baseline. Then they administer 10 mg. of ambien. If it works you will show signs of changing and becoming more alert and responsive. Unfortunately, you went to sleep which is what ambien is for. They tried to arouse you 2 times but were unsuccessful but on the 3rd try you were alert, focused and active. When the therapist administered the coma recovery test there was no change in performance. She believes when they gave you Ridlin is why you were so stimulated and alert. She also felt you were over stimulated and agitated so Dr. McCagg is taking you off Ridlin and will try something with less side effects.
Friday, March 7th... You and I are going to the circus. We will be going by access link with Susan and Sean. We leave at 9:10 and will arrive at 10:15. Well when I arrived at the center you were wide awake and very happy. We got on the van to leave and you fell asleep and never woke up for the rest of the day. The music, screaming, lights and action never woke you up. This is so out of character for you and Mom was really worried.
Saturday afternoon you did the same thing, when I arrived you were still in bed and awake. Greg came to spend time with you because Mom was going to Andrea’s for the weekend. You were very sleepy and calm.
Sunday, March 8th... I came to the center on the way home from Andrea’s and you went into another deep sleep all afternoon. Dad and I could not wake you up. You have not been the same since the Ambien study. Don’t know what it all means but it is unsettling.
Monday, March 9th... You started with agitation and you kept moaning and very uncomfortable. Andrea came at 3 and she said you were this way the entire session and she was very worried. The nurse gave you motrin but it took 2 hours for you to settle down.
When I called in the morning they said you had a temp and was agitated during the night. They had to give you adivan and I came to see you at lunch time and you were very agitated and restless. I felt so bad for you, I left to go back to work and Andrea came at 3. She tried everything to help you through this but nothing worked. Soft music, outside air, massage and a dark room to soothe you.
She called me at 6 and said you had a temp and was profusely sweating. I left home and drove down to be with you. Your temp kept rising so they decided to give you a adivan injection. At 8:30 my cell phone rang, it was Andrea, she came back to the center and brought dinner for us. She was very worried about you and needed to see you once again.
Wednesday you slept and we went for a cat scan. Thursday you were very calm and sleepy. Friday, you were awake when I got there and very calm.
Matt came to be with you so I could go home and do some work.
Saturday, March 15th... I arrived and you were very calm and sleepy. Elsie had to give you adivan in the morning and that made you sleep in the afternoon. I wish I knew what is going on with you because it makes it difficult to understand where you are coming from.
I am taking you to Uncle Fred’ on Easter Sunday.
Tuesday, January 1, 2008
January 1, 2008
Wow... I can’t believe it has been this long since I have written in my journal. You have been doing so well and Mom has been so busy with work and putting in a lot of extra hours.
For the first time in over 6 years I became ill after the holidays, I picked up a viral infection that kept me out of work for over a week and I couldn’t come and see you for 10 days. Just when I thought I was better and went back to work I got bronchitis.
You have been doing so well, Aaron, you have been healthy and strong and in great spirits. Andrea continues to come 2-3 days a week to work with you. She has been thinking about new and creative ways to help you to communicate and respond more consistently. She is what drives you to do more things and to be more independent.
You can assist with brushing your teeth, suctioning your mouth, shaving and combing your hair.
Andrea has taken you on some special trips that you have enjoyed so much and were able to participate. You went bowling and I was amazed at how the bowling alley set up the lane so you could still be in your wheelchair and bowl at the same time.
You spent an afternoon at the movies and saw an animated movie which you seemed to enjoy.
Andrea spent an afternoon at the library and picked out some cd’s and audio cd’s for you to listen to. You are so calm and relaxed when they are on, you truly enjoy the stories.
We now have access link and we can do more things and bring you on trips. Now that the weather is getting nicer Mom is going to bring you to Aun’t Ginny’s for a day so we can sit outside and enjoy the day together. You need a break from the center and a change in scenery.
For the first time in over 6 years I became ill after the holidays, I picked up a viral infection that kept me out of work for over a week and I couldn’t come and see you for 10 days. Just when I thought I was better and went back to work I got bronchitis.
You have been doing so well, Aaron, you have been healthy and strong and in great spirits. Andrea continues to come 2-3 days a week to work with you. She has been thinking about new and creative ways to help you to communicate and respond more consistently. She is what drives you to do more things and to be more independent.
You can assist with brushing your teeth, suctioning your mouth, shaving and combing your hair.
Andrea has taken you on some special trips that you have enjoyed so much and were able to participate. You went bowling and I was amazed at how the bowling alley set up the lane so you could still be in your wheelchair and bowl at the same time.
You spent an afternoon at the movies and saw an animated movie which you seemed to enjoy.
Andrea spent an afternoon at the library and picked out some cd’s and audio cd’s for you to listen to. You are so calm and relaxed when they are on, you truly enjoy the stories.
We now have access link and we can do more things and bring you on trips. Now that the weather is getting nicer Mom is going to bring you to Aun’t Ginny’s for a day so we can sit outside and enjoy the day together. You need a break from the center and a change in scenery.
Subscribe to:
Posts (Atom)
