Christmas 2004, you are doing well and very alert. We are going to our house for Christmas Eve, even though we always have Christmas Eve with my family we are unable to access Fred and Nancy’s new house. Dad and I will stay home with you and Melissa will go to be with the family. You are doing well and all tucked in for the night. Dad and I are resting and will wait for Melissa to come home.
It is Christmas morning and Mom is exhausted, You did not sleep much and I kept checking you. You were calm and it was as if you knew where you were and just wanted to enjoy being there. You were looking around and listening to music. You were very relaxed and calm but not sleeping. You finally fell asleep around 5 in the morning so Mom decided to go to bed. I slept for several hours and Melissa and Dad woke up and we opened our gifts. You were still sleeping soundly.
We had a wonderful day, your Grandparents came and Aunt’s and Uncle’s and all your cousins. We enjoyed having you home and everyone got to spend time with you. Dad and I took you back at 7 p.m., it takes an hour to get you there and we always take our time.
New Years 2004, Dad and I always spend it with you at the center. You were doing well and everyone brought in food and we set up a buffet table so everyone could enjoy. We stayed until 8 p.m. and then it was time for you to go to bed. Your days are usually very long and we don’t like for you to be up any longer than you have to be in the chair.
Friday, December 31, 2004
Thursday, September 30, 2004
Fall, 2004
It is now fall of 2004 and you are improving steadily. You are vocalizing and saying a word here and there. Your vision is improving and you continue to get stronger and more alert. You are now eating pureed dinners at night and are becoming more consistent. Mom continues to come everyday and we walk outside and sit on the patio and listen to music.
The holidays are approaching and I would like to have you with us but on Thanksgiving we go to Aun’t Trudy’s and her house is too small. She always has the family and her family and there is not enough room for a wheelchair. We will come to see you first at the center and go to Aun’t Trudi’s later in the day.
We are planning on bringing you home for Christmas and keeping you overnight. I am so looking forward to it and we will have a wonderful time together. We found a van company to rent a van and will pick you up Christmas Eve and bring you home.
The holidays are approaching and I would like to have you with us but on Thanksgiving we go to Aun’t Trudy’s and her house is too small. She always has the family and her family and there is not enough room for a wheelchair. We will come to see you first at the center and go to Aun’t Trudi’s later in the day.
We are planning on bringing you home for Christmas and keeping you overnight. I am so looking forward to it and we will have a wonderful time together. We found a van company to rent a van and will pick you up Christmas Eve and bring you home.
Saturday, May 1, 2004
JFK
We just got word from JFK that you will be admitted on April 12th, 2004. They would like us there at 11 a.m. so I must get busy and pack things up. It will be very difficult leaving in one sense because we have become so close to all the staff. They have taken such good care of you and nurtured you and helped you grow.
The day has finally arrived and Dad, Melissa and myself are coming to the center early. We will spend time with everyone there and say our good-byes and move on. Mom drove with you in the van and Dad and Melissa followed. I have taken the rest of the week off so I could be with you and help you to get acclimated in your new environment. We arrived on time and we were escorted to room 220. Aida was your nurse and Debbie your aide. They had to evaluate you and check your vitals, weight and to check your skin for breakdown.
We decided to go to the cafeteria and get lunch while they worked on you.
Dad and Melissa got a cart and brought all your belongings in your room so we can set things up for you. We waited for part of the afternoon for your team of therapists to come and evaluate you as well. You were tired and rested for a while and we set up your room as best we could. You did not have a roommate at the time so that was nice for a while.
It is now 2 pm on April 12th and your team of therapists have arrived. Brian is your physical therapists, Linda is Occupational and Aubree is speech. They asked me a lot of questions about you and your accident. They did a thorough exam and moved you around quite a bit. They checked your tone and flexibility in your motor skills. They observed your positioning and Linda observed your vision. They took a lot of notes and said they would meet with me to discuss further and their plan of action.
Today is April 13th and I met with your team of therapists and you will be given 5 hours of therapy each day. It will be broken up in 2 sessions for each kind of therapy and one session the physical and occupational therapists will be working together. You will go to the gym and workout and be stretched and pulled and bounced around to see how you respond.
You are up in the morning by 9:30 and have therapies, some are in the room, some in bed and others in your wheelchair. You have your feed at noon and then lay down for a rest until 2 p.m. Linda and Brian come in and get you up and take you to the gym to workout.
Linda is observing you in the wheelchair and will make any necessary adjustments if needed.
Your team of doctor’s have arrived and their goal is to wake you up. You have been on medications that tend to make you sleepy so they have decided to wean you off of the valium and baclifin.
In June of 2004 you will be going to the hospital for an evaluation of the baclifin pump. It is a piece of equipment that is implanted under the skin and attaches to your spine. It holds medication that helps to relax the lower extremities and decreases your tone. Hopefully, it will be successful and you will be given the opportunity to do more things physically.
Well, all went well and on June 14th you received your new pump. It was started out at a low number and slowly increases as you need it. You responded so well that you only needed a small amount each day.
It is now summer of 2004 and you are making great strides. Aubree has taken you to the hospital to do a swallows test and determine what if anything you can eat orally. It was determined you can have pureed foods and thickened juices. I must say you have been doing well in the food department. You are eating well and working towards pureed dinners at night.
Aubree is working with you on making sounds and following commands. You are trying very hard and are becoming much more vocal. We know you can hear us and sometimes can follow our commands.
Linda your Occupational therapist has been working on your vision and upper extremities. She has decided to try casting your left arm to get a better extension and to decrease the tone. It worked successfully and you were able to straighten your left arm and be more flexible. Unfortunately, there was so much damage to the right side of your brain that your left side has been affected. You do not have much movement, if any at all and your left leg is extended at the knee and your left foot is turned in. There is a lot of work to be done but with casting and braces it should help correct some of the issues.
Linda will also be working on vision, your left eye is very weak and you are not tracking very well. There are therapies to help that but it is a wait and see. She suggested I take you to see Dr. Vicci, a neuro optometrist who specializes in brain injury patients.
Linda has also suggested you be seen by Dr. Genora who specializes in botox injections. They are tiny needles that are injected into the muscles to help relax you so you can be more flexible and they can correct your muscle impairments.
Dr. Genora came to see you and evaluate the situation and approval was given by the insurance company to proceed.
July 2004, Dr. Genora came to the center and you were given Botox in your right shoulder, left arm, left knee and left ankle. It takes up to two weeks to see the true results but you responded very well. Your positioning was better and Linda was able to cast your left leg and straighten it. You have been a real trooper Aaron, I am so proud of you.
We are trying to find a Special Education Teacher to come to the center and work with you 10 hours a week. The school district said you are entitled to it and I want you to have it. It is not easy finding someone during the day but I will keep trying.
The day has finally arrived and Dad, Melissa and myself are coming to the center early. We will spend time with everyone there and say our good-byes and move on. Mom drove with you in the van and Dad and Melissa followed. I have taken the rest of the week off so I could be with you and help you to get acclimated in your new environment. We arrived on time and we were escorted to room 220. Aida was your nurse and Debbie your aide. They had to evaluate you and check your vitals, weight and to check your skin for breakdown.
We decided to go to the cafeteria and get lunch while they worked on you.
Dad and Melissa got a cart and brought all your belongings in your room so we can set things up for you. We waited for part of the afternoon for your team of therapists to come and evaluate you as well. You were tired and rested for a while and we set up your room as best we could. You did not have a roommate at the time so that was nice for a while.
It is now 2 pm on April 12th and your team of therapists have arrived. Brian is your physical therapists, Linda is Occupational and Aubree is speech. They asked me a lot of questions about you and your accident. They did a thorough exam and moved you around quite a bit. They checked your tone and flexibility in your motor skills. They observed your positioning and Linda observed your vision. They took a lot of notes and said they would meet with me to discuss further and their plan of action.
Today is April 13th and I met with your team of therapists and you will be given 5 hours of therapy each day. It will be broken up in 2 sessions for each kind of therapy and one session the physical and occupational therapists will be working together. You will go to the gym and workout and be stretched and pulled and bounced around to see how you respond.
You are up in the morning by 9:30 and have therapies, some are in the room, some in bed and others in your wheelchair. You have your feed at noon and then lay down for a rest until 2 p.m. Linda and Brian come in and get you up and take you to the gym to workout.
Linda is observing you in the wheelchair and will make any necessary adjustments if needed.
Your team of doctor’s have arrived and their goal is to wake you up. You have been on medications that tend to make you sleepy so they have decided to wean you off of the valium and baclifin.
In June of 2004 you will be going to the hospital for an evaluation of the baclifin pump. It is a piece of equipment that is implanted under the skin and attaches to your spine. It holds medication that helps to relax the lower extremities and decreases your tone. Hopefully, it will be successful and you will be given the opportunity to do more things physically.
Well, all went well and on June 14th you received your new pump. It was started out at a low number and slowly increases as you need it. You responded so well that you only needed a small amount each day.
It is now summer of 2004 and you are making great strides. Aubree has taken you to the hospital to do a swallows test and determine what if anything you can eat orally. It was determined you can have pureed foods and thickened juices. I must say you have been doing well in the food department. You are eating well and working towards pureed dinners at night.
Aubree is working with you on making sounds and following commands. You are trying very hard and are becoming much more vocal. We know you can hear us and sometimes can follow our commands.
Linda your Occupational therapist has been working on your vision and upper extremities. She has decided to try casting your left arm to get a better extension and to decrease the tone. It worked successfully and you were able to straighten your left arm and be more flexible. Unfortunately, there was so much damage to the right side of your brain that your left side has been affected. You do not have much movement, if any at all and your left leg is extended at the knee and your left foot is turned in. There is a lot of work to be done but with casting and braces it should help correct some of the issues.
Linda will also be working on vision, your left eye is very weak and you are not tracking very well. There are therapies to help that but it is a wait and see. She suggested I take you to see Dr. Vicci, a neuro optometrist who specializes in brain injury patients.
Linda has also suggested you be seen by Dr. Genora who specializes in botox injections. They are tiny needles that are injected into the muscles to help relax you so you can be more flexible and they can correct your muscle impairments.
Dr. Genora came to see you and evaluate the situation and approval was given by the insurance company to proceed.
July 2004, Dr. Genora came to the center and you were given Botox in your right shoulder, left arm, left knee and left ankle. It takes up to two weeks to see the true results but you responded very well. Your positioning was better and Linda was able to cast your left leg and straighten it. You have been a real trooper Aaron, I am so proud of you.
We are trying to find a Special Education Teacher to come to the center and work with you 10 hours a week. The school district said you are entitled to it and I want you to have it. It is not easy finding someone during the day but I will keep trying.
Friday, April 30, 2004
Thoughts
I miss you so much Aaron, this house is so empty without you. I don’t think I can stay here if you can’t come home for good. The memories are too painful and I need to be closer to you so I can come and spend time whenever I want. I know now is not the time to be worrying about such things, first and foremost is you and the time spent at JFK.
Sunday, April 18, 2004
Melissa's 25th Birthday
Melissa’s birthday is April 18th and she will be 25. She thinks of it as just another day but I think of it as a milestone. I am planning something special for her and I think she is going to love it. Beth is coming up on the 17th to take her to the City and see a show and dinner. On the 24th all the cousins and her friend Jaimee are going to take her to the city for dinner and clubbing. The surprise is a stretch limo to take them in.
Friday, April 2, 2004
April 2, 2004
Today is Saturday April 2, and I am setting goals to get as much done this weekend so I can be ready for when you have to be moved. I will not be here very often because of the distance so I will be spending time at Liz’s and Sue’s. They are fortunate enough to live close to work and JFK and have invited me to stay over. It is important for me to come and see you so I can check on you and make sure your needs are being met. I know you will be very busy during the day but I will be there in the afternoons to see you. Unfortunately, Dad will not be able to make it during the week so you will have to be very awake and responsive when he comes on the weekend.
Saturday, February 28, 2004
JFK
I finally had some confirmation from the Director of Admissions at the Center that they are approving your pass to JFK. It is just a matter of time now and you will be going there with the hope of being able to fight your way back to us. There is so much we don’t know and this opportunity will give us hope for the future. You are in for a long hard road but you have always been very stubborn and determined to win. I believe with all my heart you can do this. Now more than ever you will face the toughest challenge of your life, but one that will be well worth it.
We are still waiting to hear from JFK and there are so many things I hesitate to do because we don’t know how things will turn out for you. I need to hold on to the hope that they can help you recover so that you can have some quality of life. I pray that one day you will walk and not need a wheelchair, but most of all that you will come home one day. If for whatever reason none of the above is meant to be than I have to find some way to move on. Choices will have to be made in regard to making the house handicap accessible or selling and finding another home to allow you to come home even for a short time. The other big decision is a handicap van. If we buy one it will give us the opportunity to bring you home on the weekends and take you out on day trips. Wouldn’t that be great! I am feeling so overwhelmed right now and I need to take one step at a time and will continue to pray for guidance.
We are still waiting to hear from JFK and there are so many things I hesitate to do because we don’t know how things will turn out for you. I need to hold on to the hope that they can help you recover so that you can have some quality of life. I pray that one day you will walk and not need a wheelchair, but most of all that you will come home one day. If for whatever reason none of the above is meant to be than I have to find some way to move on. Choices will have to be made in regard to making the house handicap accessible or selling and finding another home to allow you to come home even for a short time. The other big decision is a handicap van. If we buy one it will give us the opportunity to bring you home on the weekends and take you out on day trips. Wouldn’t that be great! I am feeling so overwhelmed right now and I need to take one step at a time and will continue to pray for guidance.
February, 2004
Today is February 10th and the time has come for me to start packing up your things at the center for your move to Edison. I want to make your room special so you feel at home. I will bring your special plaques and make a collage of pictures for you to look at. We will bring your stereo and TV and CD player. Debbie Miller’s Mom made you 4 great pillows for you to bring with you. She wanted to make sure you were comfortable. I hope one day we can meet her because she has been praying for you everyday.
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It is now Friday and I woke up to thick ice, snow and rain. I did not want to take a chance and walk outside, especially since Daddy fell in the driveway. So, Melissa and I are chilling and going to stay home. I am still not feeling well so I am going to take advantage and get some rest. I miss you terribly.
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Today is Saturday and I am planning on coming to see you and I can hardly wait because I have not seen you in a few days. You look wonderful and Dad will be coming later. We had a surprise visit from the Caruso’s and that is always nice. Erin is bowling awesome and was in the state tournament. She did not make it after the first round.
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Tomorrow is Valentine’s Day and I am going to bring you balloons. Melissa and I are going to get our nails done and then I am coming to see you.
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It is now Friday and I woke up to thick ice, snow and rain. I did not want to take a chance and walk outside, especially since Daddy fell in the driveway. So, Melissa and I are chilling and going to stay home. I am still not feeling well so I am going to take advantage and get some rest. I miss you terribly.
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Today is Saturday and I am planning on coming to see you and I can hardly wait because I have not seen you in a few days. You look wonderful and Dad will be coming later. We had a surprise visit from the Caruso’s and that is always nice. Erin is bowling awesome and was in the state tournament. She did not make it after the first round.
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Tomorrow is Valentine’s Day and I am going to bring you balloons. Melissa and I are going to get our nails done and then I am coming to see you.
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