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.