Aaron George Hill

April 11-16, 2008

2008-04-16T23:29:00.000-04:00

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.

Easter Sunday

2008-03-23T23:31:00.000-04:00

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.

March 3-15, 2008

2008-03-15T23:27:00.000-04:00

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.

January 1, 2008

2008-01-01T23:25:00.000-05:00

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.

December 28, 2007

2007-12-28T16:34:00.000-05:00

Today is December 28, 2007 and I would like to reflect on this past holiday. For the most part, the holidays are very difficult because of the void I feel since Aaron’s accident. I try to make the most of it and always include Aaron in our plans. It is very important to me that he be with us to celebrate the occasion and not spend it in rehab.

About a week before Christmas I came home to a package addressed to Aaron. It was from Santa in Nomb Alaska. When I opened it there was a wrapped present and a letter inside. The letter touched my heart and I knew it was from someone who knows Aaron well. I took the letter and gift to the center so I could read the letter to him and let him open the gift as much as he could.

The letter was anonymous, signed from Santa. It was a beautiful letter that spoke about Aaron’s fight to get better and how he is admired by many.

We opened the gift together and inside was a red digital camera, obviously someone knew his likeness for the color red. The camera was a wonderful gift for Aaron and one that will be put to good use.

Thank you whoever you are for your thoughtfulness and kindness. Most especially for remembering after 5 years.

Aaron is truly blessed!

Christmas day was a wonderful day, Aaron was with us at my sister’s house and he was able to see his Aunt’s and Uncle’s, cousins and Grandfather.

It is the quality of time one shares with family and friends that make it so special.

Thanksgiving - Christmas Holidays

2007-12-26T23:48:00.000-05:00

Today is November 27, 2007 and it has been so long since I wrote in your journal. You have been doing very well, alert and focused, you have been eating well and very calm.

Andrea comes on Monday and Tuesday for approximately 6 hours and works you very hard. You respond so well to her and follow her directions. It may take a session for you to do one task but you do it and do it well. You are always very proud of yourself and smile all the time.

I have some concerns about your weight because you lost 6 lbs. in a month. You are on a continuous feed and when I come in the afternoon I will disconnect you and feed you yogurt and fruit. Now they are watching you closely and monitoring your weight.

The nature path walkway is completed and we go for walks when the weather cooperates. We will sit under the pergola and read often times where it is so peaceful and quiet.

Mom has been struggling with so many things Aaron, I am trying to stay strong for you but sometimes it is very hard. I long for you to be home with us but it would be very difficult to care for you. My saving grace is work which allows me the freedom to let it go for a little while.

There has been so much talk on the news about new research for brain injury patients and I pray that one day you will be able to be part of the studies. However there is so much controversy with regard to the plates in your face. So much depends on getting clear pictures with an MRI and the plates may distort the pictures. I continue to pray for you and that one day you will be able to have some quality of life. For now I will come daily and be sure you have everything you need.

For the past several weeks you have been very congested and I was concerned it would go into your lungs. They had to keep deep suctioning you in order to get it out. It made it difficult for you to breathe easy but you did not have a fever and was in good spirits.

Dad went on his annual golf trip to Tampa. He turned 60 on the day he left so we did not get to celebrate.

Thanksgiving we went to Aun’t Trudy’s for dinner, it will be the last one because Laura wants to start having it at her house. She won’t be able to accommodate all of us so things will be different for us.

Today is December 1st, 2007 and Mom is having a surprise party for Dad. He does not suspect a thing and his friends from work and golf friends will be there. I am looking forward to it, there will be a DJ and approximately 50 people. The only thing that saddens me is not having you a part of it. The party is at night and you have been congested and Mom does not want to take any chances.

Andrea continues to come on Monday and Tuesday, you have been alert and focused and doing well for her. She is very proud of you and tells me how hard you are working. She started a bible study at the center on Tuesday’s and it has been very successful. It is people coming together sharing God’s words, reading special psalms and listening to beautiful music. We begin and end with prayer.

On December 14th Mom will be going to Andrea’s for the weekend. She wants me to see Bethlehem at her church which is on Saturday and Sunday. I am looking forward to time away, it is always so relaxing for Mom and it gives me time to separate myself from the stress and worries that I feel everyday. You will be well taken care of and will have people coming to visit. Mom will call everyday and talk to you on the phone.

Well, the 14th is here and I am coming to the center to see you first and then onto Andrea’s. I left about 2:15 and arrived at her house around 3:30. We had to be at church by 5 so it was a little hectic but oh so beautiful. We stayed up until 3 talking, laughing and sipping wine.

We relaxed and hung out on Saturday, Mom cleaned Andrea’s new refrigerator and had some down time after Andrea left for Church. I decided to stay behind and do some work and went to Bethlehem later.

I met with Pastor Mike of the 5 Church, he runs the youth church in Forked River. He asked if I would come to his service in March and tell our story He feels it will help other people. Mom is a little nervous but I truly believe it is important for other people to know. I have to write down my thoughts and send them to Pastor Mike to read.

On Sunday we went to a Christmas show in Burlington NJ it was beautiful. You felt like you were in Radio City Music Hall. I left to come home on Monday morning, it was a very special weekend for Mom to be able to share it with Andrea. She gave Mom an opportunity to let it all go even for just a little while.

The holidays are approaching and hopefully you will stay healthy and come to Aun’t Ginny’s for the day on Christmas. I am especially glad for PopPop to be able to spend time with you. I pray Melissa will come so she can be with you as well. NJ transit is picking us up a 1 pm and bringing us back at 7.

Andrea is in Florida with her Dad and will not be back until the 1st of January. We won’t see her for several weeks but she is need of much rest with her busy schedule. She will be playing golf and relaxing in the sun. It does not get any better than that.

Mom has been working a lot of overtime because of the new system at work. I will be working during Christmas break but looking forward to not having to get up to an alarm clock going off.

Melissa will be home for the holiday but leaving for Atlanta, Ga on the 27th. She will be back after New Year.

Dad will be off from work this week as well, we hope to take apart the attic a little at a time. There is so much stuff up there and half of it I don’t even remember.

For anyone who may be reading this journal, Aaron and his family would like to wish all of you a very Merry Christmas and a Happy New Year!

October 12, 2007

2007-10-12T20:14:00.000-04:00

Today is Andrea’s birthday and you are supposed to go to the High School for the Drivers Ed classes to tell your story. I wrote it and Matt will read it and share your photo album for all to see.

September 19-22, 2007

2007-09-22T20:09:00.000-04:00

You have been very quiet your body temperature is still running low. They keep warming you up and give you hot tea thru the G tube. Hopefully you will start to feel better soon and be back to your old self.

I have been putting in long hours with work due to a back log of work. I missed seeing you 3 nights this past week. Even though there was someone with you it was not the same for me.

You seem more alert and your body temp. is back to normal. You lost 3 lbs. this month, which may not seem like a lot but with everything else that has been going on I worry.

Dr. Meir came by to see you and he put you on a antibiotic for your ears.

Saturday, September 22nd...You were sound asleep in the dayroom when I arrived. When you woke up you were smiling and very content. We went downstairs and I gave you fruit and yogurt and we spent the rest of the afternoon together.

Dad didn’t come, he was not feeling well and decided to go home after Bernardsville.

Uncle Jamie and Julianna came down to visit and they got to hear you vocalize while you were on the phone with Dad. It was great!

Next Sunday we are having a party for you in the dayroom for your 23rd birthday. The family, friends and families at the center will be coming down to join us. Uncle Fred is doing all the food and I am going to get an ice cream cake from Baskin Robbins. Hopefully, the Caruso’s and Aun’t Dara and Uncle Jack will be able to come. I also asked Liz and Pete to join us. I don’t know if any of your friends will make it but I asked Melissa and Amy to come.

God willing you will be healthy and in great spirits.

Labory Day - September 18, 2007

2007-09-18T20:05:00.000-04:00

It is now Labor Day and the end of summer. School will be going back in and you have been doing well. Your friend Melissa has been in touch and she is organizing a time when she can bring her friends to meet you and Sean. I am so excited that you will have someone to work with you and help you with communication skills. I t is nice for me as well because I can take some time for myself and know you are in good hands.

Andrea has started back to Carteret High School and Seton Hall. She is overwhelmed with her studies and teaching and I know we will not be seeing her for a while. She keeps in touch and asks about you all the time. We will miss her but I know if we ever needed her for any reason she would be there. We wish her well!

Melissa is very busy with work and school as well. S he works at home every night and she is just getting over being sick.

Tuesday, September 11th was not a good day for you. Unfortunately, you became ill and started with the high temps, agitation and sweating. They had to put you on a cooling blanket and give you morphine and adavan. i had not seen you like that in months and it was devastating. I was so scared. Veronica hooked up an IV and sat by your bedside until you calmed down. The next several days you were still not yourself, you were pale and tired. Your body temperature was between 95 and 97. Melissa, the OT, came and spent time with you so you were not alone. I have been glad to have her, especially since she has been working overtime.

The remainder of the week you were restless and very uncomfortable. On Friday I noticed drainage from your ear and told the nurse. S he was going to contact Dr. McCagg and see what she wanted them to do. With the weekend coming they decided to put you on antibiotic drops and on Monday they were calling Dr. Meir for a consult.

Friday, Sept. 15th...You were very agitated and I believe you were having pain. Saturday and Sunday you were very quiet and your body temperature was running cold. The nurse warmed you up with blankets and warm tea.

Monday, Sept. 18th...You were quiet and very sleepy. They put you in bed at 4:30 and you went into a very deep sleep. You were cold and they once again warmed you up with blankets. I am not sure what is going on but the Dr. said she believes you have an infection. Now they just have to find it.

August 20 - September 1, 2007

2007-09-01T21:02:00.000-04:00

Things have remained the same for you. You are alert and focused and have been very healthy. We have enjoyed the end of the year barbecue and the time spent with Andrea.
On the 30th of August we will be going to the Turtle Back Zoo, one of Andrea’s ideas and one which the center thought was a great choice.

Melissa, the occupational therapy student, approached me and said she will be done working at Hartwyck on the 22nd of August. S he is free until the 14th of September so she will be working with you 10 hours a week until that time.

August 23rd, 2007... you have been running a temp since 2 a.m. and Dr. McCagg came in to insert an IV. You were in bed all day Saturday and still sick through the night. At 4 in the morning you were 104 and I decided to go to church early and come to the center. I am glad I did because your body temperature dropped to 87. I was very worried and it took hours for you to warm up. At 2:30 you were 95 and they decided to get you up. I covered you with a blanket and you were calm, very quiet and very congested.

Monday you were better, still congested and they still had the IV in but you were stable.
You continued to get stronger and were more responsive as the days went by.

Thursday, August 30th... you were well enough to go to the zoo. It has been several weeks since we saw Andrea, we are looking forward to it very much. There were 10 of us, 5 patients and 5 adults. It was a great day and we had so much fun. It was hot but there was a breeze and we trucked up those hills like troopers. The zoo was very accommodating and opened the pavilion so we could enjoy our lunch. One of the workers came in during that time and did a little show and had two animals for all to see. One was a baby alligator and the other a Boa. Aaron touched the Boa and was very attentive. I took a lot of pictures for all to see.

Friday, August 31st... Melissa came and spent time with you outside. You watched a basketball game and she said you were vocalizing. I came later and fed you for the first time in a week. I did not want to take any chances with all the congestion.

This is a big weekend, Labor day and the end of summer. I am until Tuesday. I took off Wednesday, Thursday and Friday as well. I have been busy doing things at home and then spending time with you.

I have been very busy in your room, it needs to be painted. I am going to leave it the same color on the bottom, red however I am changing the color on the top. I am going to paint it a light grey. I will put all your special plaques and trophies to be seen by all and put all your stuffed bears and gifts you received after your accident.

September 1st... I went on your website and viewed your guestbook and was pleasantly surprised. There were entries made by two of your classmates, Melissa Shaw and Amy Kahaly. It was so great to hear from them and even better was their visit to see you at the center on Saturday. They arrived at 4 pm and I got to leave so Dad and I could go to a barbecue and you got to spend time with them.

Melissa is a Special Education Student and this is her final year. She will be student teaching in Roxbury. She also gave me some exciting news that will help you so much. She belongs to a special education group of 15 students who need to do 200 hours working with special needs. They are available during the day to work with you. She is emailing them and will get back to me and hopefully we will be able to set something up. This is so exciting not only for them but for you as well.

August 1-18, 2007

2007-08-18T20:58:00.000-04:00

It has been some time since I have written and there is much to tell. Aaron continues to thrive and has been extremely healthy and in great spirits. He is alert and focused, he is eating soft foods daily and he is enjoying his time with his teacher, Andrea, very much.

Andrea comes 4 days a week from 12:30 to 3:00 and works with him continuously. She does many things with him such as, reading, art projects and command following. She does a lot with visual and tries to have him distinguish between different objects. Aaron cannot vocalize but he can use his eyes or his right hand to point.

Andrea will be leaving on the 14th of August and it will be a sad day for Aaron. We will miss her terribly but before she goes they will be taking a trip on the 13th of August to Roosevelt Park. It will be a special day for both of them to have this time together and create wonderful memories.

A lot has been happening at the center because of the airing of the new procedure called Deep Brain Stimulation. It has been used on Parkinson’s patients but now it has been tried on a Traumatic Brain Injury Patient. The news is worldwide and there has been a lot in the media. People are calling from all over the world to tell their stories.

The center has been taking a long hard look at the patients there to determine if anyone qualifies. The criteria is very stringent and the guidelines must be met in order to be eligible.
We do not know what the future holds for Aaron but we pray everyday for that one miracle for Aaron.

Friday, August 10th... I went away again for the weekend. I was invited to Lanoka Harbor to spend some time with Andrea. It was wonderful, the weather on Friday was a downpour but Saturday and Sunday were gorgeous. We did fun things, laughed a lot and I ate clams on a ½ shell raw. They were quite good and I had some wine spritzer. We went to the boardwalk on Saturday night to see a concert and Sunday we went to church and I went to Andrea’s bible study group. It was a blessed weekend and I got to let go for a little while and enjoy the time. I told Andrea it was the greatest gift she could ever give me.

One of the nicest things for me was the time you got to spend with your sister. She came Saturday afternoon and spent so much time with you and enjoyed it so much. She said you smiled a lot and were alert and focused the entire afternoon. I was so happy to hear that she enjoyed her time with you so much.

Monday August, 13th... and today is your big day at the park. Andrea will be coming by 10:30 and you will be leaving at 11:00. The park is not far and the weather is beautiful. You will be fishing and feeding the geese and taking a nature walk. Andrea said you ended up on the tennis courts, too bad we did not think to send your racket. I asked Andrea to take a lot of pictures so that you and her can share special memories together.

Tuesday, August 14th... today my heart is very heavy because it is time for Andrea to move on. She has made so many sacrifices to be with you this summer. She worked so hard and never once complained, she was always there and very committed not only to her job but to you especially. Her compassion and her commitment never went unnoticed. You were so attentive to her when she read to you and would acknowledge with a squeeze of the hand and your smile. She will be missed! Thank you Andrea!

Today I had 3 interviews for a new job in my department. It will be a promotion if I should get it. There were 10 processors that applied and we will find out the week of August 27th.

The rest of this week you have been so calm, alert and focused. I am so proud of you Aaron, you continue to fight very hard and your smile says it all.

July 30, 2007

2007-07-30T15:47:00.000-04:00

I came my regular time and Andrea called me but had to leave early. Her Grandma is in the hospital and she had to go home to take care of Lacey. I stayed for a while but then left early for my Drs. Appt. I have borderline diabetes and now have to make some drastic changes if I want to feel better and prevent other things from happening.

July 29, 2007

2007-07-29T15:46:00.000-04:00

I went to Grace church in the morning and enjoyed it very much. I then came down to see you and got caught in a terrible rain storm. There was flooding and thunder and lightening. I was afraid my car was going to stall out but I got to Hartwyck okay. I called dad and told him to re-think coming because of the floods. It did eventually stop raining and cleared out but it got extremely muggy.

You had a surprise visit from the Caruso’s and you seemed to enjoy your time with Edna a lot. She has this way of drawing you to her and you respond so well.

Week of July 23, 2007

2007-07-28T15:44:00.000-04:00

Monday you were very alert and focused. You ate well and you have been responding well with your sessions with Andrea.

Tuesday, July 24th... I had to go to the Health center for a meeting with the Dr. to discuss my blood results. I have elevated sugar levels and I have been light headed and getting headaches. I need to make an appt. with Dr. Trader to discuss and meet with a nutritionist to consult. You looked great as usual and in very good spirits.

Wednesday, July 25th... I had closing at work and could not come to see you but Andrea was kind enough to stay until 4. You did well and were very relaxed in the dayroom listening to music.

Thursday, July 26th... You awoke with a temp. and Elsie gave you something for comfort. You were okay but very pale and quiet. When I got there you were with Andrea and she took you in the dayroom to listen to Rich play the quitar and sing. You seem to really enjoy it and even managed to shake the moracco’s.

Friday, July 27th... I came at 12:30 to check on you but left by 2 to run some errands. Matt stayed the rest of the afternoon.

Saturday, July 28th... You were very alert and focused. I was not happy because they leave you in bed until after lunch and that is too long. I like you up by 11 or 11:30 but I don’t always get what I wish for. Dad came down and spent some time with you as well. It was not a good day to go outside there was a lot of heat and humidity

July 21st-22nd, 2007

2007-07-22T15:43:00.000-04:00

You were very alert and focused. I tried to do all the things Andrea works on with you during the week. Sometimes you did not co-operate but that was okay. I like to come and just be with you and chill. You did well with the tennis racket and you were trying very hard to vocalize.

July 20, 2007

2007-07-20T15:42:00.000-04:00

I took the day off and went home after work. Matt came and spent time with you so I could run some errands. You were very active and apparently restless at times. I called Marge, the massage therapist to come and work with you for a short time with the hope it will relax you and you will be more comfortable. It seems to work everytime.

July 19, 2007

2007-07-19T15:42:00.000-04:00

Today is Aun’t Nancy’s birthday. You have been doing very well this week, you are alert, focused and enjoying your time with Andrea. She is working on you being more independent and trying to assist you in feeding yourself and brushing your teeth. So far I must say you seem to understand everything and continue to thrive. You have been very active physically and when she places the tennis racket in your hand you will attempt to move it. Not an easy task for you to accomplish.

July 18, 2007

2007-07-18T15:41:00.000-04:00

I have a car wash, fundraiser, team builder at work. I am the “Sunshine Crew” wearing yellow and we are raising money for St. Jude’s Children’s Research Hospital. It should be fun, there will be 200 workers and it is open to all employees with a $5.00 donation per car.

July 17, 2007

2007-07-17T15:41:00.000-04:00

I asked Andrea to let me know how you were when she arrived and she sent me a picture of you saying you were fine. You looked great and when I arrived you were playing a musical instrument to Bon Jovi. You looked awesome and extremely relaxed and smiling.

July 16, 2007

2007-07-16T15:40:00.000-04:00

I came to the center early to take you to the hospital for a special test. You have to be sedated so you are very still on the table and you will be injected with a dye. We won’t have results for several days, I hope you will be okay.

July 13,2007

2007-07-13T15:38:00.000-04:00

Today is Friday, July 13th and it is PopPop’s 85th birthday. I will not be seeing him today, we will be celebrating next weekend. I was hoping to bring you with us but they are not going until 6 pm and that will be too late.

I am leaving today at 2 to go to Andrea’s house for the weekend. I am really looking forward to the time spent with her and enjoying the change of pace and to be able to let go just a little bit. She is having a party for her Aunt on Saturday and we will be very busy but it will be a fun kind of busy. It will help me to forget for a short time and focus on other things. I will not know any one but I am sure I will be very comfortable and enjoy myself.

Andrea has a beautiful home on the water, in the morning when I got up I would sit outside and the water was very still and the scenery was breath-taking. There was such peacefulness and calm that was so soothing. I thought about you often and how much you would have enjoyed being there. I could see you crabbing and jumping off the dock. You always did have a good time wherever you went. I will never forget the time over Sally’s when you went jet skiing and the jet ski sunk. I was cracking up and you were so mad because you had to come back to the dock.

On Sunday, Andrea and I went to her church and I must say I enjoyed it very much. There was a lot of singing and a sermon and of course I cried. I always do in church. I may find a church by me and try it to see if I like it better.

I can’t help but wonder sometimes where you would be today, would you have finished college and what would your major have been. Would you still be part of the church youth group and would you be living at home. All these thoughts that really don’t matter, what matters is today and making sure you have everything you need. That your life as it is will be filled with love and compassion. That you will stay healthy and strong and continue to fight hard whatever comes your way.

Week of July 9, 2007

2007-07-09T15:38:00.000-04:00

You have been very alert and focused. We did not go to the park on the 6th because the van was not available. We will have to try for another day when the weather is nice. Dad and I watched the documentary and I must say it was most difficult to watch. The past 5 years did not prepare me for what I saw in the film. I pray it will be seen by many and make people more aware of the trauma we live on a daily basis.

Iwill be going away for the weekend. The first time I will be away for 2 nights but I know you will be fine. Matt will be there Friday afternoon and Dad on Saturday. I will be back on Sunday and come and visit with you on my way home.

You had another great week with Andrea, you seem to enjoy doing projects, listening to your CD’s and especially when she reads to you.

July 4-6, 2007

2007-07-05T19:38:00.000-04:00

July 4th... Dad and I spent the afternoon with you. You have been doing very well, you are alert, focused and eating well. You have been enjoying your time with Andrea, most especially when she reads to you and you listen to the audio cd’s she bought for you. Your facial expressions tell it all.

Monday we went to the hospital for a cat scan and everything went well. We saw people who took care of you two years ago when you were very ill. They were so happy to see you so alert and focused. The results of the cat scan were good, nothing changed.

July 3rd there is a HBO documentary that Dad and I will be watching. It is filmed at Hartwyck at Oak Tree where you reside. It will be very difficult to watch but it is very important that as many people as possible get to see it. People need to know at least in part the difficulties families face each day with brain injury. The show will air throughout the month of July and I will watch it every chance I get.

We have been blessed with beautiful weather and I have been able to take you outside on the patio. You continue to do well, you have been so content and have this peacefulness and calm that is very comforting to me.

Andrea did not have to teach summer school Monday or Tuesday and was able to come in the morning to be with you. Monday she got to take you to a barbecue on the patio and Tuesday she got to see you on the tilt table.

On the 16th of July you will be going to JFK hospital for a special test ordered by Dr. Medina. The past two years you have been having episodes of brain storming with high fevers and profuse sweating. They have to put you on a cooling blanket and every time this happens your blood work shows elevated liver enzymes. You also appear to be in pain especially on your right side. The test is called MRCP and it is a MRI of the pancreas, liver, kidneys, gall bladder. The doctors are now thinking there is something triggering the episodes.

I have Thursday and Friday off this week and I am looking forward to the time to myself. I will be down to see you of course but I can now get some things done in the house. Our kitchen, living room and dining room are now completely done and I now have the task of putting everything back.

July 6th... Susan, Sean, you and me will be going on a day trip. Not sure where it will all depend on the weather. If it is nice we will be going to Roosevelt Park otherwise we will go to the mall. I have some shopping I can do so it will be fun either way.

June 27-28, 2007

2007-06-28T19:36:00.000-04:00

June 27th,... Once again you were very alert and focused. You continue to thrive and you have this peacefulness about you and it is as though you are content in your own world. Your smile brings such joy and I truly believe it is your way of saying everything is okay.

June 28th... I arrived about 2:45, just in time to see Andrea before she had to leave. It was another great day and you have been responding so well. You enjoy the readings so much, your facial expressions tell all. It was a great week and I pray you will continue to grow.

June 23-26, 2007

2007-06-26T19:34:00.000-04:00

June 23rd... When I arrived you were up in the chair but very sleepy. Your eyes were very red and irritated and Elsie your nurse said you were very sleepy and somewhat lethargic. Sometimes after going through the episodes of storming and high fevers it wipes you out and you need time to recover. However two days of sleeping is a little too much and there was some legitimate concern. I was very worried about you, I took you outside for a while but you did not respond. When they put you in bed you did not wake up, respiratory came in to give you a breathing treatment because you have been some what congested.

June 24th..., I decided to come early to see for myself how you were. I prayed you would be more alert and responsive. When I arrived you were still in bed and your eyes were closed and you looked extremely relaxed. I thought you were sleeping but Elsie was so happy because you were responding to her. She called out your name and you opened your eyes immediately and then smiled. I was so thrilled to be able to see your eyes open and your smile said it all. We had a great afternoon, spent time outside and you were alert enough to eat some pears. It was truly a blessed day!

June 25th... You were very calm but alert. Today Andrea will come and spend time with you. She bought some things to work with you and is looking forward to the time she will be working with you. I can’t come to see you to day because of work and month end.

Andrea called to let me know you were doing well and you were alert. You seemed to enjoy your time with her and she said you remembered her. She is not one you will easily forget, she has a tremendous impact on people, always positive, compassionate and very patient.

June 26th... I arrived at 1:45 and Andrea was in the dayroom with you. It was great seeing her and we spent time with you. She got to feed you so she can give you a snack when she comes and I showed her some other things she can do for you when she is with you. It was a great afternoon, you were very alert and smiled all the time.

I had a meeting with Dr. McCagg and we decided to decrease the morphine and you will be going for several tests. Dr. Medina wants you to have a MRCP of the abdomen and a cat scan of your head. Maybe we can find a cause as to why you have these episodes of brain storming and fevers.

June 23-26, 2007

2007-06-26T19:33:00.000-04:00

when I arrived you were up in the chair but very sleepy. Your eyes were very red and irritated and Elsie your nurse said you were very sleepy and somewhat lethargic. Sometimes after going through the episodes of storming and high fevers it wipes you out and you need time to recover. However two days of sleeping is a little too much and there was some legitimate concern. I was very worried about you, I took you outside for a while but you did not respond. When they put you in bed you did not wake up, respiratory came in to give you a breathing treatment because you have been some what congested.

Sunday, June 24th, I decided to come early to see for myself how you were. I prayed you would be more alert and responsive. When I arrived you were still in bed and your eyes were closed and you looked extremely relaxed. I thought you were sleeping but Elsie was so happy because you were responding to her. She called out your name and you opened your eyes immediately and then smiled. I was so thrilled to be able to see your eyes open and your smile said it all. We had a great afternoon, spent time outside and you were alert enough to eat some pears. It was truly a blessed day!

Monday, June 25th, 2007 you were very calm but alert. Today Andrea will come and spend time with you. She bought some things to work with you and is looking forward to the time she will be working with you. Mom can’t come to see you to day because of work and month end.

Andrea called to let me know you were doing well and you were alert. You seemed to enjoy your time with her and she said you remembered her. She is not one you will easily forget, she has a tremendous impact on people, always positive, compassionate and very patient.

Tuesday, June 26th, Mom arrived at 1:45 and Andrea was in the dayroom with you. It was great seeing her and we spent time with you. She got to feed you so she can give you a snack when she comes and Mom showed her some other things she can do for you when she is with you. It was a great afternoon, you were very alert and smiled all the time.
Mom had a meeting with Dr. McCagg and we decided to decrease the morphine and you will be going for several tests. Dr. Medina wants you to have a MRCP of the abdomen and a cat scan of your head. Maybe we can find a cause as to why you have these episodes of brain storming and fevers.

June 22, 2007

2007-06-22T19:28:00.000-04:00

I stayed at the center until very late. You were not well and your temp was high and you were extremely sweaty. They put you on the cooling blanket and gave you Ativan to help calm you. They are now certain there is something triggering the storming. They are taking a closer look at your liver functions and will be ordering further testing.

Thursday, you had a rough morning and they did not get you up until noon. When I arrived at 3 you were very calm and with the teacher. She was reading to you and you seemed to be enjoying it very much. After she left we went outside, it was beautiful. You seemed to be doing well but it was short-lived. You started to become agitated and uncomfortable and when they put you in bed you had a hard time settling down. After a time they had to give you medication to try to calm you but your temp went up to 102.9 and you were very sweaty. You finally fell asleep and the aides came to change you and make you more comfortable. I did not leave until very late again and was extremely emotional and very worried about you. It breaks my heart and I feel so helpless because all I can do is watch and try to calm you

June 17, 2007

2007-06-17T19:26:00.000-04:00

It is Father’s Day and I came early to spend time with you. You were sleepy but stayed awake the afternoon. We did not go outside it was too hot and Dad and Melissa went to Pop Pop’s and I met them there later.

Monday, you were very agitated in the morning and running a temp. I came down to see you and we spent time together. You were very calm but extremely exhausted from all the brain storming. Tuesday morning you were not feeling well and Dr. Meir came to see you. You have double ear infections which definitely attribute to your fevers and pain.

June 15, 2007

2007-06-15T19:24:00.000-04:00

You are finally feeling better even though you are still congested but alert and focused. I was able to take you outside and we spent quality time together. The weekend was the same for you, you were alert and focused and did very well eating. You are still running a low grade temp and I requested they bring in Dr. Meir to do an evaluation of your sinuses and ears. You still have tubes in your ears and often times they get infected.

June 13, 2007

2007-06-13T19:23:00.000-04:00

If all is well with you we are going to the Somerset Patriots baseball game tonight...

At 11:30 I received a call from Valerie, she is the Recreational therapist who is taking us to the baseball game. She said you were not doing well and Dr. McCagg said you should not go to the game. I was unaware you were sick in bed and called the nurses station. The Dr. got on the phone and said you were running a temp and was very congested. They ordered a chest x-ray and she felt you were more relaxed and comfortable. When I arrived your temp was 101 and it had gone up to 102 earlier. You were pale and eyes were glassy and you were very congested. Respiratory was called in to deep suction you and you were on oxygen. Once they cleared your throat and gave you a respiratory treatment you settled down and went to sleep. I stayed for an hour to make sure you were okay and then I left. I called later in the evening and they said you were still sleeping. I hope you will do well the rest of the night and feel better tomorrow

June 12, 2007

2007-06-12T19:22:00.000-04:00

They decided to keep you in bed for a while only it turned out to be almost all day. When I arrived at 3 I asked them to get you up so we could go outside and you could sit up for a while. It took you a long time to settle down and go to sleep that night because your schedule was all thrown off.

June 7, 2007

2007-06-07T19:17:00.000-04:00

I had training and left at 4 pm to come to the barbecue. When I arrived you were sound asleep in the chair. I could not arouse you but I took you outside anyway because it was a beautiful day and the barbecue was on the patio. You never did wake up through all the noise and music so I decided to bring you upstairs so the aides could put you in bed. I was very concerned because you never even flinched when they moved you and changed you and your coloring was very pale. The nurse took your vitals and your respirations were low but your o2 was good. You never woke up that night and Mom stayed for a while to make sure you were okay. We even had to put our hands on your chest to make sure you were breathing.

Friday you were better and much more alert. We got to go outside and you ate a little for me.

Saturday you were alert as well but a little more restless and slightly agitated. You calmed down and we spent the afternoon together but when they put you in bed you were very restless and having a difficult time calming down. Sometimes I truly believe you are trying to hard to break through this silence and be able to speak.

Sunday morning the nurse said you were very agitated and had a temp. They had to give you Ativan to calm you and put you on the cooling blanket to get down the temp. You were better after several hours and they were able to get you up in the chair. We went outside and you slept for a while, when you woke up Dad had arrived and you were very alert and responsive. Unfortunately, it was short lived. You became very agitated by dinner time and the nurse gave you Ativan once again. You were put to bed but the agitation got much worse and you spiked a temp of 102. They decided to put you on the cooling blanket and the Dr. ordered Ativan and Morphine injections. You were extremely agitated and sweating, it is so hard to watch you like that. I feel so helpless and can do nothing but try to calm you down. After several hours you fell asleep, the aides came in to change you because everything gets soaked from sweating. You slept all night and for the most part the next day. The medication lasts for some time and it takes a day or two for you to come completely out of it.

June 4, 2007

2007-06-04T18:12:00.000-04:00

Several days have gone by and it is time to reflect on the past few days. You continue to be alert and focused and eating for me in the afternoons. I came down early on Friday so I could spend some time with you and then left at 3 pm. Matt came down and spent the rest of the afternoon so I could leave to do some shopping. Marge comes at 6 pm to give you a massage which you thoroughly enjoy. I have her come every other week and it helps to relax your muscles and it is very soothing.

When I arrived on Saturday around noon you were very vocal and still in bed. I asked the nurse to call your aide to get you up in the chair, you don’t do well in bed for long periods of time. Especially because you are in bed by 6 at night and up every day during the week by 10. You were getting restless and uncomfortable, it was great hearing your voice. When they first got you in the chair you were agitated and restless but I spent some time with you and calmed you down and you were fine the rest of the day.

Melissa went on a business trip to New York on Friday that turned into a nightmare for her. When she got to NY her computer crashed and she left her cell phone in the limo. Was not much fun for her and now she has to deal with the help desk to get a new computer. She has very important data and reports she needs for her meeting today and only an hour or so in the morning for them to get her set up.

This week I have training on Thursday from 11-4, not sure if I will make it down. They are having a barbecue on Thursday from 6-7:30 so I may come after training. Friday, I have PC Richards coming to install a new air conditioner in the living room wall, I am hoping they come in the morning so I can come down to see you in the afternoon.

It is a busy time at home, we are getting to the end of all the construction and painting. The new windows are in the living room and dining room and the trim is complete. Now your cousin Anthony has to finish painting. John is coming to install the oak railings and the new runner on the steps. It is looking great and I can’t wait for it all to be done. This has all been going on since January when they remodeled the kitchen. The hardwood floors look awesome, what a difference.

Wish that you could come home to enjoy it with us! Next I will start tackling your room, there is so much that needs to be done that has been untouched in 5 years. I think it is time.

May 30, 2007

2007-05-30T21:27:00.000-04:00

I had a nice long weekend. I took an extra day off because I have so much vacation time. You have been doing very well, we spent a great weekend together, mostly outside because the weather was beautiful. Sometimes a little too hot but for the most part comfortable. You ate well and was very alert and focused. Monday we had a barbecue at PopPop’s that Melissa put together. PopPop has not been feeling very well for quite some time and has been going for tests.

Tuesday, May 29th Pop Pop went to the emergency room of the hospital and they found he had pneumonia. They wanted to keep him in but he fought them and wanted to go home. He will be okay I am sure, he now has antibiotics and will get some rest.

Andrea started classes at Seton Hall, she is working towards completing her Masters. She will do well I am sure because she is very committed. She will be starting her sessions with you on June 25th if her schedule permits. I am very excited for you because she will do great things with you and be very consistent. If you were living closer to Carteret she could work with you all year long. Wouldn’t that be something!

Melissa will be traveling quite a bit in the near future. She will be taking trips at least once a month for the remainder of the year. She will be extending some of her time while in Atlanta so she can visit with Shanon, Mike and the kids.

Aun’t Ginny wants me to go to Las Vegas to see Celine Dion. This is a most difficult decision for me to make. I have never been away more than one night and so much has happened this past year and a half that makes me hesitate. I have to think about this long and hard and make arrangements for you to have one on one if I should go. I have to get more details as to how long and when she is thinking about going.

Dad is planning his golf trip to Tampa this fall with all the guys. He will be gone for 5 or 6 days.

May 24, 2007

2007-05-24T13:41:00.000-04:00

It is your big day. I have my month end closing and I have to work until 5 p.m. The last few days you have been awesome... alert, happy, calm, and eating pureed meals very well in the afternoon.

Melissa has been working on updating the website and has done a great job. She has incorporated a beautiful song when you open it that is so appropriate for you.

Today you will be going to Piscataway High School to be part of the Drivers Ed classes. You will be leaving at 11 a.m. and return at 3 p.m. This is your first trip without me but you will be in good hands with Aubree and Heather. Matt will be at the high school when you get there and he will take good care of you. I wrote your story for all to hear and Matt will read it to the classes. You will also have your photo album with pictures from before and now. I am so proud of you Aaron, I hope everything goes well and you can help even one person to see the consequences of their actions when driving. Matt will be taking pictures for me. I thought it would be nice to get some shots of you with the kids.

I will be thinking about you the entire time and hoping and praying all goes well. It is time for me to start trusting others that they will be there for you and give you what you need.

It is now 3 p.m. and I heard from Matt and he said everything went very well. You were great and the high school kids seemed to be truly moved by your story and seeing you there. Matt said you could hear a pin drop that is how quiet it was in the classroom.

I am so proud of you Aaron! God Bless!

Five Years Ago Today

2007-05-21T18:43:00.000-04:00

The day has finally arrived and it is 5 years since your accident. I have been reflecting on the past 5 years and trying to get all my thoughts and feelings down on paper to share with everyone. It is most difficult for me because I have always had a hard time expressing myself. When I think back to the different emotions one goes through during such a difficult time, they are endless.

When you open the website there is a poem called “Message to My Maker” written by my friend Liz from Aaron. She has a beautiful way with words and she has helped me to express my inner most thoughts in a poem called “Reflections”, which best describes the last 5 years.

May 20, 2007

2007-05-20T17:31:00.000-04:00

I arrived early today because I have to leave at 2 pm. Amanda gets married today and we have the reception at 5. I don’t know how it will be for me because I will be seeing Brian (your best friend since you were 2) for the first time in 3 ½ years.

May 19, 2007

2007-05-19T00:07:00.000-04:00

I will come around 1 pm and if the weather is nice we will go outside and sit on the patio. I will feed you around 3 or so and then Dad will come after Bernardsville. We keep praying you will be able to vocalize like you did before, but it has been a long time since we have heard any sounds.

Dad and I are having dinner with Liz and Pete tonight. They missed our 30th Anniversary party and want to get together. I am looking forward to seeing them again. It has been a long time.

May 18, 2007

2007-05-18T00:06:00.000-04:00

I will not be coming to see you today. I have a lot of errands today and need some time to myself. I usually take Friday as my day because I have ½ days at work and it gives me time to do things. Matt will be coming and spend time with you this afternoon.

May 17, 2007

2007-05-17T00:04:00.000-04:00

The past few days have been very quiet. You are alert and calm. We spend most of our time together on the patio. Looking forward to the sidewalk being done so we can walk the nature path walkway and sit under the pergola. I did not come to see you yesterday because Aun’t Ginny was down in Edison for a meeting and she came to spend time with you. It was nice for me and I thought I would go home and get a lot of things done. When I arrived we did not have power so I could do nothing.

My writing is complete for the 21st and will be entered in your journal for Monday. I think it says it all and will be a reminder of what was and what will be.

Your trip to Piscataway High School on the 24th has been approved by Dr. McCagg. You will be going in the afternoon and be part of the Driver’s Ed classes. Matt will be going and he will read your story to the classes and they will view your photos.

May 14, 2007

2007-05-14T21:11:00.000-04:00

We had a great weekend together. The weather was beautiful and we spent all afternoon on the patio. Sunday was Mother’s Day and I came in the morning because I had to leave at 1:30 to go to brunch. I took you outside for a while and then I fed you lunch. You were great and in very good spirits. I enjoyed our time together so much. Nadia spent the rest of the afternoon with you and took you outside. It always makes me feel better knowing you are with someone.

I will be calling the high school today to cancel the meeting set for the 21st of May. That day marks your 5th anniversary of your accident and it will be difficult enough without going through with the meeting. They want to present you with a diploma but it will be too painful to go through.

I have been reflecting a lot on these past 5 years and have decided to write my thoughts in your journal to be posted for all to see.

May 11, 2007

2007-05-11T20:57:00.000-04:00

Today is Grandma Jane’s birthday. Dad and I have to make plans to go to the cemetery and bring flowers for her. Sunday is Mother’s Day as well.

You continue to do well and the weather has been gorgeous, everyday we spend outside on the patio and enjoy the pondless waterfall. Matt asked if you can go on a field trip to Piscataway High School. He would like you to be a part of the Driver’s Ed classes and meet the kids and let them hear all about you. Aubree will be going as well and will read your story to them and bring your album with pictures. Hopefully it will help even one person to see what the consequences can be when you are driving. Dr. McCagg will have to clear your trip but you have been doing so well and I think it will be great for you.

May 9, 2007

2007-05-09T22:27:00.001-04:00

When I arrived at the center you were sleeping, you woke up when I spoke to you and stayed awake the rest of the afternoon. It was a beautiful day, 80 degrees and we spent most of the time on the patio. We then went inside and you ate so well for me and drank apple juice. I put your electric shaver in your right hand and guided you to shave your face. At first you resisted but then you calmed down and you put the shaver to your chin and tried so hard to move it around. We will keep trying, I believe you can do it.

PopPop called me at home, he had a scare at 4 in the morning. He had severe pains in his stomach and the chills and could not breathe. I told him to call one of us to come and be with him and not stay by himself. I worry about him so much, especially now Grandma is gone and he is alone. The doctor did blood work and checked his pacemaker and everything seems good. They are thinking it is a virus and bladder infection. We are going to have to keep a closer watch on him but it is hard for Mommy because I am far away and often times I am with you. Thankfully Aun’t Ginny is only 10 minutes away and Uncle Fred is 10 minutes as well

May 8, 2007

2007-05-08T22:26:00.000-04:00

I called the center around 10:30am to find out how you were and they said you had a temp earlier of 101. Fortunately, they were able to get it under control and you were fine. I took you outside and we enjoyed the patio and I fed you.

May 7, 2007

2007-05-07T22:21:00.000-04:00

The past few days have been terrific with you. We have enjoyed the outside patio and you have been alert and responsive. Melissa got a new car, a Ford Escape. It is really nice and hopefully she will get better gas mileage than the Equinox. Dad had a cordizone injection in his elbow from tendenitis. It is very painful but it helps tremendously.

May, 2007

2007-05-06T18:19:00.001-04:00

Tuesday, May 1st, 2007... I got a txt message from Andrea that she made it into the Masters program at Seton Hall. She was very excited and I could not wait to hear all about it. At 4:30 my phone rings and it was Andrea telling me she was on her way and I shouldn’t move. She came to visit and you were still up and she got to spend quality time with you. You have been doing awesome and your smile and facial expressions told it all.

Andrea visited for several hours and then she prayed with you. She is a very spiritual person and has helped me to get through some rough times. After our visit we went to dinner to celebrate her acceptance in Seton Hall.

What a blessed day it was for all of us.

Today is May 3rd... You continue to thrive and when I look at you Aaron, I feel you are processing. There is something different about you and I truly believe you are comprehending and try very hard to communicate.

You are now off of the medications Dr. Medina recommended. I do not see a difference in your alert level which is a good thing. I believe the Ridlin has helped you a great deal. We will have to wait and see if Dr. McCagg decides to order something in addition to the Ridlin.

April, 2007

2007-04-30T18:18:00.000-04:00

April 11, 2007, these past few days you have been so calm and alert. Tara, your speech therapist has ordered a pureed tray to be ready when I come at 2:30 so I can start feeding you once again. You have been eating fruits and yogurts but I wanted to revisit giving you pureed dinners. Also, you have been taking juices off of a spoon and practicing with a straw. Everything in good time, patience has never been one of my strong suits. You did very well for the first time with mashed potatoes and vegetables, you also ate the cup of pureed fruit and drank some juice. I am very happy!

You have been full of smiles and there is a peacefulness about you that is very different from anything I have seen in the past. I am not sure what is going on but it makes me happy to see you so relaxed and at peace.

I am on vacation the week of April 16th. Melissa has flown to Atlanta to be with Shanon and Mike for her birthday. She is now 28 years old. The weather is very cold, windy and rainy. We are going to have a lot of flooding and uncertainty with road conditions. The state has declared an emergency and asked people to stay off the roads unless it is necessary.

Today is Sunday, April 15th... I always come and see you but not today. I did go to Church but I am concerned about the long drive to the center and the road conditions. Dad and I decided to stay home knowing full well you are okay.

Monday, April 16th... I came down in the afternoon after the weather calmed down and the roads cleared up. You were doing well and very alert. You were responding to me and reaching out to me with your right arm and touching my face. You ate well and were very focused. You seemed to be trying very hard.

The next couple of days you were the same and I must say I enjoyed it very much. On Wednesday you were very vocal and the nurse came in to give you your meds. She was enjoying you very much and how attentive and vocal you were. You started to get very restless and some what agitated. I felt you were trying very hard to communicate but unfortunately you went in to full blown storming. You became very sweaty and agitated and they had to give you Ativan to help calm you. Your temp was rising and I was very upset. Veronica set up an IV fluid for you and they packed you in ice. Fortunately, this episode only lasted approximately 2 hours and you fell asleep. They did not have to give you morphine which I was very glad about.

The next few days you were very focused and eating well for me. You continue to vocalize and I truly believe you are trying to process things. Your smile tells all.

When I arrived on Sunday, April 22nd you were still in bed and had been running a temp. You were somewhat agitated and sweaty but fortunately they got in under control immediately. You rested and calmed down and we then got you in the chair. Dad came later and we visited and went outside, it was so beautiful. The weather for the next few days is going to be high 70’s. We are enjoying the patio very much.

On the way home from the center I received a call from Andrea, she gave me such wonderful news. She will be coming this summer to work with you 10 hours a week. I was so thrilled and thanked God for answering my prayers. She will bring so much joy and fun to you during your time together.

April 24th, 2007... I got a surprise call from Andrea that she was on her way. You were already in bed but she got to see you anyway. You were sound asleep and very peaceful but sometimes you looked as though you were faking. We know how much you love to ignore people especially when you don’t want to be bothered. Andrea spent a long time with us and I was very happy to see her.

For the last few weeks you have been so great. You are alert and very calm, you are eating well and we have a lot of fun together.

My company volunteers came down to your center on the 25th of April and we build the Pergola and arbor and landscaped. It was a great day and we had good weather and it looks beautiful.

April, 2007

2007-04-30T18:15:00.000-04:00

Here we are going into April and you are doing very well. You are eating, vocalizing more and the weather has been awesome. We have spent a lot of time outside enjoying the waterfall by the patio. We have been truly blessed.

We are now approaching spring but you would never know it based on the weather. It has turned bitter cold and we are seeing snow showers. Easter is April 8th and we are planning on taking you to Uncle Fred’s.

Wednesday April 4th I arrived at the center at 3 p.m. and you were in bed. You were very agitated and went into full blown brain storming. The doctor came in and filled your Baclifin pump and they gave you morphine and Ativan to calm you. You were sweating profusely and your temp was 103. They put you on a cooling blanket and then on IV fluid. It is now 6 p.m. and you have finally calmed down. The aides will be in soon to make you comfortable and change your clothes. You slept all night and for the next two days.

Sunday April 8th, it is Easter and we are bringing you to Uncle Fred’s. All your Aunt’s, Uncle’s and cousins will be there to see you. When I got to the center you were quite active and I was concerned but you calmed down and were very quiet the ride to Uncle Fred’s. Everyone was glad to see you and you smiled some and slept some. You had lots of pictures taken with all the family and Melissa will add them to your web page.

It was a very blessed holiday!

March 24, 2007

2007-03-24T22:17:00.000-04:00

March 24th, 2007... Today we had a party for Megan’s 30th birthday party or so we thought. However, when we arrived, it was for Dad and I for our 30th anniversary. What a shock! It was so beautiful. There was a deejay. Aun’t Nancy and Uncle Fred did the catering. Melissa had it beautifully decorated and she made a huge banner with our wedding picture displayed. The invitations reflected our wedding day and it was a great night. We saw many friends we don’t see often enough. I am so proud of Melissa. She brought so much joy and happiness to Dad and I. Even though you could not be there, you were always close to my heart and in my mind.

Happy St. Patrick's Day

2007-03-17T22:17:00.000-04:00

March 17th, 2007... It is St. Patty’s day and there will be a party at the center. They had non-alcoholic beer and Irish soda bread just to name a few. Dad came down to see you and we spent most of the time watching sport.

March 1st, 2007

2007-03-01T22:14:00.000-05:00

March 1st, 2007... Grandma Ricky would have been 83 years old today. If she were still here, Grandma and Pop Pop would be celebrating in Florida with all their friends. We miss her terribly.

February 14, 2007

2007-02-14T22:07:00.000-05:00

February 14, 2007...HAPPY VALENTINE'S DAY

It is Valentine’s day and the center sells balloons and so I made up a spray of them for you. We spent the afternoon together and you were very calm and alert.

February 10, 2007

2007-02-10T18:15:00.000-05:00

February 10th, 2007... Unfortunately your recovery was short lived and you are very sick once again. You spiked 103 and you were sick all day and into the night. They ran a battery of tests and put you on IV fluid and the cooling blanket. Hopefully, it will not be a long drawn out time for you. Hopefully, you will bounce back quickly.

January, 2007

2007-01-31T18:14:00.000-05:00

January 5, 2007... I was very upset, having a very bad day. I missed Grandma at the holidays and I was very sad because you were going through such a rough time. I decided to do something constructive and start writing your history for Andrea. It took me the weekend gathering up everything and writing things down. I decided pictures tell a thousand words and made up a packet of pictures of you from the time you were born. I sent it to Lanoka Harbor so she would get it on Friday.

January 17th, 2006 Grandma Jane passed away, Dad is very sad. We all gathered at the hospital and all the family came from out of state. The viewing was Friday and the burial on Saturday.

You continue to thrive and are more alert and focused. You are having good sessions with the teacher and you are now eating every day for me.

December, 2006

2006-12-31T18:13:00.000-05:00

The holidays are approaching and it is going to be more difficult this year without Grandma. You are doing well and have been very calm and alert.

Thanksgiving we will come and spend with you and then go to Aun’t Trudy’s which is tradition every year.

This year for Christmas we will be bringing you to Aun’t Ginny’s. We want a very quiet holiday this year because it is going to be difficult for everyone. PopPop is very sad and does not want to be around a lot of people. We are bringing you to Aun’t Ginny’s for the day and I am looking forward to it.

December 18th, 2006... I had to work late for closing and today is your Christmas party at the center. I am disappointed I cannot be there but Melissa is coming down to be with you. Melissa said the party was a great success and you were great. I also found out Andrea came and spent the time with you and Melissa. How great was that. I am sorry I missed her.

December 22nd, 2006... It is my birthday and you are having a rough time. You are having episodes of brain storming that are excessive and very difficult to calm you down. I was at dinner with Dad and Melissa when I got a call from the hospital that you were not doing well.

You continued to have a very rough night and I was not sure if we would be able to take you for Christmas. Unfortunately, you are not doing well and continue with the brain storming. Christmas Eve, I asked Cheryl who is an aide to stay with you from 3-7 so I could be with the family for Christmas Eve. It was difficult leaving you knowing you were so tense but Cheryl reassured me she would take good care of you.

December 25th, 2006... I received a call at 7 a.m. from the nurse informing me you were brain storming during the night and it was not slowing down. I had no choice but to cancel the transport and not take you to Aun’t Ginny’s. I was very disappointed and sad for you. Dad and I came to visit you and you were very agitated. Nadia was staying with you so we could go to dinner. When we left you were restless and warm but Nadia was going to keep an eye on you and call me later.

You continued to brain storm during the night until the day after Christmas. Finally, December 26th in the evening you calmed down, you were comfortable and had no temp. The episodes lasted 5 days and you had to be on morphine and ativan.

Dr. McCagg has decided to leave you on morphine as a preventive and hopefully control the brainstorming. She is also adding Ridlin to help stimulate you and hopefully make you more alert.

For the remainder of the year you were very calm, slept for the next two days and was unresponsive. You would open your eyes but you were very lethargic. As each day went by you became more alert and more responsive. It takes a long time for the medication to get out of your system.

As each day went by you became stronger and more alert. The Ridlin with the morphine seems to be a good combination.

Andrea, your teacher for the summer asked me to write a history telling all about you. I was not sure why but I decided it would be good therapy for me to do so.

October 1, 2006

2006-10-01T18:12:00.000-04:00

October 1, 2006 and you are now 22 years old. I don’t know what it is with Birthday’s but you are very uncomfortable in the chair and extremely agitated. The nurse gave you Ativan to calm you. You are still having difficulty with temps and agitation. They continue to do testing and put you on IV fluid so you don’t dehydrate.

September, 2006

2006-09-30T18:11:00.000-04:00

September 2006... Grandma is much weaker and we now have Hospice coming in frequently and for the most part she is bed-ridden. One day at a time, how I wish you could see her one more time. One thing I had hoped for was for you to be able to tell her you Love her but it just was not meant to be.

You continue to brain storm and the episodes seem to last longer and your temps are high.

September 26th, 2006... I am at work and at 9:30 I received a call from Uncle Beav, he tells me Mommy is gone. I cried so hard but I was able to compose myself and drive to Grandma’s house. You were in your room and I went in to find family sitting by your bedside. I embraced my brother’s and sister and cried with PopPop. The viewing is set for Thursday night and Friday, she will be buried Saturday. Such a sad time, I am trying to balance my time with PopPop and you. We had to go to make arrangements and meet with the Funeral Director.

Summer, 2006

2006-08-31T18:09:00.000-04:00

Summer is coming and I spoke with Fran from the Middlesex Education Commission and she is finding someone for the summer months. I am so happy and look forward to her starting soon.

Well, I received a call from Fran and she recommended Andrea Daunarumma who is coming to meet us this week. She is a teacher at the Carteret High School in Special Education. She arrived about 1 pm and she is so nice to talk to and was wonderful with you. She seems to get down to your level and knows what you like and will do a wonderful job with you. She is starting on the 26th of June and will be here from 12:30 to 3 pm. From Monday to Thursday.

Grandma Ricky has been very sick and is not expected to be with us for much longer. She is getting weaker and requires more care. Mom is going one or two nights a week to sleep there and help PopPop. It is very exhausting but necessary.

Andrea’s last day is going to be August 18th, she needs time to get ready for school. She has the most beautiful personality and was compassionate, patient and caring with Aaron. She touched our hearts and brought so much joy to both of us. We will miss her.

Easter, 2006

2006-04-30T18:09:00.000-04:00

Easter 2006, once again you became ill. You and I ended up at the hospital and they found a bacterial infection that required you to be quarantined. We spent one week in the hospital and returned to Hartwyck to a private room. Mom was very upset because they put you in a room at the end of a hall alone. That bothered me because it was so isolated and you were so sick. I asked Matt to come and spend time with you during the day while I was at work so I did not have to worry about you being alone. He was great and fortunately his schedule allowed him to be there everyday from 11- 2. I arrived at 2:30 and you would be up in the chair and very relaxed. You spend two weeks in quarantine and then you were allowed to go back with Sean. What a blessed day that was!

Susan had to leave to pursue teaching full time so you are without a teacher. Mom is trying to find another but it has been very difficult due to daytime hours and you are only allowed 10 hours a week.

February, 2006

2006-02-28T18:08:00.000-05:00

February 2006, you were very agitated and seemed bloated and in pain. The doctors were afraid you had an elias, it is a blockage in the intestines. Because of the blockage you were retaining fluids and later that night you vomited and had to be rushed to the hospital. I got a call at 2 am and it took me an hour to get there so by that time you were already in the emergency room. When I arrived they had drained your stomach and were running tests. I was so scared when I saw you because you were having a hard time breathing and on oxygen. You were moaning a lot and the nurse said your abdomen was filled with fluid. While I was there you vomited violently and it all went in your lungs.

The nurse said it was going to be a long time before we got a room so they put us in a holding area. We were there overnight and waited for Dr. Medina to arrive. You were so sick Aaron and Mom was really scared this time. On Friday evening they moved you to 2 North, when I arrived they said you were having a lot of difficulty breathing and Dr Sarraf the pulmonary specialist was on his way. Dr. Sarraf did a bronchoscopy to relieve a lot of the congestion and look in your lungs. It was decided you should go to ICU and then they put you on a respirator. I remember thinking how sick you were and seeing you hooked up to the machines was devastating. You had come so far and were doing so well and now this.

Dr. Sarraf came in and he said you had a very serious bacterial infection in your lungs and he wanted me to consider re-traeching you. I was devastated at the thought of you having a traech again. That to me would have been a major set back. I decided to give you more time on the respirator and felt you could fight this. The respiratory therapists were wonderful and told me to hang in there and give you the time you need to fight this. I listened to them and followed my heart and knew I was doing the right thing. I prayed to God and asked him to give you strength and get you through this. Nine days later you coughed it out on your own and never had to be put back on the machine again. You are so amazing. We spent 3 weeks in ICU and it was an uphill battle for you but once again you came through.

After returning to Hartwyck you continued to spike temps of 105 and Dr. McCagg said it was brain storming. They would run the usual tests and put you on IV fluids. They also had to put you on a cooling blanket to help bring the temp down. You had to be given morphine and Ativan to help calm you. It was most difficult to watch and not much I could do to help you except to comfort you.

January, 2006

2006-01-31T18:07:00.000-05:00

It is now 2006 and you are starting the new year off with a bang! You seem more alert and vocalizing more and trying so hard to communicate. Sometimes it seems as though you are trying to break through this wall of silence and wake up. You are extremely agitated in the chair at times and constantly pushing yourself out of position.

Christmas, 2005

2005-12-31T18:06:00.000-05:00

Christmas 2005 we took you home for the day. The family came up and spent the day and it was beautiful. Mom cooked and we set it up as a buffet so everyone could spend time with you downstairs. When you come home we bring you into the family room which is off the foyer. It was wonderful and you got to see Charlie, he jumped up on the couch and into your lap. It was so cute!

October 1, 2005

2005-10-01T18:06:00.000-04:00

It is now October 1st, your 21st birthday and we are here to celebrate with family and friends. You are under the weather and I am not sure what is going on. You are agitated and running a low grade temp. You seem very uncomfortable in the chair and Anna your nurse suggested we put you to bed. Your temp is 102 and climbing. You continue to be agitated and are very sweaty and moaning a lot. At 7 pm your temp climbed to 105.6 and it was decided to take you to the hospital. By the time we got there you were 107 and very lethargic. You ended up in ICU for a week, they did a spinal tap for Spinal Meningitas which was negative and blood, urine and chest ex-rays to check everything out. Nothing showed up but they have you on IV antibiotics and you stayed in ICU for one week.

We went back to Hartwyck and everything seemed to be going well and you continued to thrive.

August, 2005

2005-08-31T18:04:00.000-04:00

Mom contacted work and I am returning on August 8th after being away for 4 ½ months. I needed to be with you because of your illnesses. I pray for continued strength and better health.

Summer is now ended and it is fall. The weather is getting cooler and we are spending a lot of time outside. You are continuing to do well with your teacher and are now eating soft foods again. You are still building up your strength and gaining weight. You had lost over 30 lbs. but now you are climbing upward.

July, 2005

2005-07-31T18:04:00.000-04:00

July 1, 2005, I arrived at Hartwyck and met with Dr. McCagg to discuss your medications and therapies. She is going to be on vacation for a week and wanted to be sure you had everything you need. You were great through the holiday weekend, we went outside on the patio and you got some fresh air and were getting stronger everyday.

The next several weeks you continued to get therapies and you are getting stronger and more alert. The weather is very hot and humid so we have not been going outside. There was a barbecue at night but we stayed inside due to the weather. Mom has to think about going back to work, you are now stable and on the road to recovery. One day at a time Aaron.

June, 2005

2005-06-30T17:56:00.000-04:00

Tuesday, June 2nd... The therapists came in to evaluate you once again. They are not saying much so I have to wait and see. You are doing more each day and getting stronger as each day goes by.

*************************

Friday, June 3rd... The hospital called and you are spiking a temp. You had been doing so well. They are sending you to the hospital for tests. They need to check the pictline and do a catscan. There is a concern there may be something wrong with the shunt. After spending much time there, we went back to Hartwyck. They drew blood, did a chest x-ray and urinalysis.

The next day your temp was 103.5 and they had to put you on a cooling blanket. You were so sick and I was so worried. You have been through so much and my heart aches every time this happens. I put my faith in God but it is so hard sometimes, and I constantly ask why?

*************************

It is now June 6th... You continue to run a temp and the tests now show your liver enzymes are elevated. They called Dr. Medina and he believes it is your gaul bladder. We have to go to the hospital for more tests.

*************************

June 8th... We are going to JFK for further tests and you will be admitted by Dr. Medina. He is trying to get in touch with the surgeon to discuss your case and set up surgery. Unfortunately, they cannot do laproscopic, it will have to be major surjery in the operating room.

*************************

June 9th, 2005 we are now in 2 East at the hospital which is a gastro floor. Dr. Medina wanted you here because you will get special care. We are in a private room which makes it very nice. Dr. Medina is setting up surgery however there are some issues that they need to work on. Your blood coagulation is off and they need to give you injections to correct it. Also, you are having nose bleeds due to the oxygen and they need to correct that as well. So many things to watch for but they are so careful with you and monitor all your vitals and give you so much care.

*************************

June 12th, Mom took the day off and left it up to the men to come down and care for you. I had a bridal shower for my niece and Dad, PopPop and Uncle Tom were here to spend time with you.

*************************

They are continuing to monitor you carefully, today they did more ex-rays of your chest and abdomin. Dr. Hebbe the pulmonary specialist came in to evaluate you for surgery. He is concerned about your blood gases for surgery and wants to do a special blood tests. It means extracting blood from your artery and it is very painful. He asked for my permission and I told him he would know what is best for you and if this is important for him than he had to do it. I did not want to be there so I left and went to the chapel to pray.

*************************

Today is June 16th and the surgeon came to evaluate you and discuss the surgery with me. Dr. Medina was in as well and he is so compassionate and patient. He takes his time and tries to put all my fears to rest. Today you sat up in the chair for 4 hours and you were very alert and vocal. You did very well and seem to be very comfortable. They are giving you Vitamin K injections to increase your blood coagulation so there are no problems in surgery.

*************************

June 17th and you are scheduled for surgery at 3:30. Dad is coming down and PopPop and Grandma as well. They took you to the holding area at 2:30 and the surgery took several hours. You were then taken to recovery for an hour and a half. I stayed until 10 p.m. because you were in a lot of pain from the surgery. The nurse came in to give you pain medication and then you fell asleep.

*************************

June 20th, you are getting stronger and can now sit up again in the chair. You have no temp and your liver enzymes are back to normal. Today they took you for a neutron hydrascan that takes 4 hours. They needed to be sure you were free of all stones and blockages.

The doctor’s are consulting about putting in a porta-cath. You are having such a hard time with pictlines and IV’s and you need to be on antibiotics for quite a while.

************************

Wednesday, June 22nd, you started out feeling well and very alert. After being up in the chair for a while you seemed uncomfortable and warm. They put you back in bed and your temp was 102.7. I was very concerned and worried about what was going on with you. The nurse was very upset and put a call into the doctor. They had the infectious disease doctor come in and Dr. Medina ordered a battery of tests.Your cat scan was good but you were not doing well. I left at 7:30 to go home and called the nurse and she said you were not doing well. I then called Barbara and she decided to come and pick me up and drive me back down to see you. We stayed until midnight but it was very re-assuring knowing you were okay. The next day you were still running temps and they decided to do all kinds of cultures. They are all very worried about you and so am I.

************************

Saturday, June 25th, one day at a time and now they have diagnosed you with blood clots in your legs. Thank God you have a green filter so they need to give you lovenox injections to thin your blood. All of this is due to you being bedridden and not able to move.

************************

Sunday, June 26th, your hemoglobin level dropped drastically and they now have to give you blood transfusions. The doctor’s have decided to put a porta-cath in to prevent any more problems with pictlines and IV’s. You are scheduled for the 28th of June.

You went in at 9 am and the procedure took 40 minutes. It is June 30th, and after careful evaluations and all tests coming back with positive results they are going to discharge you back to Hartwyck. Only time will tell Aaron, hopefully you will move forward and be able to get stronger and more stable.

May, 2005

2005-05-31T17:55:00.000-04:00

Monday, May 2nd... You vomited during the night and now your sodium levels are not consistent. They are holding feeds and monitoring your potassium, sodium levels.

Dr. Dunn is your Endocrinologist, he specializes in body fluids, sugars and diabetes.

******************

Wednesday, May 4th... You are having a busy day. You are discharging from your left eye and your ears are filled with puss. They called in Dr. Meir, the ENT, for a consult. Dr. Reisman, the gastro Dr. filling in for Dr. Medina, is changing your G tube to what they call a J tube. This will allow feed to go in a different direction and hopefully you will not vomit. You are losing a lot of weight, you have gone from 150 to 125. Your face is so thin and you are so pale.
*******************

Linda, your occupational therapist, comes to visit and she is devastated. All of the therapists come from time to time-Tara, Aubree and friends from BTU. Aubree brought you a beautiful angel and I hung it on the wall by your bedside.*******************
Thursday, May 5th... Dr. Steineke ordered a cat scan and is scheduling surgery for May 6th. They are inserting a shunt which is a permanent drain to keep fluid from building up.

*******************

Friday, May 6th... They scheduled you for 9:30 to have the shunt put in. They took you to the holding area at 7:30 and at 9 took you to the OR. We waited until noon before we got word it was over and you were back in ICU. You had a rough couple of hours coming out of the anesthesia. Once you were beyond the initial trauma they gave you Tylenol and you slept for the rest of the afternoon.

*******************

Monday, May 9th... You are now stable enough to be moved to a different floor. We spent 4 weeks in ICU and now we are going to 3 Central. Mom is a little nervous because you were so well taken care of in ICU and now things will be so different. The Doctor said you are coming along nicely, you are more awake and becoming stronger everyday. The Doctors still have no way of knowing the outcome of your illness, only time will tell.

The next week we spent in 3 Central and you were still having some problems with your feeds and pictlines. They were sitting you up in a chair which was nice for you and much more comfortable than being in bed all the time.

******************

May 17th... They are making plans for your discharge but they are not sure because there are still issues to resolve.

******************

Wednesday, May 18th... The day has finally arrived and you are being discharged. They need to put a new pictline in before we go and then we will leave JFK. Carmen is with me and she has been such a good friend to me. She helped me pack up your belongings and we waited for transport.

It is now 7:30 p.m. and we arrived at Hartwyck. David your roommate is screaming and hollering because he does not want you back in his room. The Doctor explained to him that you need special attention and the door has to stay open at night. He enjoys the room by himself and the door can be shut at night. You on the other hand cannot communicate if something is wrong and they need to get to you if something happens. He was absolutely off the wall and out of control. His Mom was there and she apologized and Dave said Aaron did not deserve him as a roommate.

The next day it was decided we were going to be moved to Rm. 225 and share a room with Sean Reilly. Susan and I had become friends and we were very happy about the idea because you and Sean are close in age. Susan and I have gotten to know each other and several times she would come visit you in the hospital. We watch out for each other and our boys.

The next several days and through the Memorial weekend you continue to get stronger. You are still having problems with your feeding tubes but otherwise you have been getting a lot of rest and seem to be very comfortable.

*******************

Tuesday, May 24th... Your speech therapist came in to evaluate you. She was trying to feed you and see if you responded to commands. She was quite pleased and was going to recommend 3x a week for speech therapy.

For the remainder of the week you were seen by your therapists and evaluated for further therapy. There goal is to hopefully get you back to where you were before you got sick. We have been spending time outside because it has been great weather and the fresh air is good for you.

********************

It is now the end of May and the responses have been great. Susan your teacher is noticing you are tracking with your eyes and you are in such great spirits. I pray you will continue to move forward and be able to do all the things you did before and then some.

April, 2005

2005-04-30T17:53:00.000-04:00

Friday, April 15th, we called the family after we received the news and felt they should know so they could make arrangements to come and see you. Dad and I were supposed to go to a family wedding on Saturday but cancelled.

*********************

Saturday, April 16th, 2005 and there were many visitors that day. Friends, family and people from Hartwyck whom we have bonded with over the past few months.

*********************

Sunday, April 17th, and many more family members are coming to see you. You still have not opened your eyes and are very guarded.

**********************

Monday, April 18th, today is Melissa’s birthday and Mom is going to work to fill out papers for a leave of absence. I need to be with you until we are sure of your condition and what lies ahead.

The remainder of the week was a wait and see. You were tolerating the feed thus far and getting antibiotics and fluids. You are still very sick and not responding but for the most part stable. On Friday, April 22nd they took you down for another MRI and the results were worse.They are having much difficulty with your veins and drawing blood and IV’s. You are on your 4th pictline and even now they are not sure it will hold up.

********************

Tuesday, April 26th, they did an MRI to map your brain for surgery. You were scheduled for surgery on the 28th of April.

Mom arrived at 6 a.m., you were scheduled for surgery at 9. Dad and I took you to the holding area and waited with you until 10 a.m. You were taken to the OR and the surgery took 4 ½ hours.

*********************

One of the things they told us was they were trying a new technique and piece of equipment during your surgery. A device with a camera on the end of it that has the ability of extracting fluid and puss. There were quite a few people watching and observing and it was video taped for future use. During the procedure they extracted viles of puss in the ventricals that was keeping fluid from passing through.

**********************

The surgery was a success and now we prayed for your recovery. They had no way of knowing the severity of the damage to your brain. You could recover and be better or lose some of what you had gained.

**********************

Friday, April 29th, 2005 you had a small seizure which they said is not uncommon after brain surgery. The rest of the day you slept and were very quiet.

The weekend visitors came to see you, family and friends. The Caruso’s come every weekend from Sussex to spend time and visit. They are such good people and good friends.

April, 2005

2005-04-30T17:52:00.000-04:00

April 14th, 2005 and it was decided to have you go to JFK hospital and meet with Dr. Medina. He is a gastro specialist and he wanted to evaluate you because of the excessive vomiting. He ran routine tests and then decided to have a cat scan done of your head. We had been in the emergency room from 2 p.m until midnight. We first went to cat scan and then they took you to the Pediatrics wing. I went home at 2 a.m. to get some sleep but woke early and came back to see you. I was informed that there was a problem with the cat scan and they called in a Neurologist. I then called Dad to come to the hospital because I felt it was serious and I did not want to be there alone.

Dr. Mitchell came in at 5 p.m. and informed us of the seriousness of the situation. He said you had fluid on the brain and if they did not put a drain in as soon as possible you could die. They had you rushed to ICU and had the room set up for them to put a drain in your forehead to relieve the pressure. I just remember how weak you were and unresponsive. You had lost all your strength and ability to move or speak.

April 15th, 2005 and you were not responding to the decrease in pressure. Most of the time when pressure is relieved the patient becomes responsive and will open their eyes. You did not and there was much concern. It was decided at 3 p.m. you would go to cat scan and MRI and have further testing. They said it would take approximately 3 hours and we should go get something to eat and then go to the waiting room.
At 6 p.m. the nurse came in and escorted us to a conference room where we met with Dr. Mitchell. He informed us it was very serious and you may not make it through. There was a very massive infection and blockage in the ventricals. They were doing everything they could and had you on massive doses of antibiotic. I cried so hard and Dad was very upset as well. We had to think about a DNR, we believed in our hearts that if it was meant you would not recover and live your life as a vegetable we did not want you to be resuscitated.

I truly believed it was in God’s hands and all I could do was pray and be there for you. I decided to take a leave of absence from work and came every day to be with you and make sure you were well taken care of. The days were long and very scary at times. You had a team of Doctors working together to get you well.

March, 2005

2005-03-31T17:51:00.000-05:00

March 2005, you are running low grade temps and are more congested. They have done blood work and chest x-rays and are watching you very carefully. Unfortunately, you are not getting better and continue to get more congested. They have decided to put a pictline in so they could give you IV fluids and antibiotics.

***********************

March 20, 2005 you are admitted to the hospital with pneumonia and a very serious sinus infection. The first several days were very scary and they continually suctioned you and were very concerned about your lungs. The specialist wanted to re-traech you and put the tube in your throat but I felt you needed a little more time. Well, I was right and you fought very hard and came through just fine. I was still very worried because you were very weak and sluggish all the time. Even though the pneumonia and sinus infection cleared up you were not yourself.

We went back to the center after 2 weeks in the hospital and you were very weak. You started to vomit and continued every day for the next 10 days or so. They continued you on IV fluid and antibiotic but you continued to get sick. You were having difficulty with your pictlines and we had to replace them several times. Your veins were very small and it was most difficult keeping in a IV.

February, 2005

2005-02-28T17:51:00.000-05:00

It is now February, 2005 and you are not feeling well. You are nasally and seem to be very sluggish. The Dr. has you on Flonase to help with the nasal congestion and you seem to be better.

January, 2005

2005-01-31T17:50:00.000-05:00

It is now 2005, when I look back to last year it was quite adventurous and very exciting. You left Wanaque Nursing and came to JFK where you have been making great strides. They have decreased some of your therapies because they said you needed a break and you were not being consistent. However, you were eating pureed dinners at night and saying a few words and communicating.

We found a wonderful teacher for you, her name is Susan and she is more than anyone could possibly ask for. She is a stay at home Mom and is looking for part time. She comes at 9:30 and stays until 12 or 12:30. We purchased Big Mac switches that are programmed to say yes or no and you are using them to communicate. She brings you to the computer and is guiding you with the mouse to do different things and you are doing well.

There is a special woman, her name is Celeste and she is very knowledgeable working with disabled young people. She came to the center one morning and worked with Susan and observed you in action. She was very impressed and encouraged by some of what she saw and what you were able to do. She is putting together a basket of goodies, things for you to smell and touch. She is making suggestions to Susan and will be coming back to work with you again. She is so excited and so am I. I am so proud of you and how hard you are working

Christmas/New Years, 2004

2004-12-31T17:49:00.000-05:00

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.

Fall, 2004

2004-09-30T17:49:00.000-04:00

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.

JFK

2004-05-01T17:48:00.000-04:00

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.

Thoughts

2004-04-30T17:47:00.000-04:00

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.

Melissa's 25th Birthday

2004-04-18T17:46:00.000-04:00

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.

April 2, 2004

2004-04-02T17:47:00.000-05:00

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.

JFK

2004-02-28T17:45:00.001-05:00

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.

February, 2004

2004-02-28T17:45:00.000-05:00

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.
******************************
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.
******************************
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.
*******************************
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.

Thoughts

2003-12-31T17:44:00.000-05:00

Well, it finally happened Aaron, the nurse came to evaluate you for JFK. She will approve the pass but requested documentation from Dr. Giacino. We are waiting for that to be faxed over and then the pass will be complete. I went on a tour of the facility and I pray you will be happy there and they can help you to recover.

My life has changed forever but I know I can go on and continue to be strong as long as you continue to improve. I need for you to come home one day and once again be part of our family. We need you here, it has never been the same without yo

Summer - Winter, 2003

2003-12-31T17:43:00.000-05:00

Tomorrow Dad and I go to court to be declared your guardians. Because you are now 18 years old you are considered an adult and we really have no rights where you are concerned. We want what is best for you and want to make sure you are protected. If and when you wake up and care for yourself, we will dissolve the guardianship. I pray that happens.

Friday we went to the ear specialist and you have a chronic ear infection that is not getting better. We have to find out what is causing the problem so they are sending you for a cat scan. Depending on what it shows you may need surgery otherwise you will have permanent hearing loss. Well, the day has come and we went to the hospital for the cat scan. As usual you were great and we had a good day. The weather was beautiful and you enjoyed the time out. The results of the cat scan were positive as far as no damage to the mastoid.You tested positive for 3 bacterial infections, 2 of which are not good. We had to go to a infectious disease doctor at the hospital and he consulted with Dr. Brabston and Dr. Taylor. The decision was made that you would have a central line put in that would enable you to get IV antibiotics for 2 weeks. The antibiotics were given twice daily and you were monitored very carefully for infection. The doctor’s were happy with the results and now you are on ear drops as a maintenance.

It is now summer and you continue to go to school and everyday I come and we go outside to walk or sit on the patio. Grandma and PopPop come every Sunday for church and to visit with you. I wish with all my heart more of your friends would come but they are all working and getting ready for college. I was especially sad because you have not seen Brian since the party in June and he did not come to see you before he left for school. Your girlfriends have come, especially Stacy and Tori and Katie.

It is now the end of summer and We had our IEP with Mrs. Dabonovich from the high school. During the meeting she mentioned an article she read in the New York Times and she mailed it to me. As I read the article it was about coma versus vegatitive state and it spoke about a Dr. Nicholas Schiff from Cornell University and Dr.Giacino from JFK in Edison. I decided to call Dr. Schiff in Cornell and he answered the phone and spoke with me. He asked questions about your accident and where you were at that point. He suggested I call Dr. Giacino in Edison and I did. Well, first I had to fax your records to him and then wait. Always a waiting game Aaron, but this time it paid off. Dr. Giacino called 2 weeks later and we spoke for some time. He asked if we would bring you to the center for brain injury in Edison for an evaluation. Your Dad and I rented a van in late November and off we went for the day. Dr. Giacino evaluated you for several hours and it was decided that you should be admitted to the center for 4-6 weeks. We had to request a TBI pass and that took some doing. First, I spoke with Jean in admissions and she notified the Medicaid office in Passaic County. Well, by then it was after Thanksgiving and it would take some time for the Medicaid nurse to come and evaluate you.

It is now getting close to Christmas and there still has been no evaluation for JFK, but Dad and I wanted to wait until after the holidays. We rented the van for Christmas Eve and Christmas Day. It rained so hard Christmas Eve and we decided not to take any chances and bring you out. However, Christmas Day was a huge success and you were wonderful. We went to Aun’t Antoinette’s in East Hanover and all your cousins and Aunt’s and Uncle’s were there. They all got to spend time with you and we took lots of pictures. You looked so handsome in your new green sweater and cacky pants and moccasins. You wore your gold cross and new ID bracelet we got you for Christmas. It is now New Year’s Eve and we are spending time with you at the center. I bought food for the nurses and staff to enjoy.

Thoughts

2003-06-30T17:43:00.000-04:00

We continue to watch you and the small progress you are making. Progress is a good thing and we pray it will continue. You have been agitated and wanting to bite your index finger. You are making it bleed and it is all swollen and sometimes infected. The doctor came to check you and gave you antibiotics for the infection and valium to relax you. It is sometimes most difficult to watch you day in and day out and feeling so helpless. I want to take you in my arms and hold you and tell you everything will be okay.

June, 2003

2003-06-30T17:42:00.000-04:00

Well, here it is June 19th, the BIG DAY, and your father and I had to be at the gym by 5:30 to meet with the dignitaries and your classmates. We marched in with the dignitaries and the teachers and then watched your classmates walk in. It was very difficult being there without you but we believe in our hearts we did the right thing. They presented everyone with their diplomas and saved yours for last. It was so powerful Aaron, and the entire gym went crazy. Mr. Mulvihill after calling everyone else came across with a very loud, pronounced voice AARON GEORGE HILL. Your Dad and I went up to receive it and I could not believe the response. Everyone stood up and was screaming and clapping and yelling GO RED, WE LOVE YOU RED. AARON AARON AARON, It was the most unbelievable experience of my life. Some day I hope you will be able to see the video of this and come to know how truly special you are.

Today is June 20th and someone very special is coming to visit. Barry Gabloff, your mentor in Mrs. Wyman’s pre-school class is coming from Maine and will be spending the afternoon with you. He is looking forward to seeing you and plans on coming everytime he is in Jersey. The visit went very well and you looked at Barry and smiled and we both knew you were aware of who he was. I took some pictures and plan on sending him one to keep. He said without a doubt you will come back from all of this and that time is on your side. He believes you have the will and the spirit to fight this and in my heart I believe it too.

Today is June 21st and it is 13 months since your accident. But who is counting. One day at a time and maybe tomorrow will be the day. It is all about you and when you are ready.

Tomorrow is June 22nd and Daddy and I are finally going to use the gift certificate you and Melissa gave us for our 25th Anniversary. We are going to NewYork and visit some wineries and sight see and just relax. We know you are in good hands and will be well taken care of. Melissa is coming to see you and she is bringing a CD of the Harry Potter movie for you to listen to. Daddy and I will be coming to see you on Monday on our way home. We will miss you but to be honest I am exhausted and hope to pull myself together and get some rest. These past few weeks have been very emotional and draining. We are only a phone call away and if anything happens we will be there within a few hours. We love you Aaron and for now I am going to say goodnight.

June, 2003

2003-06-30T17:41:00.000-04:00

I have been very busy planning a big party for you and your friends at the center. Jeff, the director has been wonderful and extremely instrumental in helping me do this. It is on Father’s Day, June 15th and there are approximately 100 people coming. It is to celebrate your life and bring all your friends together to celebrate this special time. It is not how I envisioned things would be but fate has a way of throwing some curve balls when we least expect it. The room will be done in green and white and we are having music and hopefully a good time for all. I am praying you will wake up and be able to enjoy every moment with your friends.

On June 3rd, 2004 we will be going to the high school for the Scholarship awards. We have decided to give 2 scholarships to students in your class in honor of you. It is all about who you are and they will go to one girl and one boy. They have asked us to come and make the presentation but emotionally it will be very difficult for me and Dad. So, we have decided to ask Mrs. Salomone to make a speech and Melissa will be presenting them to the recipients. I hope they will be as honored to receive them as we are to give them in your name. We will be there in your absence and pray that one day you will be able to look back and come to realize that you have made a difference.

May, 2003

2003-05-30T17:40:00.000-04:00

May 21st was one year since your accident and we planned a very special day for you. Barbara Caprara, Melissa and I rented a van and picked you up around 11. When we were ready to leave the van had a dead battery and we had to jump start it. We then went to Roland’s and you had a very successful visit with him. Only time will tell but I believe he can help you. I will do whatever it takes Aaron to bring you back to us. We love you so much and are very proud of you. Your fight to live has been the driving force behind what gets me up in the morning and keeps me going. I pray that I will stay strong and be there for you every step of the way. After Roland’s we took you for a haircut and then we went to Aun’t Ginny’s for dinner. Grandma and PopPop were there and Dad came after work. You were so calm and had this peace about you. One can only hope that as you wake up more you will have an easy transition and will not have to go through the frustration and anger that sometimes follows.

When we arrived home that night there was a letter waiting from the high school asking to attend the sports awards banquet on the 4th of June. They asked us to accept an award for you in your honor. I will do whatever is necessary to get through the 3rd and 4th Aaron. You worked so hard to get to this point and it is important for people to remember who you are and everything you stand for. We will make you proud and will video tape all of these special moments so one day you will be able to see them and remember.

There are going to be many changes at the center in the next month or so. You will be moving to another wing and they are adding 20 new beds in the wing you are in now. It is going to be an extension of Pediatrics and I keep thinking that one day you will be able to give something back and help those children. Maybe this is what God has in store for you, this will be a way that you can bring a little joy and happiness to their lives.
You will be getting new furniture and newly painted room and blinds on the windows. I am going to redo your room and make it very special for you. Some of the pictures and posters I will bring home and put in your bedroom and your special plaques and pictures I will hang in your new room.

It is now time for all the special events at the high school and how I wish you could be there. This is the hardest thing I have ever had to do because you won’t be there with us. Today is June 3rd and it is scholarship night. Mrs. Salamone prepared a special tribute to you and our family and we will present 2 scholarships to 2 of your classmates who we felt resembled your qualities and likenesses. The 2 recipients are Patsy Ciccone and Adrianne Smith. The night was very emotional especially when Mrs. Salamone got up to make the presentation. She was so powerful and so well spoken, there was not a dry eye in the place. Patsy and Adrianne came over to speak to us and thanked us and Patsy felt he was not worthy.

Today is June 4th and it is the Sports awards banquet and I am sure it will be another emotional evening. I told Daddy he had to go up and get your award because it was the Father thing to do. However, Mr. Vara had other plans and when they announced your name they said Aaron’s Mom will accept this award on your behalf. I stood up and could not believe that everyone in the hall was standing and applauding for us. I say us because these past 2 nights are all about you and this is why we have been doing these things for you. Your friends have been very compassionate and caring throughout this most difficult time. You are truly blessed Aaron and one day I pray you will come to know all this. That is why I am writing in this journal for you.

I know now how much your friends truly do love you and miss you, it was evident in your yearbook. The tribute to you was so beautiful and well deserved.

April, 2003

2003-04-30T17:40:00.000-04:00

On Tuesday, April 28th Melissa called me at work at 6:15 in the morning crying in pain with her leg. I left work and came home to pick her up and take her to Dover Emergency room. They found a blood clot and decided it was okay to send her home. She was to follow-up with her Doctor and notify her ObGyn of the blood clot. Melissa had to follow-up with Dr. Trader on Wednesday and she was admitted to Newton Memorial Hospital. The blood clot turned out to be a deep vein thrombosis and could be dangerous if it moved. She was given Hepperin through IV which upset her terribly. It took 2 tries to get the line started but once done she was okay. She was also given Kumidin and told to rest. It has been 5 days and she is now starting to feel better and is allowed to walk the halls and sit up in a chair. The first several days were painful and she was given Percusset. This past week has been very stressful and Dad and I are dividing our time between the both of you. Needless to say I am exhausted but hanging on. Melissa stayed in the hospital until Monday and stayed home until the following Monday to recuperate. She did well on her first day back but had a set back on Tuesday. Her boss called me at 11:30 to come over and I found EMT’s and the health department standing around her. I called Dr. Trader and she told me to take her to Newton Hospital for a Doppler and blood work. Thank God everything is okay and the blood clot is gone and Melissa is feeling good.

April, 2003

2003-04-30T17:39:00.000-04:00

Tomorrow is our big day with Liz and Gregg, I am so excited we are all going to be together but more importantly is where we are taking you. Today you will meet Roland who is a spiritual man who specializes in the mind and body connection. He spent one hour with you today and you were very responsive. He touched you and prayed for you and told you to fight hard and focus. You are already showing signs of improvement with the physical movement in your right arm. I believe you are more aware and will one day soon be with us. Roland told me that you see more than we think you do, I believe him and when we go to see the retna specialist on the 5th of May we will get some good news. Roland also said you are in no pain and that made me feel so much better. I am going to do whatever I can to get you there as often as possible. I believe he can help you Aaron.

You and Gregg had a great day together, after Roland’s we took you both for haircuts and then to Uncle Fred’s deli for lunch. PopPop and Grandma came to see you and you were so content and calm and smiled. They are great people and we are so blessed that our paths have crossed. I do believe you and Gregg will be good friends one day and will impact each other in a very positive way. I pray you will recover from this accident and you will have a quality of life you can be proud of and hopefully one day have a family of your own.

Today, I am making plans for a party for you at the center. One I believe will celebrate your life with all the people who truly care about you and at the same time we will have a salute to the class of 2003. I pray you will be awake to share in this special occasion and you will come to know how truly loved you are and how many friends have come to be with you. The center is doing the decorating and PopPop’s friend is playing music. Uncle Fred and Aun’t Nancy are going to cater it and we all know how great a cook they are.

Easter weekend is here and we are spending Saturday morning picking up the van and visiting with Grandma Jane. We arrived at the center about noon and Daddy followed and we got you home around 2. You were so good and friends came to visit. Andy D’Amico and Sarah Guenther and Debbie. Rob came with Jennine and you stayed up until late Saturday night. Barbara came and visited and the was great until we had to lift you out of the chair. Dad lost it and said we were never doing this again. But you know me Aaron, I take everything in stride and knew you were going to be okay. Worse came to worse we lifted you from the chair to the bed. One of the best things I could have done was to buy a Aero bed and replace the sofa bed mattress with that. It worked well and you slept like a rock. Barbara and Pat came over and they helped lift you in the chair and we went to Uncle Fred’s for Easter. There were about 30 people and we had a lot of fun. The weather was great and you sat on the deck for a while and enjoyed all your cousins and the rest of your family. One thing I forgot to mention was “Charlie” he was so cute when we got you home. He smelled you and ran to the couch, jumped up on the arm of the couch and cried because he could not reach you to give you a kiss. And of course Melissa especially enjoyed you being home because she got you all to herself.

I don’t know when we will get you home again Aaron but I will try my best, even for just a day. I noticed an improvement with you that warms my heart. I truly believe you are more alert and are more aware of your surroundings. You seem to understand more and even though you cannot speak I feel the connection. I can’t even imagine what it must be like for you to hear me and see me but not be able to talk to me. The center is concerned about your need to chomp down and naw at your hand. You are biting the inside of your mouth and causing it to bleed and get raw. Now I find out they are putting you on Valium. I must say all these drugs are making me nervous but they assure me that it is a very mild dose, just enough to take off the edge. I have to believe their right and it is the best thing for you. But make no mistake I will be watching closely to make sure it does not become excessive. If this is any indication that you are moving towards the next level than so be it, that to me is a good thing. I, more so than anyone do not want you to harm yourself and so if the valium will help you to not do that than so be it.

April, 2003

2003-04-30T17:38:00.000-04:00

I have been busy in your room at home cleaning and trying to organize everything. The iquana cage came out great and one of these days I will make your bed for the first time in 11 months.

Wednesday we are spending the day with Liz and Gregg. He is so excited to be hanging out with you and looks forward to seeing you soon. We may go to children’s specialized to see everyone and possibly get you a haircut. We are bringing you home for Easter overnight. I pray everything goes well and you will be able to connect with the home environment. Charlie will go crazy when he sees you but that may be what you need to help you through this.

I wish with all my heart that your best friend Brian will come soon. You need him and I believe he needs you as well. Your friends support you and love you very much. I am very impressed with the care they give to you and the comfort and support. They are sincere and very compassionate.

April, 2003

2003-04-30T17:37:00.000-04:00

Several weeks ago you had so many visitors. There were 19 people who came in one day. Mr. Nemeth, the soccer and basketball coach and his family. The DeRosa’s and family, your 2 great Aunt’s and cousins and Aunt’s and Uncle’s. You did so well and stayed awake the entire time. The two little girls sang Jesus loves you this I know, cause the Bible tells me so. Yes, Jesus loves me, yes Jesus loves me. They were so cute Aaron.

Your sister’s birthday is next month and I don’t know what to do for her. She is going to be 24. Beth is taking her to Atlantic City where she is staying at the Taj Mahal and going to see Sheryl Crow. She is so lucky to have such a good friend and I pray their friendship lasts forever.

Wednesday is going to be a very important day for me. I am taking your cat scan to Children’s Specialized in Mountainside so Dr. Yalamanchi can compare the new one to the one taken in October. I hope to see Sally, Lauren and Stephanie while I am there. Lauren emailed me not too long ago to ask how you were doing. You were very special to all of them and they had hoped with all their hearts they could have done more.

Well, Wednesday is here and I will be meeting with Dr. Y. It was as I had expected and that is a wait and see. He said you may never be able care for yourself or walk or talk, but I don’t believe that. In my heart I truly believe you are giving yourself the time you need to heal. I pray for that day so much. I know you will never be the same but I think you can find your way back to us and some function of life. I saw Sally and Lauren and they were asking about you, I bought pictures with me and they took some for their wall.

Your new wheelchair has arrived and I must say you are so much more comfortable and relax much more than before. It is fire engine red and has a head strap to help keep your head up. Sometimes you are fine without it and others, especially when you are tired you fall forward.

I am noticing you are more alert and seem to be understanding more. You smile all the time and are eating very well for me. Your friends are coming more and they have enjoyed their visits with you so much. Some have heard you make sounds and squeeze their hands and look at them when they talk to you. More and more are coming to see you and they come back more often. They want you to do the walk for graduation but I don’t think that is possible. The only way I can do that is if you tell me you want to. If you can do that I will have you there in a heartbeat.

April 12, 2003

2003-04-12T17:38:00.000-04:00

Today is Saturday, April 12, 2003 and it turned out to be a beautiful day. We had you outside for 2 hours and you were so relaxed and content. You wore the sharp outfit from Katie Howell, I must say she has great taste. She bought you Tommy Hilfiger pants, shirt and socks and boxers. Needless to say they were all red.

March, 2003

2003-03-31T17:37:00.000-05:00

Today is March 21st and it is 10 months since your accident. A lot has happened this past month and there is so much I do not understand and I fear the not knowing. Several weeks ago on a Wednesday, it was approximately 4 p.m. when you had your first seizure. Debbie timed it at 45 seconds from the time she walked in the room and she diagnosed it. I was never so scared as I was that day. To see you shaking and breathing irratically and your eyes going every which way was devastating. I felt so bad for Debbie because she was so sick that day and she was doing everything she could to help you. I stayed until 9:30 so I could make sure you were okay. We went for a cat scan the following week and the news was good. The cat scan did not show any seizure activity or swelling, bleeding and fluid. We were so glad for the news and prayed it would never happen again. Unfortunately, it did. We had gone to see a Neurologist who wanted to prescribe seizure medicine but because he could not say for sure you would have another one we opted to wait. I prayed that it would not happen again but my prayers were not answered. Several weeks later you had another seizure much worse than the one before that lasted one minute and they described it as violent.

Thoughts

2003-02-28T17:36:00.000-05:00

This year was supposed to be a big year for you with special meaning because you would have been a Senior in high school and looking forward to graduation. Your friends are preparing to move on and take on new challenges for the future. The senior class trip is planned for Virginia Beach for 4 days and the prom is Memorial Weekend. It saddens me to think that you will not be a part of it, but whatever the reason that you are where you are today can only be answered by every passing day and the hard work and determination you have to get better. I know you are in a place you do not want to be in and if it were possible you would change the way things are. There has to be some good to come from all of this Aaron and hopefully we will come to know what that is one day soon.

Jeff, the director at the center approached me about having a post-graduation party for you with all your friends and family. I am hoping that one day soon you will be able to communicate to me what it is you would like for me to do. I am tormented about all of this because I try to put myself in your place and think about what you would want me to do. Nothing would make me happier than to hear you say “Yes, Mom or no Mom, I do or don’t want a party.” It would have to be for all the right reasons and not because it would make me feel better or so your friends could celebrate without you being a part of it. I don’t want you to feel as though you are being put on display. However, I do feel this could be a celebration of your life.. Your friends have been traumatized by this accident and what it has done to someone they hold very dear to their hearts. It has not been easy for them to see someone who was vibrant and energetic and constantly full of life, now so totally dependent on other people to care for him. You always made them laugh and whenever someone needed a shoulder to cry on you listened. When you were in ICU for 3 ½ weeks your friends would come in large groups and sit in the hallway hugging and crying and telling all kinds of stories about you. They would laugh and cry and remember how truly special you were. One time they all left and I thought they had gone home but they came back with McDonald’s and all sat on the floor eating. I went over to them and commented about lunch and they said they thought if you smelt the French fries you would come out and join them. I remember thinking how difficult this was for them and how they were doing everything they could to get through this. I could see and feel their pain but it was hard for me to reach out to them. They were very supportive of me and Dad and shared many stories about you that helped us to come to know a side of you we never realized. We would laugh a lot and cry, but I remember thinking how proud I was because of the tremendous impact you had on your friends.

February, 2003

2003-02-28T17:34:00.000-05:00

On Thursday, February 20th, your Dad and I were married 26 years. We came to see you and then went to dinner and much of the time we spoke about you. Dad works with someone who has a son who is going to be 18 and is in a coma also. He drug overdosed and they do not hold out much hope for him. He may be coming to Wanaque and be with you on the 2nd floor. Who knows someday you may meet and be able to communicate with one another. Nothing would make me happier.

On Friday, the 21st your sister left for Ft. Lauderdale, her and your cousin Margaret flew there to surprise Grandma and Pop Pop for the weekend. Lucky her to get away from this lousy weather. She is basking in the sun in 90 degree weather, swimming and driving around in a convertible. We won’t see her til Wednesday because she has to attend a conference for work and goes directly there on Monday.

Thoughts

2003-02-28T17:33:00.000-05:00

From the time you were a little boy you always smiled and had so much fun. You were relentless in doing everything you could to do things your way. You never wanted to wait it always had to be NOW. You lived your life to the fullest when it came to trying new things and taking on new challenges. From the time you were 4 years old you played soccer and did t-ball. You went from in-town leagues to traveling teams and played for other towns as well. We spent many summers traveling with you to different states for soccer and because of that we met some wonderful people along the way and you made many friends. It was a wonderful experience for all of us, as a Mom I am so thankful for those opportunities.

When you had your accident I did not realize the enormous impact it had on other people. I learned so many things about you I never knew and questioned how well I knew my own son. I am especially proud of the commitment you made to help other children with sports. You assisted coaches in a way that enabled their children to learn from someone who has experienced it all. You impacted many lives and formed bonds with so many youths that will never be forgotten.

When you were 4 years old and attended the pre-school program at the high school you were a challenge to everyone there, especially when it came to sitting still and doing your work. All you cared about was socializing and playing. And then you met Barry. Thank God for Barry, he got a hold of you and from that point on never let go. He had the patience of a Saint and never gave up on you. You loved him so much and even when he had to leave to go to another class he found his way back to you later in the day. Sometimes he would skip a class just so he could stay with you. He loved those mornings with you and the special bond you had for each other still lives on today. He never forgot you Aaron, you have always had a special place in his heart. One day soon you will meet again and I pray that you will be able to communicate to him.

Aaron, I love you with all my heart and continue to pray for you. You are in for the fight of your life and if anyone can do it you can. People tell me you have your youth on your side and the strength and determination to see this through. I have never been more scared in my life to think that I will never have the Son that I brought into this world as one and the same. I look at you and see how far you have come and how wonderful you look. But unfortunately, we don’t know what is going on inside. I pray that you are healing and each day will bring you closer. I miss your voice, your vibrant personality, your infectious laugh, and above all your sensitivity and compassion towards other people. I especially miss the special times you and Melissa shared together. The two of you fooling around and giggling over stupid things and many times you would end up fighting and hating each other. Typical of siblings but you always found your way back to each other.

February, 2003

2003-02-28T17:32:00.000-05:00

We had a blizzard that kept me from coming to see you. You were on my mind constantly and I wished with all my heart that you could have been here with us. We had about 30 inches of snow and we could have used some of your muscle power to help clean up the mess. It was overwhelming to say the least. We would shovel and a few minutes later it would be covered. The worse part was finding a place for all the snow.

On the 21st of February, it was 9 months since your accident and I continued to pray for that one miracle that will bring you back to us. I miss you terribly even though I see you everyday. Your infectious laugh and funny sense of humor always kept me going. No matter how mad you were at me and always told me to zip it, you always knew what to say or do to make me feel better.

The Holidays

2002-12-31T17:32:00.000-05:00

Thanksgiving came and went and then it was Christmas. We took you home for 3 days and loved every minute of it. We spent Christmas Eve day at Uncle Freddy’s and had a fantastic time with all the family. You were so relaxed and happy. Christmas we had a blizzard to beat all blizzards and needless to say we were snowed in. Dad spent much of the time shoveling and Melissa and I spent much of the time inside with you. I could not even imagine not having you with us on Christmas so this was truly a blessed holiday. If we had gotten snowed in and you were at the center I don’t know that I would have made it through the day. I wish I had the video camera charged and ready to go because you would have cracked up at seeing Melissa outside in the snow. I honestly believe she was trying very hard to be you because if it were you outside you would have been playing in the snow like she was.

New Year’s was quiet this year, your Dad and I spent the evening with you at the center. It was nice and we were very thankful to have you here with us. This has been a most difficult journey and this past year has changed how I feel about life and I question what is really important. We pray for you to come back to us and we can all be a family again. We miss your humor, wit and tenacious laugh. You have given so much joy to us and bring so much joy to everyone who comes in contact with you.

October, 2002

2002-10-31T17:31:00.000-05:00

On October 8th, 2002, we left Children’s Specialized and moved to Wanaque Nursing and Rehab. I drove in the van with you and I am feeling overwhelmed at the thought of starting over in a new place. It was scary for us because I always worry about who will be taking care of you and will you get the special care you need.
I remember when we arrived, we were met in the lobby by Jane, the Admissions Director, and she took us upstairs to the 2nd floor in room 220. We left you with Claudette, the charge nurse and your aide, Gloria. They had to do a preliminary work up on you to make sure you were okay and so we decided to go to lunch. When we came back Dad, Melissa and I did what we could to make sure you were settled in and then we left. Melissa and I took the next day off so we could decorate your room and make it as cozy and comfortable as possible. Claudette and Gloria fell in love with you from the start and did everything they could to make sure all your needs were met. The first few weeks I arrived everyday around noon and spent time with you. If the weather was nice, I took you outside for walks. Your roommate was Chris and he is very seldom in the room because he spends all his time in the dayroom. Several days after we arrived we met a wonderful nurse named Debbie. She was the one person who went out of her way to make sure I was okay with everything and she took the time to explain things to me. I always worried about the care you were getting and if you were being treated well. You were still very tight and sweated a lot and you still could not bend your left leg. Your wheelchair was on order but it was going to be awhile before you would get it.

June, 2002

2002-06-30T17:30:00.000-04:00

On June 8th a new family came into the waiting room and we found out that another teen had been seriously injured in a car accident. That boy was Gregg whom we have come to know and love and keep in touch with his family. They stayed in ICU with us until June 14th when we were moved to Children’s Specialized Hospital in Mountainside. There you were to get extensive physical, occupational, and speech therapy. You were still not responding at the time and you developed medical issues that set you back. Your blood clots surfaced once again in your leg and you had to be put on Lovenox and Coumidin. The blood clots originated in ICU and they surgically put a green filter to keep the blood clots from traveling to your heart. You also developed an ear infection and was diagnosed with Mersa. They restricted you to your room for 10 days and everyone who came in contact with you had to wear gloves and gowns. Gregg came to Children’s on June 20th and was there for almost 3 months and then went to Day program and on to Fanwood for Cognitive therapy. We truly hoped for more and that you would wake up and move forward with therapies and be able to one day come home. After 3 months it was decided you needed more time to heal and we were told we had to leave and go somewhere for you to have more time to heal. We found Wanaque Nursing and Rehabilitation but your birthday was coming and we wanted to have a party for you before we left Children’s. So, on September 29th we had about 80 family and friends come to celebrate your 18th birthday. It was a huge success but unfortunately you were so sick. It turned out you had a UTI that was very serious and caused you to spike 103 fevers. You were very pale and weak and broke out in sweats. Finally, you started to come around by the end of the week and we brought you home on Sunday October 6th for the day. It was so special for us and Debbie Gunther drove her van and we picked you up and spent a wonderful day together. Some friends stopped by and family came to see you. You were still not a 100% from the UTI but enjoyed yourself and the time you had with Charlie.

June, 2002

2002-06-30T17:29:00.000-04:00

We were given the option of allowing you to have extensive plastic surgery to repair the shattered bones in your face. The neurologist did not want us to proceed and said it could be dangerous, however, I felt you were in a good place at the time and if you should pull through I wanted you to be able to move forward and not look back. We decided to operate and it was done 7 p.m. on June 6th. The surgery took 7 hours and it took a team of doctors, a plastic surgeon, eye surgeon and ENT to complete the surgery. They rebuilt your left socket and attached your eye properly and removed all the bones in your face. You now have 10 plates in your forehead, cheeks and nose. You pulled through and the surgery was very successful. You look wonderful and I must say very much like the Aaron we all knew and loved.