Brandie & Grandma Juliann's Birthdays

Good morning,

So far, the New Year has started off quite uneventful for Jess. Brandie's birthday was on New Year's Day...Happy Birthday, Brandie!!! We hope you had a nice week off! . And, Jess' Grandma Juliann's birthday was yesterday...Happy Birthday, Grandma Juliann!!!!

We have gotten a lot of snow in the last few days. Chris works at 4 in the morning at the nordic center 4 days a week. He tries to get in a 10 hour day setting all of the tracks at Sun Valley for the nordic skiers. I have had Jess by myself all week. I really miss Brandie. I take over on the nights Chris sleeps with Jess at 4 a.m. Here is a taste of our day...we give him medicine at 5, start his feeding at 6, more medicine at 8, get him dressed which takes an hour, do range of motion, give him water at 10, get him up, feed him at noon and give him medicine, work on some sort of communication or he has therapy, more water at 2:30, medicine at 4, Chris stands him, we make his food at 5, do personal care at 6:30, water at 7:30, get him in the bathtub or ready for bed, medicine at 8, let him watch t.v., listen to music or a book on tape or read to him, tea at 10, medicine at 11 and then we collapse at 11:15. There is a lot more involved but this is just a taste of our day. They are busy and when you have Jess alone you don't get much else done. We really appreciate the 4 days Jess goes to school with Brandie. I can go to work about 15 hours a week and get the other chores done around the house.

Jess is still adjusting to the increase in seizure medication. He hasn't been sleeping very well at night so we are all lacking on the restful sleep. It takes a good two weeks to get some sort of normalcy after a seizure and increase in medicine. Last night I finally slept for a good 6 solid hours and feel so much better. Tonight hopefully Chris can get a good night's sleep too.

An article came out in the news of record in our paper this week stating that Jess received a judgement to receive insurance money owed to him. After 3 1/2 years the driver's insurance finally paid us the $50,000 of "liability only" insurance that was on his car. There is a catch...because Jess is on Medicaid, Medicaid has locked up the money because they want to be reimbursed for the money they have spent on Jess. We have to go before the Supreme Court in Boise in February to try and get the money for Jess. There was a U.S. Supreme Court ruling on another lawsuit similar to ours a few years ago. The court was in favor of the disabled person because she would have ended up with no money to support her for the rest of her life if she paid back what Medicaid had paid. Hopefully, we will be successful too. As I have said before, you think you buy all of this insurance to protect your family but you would not believe what you go through getting them to pay when something so devastating happens. Jess was innocent and in the wrong place at the wrong time. There is no way to relay how much financially he will lose in his lifetime because of the accident. The expert witness in our lawsuit against Ford estimated his lifetime loss at over $20,000,000. And, who knows how much we have lost financially. So, beware and try to be aware of what you are really paying for when you write out those checks for insurance! It's the fine print that doesn't get your attention.

We try not to be angry or bitter because it really doesn't do us any good. We have a warm house, cars to drive, food on our table, family and friends who send lots of love and we are still capable of doing what we can for Jess. Those are the important things!

Happy New Year!

I just returned home from taking Joey and Angela back to Boise to fly home to Minneapolis tomorrow. We had a wonderful week with them and Jamie and Jahara. Jess was very alert and smiled at all of them all during the week. I know he had so much he wanted to share with them and must feel so frustrated that he can't get the words out. It was really hard to see them all leave.

We did give Jess 10 mg of Ambien one day and he did seem to move and wiggle more than normal. It only lasted for about an hour and then he was pretty wiped out. So, we decided it's not worth tiring him out at this point. Maybe he's just not quite ready.

He had a few visitors during the week such as his good friend Dustin, a substitute teacher, Tracy, who spent time with him at school, Angela, a friend from when he was about 10, and his other long time friend Mikey who ran into him at therapy. I wasn't there but heard from everyone that Jess gave Mikey a look and a smile that lit up the room and all of their hearts. We know he's in there and that kind of response just verifies it. He does miss his friends. Thanks to all of you for sharing some time with him.

We took the whole family and Brandie to the play, "Snowflake" one night. It was a very entertaining and heartwarming one man play. The actor had also been in a car accident earlier in his life and was told he would never walk again. You would never know it watching him dance around the stage. Jess was very attentive and actually turned his head and eyes following him across the stage. We were quite the group with Jess' four year old neice, his 88 year old grandma, his sister in law who is eight months pregnant (with my little grandson), his mom, dad and his sister. It was an evening we all remember.

Jess had a little seizure yesterday. It again was scary and reminded us of how things can change in an instant. He stopped on his own and I quickly gave him extra seizure medication and Ativan to ensure he wouldn't start up again. We, of course, always wonder what triggers the abnormal electrical discharge in his brain but we never seem to find a reliable cause. The after events are always interesting. This time he has been very alert today and seemed happier than usual. Other times it wipes him out for a couple of weeks. We are just glad it didn't last very long.

Not much more to report except we want to wish everyone a wonderful remaining holiday and the best New Year ever! We are expecting lots of good surprises! Why not?
Our love to all...Pam, Chris & Jess

Three and one half years today!

I don't have any new news. Jess is doing just fine. He is healthy, warm, loved and he even shares quite a few smiles lately. Today marks 3 1/2 years since Jess was hurt. They told us not to expect much change after one year but if we give up and listen to those thoughts...what then? I say you never give up and so what if a year or two or three has past. We are all still here! And, what do they know anyway...miracles happen everyday!

We have not heard from the Cleveland Clinic but today they performed the brain stimulation surgery on the second of the 11 candidates for the study. We send them our best wishes for another success!

We are so anxious for Joey, Angela, Jamie and Jahara to come home for Christmas. There is nothing better than to have family around at Christmas. Enjoy getting into the Christmas spirit! It is a crazy emotional hustle bustle time of year that comes and goes so fast. Take a deep breath and enjoy. It will all be over before we know it!

Where is our miracle?

I just wanted to give you a quick update. We gave Jess the Ambien for 3 days and did not see much change so we stopped. I think we will try again tomorrow. We just wish we knew what Jess was feeling. He didn't get sleepy. I emailed the doctor that was on 60 minutes at the Cornell University to get more information on the protocol for using Ambien but I have not heard back from him.

I also sent the video to the Cleveland Clinic so we will see what they think of my beautiful son! He did do some good moves on tape.

I'll be back with more info soon...

Ambien

Today we gave Jess the sleeping pill, Ambien that was broadcast on 60 minutes last Sunday. We had an appointment with his neurologist on Friday and asked her for a prescription. We gave it to him at 10:30 a.m. and, of course, had expectations that he was going to start talking to us. Not quite, but he did move his legs and arms a lot more than normal and when Chris was standing him he shifted his hips back and forth. It was pretty weird that he didn't sleep much all day. We are going to try it every day for a week to see if it does anything to help him respond.

I will be sending the video off to the Cleveland Clinic this week. The second candidate will be going into surgery soon. We are anxious to see if their will be another positive outcome. It would be a wonderful miracle for that person and for the family.

Snow is falling and the holiday mood is upon us. Enjoy the season...we need to all take time and remember what is really important. Good night!

Added note: Just wanted to let everyone know we did see 60 Minutes last night about the minimally conscious people that have taken the Ambien sleeping pill and "woke up". It is ironic because exactly one year ago today I asked our neurologist about it and she said there was no scientific proof it worked so she didn't advise us to try it. We are going to pursue it again!

I hope everyone had a nice Thanksgiving. The holidays are still pretty emotional for us. It just doesn't feel good to sit down to dinner and not have Jess filling his plate a mile high. I did give him some mashed potatoes and gravy and some sweet potatoes but he had a hard time swallowing. Later on I tried pumpkin pie and that was a success. We were glad to have Jamie, Jahara and Jess' Aunt Claudia here. Little "Ja Ja" always keeps us hoppin' and doesn't give us much of a chance to be too sad.

Jess started to have another little seizure the night before Thanksgiving but it stopped on it's own....thank goodness. We have increased his medicine and he is not sleeping very well. He grinds his teeth and acts like his stomach hurts. It would be nice to know if it is the medicine causing it. Chris and I are not getting much sleep either.

This week the Wood River Journal printed my letter to the editor (scroll down to find the letter titled Ford Should Be Held Accountable) this week. I do hope the people that needed to hear it...read it! I won't elaborate on it because if you also read it you will get our point of view on the whole subject. I just wish the government would listen.

Hopefully, things will be calmer now. It has been a rough month. We are trying to get the video created to send off to Cleveland. They want to see what kind of responses Jess can make. They have another person going into surgery for the procedure the first week of December. We are anxious to see if that one will be a success too.

Before we know it, it will be Christmas. It has been down right cold here but no snow yet. Jess sends all of you his love.

Happy Birthday, Grandma!

Today is my mom's 88th birthday. She is such a strong lady and a great helper for me with Jess. She watches him while I do things around the house, she talks to him so loving and she reads stories to him. She has always been close to Jess since he was born.

Thank you, grandma! Thanks for always being in my life!

Jess has been doing ok. Not many changes and he finally has recovered from the seizure. We have increased his medicine and so far have not seen too many side effects. He has a short week due to Thanksgiving. His sister, Jamie, his neice, Jahara and his aunt, Claudia will be here for turkey dinner.

It is the season to be grateful...grateful for all our friends and family. Thank you to all of you for being part of our lives! Happy Thanksgiving!