The Flu!

The day after my last post Jess became very sick with the flu. He had a 101 fever and a nasty cough. We worry about aspiration and pneumonia so I called his doctor hoping he would come to our house to see Jess so we wouldn't have to take him out in single digit weather and around a lot of people. Well, we don't live in the "Little House on the Prairie" days. The doctor was too busy to come by so he just prescribed 3 days worth of strong antibiotics and a decongestant. Luckily, something worked and he was doing much better within about 5 days. We kept him home all week and sent Brandie home so she wouldn't get it. I woke up on Tuesday with 102 fever and spent 4 very sick days. Chris had to work so Jess and I spent a lot of time moaning together. It was brutal! I got panicky a few times thinking about how Brandie is the only person that really knows how to care for Jess and if something happened to us who would take care of Jess. It wasn't a good feeling so I am going to get on with the search for other caregivers. I hope the new facility will be built here soon so maybe we can get them comfortable caring for Jess in emergency situations. Chris came down with the flu a couple days after me and spend his share of time with the fever, chills and cough in bed. We are all just now feeling much better except now mom has it. Jess went back to his normal activities this week.

Unfortunately, Jess' good friend, Curtie was in a climbing accident last weekend. He was climbing on the YMCA climbing wall and fell 30 feet due to equipment failing. He broke his back in three places, punctured a lung and got a slight concussion. We are so thankful to hear there is no paralysis. I swear he has 9 lives. He is doing well at home now but will be in a body cast for 3-4 months. We love you, Curt and wish you a speedy recovery!

Eye Appointment in Boise

Here is an update on the eye appointment we had with Dr. Johnson in Boise. Unfortunately, he did not watch the video I sent to him. He did notice a big change in Jess' alertness and eye tracking...thanks to all of our therapist's hard work. Here are a few of his comments:

1. Jess is not seeing double. He said when his left eye wanders Jess actually will shut off the vision in that eye. He said it is important for us to encourage him to bring it in alignment with the other eye or to cover the right eye and get him to track something to bring it back.


2. He really wants us to use the board Tracy (our speech therapist) uses with the choice of letters on it. She has Jess choose a letter to spell words. He wants us to expand it to get him to do simple addition with numbers. Playing cards might work too. He also said to use pictures that will interest him. He wants us to ask questions and to get him to use yes/no blinks to answer. He also thought it would be good to get him to look at pictures of music, tv, a light, ect. We need to ask him to look at his choice of activity. He wants us to expand on his cognitive abilities and make him use his brain more. He said that will lead him to using an eye gaze program.


3. He wants us to put Jess' prism glasses on more than less. He said they challenge his brain and helps with balance. He also wants us to continue to patch his eyes in all sorts of ways.


4. He said Jess can see out of both eyes.


5. He said if he is bored he will close his eyes and shut us out so we need to change what we are doing. Pictures of pretty girls might help! The light on a pretty girl may keep his attention. Imagine that!


6. The staring is normal and because we can snap him out of it...it is a good thing. He doesn't relate it to seizures.


7. Because we do not know what he can really comprehend, we need to challenge his thinking.


8. Everything done must be done in slow motion so he can catch up to it with his eyes.


9. When we move him quickly and his eyes go digital it is his vestibular system catching up. Normal.


10. We are on the right track in what we are doing in therapy.

The best thing he said is Jess is progressing and that is awesome to hear!

Chris and I are reading a book right now called "Secrets of the Lost Mode of Prayer" by Gregg Braden. It states how important it is for everyone to see what they want, not what they don't want. In other words, we need to see Jess whole, perfect and complete. We must see him walking, talking, strong, healthy and healed. And we must be grateful for knowing that this has already happened! Help us with this vision. We are a mirror of our feelings and with good feelings, we will see a miracle!

Eye Tracking

I just finished making a video of Jess eye tracking for the eye doctor and wanted to download it here...but it failed. I wanted to show you how Jess can track with his eyes. When we first came home from the hospital Jess could only look to the left. He can now look right, left, up and down. He also can sometimes identify letters on a board to spell different words by looking at one letter at a time. I want to thank all of his therapists who have worked so diligently on his eyes. I feel he is ready for an eye gaze program. We have an eye appointment on Friday in Boise so I will discuss the options with his doctor. I would still like to get him back down to the eye specialist in California. She was so good and saw potential in him two years ago.

Jess has also been moving his shoulders and arms differently. He seems to be more aware of his movements. He is holding his head up longer and shifting his hips a little while Chris holds him up standing. These are all encouraging for us to see.

I called the Cleveland Clinic last week and talked to the research assistant, Jenna. She informed me that the doctors have requested Jess' files to review again. She said it was a good sign. The second patient they performed the brain stimulation surgery on in December is doing very well and is in intensive rehabilitation now. She said they were anxious to pick the other 10 candidates so they could continue with the study. She also said the procedure and the 6 months of intense therapy would be paid for by grants. We would only have to pay for our transportation and our stay in Ohio. Her enthusiasm gave me hope that Jess would be chosen. We don't want to get too excited though and then be disappointed.

Keep the prayers going for Jess. We need all the help we can get to keep us all going! With love...

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...