So strange!

It is so strange that the Cleveland Clinic has not returned my phone calls. They were the ones who called me to alert me of the process they were starting to review Jess' records. Oh well, I guess there is a reason.

Jess was smiling a lot yesterday. He seemed to be in a very good mood. And then, I got him home from horseback riding and therapies and got him on his bed. I walked out of the room for a second and from the kitchen I heard the bell on his bed ringing so I ran in there and he was having a small seizure. I put the bell on his railing for that reason. I hurried to get his medicine and he stopped! Thank goodness! He continued to smile later in the evening and seemed just fine. Sometimes we think he goes into a seizure because he wants to do something and gets too frustrated. Do you blame him?

Chris has worked every day for the last 7 days getting the nordic and snowshow trails ready for the Special Olympians. The event started today. He feels very honored to be able to help. This is a trial run for Idaho to host the National Special Olympics next year. It will be a wonderful event. I wish Jess could participate.

Please keep up the positive thoughts for Jess and thanks again for checking in.

We will get an answer!

Sorry to say, I have no news from the Cleveland Clinic. I left messages for two days and did not receive a reply. Not sure what's up but eventually we will get an answer. Here is a link if you want to read more about the procedure we are considering for Jess... Deep Brain Stimulation. They have already had success with two candidates so it is encouraging.

Thanks for checking in...we appreciate your positive thoughts.

No news!

We did not hear from the Cleveland Clinic today. I will give them a call tomorrow. I hope no news is...good news! Thanks for checking on us!

Well, we do not know yet if they are going to accept Jess at the Cleveland Clinic or not. We were very anxious for the phone call last Wednesday but when we got it they just informed us they would need another week to go over his records and images. We are waiting patiently... or not...for the phone call this Wednesday. Hopefully, we will get the right answer and be able to make the right plans from that answer. We have all been saying a lot of prayers for guidance. In the meantime, he is doing well! He has been trying to hold his head up in a different manner in the last week or so and has shared quite of few of those wonderful smiles that we missed so much when he was sick.

We have had several exciting moments occur for our family. Jess is a new uncle to a brand new nephew. Joey and Angela are proud parents of a beautiful baby boy who was born on February 16th. We are all so excited!

Jamie and Jahara came home this weekend so we celebrated the wonderful news together. They also had good and bad news. They are moving from Boise to Minneapolis to be closer to Joey and Angela. I know it is for the best which is the good news but we will miss them so much which is not so good. Jamie is driving a truck full of their furniture and pulling her car all the way to Minneapolis on March 1st. I am flying Jahara there on the 7th to meet Jamie and I will also get to spend a few days with little Breck Joseph.

Change is good, they say! We just have to know we are always in the right place at the right time for whatever reason. I'm struggling a little with that one but time heals...doesn't it?

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...