Good news!

I just thought I would tell you some great news! Chris and I were just sitting by Jess in his room. He is laying on his bed. Jess normally keeps his left arm bent at the elbow most of the time. Chris asked him to straighten his arm and put it down by his side. He started rolling his wrist and moving his arm and all of a sudden down it went. He repeated the same motion on command 4 times. Huge! We get so excited for little movements especially on command. Well, I promised I would have good news and I am glad I could keep my promise. Good night!

Happy Birthday, Angela!!!

Lots of love to you! Hope Joey spoiled you on your birthday. Wish we could have been there to sing you Happy Birthday! Jess, Chris and Grandma send there love too!

We are not going to Michigan!

I forgot to mention that I did bring mom home the day after I got back from MN. She is really doing well. She uses a walker to get around the house and still tries to be independent. I have to keep my eye on her so she doesn't get too brave. My Aunt Lura and Uncle Homer who are in their 80's came up from CA to visit us the day after mom came home. They stayed for a couple of days and we enjoyed their company. And yesterday, Danny Moranz, a friend that Chris went to kindergarten with came to visit. He is riding his motorcycle (www.dansmotoride.blogspot.com) all the way across the country to South Carolina. He has some great pics on his website. It was great to see him, too.

I had a lengthy conversation with the a lady from the University of Michigan today. She said Jess was "not a good fit" for their program. It is designed more for someone who is farther along than Jess. She suggested we look into the Casa Colina in California. So, as usual, when one door closes you just find another that is open!

We had a conference call this week with Dr. Suter, the eye doctor in Bakersfield that we had examine Jess when we were there almost two years ago. Catherine, our OT from school, had sent her a video of Jess during therapy. We were hoping she could direct us going into the future. She was impressed at how well Jess was doing tracking and moving his eyes. We all feel he is ready for the next step to communicating but we are just not positive what that step should be. If I could just get help from a facility that works with a lot of traumatic brain injuries maybe we could find the key to helping him communicate. I can't tell you how frustrating it is not to be able find someone that knows what we should do. I refuse to believe this is all there is.

Jess has not been sleeping very well. He tries to sit up during the night and moans. He also grinds his teeth to get our attention. I tried everything I could think of to get him to sleep last night. We wonder what he is dreaming or thinking. It must be so frustrating to not be able to tell us what he needs. It is sure frustrating for us not to be able to help him. All we can do is talk to him and reassure him that we are with him and everything is ok.

Have a great weekend!

What is a normal life?

I have been quite busy for the last week. I had made a plane ticket to Minneapolis several months ago to see Joey run in his first triathalon on July 14th but did not think I could go on the trip due to mom's accident. Thankfully my family made it happen and I did get to go for 5 days with the help of Jamie, Brandie and Chris. Mom stayed up in the hospital so I wouldn't worry about her.

It was a wonderful trip and Joey did great! It was a bit hard for me to relax into a normal lifestyle since our lives have been far from normal for the last three years. I forgot what it was like to not be constantly worried about Jess and my mom's welfare. Everyone survived wonderfully while I was gone and Jess even gave me a smile when I walked in the door.

He has been doing well in therapies and he has been seizure free. I am checking on the possibility of going to the University of Michigan. They have an aphasia (loss of ability to speak or understand speech) program in which they can help Jess communicate. It is an intensive therapy program for 6 weeks. As usual, we will probably have to jump through hoops to get there. It would be a dream come true if we could have a better way to know what Jess wants and how he feels. Now, it is a guessing game.

Jess will attend high school for one more year and I can't believe it is a month away. I like him to be around kids his age so I am glad he will be back there soon. Brandie will be taking him this year. She is so good with Jess.

Well, that's all for now.

Need more good news!

Here is a picture of Jess, Curtie, his mom Linda and I celebrating Jess' birthday. He didn't know what to think of all of the balloons. I keep trying for a smile but they are pretty hard to get.

It seems I don't have a lot of positive things to write lately. I guess just getting through all of the events in June and July is positive. And, Mom is doing well. She is still in the hospital. Jess and I went up to see her today. She always gets teary eyed when she sees Jess. She said she really misses him. Jess grew up with her and dad around all of the time, so they are very close. She will stay in the hospital for a few more days to rehab her leg. We have a wonderful hospital here and they are taking great care of her. She has made a lot of friends. We may even have some leads on new caregivers to help us, too.

Unfortunately, the bad news keeps coming. Medicaid would not approve the two weeks I wanted to take Jess to the Elks in Boise. But, I have not stopped the process. I am trying for outpatient therapy next. We can stay in our camper in the parking lot and I can take him to therapy everyday if they will approve it. If that doesn't work, I guess we aren't meant to go to the Elks and I will search somewhere else. I am watching a website of a girl, Samantha, who is injured like Jess and is going to the University of Michigan for help with communication and voicing. Who knows?? Maybe we will go to Michigan.

The ceiling lift we use to get Jess in his chair, on the floor, in the bathtub, on the couch broke. I called to see if it was still under warranty and it ended June 6th. So, for $1,800 I will get another one. It is a lifesaver for; we, who are not 6'4 and 220 lbs.

Jess looks good and he is healthy but as we keep getting reminded...it has been 3 years. So what else is new! I will try to get more pictures downloaded. And, I promise to have better news soon. Jess is in the bathtub so I better go help get him out. Good-night!

Happy Birthday, Jess!

Brandie was with Jess today so I decided to hike up a hill that we have hiked with Jess several times in the past. He was always several minutes ahead of us, of course. I find myself trying to go to places we have been to see if I can feel his presence. When I got to the top I had this overwhelming feeling of wanting to just keep climbing up and up until I found him. Chris and I shed a lot of tears today. Today is his birthday. Twenty years ago we brought a beautiful blue eyed, blonde haired, beautiful boy into this world. We only got to spend 17 of those 20 years with him. Yes, you might say he has been with us for the last 3 years too, but it just hasn't been fair. We didn't get to see him laugh enough, talk enough, shoot enough basketballs, give us enough hugs, share enough stories, tell us enough of his goals and dreams...we didn't listen enough, play enough or have enough fun. It hurts so much sometimes not knowing if we will ever get a chance to say and do all of those things again. I know one thing we did do though...we have always loved him more than anyone could possibly love someone and we still do.

Thanks to all of those who remembered Jess today. He got lots of phone calls & cards, my friend Sheila did a great Marilyn Monroe version of Happy Birthday for him (she even got a smile out of him), Curtie and Linda brought him 20 balloons, little Jahara sang him Happy Birthday over the phone and his Grandma Juliann in Cleveland even played Happy Birthday on a harmonica for him. He is loved!

If you would like to leave him a message, please click on comments and type in your message. I will read them to him.

Have a safe and Happy 4th of July!

Life is challenging!

I don't know why our lives are so full of challenges but it just continues to throw curves that are almost too much to endure. The night before we went to Boise my mom slipped and fell in the dining room and broke her leg. She thought she was ok the next morning so she and I jumped in the car and drove to Boise for Jahara's birthday party. We came home on Thursday and Friday she was very uncomfortable so I took her to the E.R. The exray showed two cracks in her femur right below the joint. She had surgery on Saturday and the doctor inserted 4 pins in her bone. She is doing pretty well but will need a lot of therapy. At 87 it is scary! Don't ask me how she walked on that leg for two days!

And, tonight Jess had another seizure about 9:00 p.m. It was one hour after we gave him his seizure medicine. Luckily, the seizure stopped without any medication but now we will watch him like a hawk all night. We have no idea what brings them on or how strong they will be when they come. All I know is they are frightening!

I don't know what else to say....good night!