April Already

It has been a long winter. It seems I have been so busy I sometimes don't even know what day it is. Chris worked a lot at the Nordic Center this winter so Jess and I spent too much time inside. We both have cabin fever. It will be so nice to get back to walking on the bike path and sitting out on the deck again. I am sorry I haven't written for such a long time.

It has been an emotional week for our family. We lost one of my special uncles on my mom's side of the family. "Uncle George" will be greatly missed. He meant a great deal to all of us!

Where do I begin about our Jess? The month of February was a good month. We didn't have any seizures and I thought we were "out of the woods". We are still giving him Chinese Herbs and a low dose of Keppra (seizure med). But, March brought us a couple of seizures. We can recognize their onset and stop them pretty quickly now but I will never be comfortable with them. I have done over 80 sessions of neurofeedback with him since we returned from Minneapolis last fall. I do believe they have helped along with the herbs. We think they have something to do with swallowing or his stomach.

We had a nutri-evaluation done with a blood and urine test to make sure he is getting all of the essential nutrients and found he was not doing well with the one can of Jevity that we were giving him for lunch. We mix a special formula or protein powders, supplements, rice milk, organic fruit or vegies, Omega oils and whatever else I feel he needs in a blender for his breakfast and dinner. It has to be blended fine enough to go through his feeding tube. When we came home from the hospital almost 5 years ago he was on 8 cans of Jevity a day. It was not agreeing with him then and the one can still isn't. It is very complicated to make sure he gets everything he needs through his tube. So, we are now trying a new diet and hopefully it will be better. I just wish he could tell me how he feels.

The people in our life keep us sane. I don't know what I would do without John (OT therapist)and Tracy (speech therapist). They come to the house now 3-5 times a week and have not given up on Jess from day one. They keep us going and from falling victim to that constant lurking companion...depression. We also have our acupuncturist Joan visit him once a week and the cranial sacral girls Denise and Jolinda come once a week. They bring such a special love to that boy. And the wonderful volunteers and employees at the horse arena who also have never given up on him and still get him on Charlie Brown twice a week to ride around the arena for 30-40 minutes. We still have one caregiver, Jaime, who comes 6 hours a week. She has learned a lot about Jess and it is great to have her around. We are trying to find more help but the thought of training someone already tires me.

A good friend Judy and Jess' long time friend Mikey have been coming one day a week to work with Jess. They paint with him or read to him or act out fun plays or sing to him or reminisce the past with him. He is so reactive to their presence and smiles so big. What a blessing friends are! And then there is his Uncle Jim who comes over and plays his guitar or accordion for him or he just checks in to make sure we are okay. They are all so important!

I have 3 special friends who call to check in on us or bring me lunch sometimes on Friday and fill me in on what is happening in our community. It seems the most I get out to do is grocery shop, go to the post office or drive to Twin Falls once a month to stock up on stuff. It has been a long winter.

I walked down the driveway to our mailbox one day and discovered an envelope addressed to Jess. When I opened it I began to cry. It was his high school diploma. He only needed 5 credits to graduate so the school graciously honored the 3 plus years he went to classes after the accident and gave him his diploma. I told him he needed to get on his way to college now. He just looked at me with those big blue eyes and smiled.

How is Jess? Jess hasn't changed much in the last almost 5 years. He tries so hard but just can't seem to link his body with his brain. Some days we think he is totally in there and knows everything we are saying and some days we don't know where is off traveling. He does new things and then they go away. We are constantly trying to find the easiest way for him to communicate so he can make choices in his life. We are still waiting for that miracle.

We visited a new eye doctor in Idaho Falls last month. She ordered him some new prism glasses that seem to help him keep his head and eyes straighter. He has a tendacy to find comfort looking and turning his head constantly to the left.

This month we are going to try to get his teeth cleaned and exrayed and will probably have to have his feeding tube changed. We wonder if it is causing an ulcer. They warned us it might. We are also going to take him to Boise to visit the United Cerabral Palsy center to check on some different options for assistive technology. As always, I am endlessly searching for something we may be missing.

This journey... I would not recommend for the weak at heart. We never thought we would be at this point after so many years. We are exhausted, confused and don't really know where we are going next, most of the time. But I guess we really aren't alone with those feelings these days. We just all have to find a little sunshine somewhere every day. We still pray that someday we will understand. Happy Spring and Happy Easter!