Thinking about Jake

Most of our family have been sent pictures of Jake's psoriasis however I have never posted anything on my blog about his condition. Two years ago Jake has a very strange rash start on his legs and quickly spread to most of his body we went to several doctors and got a different diagnosis from each one. Eventually we were told that his condition was psoriasis which has not cure but could be controlled to some extent. We tried prescription lotions and creams as well as over the counter stuff. Nothing seemed to help him except for time and exposure to sun. His first outbreak really effected him for months until he started swimming during the summer time and getting lots of sun. The next year he never had a severe outbreak the smaller incident lasted for a much shorter amount of time and once again over time he seemed to heal himself and we continued to use the creams and lotions that were prescribed to us. This year he was hit hard again and we decided we needed a new dermatologist and new treatment. I couldn't imagine him suffering through this for 6 months like he did the first year. Jake is now in UV therapy three times a week and it seems to be helping. Our hope and prayer is once we get this outbreak under control we can try and prevent a huge problem from occurring the next time he starts to show signs we hope to immediately start him up with the UV and avoid another situation like this one he is in. Psoriasis.org explains exactly what this disease is:

No one knows exactly what causes psoriasis, though scientists believe it is an immune-mediated disease. With psoriasis, skin cells reproduce in 3 to 4 days instead of 28 to 30 days, as is normal. While normal skin cells are shed unnoticed, psoriasis skin cells build up and form raised, scaly lesions. It affects people differently, and its course is not easy to predict.
Skin involved with psoriasis becomes red from the increased blood supply to the rapidly dividing cells. The white scale, called plaque, is composed of dead skin cells that build up on the skin's surface. Psoriasis goes through an unpredictable cycle: flares, improvement, remission and reappearance. The severity of each case is categorized by the percent of the body involved with psoriasis. Mild cases involve only a few lesions.
Moderate cases cover 3 to 10 percent of the body. (The palm of your hand represents 1 percent of the body's skin surface.) Severe cases involve more than 10 percent of the skin surface, and, in rare cases, may include all of a person's skin. It is not contagious. People do not "catch" psoriasis from other people, nor can they transmit the disease to others. Psoriasis does not spread on an individual's skin because of self-contagion.

Jacob really for the most part does very well. He has great friends who have known him for two years as "Jake the kid with psoriasis". They know he looks a little different but Jake is such a great kid most of the other kids at school and church accept and love him despite this disease. One of the things we have tried to do to help him heal is to keep his hair cut as short as possible. He has horrible scabbing and scaling on his head that itch, bleed, and cause LOTS of flaking in his hair. We hope that in keeping it short the UV therapy and sun will help it to heal up faster. He has really needed a haircut for over a week but honestly I was dreading the process and have been putting it off. Before I can shave it all off I have to try and get rid of all of the scabs/scales so that the hair is cut evenly (his hair mats up really badly in the areas that are effected). I have learned through different websites that by pouring olive oil onto his head and then covering up the hair with plastic wrap for about 20 minutes helps soften up the scales and then you can comb through with a fine tooth comb and get rid of all of the scabs quickly and less painfully. We tried that today and it worked so well. It was still a little uncomfortable but not nearly as bad as it has been in the past. We shaved off his hair again after we finished combing through and Jacob made a comment to me that made me feel bad for him. He asked me why he couldn't be normal. I told him that such and exceptional boy like he is could never be normal. I also told him that there are many different diseases that effect people and so many of them are much much worse than his. We talked about his disease and how it is yucky but that the doctors are trying to help him heal everything up and hopefully in the future we can stop it from getting this bad again.

Jeremy and I love Jake so much and couldn't have asked for a better son. We are so proud of everything he has become and know he has an incredibly bright future. On a much lighter subject Jacob had an award assembly at school yesterday to honor the kid's performances over the past six weeks. He was awarded several things including, "A" honor roll, perfect attendance and no tardies, commended on his reading benchmark test, commended on his math benchmark test, and 20 AR points (points that kids earn by reading certain books and taking comprehension tests after they are done). Jacob and Riley's school has a reward system to encourage kids to try their hardest. The kids are given "dollars" for doing certain things. They use the dollars to buy things at the school store. Jacob was given 92 dollars for all of his achievements over the past six weeks. The next highest 3rd grader was awarded 76 dollars. The average 3rd grader was awarded between 25 and 35 dollars. Like I told Jacob today, their is no way such an exceptional kid can be "normal".

I wrote this post because I was thinking about Jacob, his disease and the struggles that come along with that. I need to take just a second and brag about Riley as well though. At Riley's 1st grade award assembly she was also awarded with "dollars" she did very well in her class and was awarded for perfect attendance and no tardies, reading above grade level, and passing the 1st grade tiger math test. In all she was awarded with 48 dollars. She won every thing that was available for a 1st grader to win except for one award that is called "staying on San Jacinto". This award is a behavior award that is given to a child who never had to be warned or reminded that they need to adjust some kind of behavior problem. Anyone who knows our sweet Riley also knows that talking is her "thing" I could never imagine my baby earning this award because it would mean she was not being herself. We love Riley for everything she is including her excessive talking.