Gabe is learning new ways to compensate for his blurry vision. At baseball practice last Tuesday, he got his very 1st hit of the season which literally brought tears to my eyes! He timed the pitches and to him it felt as if he were swinging early, but in reality it was just right. I was so happy for him that we went to Baskin Robbins to celebrate! This was a huge accomplishment for him, as striking out had become very discouraging.
Also, found out that one can buy beeping baseballs to help sight impaired kids enjoy playing catch!
http://www.nbba.org/equipment.htm
On a similar note, we spoke to Gabe's Sensei at Karate and were able to agree on individual kata but no modified sparring due to safety concerns. They were also kind enough to waive the annual dojo membership fee for us.
Monday, May 17, 2010
Monday, May 10, 2010
Facebook: "Vitamin World Like other parts of the body, the eyes can be affected by the stresses of time. Lutein plays a role in the maintenance of eye health and is the principal Carotenoid found in the central area of the retina called the macula.** Carotenoids are fat-soluble antioxidants found in fruits, vegetables, marigolds and other plants.**"
We started Gabe last week on a daily regimine which includes Lutein, Omega 3 fish oil capsules, and Goji Juice which looks, smells, and probably tastes like a$$. Poor kid. Considering the possible alternative though, he has gone along with it fairly willingly.
As a mom, I am struggling a bit. His Dr. has informed us that anything with wheels is probably no longer safe for him. That is to say that he won't be allowed to cross any major roads alone. He can still ride his scooter, bike, skateboard etc, in confined areas free from vehicular traffic. I will let Gabe decide when he cannot do even that any longer.
We started Gabe last week on a daily regimine which includes Lutein, Omega 3 fish oil capsules, and Goji Juice which looks, smells, and probably tastes like a$$. Poor kid. Considering the possible alternative though, he has gone along with it fairly willingly.
As a mom, I am struggling a bit. His Dr. has informed us that anything with wheels is probably no longer safe for him. That is to say that he won't be allowed to cross any major roads alone. He can still ride his scooter, bike, skateboard etc, in confined areas free from vehicular traffic. I will let Gabe decide when he cannot do even that any longer.
Thursday, May 6, 2010
Facebook | Christine Steed Dunaway
Facebook Christine Steed Dunaway: Gabe had his ERG on Monday, May 3rd. It was a long and painful test for him, because his eyes are so sensitive to light. He was a trooper though and wanted me to be in the room with him. The technician said that he actually did better than some of her adult patients. I am so proud of my son because he was brave. We sang worship songs together in the dark while waiting for his eyes to dialate. It was a beautiful time of peace and I knew God was watching over him at that moment. Later, following the test, we had our "funny moment of the day: at Big City Diner, Gabe was still in dark glasses due to the eye test. The waiter/manager is joking around with us and trying to get Gabe to laugh. He says 'would you like me to bring you a scratch and sniff menu son?' We all died laughing. Sometimes you have to laugh when you would really rather cry...Makes bad things seem more bearable some how.
http://http://www.medicinenet.com/electroretinography/article.htm
http://http://www.medicinenet.com/electroretinography/article.htm
Mine eyes shall see the glory! | causes.com
Mine eyes shall see the glory! causes.com: "Monday the 10th we have the 'round table' meeting at the school with teachers, special ed, etc. to determine the best ways to help Gabe in class. He will of course need special accomodations. I am curious to see what types of resources are available in the Hawaii Dept of Education's arsenal, considering the kids can't attend school more than 3.5 days a week due to 'furlough fridays'."
Mine eyes shall see the glory! | causes.com
Aloha to all! This is my very first attempt at actual blogging. Previous notes on fb and Myspace don't really count. This is where I will pour out my feelings, share information, publish personal research, and post prayer requests with regards to Retinal Dystrophy. Why write about such a rare, incurable, degenerative disease? My 11 year old son Gabriel was recently diagnosed. This has been a life changing, faith testing revelation. He is a courageous boy, and we are going to get through this together, no matter what the outcome. This first post is an overview of Cone-Rod Retinal Dystrophy.
Cone-Rod Retinal Dystrophy
What is Cone-Rod Retinal Dystrophy?
Cone-rod retinal dystrophy (CRD) characteristically leads to early impairment of vision.
What are the symptoms?
An initial loss of colour vision and of visual acuity is followed by nyctalopia (night blindness) and loss of peripheral visual fields. In extreme cases, these progressive symptoms are accompanied by widespread, advancing retinal pigmentation and chorioretinal atrophy of the central and peripheral retina.
The onset of decreased central vision with concurrent progressive constriction of peripheral visual fields occurs prior to age 10. Unlike other cone dystrophies, there is an inexorable progression to no light perception.
Evans et al. (1995) reported on the clinical features of 34 affected members in 4 generations. Loss of visual acuity occurred in the first decade of life, onset of night blindness occurred after 20 years of age, and little visual function remained after the age of 50 years. Central and, later, peripheral retinal fundus changes were associated with central scotoma, pseudoaltitudinal field defects, and finally, global loss of function. Psychophysical and electrophysiologic testing before the age of 26 years showed more marked loss of cone than of rod function.
When is it transmitted?
Typically, Cone-Rod Retinal Dystrophy is diagnosed following a loss of visual acuity and progressive constriction of peripheral vision before the age of 10."
Cone-Rod Retinal Dystrophy
What is Cone-Rod Retinal Dystrophy?
Cone-rod retinal dystrophy (CRD) characteristically leads to early impairment of vision.
What are the symptoms?
An initial loss of colour vision and of visual acuity is followed by nyctalopia (night blindness) and loss of peripheral visual fields. In extreme cases, these progressive symptoms are accompanied by widespread, advancing retinal pigmentation and chorioretinal atrophy of the central and peripheral retina.
The onset of decreased central vision with concurrent progressive constriction of peripheral visual fields occurs prior to age 10. Unlike other cone dystrophies, there is an inexorable progression to no light perception.
Evans et al. (1995) reported on the clinical features of 34 affected members in 4 generations. Loss of visual acuity occurred in the first decade of life, onset of night blindness occurred after 20 years of age, and little visual function remained after the age of 50 years. Central and, later, peripheral retinal fundus changes were associated with central scotoma, pseudoaltitudinal field defects, and finally, global loss of function. Psychophysical and electrophysiologic testing before the age of 26 years showed more marked loss of cone than of rod function.
When is it transmitted?
Typically, Cone-Rod Retinal Dystrophy is diagnosed following a loss of visual acuity and progressive constriction of peripheral vision before the age of 10."
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