Monday, April 13, 2009


Our to do list for this week:

- Contacted the Braille Institute again, hopefully Gavin can soon be assessed so we can start getting some home visits to help his development.

- Contacted Johns Hopkins, Univ of Iowa and Univ of San Diego. I am hoping to get some information to submit our blood work to get the gene identified, as well as speak to the Doctors about the option of gene therapy. Of course this is all down the line, but no better time to start, than now. The paperword for this submittal I have read can be down right excruciating!

- Contacted the Center for Partially Sighted. They will also assist us with helping Gavin. They have specially programs designed just for infants. I am also anxious to speak to them.

- Gavin is very light-sensitive (photophobic). This is a symptom of his particular vision loss. With summer fast approaching, we are going to get him fitted for some baby sunglasses. I am hoping to do that this week as well at the Child Vision in Brea.

- With that being said, he constantly rubs his eyes. I mean CONSTANTLY. We were instructed to get him to not do this. It has been extremely difficult. It is like putting a bottle to his mouth, and telling him to not suck on it. I don't know how to get through this, but one day at a time. I am hoping he can also get some regular glasses (clear lens) for indoors without a prescription, to try to get him to not rub as much. This is called oculo-digital reflex. This can lead to sunken eyes, which Gavin is already getting.

- Phone call placed and letter is being requested from the last Dr. we saw and hopefully he can send the insurance the letter to encourage them to have us see Dr. Lee.

- I spoke to Gavin's pediatrician last week to get him on antioxidant supplements. Gavin is his first patient with severe visual impairment, so his pediatrician is speaking to the specialist to gather some more information. Hopefully he can get on this vitamin therapy soon.

- I registered us for the "Families Connecting with Families International Conference", which will be held July 17-19. I am looking forward to this, I am sure it will be another information overload weekend, but a learning experience nonetheless.

- I am ready to battle the insurance. The wait is long enough, and at wits end. Time is passing, and we have our hands tied until the ERG is done. I don't want it done anywhere else BUT Children's Hospital LA with Dr. Lee. Wish us luck with this one, the boxing gloves are on. I have agreed with my husband to wait until the letter is submitted, which I am complying to. If we don't have an approval within their 7-10 days, game on. I'm done waiting. Battle will begin.

- I think I need another visit to the Child Psychologist. I have some more questions since we last visited, and she provides some clarity. I am setting another appointment to see her.

- I am gathering the material to start on Gavin's activity blanket, complete with different patterns and textures to stimulate the senses. We are also working on his tiles, I will post more about this when they're complete. I'm hoping the blanket comes out good, and possibly thinking of selling them and having proceeds going toward the Foundation for Fighting Blindness.

... Wish us luck for a very busy, but hopefully productive week in the direction of moving forward to the next steps in all areas of what we are trying to accomplish.

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