ERG, Braille Instititute and a little psychology

I hope to be able to post one blog a day, as each day has brings new ideas, findings and information. Life has been so crazy with the board for Little League, that once the league has officially started, I hope I will have more time to dedicate and document. I don't want information to leave me, and make sure I post it, not only for you, but for me and mostly Gavin. (I have officially probably jinxed myself saying it should die down once the season starts). It's ok, it's fun and I am learning a lot.

Onto business. Gavin is having his surgery on Wednesday (March 4th) at Children's Hospital. The ERG will be performed. It's actually a 'procedure', but it's done in the operating room, with anesthesia, breathing tube, the whole deal. For all intents and purposes, CHLA calls it surgery - it's just not evasive, no cutting. I will try to sum up what will take place that day...

Basically what I got from Dr. Lee, the electroretinogram will allow him to get some more information with what is really going on with the retina. The light sensitive cells of the rods and cones of the eyes will be examined. An electrode will be placed on his cornea to measure electrical responses to light of the cells that sense light in the retina at the back of the eye (the rods and cones). He will also undergo a light stimulus test, and will be recorded by the way his brain interprets/sees the light via electrodes. Dr. Lee will be able to tell us exactly what he can or cannot see, which will be a tremendous help for us in trying to communicate with him (visually). All the information we will get regarding the severity of his condition, will basically be via electrodes, and brain activity to the retina and light stiumulus test. He will also be able to look deeper into the lesions on the retina with all their fancy camera equipment. Dye will also be injected to look at the vessels, etc. (yuck).

This procedure is approximately 2 hours and will be done by Dr. Lee and an entire staff of doctors. I know he is in good hands. Once Gavin is in recovery, and stable, Troy and I will be able to see him. After we are with him for a little bit, Dr. Lee will call us in and speak to us and inform us of all of his findings. I am so glad we do not have to wait for the results. We will leave the hospital with a MUCH better understanding of his condition, and will be another new starting point for us. I am looking forward to that conversation, even if it's not good news. I will be able to understand my son more, and become one with his condition.

As if the apprehension and anxiety isn't enough for the actual procedure, I am probably even more concerned about the day before. My poor child cannot have a bottle for 12-15 hours! Any of you that know Gavin, knows he is on his schedule and he can clear a room with his screams for his bottle if he is hungry (and we are talking this 4 month old can guzzle down 6-8 ounces in a matter of minutes every 3-4 hours). Somebody please bring me some earplugs, a bottle of wine and some "I'm-sorry-for-keeping-you-up-all-night" flowers for my neighbors - I greatly appreciate it. I have no idea how I am going to get through the hours leading up to Wednesday. He LOVES feeding time (what child doesn't)... I just hope I have the strength to get through that day knowing he is hungry, and looking at him and not being able to let him know he can't eat. My poor baby. My heart goes out to all parents who have had their children undergo procedures, and have been where I will be.

I also got in touch with the Braille Institute of LA. I signed up Gavin for their children's services. It's a home-based early intervention service designed to educate families on caring for and raising children who are blind and visually impaired. They also work with the doctors and educators to respond to the needs of the child/baby. They will concentrate on Gavin's development of motor skills, socialization, cognition and language. I am grateful this program even exists! I cannot believe it is something we will be getting here at home, and will not need to travel 3 times a week to LA to have done. The home-based teacher will not only concentrate on "play" with Gavin, but also teach me how to teach him. I am fascinated and anxious to begin this, I wish this started yesterday. We are just waiting for someone to come out and assess him, and then we can begin. I cannot wait.

In addition, Dr. Lee also put us in touch with a child psychologist. This particular psychologist, Dr. Nancy Mansfield, concentrates on families whose children will be affected with vision loss. She works in conjunction with CHLA Vision Center. You can read about her here. We will be meeting with her in 2 weeks. She and I had a session over the phone. At the end of our conversation, she said she was 'anxious to meet me' as I sounded "too good". Hmmm, I don't think that is a good thing. She caught me at a good time, and not in one of my moments, so maybe I gave her a false Pollyannish version of myself. I am optimistic, but I am also deeply saddened at the same time, I'm sure she will probe deeper. I am looking forward to it actually. She sounds like an excellent advocate for us, as well as had a wealth of information. What I took away from the conversation was, to not overlook your instincts - more importantly your parental instincts. We do have them for a reason, and don't try to justify them. They are there, and should be there, and we need to listen.

That sums up the past few days. I am looking forward to some new findings in the next few weeks, as knowledge is power. I want to have the upperhand in his condition, not only for myself, but so I can help and teach my family who is so anxious to be there right beside us. I would be lost without them. You each know who you are, and we are a family because of you individually and collectively. We love you so much, and Gavin is one lucky kid.

I ask for your prayers as he undergoes this procedure. I will be a bucket of nerves, rightfully so, but I am also wanting it to just be done, so we can learn. I appreciate all your comments and emails I have received. You help inspire me, and am glad you are here with us.