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Tuesday, January 19, 2010

A Night without Light dinner

Last year, as most of you know, we formed the team Gavin's Groupies for the Foundation Fighting Blindness. We joined VisionWalk, and raised close to $9,000.00. Since then we have done a golf tournament, Chili Cook off, a 5k run/walk and other events to raise awareness.

Last year, for everyone who donated towards Gavin's Groupies, they received a dozen homemade cookies from Gavin's grandma. This year, I wanted to raise the bar. I am SO extremely excited to bring this experience to all of you.

Troy and I were invited to a dinner in the dark, through the FFB. This was pretty soon after getting the confirmation of Gavin's condition being a fairly serious condition. It was a very emotional time for us. We sat in a huge ballroom, the lights shut off, and we ate our dinner. It was an experience like no other. I sat in my seat and I cried, and cried .....and cried. Troy held my hand, and I was able to compose myself and finish my dinner. To say it was humbling, is an understatement.

I want you to experience this. We have come up with a fascinating idea, and you will be able to participate in this with your donation towards Gavin's Groupies. If you donate at least $20 towards Gavin's Groupies, for this years VisionWalk 2010, you can reserve a seat and enjoy our own family's version of "A Night without Light". This will take place in Chino Hills, at my grandparents beautiful home. Seats are limited, and we are taking a first come, first serve basis.

For more information, please click here.

I believe by taking part in this, will not only raise awareness, but also compassion. You will get to experience what my little Gavin's world is like. Gavin, and many others live in our dominantly sighted-world. I hope you joing us for an hour, and experience their world. I would love to have all of you attend, and walk away with an experience you will not only remember, but hopefully with an everlasting memory of those who live a different world than we do.

Please contact me if you have any questions. Hope you can join us.

*This is put on by my family members. We have organized, and will be your hosts, servers, bartenders, cooks and busboys ;)

Saturday, January 16, 2010

...and so we wait

The beginning of December we finally were given a date where we could have Gavin's blood drawn at CHLA. Luckily, Dr. Lee's wonderful nurse was able to have all the appropriate paperwork already printed up, so it was as easy as a blood draw and signatures. We are having his blood work submitted to the Carver Lab in Iowa. This is such a long waiting game. It will take approximately 7-9 months for the first phase of testing and then another 4-5 for the second Phase (mind you the cost is roughly $1,500.00 - but I will keep that rant for another time *smile*). At that time, they will probably need other family members blood work as well.

I pray and I pray and I pray to have somewhat of an answer by July. I would like to go the LCA Convention in Philadelphia in July with at least a name of a mutation gene (or identifier). I would like his gene to be indentified, so I can focus on the appropriate segments related to his mutation and talk to the researchers about the latest developments in the arena of gene-therapy with that specific gene. I sent an email to the Carver Lab, with hopes there is something that can be done to expedite this. The convention happens every 2 years, and I would hate to miss going this year with no idea of a mutation gene by a few months. grrr.

As a parent, this is the last final piece of the puzzle we have been trying to put together the past year. It may not change what we can do for him now, but it will complete the picture of what he has, although we know the consequence of it. Not only that, but I can be better informed of research that is going on today, specific to that gene. Most of the time I drive myself crazy trying to keep in mind all of the latest and greatest in the arena of gene therapy. This will be a long wait for us, the next 7-9 months, but we have valued the word patience this past year, far more than what we had before.

.... and so we wait.

Friday, January 15, 2010

Gavin update

Ok, so it's been a while. I have not done any updates on Gavin, so I wanted to share with you the latest and greatest with him.

He is now 15 months and is as stubborn as his older brother! He has made so many improvements. Visually Impaired babies are typicall delayed with gross motor development. He is not walking or crawling YET - but he is on his way. He is standing well on his own, and is crusing when in his crib. I honestly don't think he will crawl, and will just walk, but his physical therapist is still trying to get him to crawl, and I'm so proud of him. He works so hard when he's with her, even though he is fighting her the entire time!

His vocabulary is astonishing! Not only does he repeat every single word you say, it is pretty clear. He can recite about 10 animal noises, ex: What does the cow say? etc. When he hears the door, he says "bye bye", and so on. So many things are clicking in his head, and it's such a different view to see how his little mind is operating based solely on sound, feeling, etc...

Speaking of sound, I have never seen a baby/child react to music, song or melody like he does. If he needs to be soothed, and in a complete moment of a dire fit, all you have to do is start humming or singing. It is dead silence at the drop of a hat. He has his own MP3 player, in a hard case that he can hold, and it is an extension of his body pretty much. I try not to let it drown out the everyday noises in the house, because that is how he learns and takes in everything, but for the most part, a huge part of the day music is involved. He loves to sing, and will sing word for word the song "How to save a Life" by The Fray for about 45 second intervals. To say he loves that song is an understatement.

He still gets regular visits from his Early Intervention teacher, Occupational Therapist, Physical Therapist, Vision Impairment teacher and soon his O&M Specialist (Orientation and Mobility). They do home visits, and I'm so proud of him. They often expose him to new experiences, and he responds fairly well to them. They work with him for about 45 min to an hour at a time depending on how the session is going. Some weeks are harder than others for him.

The eye pressing is still the most challenging, and remains unchanged. He does it quite a bit, even still. I know this will be a constant challenge. He likes to rip his poopy diaper off during nap time and play with it in his crib (yeah, this is a fun one). He is so darn sneaky with it too, he does it so quietly. I know instantly when I open his door and get that gut-wrenching whiff, was has taken place besides sleeping. UGH!

I need to upload some pics, and once I get my pictures transfered, I will do some photo updates from the past few months. My laptop is still getting fixed, so please still bare with me with the layout of the blog, and lack of photos.

Thursday, January 14, 2010

Johnny DeFacto

My cousin Brian, (well, he is married to my cousin Joanna), shared with me a very ironic story. Brian, who is a remarkable musician, was listening to some random songs on his iPod, and was triggered. He had remembered a few years back, he had written a song titled "Johnny DeFacto". The song is about if he ever had a son, who was blind.

How ironic, that a few years later, he would be marrying into a family who carries a gene for blindness - and even more ironic, a baby being born into this family would be in fact blind. It is almost like a foreshadowing of events, and I had goosebumps reading the lyrics. I want to share what he wrote to me, and his take on the song, then I will share the lyrics below.

"I am sure you get the message of the song... I used the term "de facto" which means to be segregated by fact rather than by law. Like seperate schools and facilities for those who are challenged or by race, etc. Things that are out there as a matter of fact, instead of legally. I was pretty much saying that he is segregated because of his blindness, but it doesn't have to be that way. And at the end of the song my son teaches me to become deaf to the stuff that we are exposed to everyday from people all around us. "

Johnny DeFacto

verse 1:

the face of deceit is invisible to you
you're innocent and pure, like contrasting whites
so dry those tears from your eyes
and stay close to me, your light
and i'll shine just for you
and i'll paint your pictures

chorus:

don't worry my son
i will be everything that you will need to see
you're safe from illusions that this ugly world can generate on thee

you're hardly left out, so don't count yourself out
i'm guiding your sight by hand
de facto segregated

verse 2:

the warmth from your soul is like therapy
i wash my skin clean of hostility
but hate is still dominiating
it spills from tv
your palms, they cup over my ears
and now you're teaching me


The magnitude of what he has portrayed in these lyrics, from a parent of a child who is blind is beyond what I could ever imagine it to be before I had him. Its incredible he has captured it! Some days, I just hold Gavin and tell him that I will keep him safe from the ugliness of the world, and be the light leading his way, and he will learn that is the only sight he will ever need. I am amazed Brian has summed up my feelings, as well as Troy's. I think it's wonderful to have this in a song, and can't wait to hear it, and can't wait for Gavin to hear it, and understand one day in song how we feel.

Thank you Brian, you are a special person in our family, and am grateful for you! Love you lots....