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.
Thursday, February 26, 2009
Friday, February 20, 2009
Stop, and feel the roses
So many things are taken for granted. I am at fault with this as well. I take many, many things for granted. I appreciate what I do have, I try to really understand I am lucky, but I know I have many things I do not appreciate in my life like I really should.
I had both kids in the car with me, and we were on our way back from picking up a prescription at Walgreens in Chino. We were stopped at the Central/Philadelphia intersection. I was the first car at the red light. Those of you familiar with the Chino area, know this is a pretty busy intersection, a major light intersection. Something caught the corner of my eye to the right. I take a glance and see a blind gentlemen. What caught my eye was the glare off of his walking stick, it was metal. I am saying he was blind, only because I am making that assumption due to the fact that he was looking up in the air, away from the ground.
Sitting at the light, I was hoping it would stay red longer. I wanted to see him move, and watch him walk, and see how his other senses picked up his surroundings. I am so intrigued by this now. He walked right up to the traffic light pole and pushed the button to cross the street. I don't know how he knew it was time for him to cross, maybe because he heard and felt the cars move alongside him. He began to cross Central Ave. As he made it to the curb, I thought, "How does he know he is walking straight?" How did he not end up in the middle of the intersection?
He then proceeded to cross Philadelphia Ave, in the same manner. He walked perfectly centered in the crosswalk. He made his way up the curb, and on he went and made himself comfy on the bus bench, folded his walking stick, grabbed his iPod out of his backpack and grinned from ear to ear as the sun shined on his face and tears began to run from mine. I thought, "Gavin is going to be just fine." Although I know this deep in my heart, to have it validated by seeing a vision impaired young man right in front of me cross a major intersection was huge. This man was independent, he had a destination, or was coming from somewhere. I wanted to talk to him so badly. Did he work? What did he do?
What could he say to me, a new mom walking a very new unpaved road in my life? A road so unfamiliar to me that I didn't know of any other mothers who have been down this similar road. I'm not afraid of the road, I respect the road. It's new, it's challenging. I want to walk this road before Gavin does. I want to move the rocks so he doesn't trip. I want to move the brush away, so he doesn't have to slow down. This young man, walked the intersection with more confidence than I would have. I understood it is up to me and Troy to not allow rocks, shrubbery or unpaved roads to stop my son. We will show him, he is able to do everything! It will be done differently, but not effortlessly. He will show me what it feels like to have the rocks be under my feet, and the shrubbery rub against my shoulder, because until now, I have just stepped over the rocks and moved out of the way of the shrubs. They were in a sense, a menace. My focus was getting down the road to my destination, quickly and as short as possible. Such is life! I do not relish in the feeling and the surrounding sounds. I don't stop to really smell the roses. I like to say I do, but do I really? I am the type that takes on a lot. I like to stay busy. I enjoy it. My new focus now is allowing myself to just be, I am seeing things already in a different light, and its a beautiful world out there!
Walk outside and close your eyes. Not just for a few seconds, really sit oustide for a few minutes. Don't just feel the breeze, smell it. Don't just smell the flowers, feel them. I have been trying to understand the world as my son will be experiencing it and is experiencing it. Life is very loud! We have turned down our voices a lot in this house, even sometimes our laughter is too loud for Gavin. A loud outburst sometimes scares him, as do many babies, but I think especially to him since he can't see the smile behind the noise.
Life is also very beautiful. Be thankful you get to exprience it with your eyes, your skin, your ears. I am so lucky my senses are all intact. I am even luckier to understand that I am lucky. I do not take this for granted. I am experiencing my surroundings in a different way so I can begin to understand my son and relate to him in his world. His world is a beautiful thing. Although he may not be able to see it very well, it is just as exciting to him to feel it. His eyes light up when I touch his face, he smiles back at me with reassurance he is loved. He sees my face through having his hands feel it, he feels me next to him, and I am starting to understand touch in a very different way.
I am so grateful for my health, but I am even more thankful for my son. Gavin has shown me just in this short time here with us so far, so much more about life, and so much less about vision. His world is just as it should be, to him. To him, he doesn't know what he is missing. In turn, he is helping me to feel things about our world, and about life in a way maybe I have been missing. Going too fast, overlooking the world beside me and under my feet. We are on a new road as a family. I want him to one day walk with confidence, his head held high, and take on that intersection. We will all be walking that road with him, and I am so glad he will show me about this whole other world out there besides the eye candy stuff. I am so grateful, I, in turn can show Landon and help to experience life outside of sight. It will be challenging. It will be difficult, but our road has just begun. I look forward to the rocks, the shrubbery as well as the flowers and sounds of fluttering wings of birds along the way.
The menacing road blocks will be seen in a different light on our road, a road I know I am very luck to see. I do know, however, I am even luckier we have a son that will show us there is more to the road than seeing where it ends.
I had both kids in the car with me, and we were on our way back from picking up a prescription at Walgreens in Chino. We were stopped at the Central/Philadelphia intersection. I was the first car at the red light. Those of you familiar with the Chino area, know this is a pretty busy intersection, a major light intersection. Something caught the corner of my eye to the right. I take a glance and see a blind gentlemen. What caught my eye was the glare off of his walking stick, it was metal. I am saying he was blind, only because I am making that assumption due to the fact that he was looking up in the air, away from the ground.
Sitting at the light, I was hoping it would stay red longer. I wanted to see him move, and watch him walk, and see how his other senses picked up his surroundings. I am so intrigued by this now. He walked right up to the traffic light pole and pushed the button to cross the street. I don't know how he knew it was time for him to cross, maybe because he heard and felt the cars move alongside him. He began to cross Central Ave. As he made it to the curb, I thought, "How does he know he is walking straight?" How did he not end up in the middle of the intersection?
He then proceeded to cross Philadelphia Ave, in the same manner. He walked perfectly centered in the crosswalk. He made his way up the curb, and on he went and made himself comfy on the bus bench, folded his walking stick, grabbed his iPod out of his backpack and grinned from ear to ear as the sun shined on his face and tears began to run from mine. I thought, "Gavin is going to be just fine." Although I know this deep in my heart, to have it validated by seeing a vision impaired young man right in front of me cross a major intersection was huge. This man was independent, he had a destination, or was coming from somewhere. I wanted to talk to him so badly. Did he work? What did he do?
What could he say to me, a new mom walking a very new unpaved road in my life? A road so unfamiliar to me that I didn't know of any other mothers who have been down this similar road. I'm not afraid of the road, I respect the road. It's new, it's challenging. I want to walk this road before Gavin does. I want to move the rocks so he doesn't trip. I want to move the brush away, so he doesn't have to slow down. This young man, walked the intersection with more confidence than I would have. I understood it is up to me and Troy to not allow rocks, shrubbery or unpaved roads to stop my son. We will show him, he is able to do everything! It will be done differently, but not effortlessly. He will show me what it feels like to have the rocks be under my feet, and the shrubbery rub against my shoulder, because until now, I have just stepped over the rocks and moved out of the way of the shrubs. They were in a sense, a menace. My focus was getting down the road to my destination, quickly and as short as possible. Such is life! I do not relish in the feeling and the surrounding sounds. I don't stop to really smell the roses. I like to say I do, but do I really? I am the type that takes on a lot. I like to stay busy. I enjoy it. My new focus now is allowing myself to just be, I am seeing things already in a different light, and its a beautiful world out there!
Walk outside and close your eyes. Not just for a few seconds, really sit oustide for a few minutes. Don't just feel the breeze, smell it. Don't just smell the flowers, feel them. I have been trying to understand the world as my son will be experiencing it and is experiencing it. Life is very loud! We have turned down our voices a lot in this house, even sometimes our laughter is too loud for Gavin. A loud outburst sometimes scares him, as do many babies, but I think especially to him since he can't see the smile behind the noise.
Life is also very beautiful. Be thankful you get to exprience it with your eyes, your skin, your ears. I am so lucky my senses are all intact. I am even luckier to understand that I am lucky. I do not take this for granted. I am experiencing my surroundings in a different way so I can begin to understand my son and relate to him in his world. His world is a beautiful thing. Although he may not be able to see it very well, it is just as exciting to him to feel it. His eyes light up when I touch his face, he smiles back at me with reassurance he is loved. He sees my face through having his hands feel it, he feels me next to him, and I am starting to understand touch in a very different way.
I am so grateful for my health, but I am even more thankful for my son. Gavin has shown me just in this short time here with us so far, so much more about life, and so much less about vision. His world is just as it should be, to him. To him, he doesn't know what he is missing. In turn, he is helping me to feel things about our world, and about life in a way maybe I have been missing. Going too fast, overlooking the world beside me and under my feet. We are on a new road as a family. I want him to one day walk with confidence, his head held high, and take on that intersection. We will all be walking that road with him, and I am so glad he will show me about this whole other world out there besides the eye candy stuff. I am so grateful, I, in turn can show Landon and help to experience life outside of sight. It will be challenging. It will be difficult, but our road has just begun. I look forward to the rocks, the shrubbery as well as the flowers and sounds of fluttering wings of birds along the way.
The menacing road blocks will be seen in a different light on our road, a road I know I am very luck to see. I do know, however, I am even luckier we have a son that will show us there is more to the road than seeing where it ends.
Tuesday, February 17, 2009
Flyer
Update for all friends and family who have asked if I have a flyer. I am in the middle of creating one (finally). If you would like a flyer to print and distribute, please email me.
jstevens04@gmail.com
Thanks!
jstevens04@gmail.com
Thanks!
Monday, February 16, 2009
Gavin's Grandma's Cookies!
All donations (and those who have already donated) to Gavin's Groupies prior to Friday, March 13th - will receive a very special thank you gift courtesy of Gavin's Grandma. This gift is a dozen of her famous homemade soft molasses cookies. These cookies (and their secret recipe) has been in our family for over 55 years!
If you donate, and live within a 25 mile radius of the city of Chino Hills, they will be hand delivered by a family member of Gavin. If you live outside of the 25 mile radius, your cookies will be shipped. The delivery of these cookies, is dependent upon the demand. We will try to get the orders delivered the week of March 16th.
You can donate online here, or send a check (email me and I will give you the info). Also, if you would like to give us cash or a check when the cookies are delivered, please email me. 100% of all money collected, will go towards VisionWalk (Foundation for Fighting Blindness) to help us find a cure/treatment for Gavin and many others affected by vision loss.
Please continue to spread the word. We are very determined, and glad you are with us on our journey. Please make even the smallest donation! You will ALL receive a gift!
Please note: These cookies have been personally requested by family and friends for special occasions (showers, holidays, etc.) for quite some time. You will now get to taste what our family has been enjoying for many, many years!
The previous post on Gavin's Groupies is here and my email address is jstevens04@gmail.com.
Thank you!
If you donate, and live within a 25 mile radius of the city of Chino Hills, they will be hand delivered by a family member of Gavin. If you live outside of the 25 mile radius, your cookies will be shipped. The delivery of these cookies, is dependent upon the demand. We will try to get the orders delivered the week of March 16th.
You can donate online here, or send a check (email me and I will give you the info). Also, if you would like to give us cash or a check when the cookies are delivered, please email me. 100% of all money collected, will go towards VisionWalk (Foundation for Fighting Blindness) to help us find a cure/treatment for Gavin and many others affected by vision loss.
Please continue to spread the word. We are very determined, and glad you are with us on our journey. Please make even the smallest donation! You will ALL receive a gift!
Please note: These cookies have been personally requested by family and friends for special occasions (showers, holidays, etc.) for quite some time. You will now get to taste what our family has been enjoying for many, many years!
The previous post on Gavin's Groupies is here and my email address is jstevens04@gmail.com.
Thank you!
Saturday, February 14, 2009
Almost halfway there!
We have already raised $520.00 in less than a week (4 days to be exact) for Gavin's Groupies!
I am so moved by the compassion and support from family, friends, people I have not seen in years, people who have not had the pleasure of meeting my son, and complete strangers. This has been nothing short of a roller-coaster ride the past 2 weeks.
There are so many clinical trials for vision loss happening right now, but there are even more which are waiting for funding. To know that by the kind hearted people who have donated, you are part of the cause for getting us closer to the research that will provide preventions, treatments and cures for people affected by the full spectrum of retinal diseases.
Even if during Gavin's lifetime, we don't have a cure or treatment for him - I am so honored to be a part of this. I will continue to push forward for my son, my grandchildren, and all those in my family in generations to come. Since this is a hereditary gene somewhere in our family, the chance of this occuring again, is quite possible.
Thank you again, to everybody for your support and compassion and above all, interest. I possibly have a few other fundraising ideas for Gavin's Groupies. I will share later, once I have some concreate plans. Also, for those of you, who would like to just bring a donation to the walk, we will have a donation can. Drop in a dollar, whatever you like. Every dollar helps!
A very special thank you, to those who have donated. A very very special thank you to those who are helping me drive this fundraiser by asking your family and friends, people I don't even know. I am truly moved. I am seeing the donations come in, and the names associated to many of those donations do not ring a bell. I am humbled by the big hearts and generosity, especially during these rough economic times. Please hug these people for me!
Thank you again, and just take a stroll with us on June 7th at Cal State Fullerton campus! Gavin would love to meet you, and I would love to hug everyone who is supporting us during this difficult, but inspiring time.
PS. I want to exceed my goal, just so you know. ;) We will.
Thursday, February 12, 2009
Tips on Encountering a Dog Guide Team
I was on the Junior Blind website doing some research, and came across some interesting information about dog guides (new term is dog guides, not guide dogs). It seems I always run into the same dog guide and woman at Target. I never know what to do, so I do nothing and steer out of their way. Some tidbits in case you come across one as well...
The dog guide should never be distracted from his or her duty.
Always ask if you may pet the dog guide. Often, people want to introduce their dogs when it is an appropriate time.
Do not feed or entice a dog guide, because the dog's primary responsibility is to its partner. It is important that the dog not become distracted. The dogs are fed on a regular schedule and follow a specific diet in order to keep them in excellent condition. The slightest deviations from their routine can disrupt their regular eating and relieving schedules, which can inconvenience their handlers. Dog guides are trained to resist offers of food so that they will be able to visit restaurants without begging. If you feed treats to a dog guide, this weakens the training.
If you call to a dog guide or obstruct its path, this can be dangerous for the team and it can break the dog's concentration.
If you see a dog guide team waiting to cross a street, please do not honk or shout from your car to signal when it is safe to cross. This can be distracting and confusing.
Dog guides have fun too! When they are not in their harness, they can be treated as pets.
In certain situations, a dog guide may not be appropriate. The handler may prefer to take your arm just above the elbow and allow the dog to heel. Others may prefer to have their dog follow you. Please talk to the handler and not the dog when giving directions for turns.
Dog guides will make mistakes from time to time and must be corrected in order to maintain training. This correction usually involves a verbal admonishment coupled with a leash correction.
Dog guide handlers have been taught the appropriate correction methods to use with their dogs.
The Americans with Disabilities Act and state laws permit dog guides to accompany their handlers anywhere that the general public is allowed, including taxis, buses, restaurants, theaters, stores, hotels, apartments, and office buildings.
* The new terminology is dog guides - not guide dogs.
What To Do When You Meet a Working Dog Guide* Team
The dog guide should never be distracted from his or her duty.
Always ask if you may pet the dog guide. Often, people want to introduce their dogs when it is an appropriate time.
Do not feed or entice a dog guide, because the dog's primary responsibility is to its partner. It is important that the dog not become distracted. The dogs are fed on a regular schedule and follow a specific diet in order to keep them in excellent condition. The slightest deviations from their routine can disrupt their regular eating and relieving schedules, which can inconvenience their handlers. Dog guides are trained to resist offers of food so that they will be able to visit restaurants without begging. If you feed treats to a dog guide, this weakens the training.
If you call to a dog guide or obstruct its path, this can be dangerous for the team and it can break the dog's concentration.
If you see a dog guide team waiting to cross a street, please do not honk or shout from your car to signal when it is safe to cross. This can be distracting and confusing.
Dog guides have fun too! When they are not in their harness, they can be treated as pets.
In certain situations, a dog guide may not be appropriate. The handler may prefer to take your arm just above the elbow and allow the dog to heel. Others may prefer to have their dog follow you. Please talk to the handler and not the dog when giving directions for turns.
Dog guides will make mistakes from time to time and must be corrected in order to maintain training. This correction usually involves a verbal admonishment coupled with a leash correction.
Dog guide handlers have been taught the appropriate correction methods to use with their dogs.
The Americans with Disabilities Act and state laws permit dog guides to accompany their handlers anywhere that the general public is allowed, including taxis, buses, restaurants, theaters, stores, hotels, apartments, and office buildings.
* The new terminology is dog guides - not guide dogs.
My Holland
When we first received the news about Gavin, I had a few people reach out to me with a very inspirational essay written by Emily Perl Kingsley (a dear friend of my husband's even left it for me as a comment on a previous post). This particular essay has been reprinted in several different languages, for print all around the world. Thank you to everyone who suggested this to me. I have a hard copy in my ever-expanding folder with all of Gavin's medical papers that I take everywhere with me. I typically read it once a day. It's good for the soul, and I think we will all get a good appreciation of our expectations, and how beautiful life is - just the way it is, as it should be.
It reminds me to not spend too much time mourning what might have been, but as an opportunity for discovering something very different, but also equally wonderful.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
It reminds me to not spend too much time mourning what might have been, but as an opportunity for discovering something very different, but also equally wonderful.
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Tuesday, February 10, 2009
Gavin's Groupies and VisionWalk 2009
I have locally found a fundraising event, that I am sure my family will be part of year after year. This event is called VisionWalk. VisionWalk is the national signature fundraising event of the Foundation Fighting Blindness. The Foundation has funded thousands of research studies at hundreds of prominent institutions worldwide. Currently, the Foundation funds 151 grants at 80 institutions. The Foundation funds leading-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, and pharmaceutical and nutritional therapies.
Since its inception on September 16, 1971, the Foundation has raised more than $350 million.
I completely understand during these hard economic times, it may not be feasible to donate. I did hesitate to reach out and even inform I am doing a fundraiser - because so many are affected by their own individual hardships. I figured, even if $5 dollars is raised, that is 5 dollars more than what the Foundation had.
If you would like to donate, fabulous! If you would like to join my family for this event, even better! It will be on the CSUF campus on Sunday, June 7th at 9am. PLEASE just come out and show your support, it's an easy walk - bring your family, throw the little ones in strollers and be part of something great! I have listed some facts about this Foundation below. My personal page is here. If you would like to walk, please leave a comment or email me (jstevens04@gmail.com). I am in contact with local newspapers, etc. trying to get a press release about this organization and event. I would like us to all be wearing the same color shirts for a possible photo op. :) Yes, our team is called "Gavin's Groupies". Thanks to my hubby. Please be part of Gavin's Groupies, even if we do not personally know you.
Macular degeneration (AMD), has inherited risks, is characterized by a progressive loss of central vision, and is the leading cause of legal blindness in adults over age 55.
RP and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.
Your donation will help support cutting-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, artificial retinal implants, and pharmaceutical and nutritional therapies that will one day put an end to retinal diseases.
With Your Help, A Cure is in Sight!
Since its inception on September 16, 1971, the Foundation has raised more than $350 million.
I completely understand during these hard economic times, it may not be feasible to donate. I did hesitate to reach out and even inform I am doing a fundraiser - because so many are affected by their own individual hardships. I figured, even if $5 dollars is raised, that is 5 dollars more than what the Foundation had.
If you would like to donate, fabulous! If you would like to join my family for this event, even better! It will be on the CSUF campus on Sunday, June 7th at 9am. PLEASE just come out and show your support, it's an easy walk - bring your family, throw the little ones in strollers and be part of something great! I have listed some facts about this Foundation below. My personal page is here. If you would like to walk, please leave a comment or email me (jstevens04@gmail.com). I am in contact with local newspapers, etc. trying to get a press release about this organization and event. I would like us to all be wearing the same color shirts for a possible photo op. :) Yes, our team is called "Gavin's Groupies". Thanks to my hubby. Please be part of Gavin's Groupies, even if we do not personally know you.
Did you know that...
Over ten million Americans of every age and race suffer vision loss from blinding diseases such as macular degeneration, retinitis pigmentosa, stargardt disease and Usher syndrome.
Macular degeneration (AMD), has inherited risks, is characterized by a progressive loss of central vision, and is the leading cause of legal blindness in adults over age 55.
RP and Usher syndrome are inherited diseases commonly diagnosed during childhood or young adulthood. RP causes severe vision loss leading to legal and/or complete blindness. Children with Usher syndrome are born with varying degrees of deafness and later develop RP.
Your donation will help support cutting-edge research in promising areas such as genetics, gene therapy, retinal cell transplantation, artificial retinal implants, and pharmaceutical and nutritional therapies that will one day put an end to retinal diseases.
With Your Help, A Cure is in Sight!
Sunday, February 8, 2009
Dr. Lee and CHLA
This past Friday, Troy, Gavin and I hit the road at 5:30am for Children's Hospital. We had the 8am appointment with Dr. Lee. It was a wet, rainy morning. A little ironic, because when we left the appointment a few hours later, I had a sense of hope and things seemed brighter. The anxiety I have been experiencing is a little new to me. I have never felt this gut-wrenching feeling in the pit of my stomach before. It was prevalent that morning, when Troy pulled up to the big underground parking structure, I had to jump out of the car - I was sick to my stomach.
I know I am going to be learning so much about myself, my family and life in general. This 4 month old little boy is posing to already be a sense of my inspiration. Just walking into Children's Hospital, and seeing these cancer stricken little children, makes what we are facing a little more manageable. Children walking the lobby with their exhausting, tired-eyed parents holding their vomit bowls - made me feel like we did not belong there. These parents are fighting for their son/daughter's lives, and we are fighting for our child's vision. I felt like I wasn't even on the same playing field as the other suffering parents. Not that my son's condition is not severe or unimportant - but I don't have a fear of losing him. I have never been in such close proximity to other families who are suffering. It is a very humbling experience. When you think you're having a rough day - go to Children's Hospital and just walk the lobby. You will get back in your car with a different appreciation of your problems.
Sorry for the diversion, I had to get that off my chest.
We were whisked away to our examination room close to 9am. Gavin's eyes were dilated by the very nice nurse Anulao who was very gentle with him. We waited another 30 minutes and Dr. Lee's assistant came in and performed an initial exam. He informed us of the findings. He saw the same thing our first specialist had found earlier that week. Lesions on the retina. He went into detail, asking if we had a cat, if my pregnancy was normal, etc. The question of the cat is due to the suspicion of possible toxoplasmosis. Of course that was my biggest concern. This toxoplasmosis can affect other areas of his body and lead to developmental problems, etc. I had been racking my brain all week wondering if the cause of Gavin's problems was from an infection. Were my baby's eyes healthy and normal at one point, and did something go terribly wrong? Did I have this toxoplasmosis? Do I still have it?
Dr. Lee entered the room, and instantly a calmness came over me. I can't explain why, well, I can explain why - this man is amazing. He has a demeanor to him and a vibe he exudes that is unexplainable. All of this with just a "Hello, nice to meet you, I am Dr. Lee."
He examined Gavin, he spoke to the first doctor/assistant and then began to go into detail to us about the eye on the big 3D eyeball on the wall. He explained the intricacies of the eye, the layers, the vessels and many more complex structures. I am floored by the human body in general, I always have been. To see what exactly has to go right during cell formation for humans to be humans is miraculous. Everything has to be just right for us to talk, see, hear, think. The slightest flaw and speech is impaired, sight is compromised or even non-existent. I am amazed at God's work. It is nothing short of miraculous and I am in awe of how we work and how we are 'put together'. Dr. Lee confirmed these thoughts, as he pointed out every tiny area of the eye and how one structure leads to the next, and one slight misfire - sight is not normal. He explained how Gavin's lesions are affecting his central vision, and that our son would probably never see 20/20. Or whether he would be able to see much of anything, ever. I sensed the urgency in his voice. I also sensed some hope. He never once said he can "cure" him, he never once said our son will see, but my hope was increasing with every minute that passed and with every word that left his lips.
Dr. Lee and his team of doctors are going to perform an Electroretinogram (ERG) on Gavin at 6 months of age. This procedure will take place at CHLA, under general anesthesia. It's about an hour and a half procedure - and will give us some answers to many questions. It will tell us what he can see, it will allow the doctors to examine the actual lesions in much more detail, and see many other things his examination did not show. It will also inform us if Gavin is the candiate, Dr Lee thinks he may be, for his new research clinical study. This particular doctor is well known for his clinical studies in moving forward to finding cures and answers to retinal disorders.
I am hoping Gavin is a candidate for this study. I hope Gavin can be part of the greater picture. Even if this study doesn't help him, but helps just one more family, one baby, I would be so proud. I would know this is our reason. I know Gavin is part of something greater, and something I can't even begin to imagine right now. I may not be ready to understand it quite yet. I do, however, understand this is just how God intended. I am ok with that. I am saddened with the very real hard facts. I do not wish this on anyone. I don't wish 4 months of wonder and concern before the diagnosis on anyone. I can't even begin to imagine what parents go through when their children are faced with life-threatening illnesses. If you were to tell me 10 years ago, I was going to have a son, and that son would have little to no vision, I would have told you, there is no way I can manage that, there is no way I can deal with that. I am surprised with what we are capable of when faced with adversity. To understand it was with us all along, is the ticket to bigger thinking and greater understanding.
Pieces of who I am, as a person, a mother are beginning to slowly be put together. I am looking into trying to find the right resources to begin a non-profit organization that goes towards research. I am extending my heart out to families, whom I don't know, as an advocate. I am trying to find all my DNA books (I have a huge fascination with genetics and always wanted to be a geneticist). My handbook to teaching yourself braille has been ordered. Pieces of who I always knew I was are slowly emerging just in the past week. I have supressed many things because of my lack of knowledge, or where to start. You start by starting. You take the first step towards making things better and worthwhile.
My children are my God send. I will fight tooth and nail for their well-being and Gavin has put his mom on a mission he can't even begin to understand.
I know I am going to be learning so much about myself, my family and life in general. This 4 month old little boy is posing to already be a sense of my inspiration. Just walking into Children's Hospital, and seeing these cancer stricken little children, makes what we are facing a little more manageable. Children walking the lobby with their exhausting, tired-eyed parents holding their vomit bowls - made me feel like we did not belong there. These parents are fighting for their son/daughter's lives, and we are fighting for our child's vision. I felt like I wasn't even on the same playing field as the other suffering parents. Not that my son's condition is not severe or unimportant - but I don't have a fear of losing him. I have never been in such close proximity to other families who are suffering. It is a very humbling experience. When you think you're having a rough day - go to Children's Hospital and just walk the lobby. You will get back in your car with a different appreciation of your problems.
Sorry for the diversion, I had to get that off my chest.
We were whisked away to our examination room close to 9am. Gavin's eyes were dilated by the very nice nurse Anulao who was very gentle with him. We waited another 30 minutes and Dr. Lee's assistant came in and performed an initial exam. He informed us of the findings. He saw the same thing our first specialist had found earlier that week. Lesions on the retina. He went into detail, asking if we had a cat, if my pregnancy was normal, etc. The question of the cat is due to the suspicion of possible toxoplasmosis. Of course that was my biggest concern. This toxoplasmosis can affect other areas of his body and lead to developmental problems, etc. I had been racking my brain all week wondering if the cause of Gavin's problems was from an infection. Were my baby's eyes healthy and normal at one point, and did something go terribly wrong? Did I have this toxoplasmosis? Do I still have it?
Dr. Lee entered the room, and instantly a calmness came over me. I can't explain why, well, I can explain why - this man is amazing. He has a demeanor to him and a vibe he exudes that is unexplainable. All of this with just a "Hello, nice to meet you, I am Dr. Lee."
He examined Gavin, he spoke to the first doctor/assistant and then began to go into detail to us about the eye on the big 3D eyeball on the wall. He explained the intricacies of the eye, the layers, the vessels and many more complex structures. I am floored by the human body in general, I always have been. To see what exactly has to go right during cell formation for humans to be humans is miraculous. Everything has to be just right for us to talk, see, hear, think. The slightest flaw and speech is impaired, sight is compromised or even non-existent. I am amazed at God's work. It is nothing short of miraculous and I am in awe of how we work and how we are 'put together'. Dr. Lee confirmed these thoughts, as he pointed out every tiny area of the eye and how one structure leads to the next, and one slight misfire - sight is not normal. He explained how Gavin's lesions are affecting his central vision, and that our son would probably never see 20/20. Or whether he would be able to see much of anything, ever. I sensed the urgency in his voice. I also sensed some hope. He never once said he can "cure" him, he never once said our son will see, but my hope was increasing with every minute that passed and with every word that left his lips.
Dr. Lee and his team of doctors are going to perform an Electroretinogram (ERG) on Gavin at 6 months of age. This procedure will take place at CHLA, under general anesthesia. It's about an hour and a half procedure - and will give us some answers to many questions. It will tell us what he can see, it will allow the doctors to examine the actual lesions in much more detail, and see many other things his examination did not show. It will also inform us if Gavin is the candiate, Dr Lee thinks he may be, for his new research clinical study. This particular doctor is well known for his clinical studies in moving forward to finding cures and answers to retinal disorders.
I am hoping Gavin is a candidate for this study. I hope Gavin can be part of the greater picture. Even if this study doesn't help him, but helps just one more family, one baby, I would be so proud. I would know this is our reason. I know Gavin is part of something greater, and something I can't even begin to imagine right now. I may not be ready to understand it quite yet. I do, however, understand this is just how God intended. I am ok with that. I am saddened with the very real hard facts. I do not wish this on anyone. I don't wish 4 months of wonder and concern before the diagnosis on anyone. I can't even begin to imagine what parents go through when their children are faced with life-threatening illnesses. If you were to tell me 10 years ago, I was going to have a son, and that son would have little to no vision, I would have told you, there is no way I can manage that, there is no way I can deal with that. I am surprised with what we are capable of when faced with adversity. To understand it was with us all along, is the ticket to bigger thinking and greater understanding.
Pieces of who I am, as a person, a mother are beginning to slowly be put together. I am looking into trying to find the right resources to begin a non-profit organization that goes towards research. I am extending my heart out to families, whom I don't know, as an advocate. I am trying to find all my DNA books (I have a huge fascination with genetics and always wanted to be a geneticist). My handbook to teaching yourself braille has been ordered. Pieces of who I always knew I was are slowly emerging just in the past week. I have supressed many things because of my lack of knowledge, or where to start. You start by starting. You take the first step towards making things better and worthwhile.
My children are my God send. I will fight tooth and nail for their well-being and Gavin has put his mom on a mission he can't even begin to understand.
Confirmation of our worry
The ongoing suspicion something was 'not right' with Gavin and his eyes, like I said were present to me at birth. Troy thought I was crazy, and he chalked it up to the morphine I was on. Gavin's monthly well visits to the pediatrician, didn't pose any initial red flag, as his eyes dilate and react to light. The nystagmus we were noticing, as well as his increased lack of tracking my finger, objects, light, etc. Each week, as newborns eyes are to get stronger and more aware of their surroundings, Gavin's interest in these activities were close to non-existent. I brought it up to his pediatrician, and he wanted to give it to the 4 month mark. I could not wait any longer. I took him back at 3 months, and we saw the Pediatric Opthamologist 2 weeks later, Dr. Shivaram on Feb. 3rd.
Dr. Shivaram confirmed our worry. During our visit with him, we found Gavin has lesions on his retina. These lesions are on the macular area of the eye. The macula, is the centermost part of the eye used for central vision. He also noted a small optic nerve. Since his findings were concentrated on the retina, he referred us to a Pediatric Retina Specialist at UCLA Medical Center. He also wanted Gavin to have blood tests done to rule out the possibility of him coming into contact with an infection, toxoplasmosis to be exact. He also ordered an MRI to see if anything else is going on at the base of the optic nerve and/or brain. This Dr was so sweet, but did not sugar coat anything. He told us straight up, and I could sense in his voice and his face, it was very difficult to give us the devastating news. He kept repeating, how deeply concerned he was for our son. I sensed in his tone, the prognosis did not seem promising. There is no surgery to "remove" these lesions. The lesions are in fact, more like the cells did not develop in that part of the retina, it's almost atrophied.
I could barely drive home from the appointmet. My heart in my stomach, and my son's life was flashing before me. His life, in the sense of wondering what the quality of his life will be, will he ever be independent, etc. That evening, I was lost. Troy and I were both completely lost. I could barely get through the phone call to my mom and dad to give them updates. I felt so empty, alone, and overwhelmed. Where do we start? How do I help him? How can I help him today with his development? The questions were endless, and the worry was growing.
Two days later, we had an appointment with one of the top Pediatric Retina Specialist in the country, Dr. Thomas C. Lee, director of the Retina Institute at Childrens Hospital Los Angeles. How we got into contact with this man, is a story in itself. Troy had shared the news of our son, with the amazing friends at his work, and they all rallied to help and show support for our family. It's amazing how many people are truly concerned and loving towards my son and my husband. I am beside myself to know when Troy walks into his work everyday, he is amongst his second family. It's nice to know you work for a company that instills those family values, and nice to know their support is there for him. I am truly thankful for every one of his coworkers/friends, and am blessed my family is in their company on an everyday basis.
Dr. Shivaram confirmed our worry. During our visit with him, we found Gavin has lesions on his retina. These lesions are on the macular area of the eye. The macula, is the centermost part of the eye used for central vision. He also noted a small optic nerve. Since his findings were concentrated on the retina, he referred us to a Pediatric Retina Specialist at UCLA Medical Center. He also wanted Gavin to have blood tests done to rule out the possibility of him coming into contact with an infection, toxoplasmosis to be exact. He also ordered an MRI to see if anything else is going on at the base of the optic nerve and/or brain. This Dr was so sweet, but did not sugar coat anything. He told us straight up, and I could sense in his voice and his face, it was very difficult to give us the devastating news. He kept repeating, how deeply concerned he was for our son. I sensed in his tone, the prognosis did not seem promising. There is no surgery to "remove" these lesions. The lesions are in fact, more like the cells did not develop in that part of the retina, it's almost atrophied.
I could barely drive home from the appointmet. My heart in my stomach, and my son's life was flashing before me. His life, in the sense of wondering what the quality of his life will be, will he ever be independent, etc. That evening, I was lost. Troy and I were both completely lost. I could barely get through the phone call to my mom and dad to give them updates. I felt so empty, alone, and overwhelmed. Where do we start? How do I help him? How can I help him today with his development? The questions were endless, and the worry was growing.
Two days later, we had an appointment with one of the top Pediatric Retina Specialist in the country, Dr. Thomas C. Lee, director of the Retina Institute at Childrens Hospital Los Angeles. How we got into contact with this man, is a story in itself. Troy had shared the news of our son, with the amazing friends at his work, and they all rallied to help and show support for our family. It's amazing how many people are truly concerned and loving towards my son and my husband. I am beside myself to know when Troy walks into his work everyday, he is amongst his second family. It's nice to know you work for a company that instills those family values, and nice to know their support is there for him. I am truly thankful for every one of his coworkers/friends, and am blessed my family is in their company on an everyday basis.
Opening commentary
I want to preface, I am in no way a writer nor a blogger. I have no idea what I am doing! I have been spending way too much time on trying to get this blog to look the way I want it to - so I will get the content out there, and work on the rest later. Excuse the Construction zone, bare with me. Upcoming posts will document dr. appts, the diagnosis and our road to upcoming procedures and possible clinical studies. I don't know how much I can get out here today, because I have a 4 month old, a vivacious, 4 yr old, and hubby who glares. LOL I will try to get all this data out on a post by the end of today.
I want the content of this blog to reach my family and friends and give updates on Gavin. I have family that live out of state, and so much family for that matter, I wanted a repository to hold all the data that has been thrown at us the past week. I also want this blog to serve as a means for me to connect with other families in a similar situation. Thirdly, I want this blog to serve as a timeline for Gavin, so he can one day READ his own story that we are documenting, as we all know it is very difficult to hold onto every single detail by memory alone.
I'm glad you are here. You either know us, love us, or just have an interest in our journey. Either way, thank you for reading the story/documentation of our precious little boy, and PLEASE let me know if you have any questions, resources, people in a similar situation as us, etc.. Knowledge is power, and I am on a mission. I'm not sure where this mission will take us, but I am determined. The past week, since learning new information, I AM on a mission most of the day. In between these feelings of determination, lies a very deep sadness for my son. Sometimes I cry so hard, and so deep, it's hard to breathe. Sometimes I glance at him, and wonder if he will ever see his mommy's eyes, and SEE how much joy he brings to us. I know he feels it, and that is what gets us through the day. To quote my aunt, from a very touching email she sent us, "His eyes only impair his sight, not his heart, brain, personality or love for life and his family." These words are so profound, and so true.
I want the content of this blog to reach my family and friends and give updates on Gavin. I have family that live out of state, and so much family for that matter, I wanted a repository to hold all the data that has been thrown at us the past week. I also want this blog to serve as a means for me to connect with other families in a similar situation. Thirdly, I want this blog to serve as a timeline for Gavin, so he can one day READ his own story that we are documenting, as we all know it is very difficult to hold onto every single detail by memory alone.
I'm glad you are here. You either know us, love us, or just have an interest in our journey. Either way, thank you for reading the story/documentation of our precious little boy, and PLEASE let me know if you have any questions, resources, people in a similar situation as us, etc.. Knowledge is power, and I am on a mission. I'm not sure where this mission will take us, but I am determined. The past week, since learning new information, I AM on a mission most of the day. In between these feelings of determination, lies a very deep sadness for my son. Sometimes I cry so hard, and so deep, it's hard to breathe. Sometimes I glance at him, and wonder if he will ever see his mommy's eyes, and SEE how much joy he brings to us. I know he feels it, and that is what gets us through the day. To quote my aunt, from a very touching email she sent us, "His eyes only impair his sight, not his heart, brain, personality or love for life and his family." These words are so profound, and so true.
A whole new world
How can life prepare you for the words spoken to you by a doctor, that is going to completely change the dynamic and future of your family? There is no preparation, there is no book. This is the way life works, and in all the uncertainty, in all the fear, the unknown, we know we are all going to be ok.
To quickly recap what we have gone through the past 3 months, I will start with the day Gavin was born. He was born, happy and healthy on Oct. 2, 2008. Our little boy, who had his odds against him, finally made it to this world - after what seemed the longest pregnancy in Guiness Book history (to me anyway). At 8 weeks pregnant, I hemorrhaged and sat in a hospital for 6 hours in Las Vegas waiting for the ER doctor to perform the D & C. He was certain, as was I, that a miscarriage was happening. To make a very long story short, my little gummy bear survived, and I was on bedrest for the next 5 months with a pretty moderate sized subchorionic hematoma (blood clot on the placenta that tore over half the placenta away from the uterus). We knew at any moment, the placenta could continue to tear away - and we had the chance of losing him even going into the 5th month of pregnancy.
October 2nd, was a changing day for our family. Those long months of pregnancy filled with worry, anxiety and hope proved to seem like it had gone by in a second the moment I laid eyes on my new son. He was finally here! I couldn't ask for a more beautiful, healthy baby. Not knowing the gender of our baby, made that moment, one of the best memories I have to date of my life.
The beginning of our new journey, probably really began the day he was born. Or was it the next day, I don't know. When you're in the hospital, on some good drugs, the days kind of mesh together. I remember holding Gavin, gazing down at his porcelin white skin and telling my husband, "there is something wrong with his eyes.". Not his vision, his eyes. Little did I know then, how profound those words are, and how that mommy instinct would prove to be so correct.
To quickly recap what we have gone through the past 3 months, I will start with the day Gavin was born. He was born, happy and healthy on Oct. 2, 2008. Our little boy, who had his odds against him, finally made it to this world - after what seemed the longest pregnancy in Guiness Book history (to me anyway). At 8 weeks pregnant, I hemorrhaged and sat in a hospital for 6 hours in Las Vegas waiting for the ER doctor to perform the D & C. He was certain, as was I, that a miscarriage was happening. To make a very long story short, my little gummy bear survived, and I was on bedrest for the next 5 months with a pretty moderate sized subchorionic hematoma (blood clot on the placenta that tore over half the placenta away from the uterus). We knew at any moment, the placenta could continue to tear away - and we had the chance of losing him even going into the 5th month of pregnancy.
October 2nd, was a changing day for our family. Those long months of pregnancy filled with worry, anxiety and hope proved to seem like it had gone by in a second the moment I laid eyes on my new son. He was finally here! I couldn't ask for a more beautiful, healthy baby. Not knowing the gender of our baby, made that moment, one of the best memories I have to date of my life.
The beginning of our new journey, probably really began the day he was born. Or was it the next day, I don't know. When you're in the hospital, on some good drugs, the days kind of mesh together. I remember holding Gavin, gazing down at his porcelin white skin and telling my husband, "there is something wrong with his eyes.". Not his vision, his eyes. Little did I know then, how profound those words are, and how that mommy instinct would prove to be so correct.
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