I know this is a blog specifically for my son, but my heart is so heavy with the passing of my uncle, and the grief my family is enduring during this time. I will get back to posting about Gavin as soon as we get back on track. It's difficult.
I did want to share a link with you. My uncle was a HUGE hockey fan. The LA Kings have honored my uncle on their website. What a way to honor him. He would be thrilled.
There is also information on the article about an exhibition game taking place in Ontario, off of Euclid Ave this Sat night. All donations will go towards my aunt and 2 cousins. Hope to see you at the ice as they make a tribute towards my uncle and his family.
.... PS Thanks to all for the wonderful messages.
Also feel free to pass on information about the exposition game. We would love to have many people there paying tribute!! It's the only thing we can do right now, to stay positive, as we begin the pre preliminary trial tomorrow.
Wednesday, April 29, 2009
Tuesday, April 21, 2009
A succession of moments...
Love the moment.
Flowers grow out of dark moments.
Therefore, each moment is vital.
It affects the whole.
Life is a succession of such moments and to live each, is to succeed.
If you have been reading this blog, it's not news this has been a difficult year for my family. Sadness, grief and mourning have filled the walls of the homes of many family members. Including mine. Personally, last year started off bad for my immediate household. This lead us to the joyous occasion of my son being born, and then us finding the news of his condition, was devastating. We lost my grandpa 2 months ago, and then our uncle (my grandpa's youngest child) a week from today. Wow. A week from today. (That is hard to type/see).
I'm not trying to get sympathy here, simply stating facts. We have all experienced sadness. This comes down to this being life. We never know when your family will be faced with tragedy, sadness, grief. I have been living in fear since the passing of my uncle. I'm scared to say good-bye to my husband as he walks out the door for work each morning. I'm worried when my son is at preschool, even though he is in good care. I check on my boys 10 times a night (no exaggeration). When I hear about an "accident" on the freeway on the news, my heart sinks wondering if it's someone I love. Every siren that I hear, I wonder if it's for my family or friends that just left my house. My heart skips a beat when the phone rings. I worry that another illness-type disease will strike my children, my husband, myself.
I'm just scared.
It does sound so cliche, but was has happened with the odds with Gavin, to my uncle's untimely sudden death - never in a hundred years did I imagine it would happen with my family. Not my son? Not my uncle who was in his front yard? Not that another family is more deserving, it's just this is stuff you hear about on the news or "friends of friends of coworkers". Not with my family? We are all humans, we are all vulnerable, we are all at risk for devastation at any cost. At any moment. It's the hard, sad truth and reality of life.
I cannot have this adversity and sadness and heartbreaking grief stop me from living. I cannot, and will not instill this fear into my children. I refuse to have Landon look in my eyes, and see fear when he says good bye to me in the morning. I refuse to hold Gavin each morning, and have him feel the tears and the worried tone to my voice. Living with caution is very different than living in fear. It's something I need to work through, and I know I will.
Each and every moment is vital to our life. The joyous, happy occasions, to the gut-wrenching sorrow, sadness and grief. They are important. They are our moments, it is our life, it is these emotions that validates us as humans. To know and understand the good and the bad of what we experience and what we feel contributes to the big picture that we were given a life. An opportunity to feel, love and experience. We were born, we are important. We are human.
But knowing I have succeeded by getting through the dark moments, is what I need to remind myself as I feel the pain, the sadness, the longing.
They are all vital. Even the sad moments. They all affect the whole.
I need to remember the sadness that fills my heart for my son, for my family, is all part of life. My life. I'm grateful I am blessed to have a life and feel every emotion. I was given a chance. Something difficult at times to understand, but it is what it is. We are all here to experience this, but making them momentous and touching to one another means more than having it, I think.
Good times. Bad times. Happiness. Sorrow.
They are vital. And you have succeeded just by getting through them.
Not by understanding them, agreeing with them, deserving them or wanting them.
But by getting through them.
Monday, April 20, 2009
Lost
It's been a week, I don't have any updates. Tragedy struck my family last Tuesday evening, and I have no idea where I am with the list of all we had to do for Gavin. I'm hoping sometime this week, we can get back on track. Our days are filled with being with my grandma and aunt from early morning until 10, 11pm each night. My house is a disaster, my thoughts are racing and my heart is broken.
Please say a quick prayer for my family. There are so many people affected by such a tragic, sudden loss of a wonderful man, my uncle, taken so senselessly. He leaves behind a beautiful wife and two young boys.
Please hug those around you. My uncle was returning from an outing with his wife and son. Pulled up to his driveway, walked to get his mail from the front yard, and was killed.
Just like that.
My aunt and cousin witnessed the horror. He was 42 years old.
I just don't understand life sometimes. My heart is torn. It aches for my dad who lost his baby brother, for my wonderful grandma who lost her youngest child, and for his wife who lost her life partner. My cousins will go through life not having their father by their side, like he was everyday.
I am just lost. Spiritually, emotionally, and mentally.
I hope as the days go by, I can gain strength, and my heart can heal from all the pain I feel for my entire family. We are very close knit, and to see my family endure such pain is something I have never experienced, nor can put into words.
Love you uncle Richie.
Please say a quick prayer for my family. There are so many people affected by such a tragic, sudden loss of a wonderful man, my uncle, taken so senselessly. He leaves behind a beautiful wife and two young boys.
Please hug those around you. My uncle was returning from an outing with his wife and son. Pulled up to his driveway, walked to get his mail from the front yard, and was killed.
Just like that.
My aunt and cousin witnessed the horror. He was 42 years old.
I just don't understand life sometimes. My heart is torn. It aches for my dad who lost his baby brother, for my wonderful grandma who lost her youngest child, and for his wife who lost her life partner. My cousins will go through life not having their father by their side, like he was everyday.
I am just lost. Spiritually, emotionally, and mentally.
I hope as the days go by, I can gain strength, and my heart can heal from all the pain I feel for my entire family. We are very close knit, and to see my family endure such pain is something I have never experienced, nor can put into words.
Love you uncle Richie.
Monday, April 13, 2009
More genetics
Along with the information given to us by the doctors, I have been doing most of the research myself. Reading published medical journals/reports, etc. I try to stay away from getting my info from personal websites, as we all know those can sometimes be snow jobs, laced with persuasive information and biased opinions.
I found some interesting information in a published report "Genotyping Microarray (Disease Chip) for Leber Congenital Amaurosis: Detection of Modifier Alleles" by the The Association for Research in Vision and Ophthalmology, Inc.
I will stay away from posting all the very scientific medical jargon that will just leave you more confused. I love science and medicine, and it's taking me a while to digest all the compound, enzyme, protein names affected by the 6 identifying chromosomes on the DNA causing LCA. For now I will just post some number facts that I found interesting.
The odds of detecting a third allele (not heterozygous or homozygous) means it would be a new mutation of the disease in our family. Since Gavin is the first, it's possible. Different forms of one type of gene are called different alleles of that gene. Mutations are random events that change the sequence of a gene and therefore create a new allele. It's all possible Gavin carries the new mutation.
The incidence of LCA is estimated to be between 1 in 50,000 and 1 in 100,000 persons (i.e., approximately 1/75,000). Assuming that six LCA genes account for approximately 50% of the cases, we could expect a total of 12 LCA genes, resulting in 1 in 900,000 individuals harboring a specific genetic form of LCA. This means that 1 in 225,000 marriages is at risk, and that 1 in 474 individuals carry a specific LCA-associated genetic defect. Therefore, it is expected that 12 of 474, or 1 in 40, individuals are carriers of a disease-causing LCA mutation by chance.
When it all gets narrowed down, 1 in 40, is rare, but not that rare. Of course, that is just individuals who are carriers of the disease (Troy and/or myself). That means the mutation can happen with just one parent carrying the genetic defect, if it shows both me and Troy are not recessive carriers for vision loss.
Very interesting!
I found some interesting information in a published report "Genotyping Microarray (Disease Chip) for Leber Congenital Amaurosis: Detection of Modifier Alleles" by the The Association for Research in Vision and Ophthalmology, Inc.
I will stay away from posting all the very scientific medical jargon that will just leave you more confused. I love science and medicine, and it's taking me a while to digest all the compound, enzyme, protein names affected by the 6 identifying chromosomes on the DNA causing LCA. For now I will just post some number facts that I found interesting.
The odds of detecting a third allele (not heterozygous or homozygous) means it would be a new mutation of the disease in our family. Since Gavin is the first, it's possible. Different forms of one type of gene are called different alleles of that gene. Mutations are random events that change the sequence of a gene and therefore create a new allele. It's all possible Gavin carries the new mutation.
The incidence of LCA is estimated to be between 1 in 50,000 and 1 in 100,000 persons (i.e., approximately 1/75,000). Assuming that six LCA genes account for approximately 50% of the cases, we could expect a total of 12 LCA genes, resulting in 1 in 900,000 individuals harboring a specific genetic form of LCA. This means that 1 in 225,000 marriages is at risk, and that 1 in 474 individuals carry a specific LCA-associated genetic defect. Therefore, it is expected that 12 of 474, or 1 in 40, individuals are carriers of a disease-causing LCA mutation by chance.
When it all gets narrowed down, 1 in 40, is rare, but not that rare. Of course, that is just individuals who are carriers of the disease (Troy and/or myself). That means the mutation can happen with just one parent carrying the genetic defect, if it shows both me and Troy are not recessive carriers for vision loss.
Very interesting!
Check
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.
- 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.
Saturday, April 11, 2009
Breathe, regroup, and Holland...again
The past few weeks have been difficult. The past week, to be specific has been very trying. A few things have triggered some raw, sad emotions regarding my son. I am fine, so is he... I am just exhausted. I'm sure, like everyone, we all face the ebb and flow of emotions. Please don't feel sorry for us, that is not what the intent of this is. This post is a reminder of all that is great in my life. I need to continue to remind myself this. I find, I have been so busy, so overwhelmingly exhausting. Things build up, and I need to take a deep breath and refocus and regroup. I am sharing this again. It has helped me. Again.
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.
Welcome to Holland
by Emily Perl Kingsley
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, April 7, 2009
Information Overload Part 2
I have no idea why I am not in bed.
We just got home. No kidding. Our appointment lasted 3 hours, we rushed to drop Gavin off with my dad, Troy and I shoved a Subway sandwich down our throat and we ran to our Little League board meeting. The meeting ended at 10:40PM and we still had to run to Ontario to pick up the boys.
Troy and I have yet to even discuss the new information presented to us from our appointment.
As we were devouring our sandwich, we agreed to discuss things tomorrow. We knew we had our meeting to get to (that we were already 20 min late to) and I didn't have any energy left to discuss anything at that point. We both just shared with each other, how sad it was to see these 2 little blind boys, one age 5 and one age 6 making their way around the doctors office. I was brought to tears, and Troy just got quiet and put his head down. We were both feeling the same emotions at getting a glimpse into Gavin's life a few years from now. It was a bittersweet moment. It was hard to see these little guys trying to feel their way around. It was also great to see they were still boys, and wanted to play with each other and listen to music on their dads phone. They were as happy and defiant as any child their age would be. Sight or no sight.
I am going to have the information digest and sit with me overnight. I still cannot tell you everything we learned. I guess this is one way of me trying to clear my mind and organize my thoughts. These are the things we did learn:
- Suspect Gavin has Leber's Congenital Ameurosis (LCA). Those American Idol followers, it's the same disease Scott has.
- Gene therapy for this disease is in the works. 8 children have been cured during clinical trial studies. FDA has not approved it.
- That being said, and where they are with this study, this will be an option during Gavin's lifetime. (Yes, I'm crying as I type)
- It is a genetic disorder. Troy has it, I have it, or we both have it. Landon can have it, but just carry the dominant gene and display no symptoms. Gavin has it and is a carrier, caused by one mutation from either Troy or I, or by us both having the recessive gene. Since Troy and I possibly are the carrier, it means we have it but display no symptoms.
- The Johns Hopkins Center for Hereditary Eye Diseases that indicates three genes associated with LCA: chromosome 17, a 65kD RPE protein, and CRX on chromosome 19
- I am even more intrigued with DNA.
- We need blood work done on Gavin, Landon, myself, Troy, and family members (probably grandparents and siblings) to recognize where in our family this gene resides. This blood will be sent to 3 facilities across the country who will test and see if he can qualify for gene therapy.
- Gene therapy is miraculous. I cannot believe they can do this stuff. That is for another post when I have more energy.
- LCA is a rare type of disorder. I have seen the numbers range from 1 in 40,000 to 1 in 800,000. Variances of the disease is hard to pinpoint the exact number affected.
- I have even more conviction and validation to support the Foundation for Fighting Blindness. FFB funds these clinical trial studies that are curing people and will cure people, like my son one day.
- Yay for Gavin's Groupies!
- We need to get Gavin fitted for sunglasses. Hollowing of the eyes is common with vision deficiencies, and his constant rubbing is not helping. I have noticed his eyes appear much deeper the past few months. The glasses will also help with his sensitivity to light (photophobic).
- I have to look into antioxidant supplements for him. Vitamin therapy is HUGE for vision loss. It can slow down the degenerative disease, and this is for all eye diseases across the board, not just LCA.
- I have contact numbers for about 10 agencies I need to call tomorrow regarding gene therapy, developmental therapy, genetic testing and antioxidant supplement, etc, etc...
- Troy and I need to make a decision to go with this Dr or fight the insurance and stick with CHLA.
- I am thankful my cranky self went along with this appointment. We did get some more insight, and we have a lot of discussions ahead of us. We need to figure out what we are doing.
- I'm exhausted and off to bed.
- I am still bothered with the insurance.
We just got home. No kidding. Our appointment lasted 3 hours, we rushed to drop Gavin off with my dad, Troy and I shoved a Subway sandwich down our throat and we ran to our Little League board meeting. The meeting ended at 10:40PM and we still had to run to Ontario to pick up the boys.
Troy and I have yet to even discuss the new information presented to us from our appointment.
As we were devouring our sandwich, we agreed to discuss things tomorrow. We knew we had our meeting to get to (that we were already 20 min late to) and I didn't have any energy left to discuss anything at that point. We both just shared with each other, how sad it was to see these 2 little blind boys, one age 5 and one age 6 making their way around the doctors office. I was brought to tears, and Troy just got quiet and put his head down. We were both feeling the same emotions at getting a glimpse into Gavin's life a few years from now. It was a bittersweet moment. It was hard to see these little guys trying to feel their way around. It was also great to see they were still boys, and wanted to play with each other and listen to music on their dads phone. They were as happy and defiant as any child their age would be. Sight or no sight.
I am going to have the information digest and sit with me overnight. I still cannot tell you everything we learned. I guess this is one way of me trying to clear my mind and organize my thoughts. These are the things we did learn:
- Suspect Gavin has Leber's Congenital Ameurosis (LCA). Those American Idol followers, it's the same disease Scott has.
- Gene therapy for this disease is in the works. 8 children have been cured during clinical trial studies. FDA has not approved it.
- That being said, and where they are with this study, this will be an option during Gavin's lifetime. (Yes, I'm crying as I type)
- It is a genetic disorder. Troy has it, I have it, or we both have it. Landon can have it, but just carry the dominant gene and display no symptoms. Gavin has it and is a carrier, caused by one mutation from either Troy or I, or by us both having the recessive gene. Since Troy and I possibly are the carrier, it means we have it but display no symptoms.
- The Johns Hopkins Center for Hereditary Eye Diseases that indicates three genes associated with LCA: chromosome 17, a 65kD RPE protein, and CRX on chromosome 19
- I am even more intrigued with DNA.
- We need blood work done on Gavin, Landon, myself, Troy, and family members (probably grandparents and siblings) to recognize where in our family this gene resides. This blood will be sent to 3 facilities across the country who will test and see if he can qualify for gene therapy.
- Gene therapy is miraculous. I cannot believe they can do this stuff. That is for another post when I have more energy.
- LCA is a rare type of disorder. I have seen the numbers range from 1 in 40,000 to 1 in 800,000. Variances of the disease is hard to pinpoint the exact number affected.
- I have even more conviction and validation to support the Foundation for Fighting Blindness. FFB funds these clinical trial studies that are curing people and will cure people, like my son one day.
- Yay for Gavin's Groupies!
- We need to get Gavin fitted for sunglasses. Hollowing of the eyes is common with vision deficiencies, and his constant rubbing is not helping. I have noticed his eyes appear much deeper the past few months. The glasses will also help with his sensitivity to light (photophobic).
- I have to look into antioxidant supplements for him. Vitamin therapy is HUGE for vision loss. It can slow down the degenerative disease, and this is for all eye diseases across the board, not just LCA.
- I have contact numbers for about 10 agencies I need to call tomorrow regarding gene therapy, developmental therapy, genetic testing and antioxidant supplement, etc, etc...
- Troy and I need to make a decision to go with this Dr or fight the insurance and stick with CHLA.
- I am thankful my cranky self went along with this appointment. We did get some more insight, and we have a lot of discussions ahead of us. We need to figure out what we are doing.
- I'm exhausted and off to bed.
- I am still bothered with the insurance.
Subscribe to:
Posts (Atom)