Good Morning!
After attending the Usher Syndrome Coalition's family conference a few weeks ago, we were flying high with all of our fellow parents of kids with US, and we decided to start a facebook page for everyone to be updated on Hunter's journey. This page was also more so created for each.and.every.one.of.YOU all over the WORLD to share with your friends, family and co-workers to start talking about Usher Syndrome. To give Usher Syndrome a new light, and not make it out to be a life without life. Because Usher Syndrome in fact does not stop a person from living. It just changes their every day routines. Get to know someone with Usher Syndrome and you will realize it's nothing contagious, it doesn't harm his or her spirit. It's just something that has made these people a little stronger because they have to work a little harder than most!
https://www.facebook.com/angelicears
Like it. Share it. Talk about it. Advocate for it. We aren't asking for your money, we just want your support.
And before you know it, you will be the reason that there is a cure for it!
Many many thanks!
Hearing ticker
Monday, July 28, 2014
Friday, July 25, 2014
Annual Eye Appointment 2014
Today we had Hunter's annual (for now) eye appointment with Dr. Piccione in Lafayette. He is one of the only pediatric eye doctor's in the area and Hunter has been seeing him since we got the Usher 1C diagnosis.
I probably didn't really even mention to anyone, except in passing, that he had this appointment. I don't think I really put much stock into anything going on at this age because the "typical" vision loss progression isn't supposed to set in for another few years. **PLUS- we will have some form of treatment before then, right?! :)**
Anyway, the nurse did a few tests with a computer screen in the distance and a few black and white pictures and he had to identify what they were. They were actually black lines that weren't connected, I wish I could find an example online but I can't. It was like 3 semi-circles with three vertical lines and the dots on top of the lines for the candles. I think I'm confusing myself trying to explain it but anyway. He then had to do it with one eye covered and match the picture on the screen to the same picture on a card he was holding. He probably got 95% of them correct.
Then they had him look at a few pictures like this to test for color blindness. There were shapes in the pictures and he nailed them all :) Here is an example of that one.
They dilated his eyes afterwards so we went look for a pair of solid black sunglasses next door while waiting to see the doctor. Well all he wanted to do was try on the glasses and say, "Look, I'm NANA!" Although I don't think she found it too comical, I sure did!
After looking in his eyes for a minute or so, he said that he was slightly near sighted, but not enough to require glasses. But I asked if that had anything to do with Usher Syndrome and he said no, just merely genetic. (Blair and I both wear contacts because we are near sighted, so that's probably inevitable for both of my boys. Blair started wearing glasses in the 4th grade.)
I also asked how many Usher patients he sees, and he said probably 10. Now that's pediatric patients, which is probably a good number because MOST children in this area who are born deaf do not know they could have Usher Syndrome until a later age when they start having vision issues. We had the genetic testing done due to family history, and that is why we got our diagnosis at such a young age.
Also, I asked if they took pictures of the eye because my eye doctor did just a month or so ago and we could see 3D images of the eye and I figured it would be a good thing to have. He said yes and they ended up taking a picture and will take another one a year from now to start comparing and looking for any visible changes.
The doctor did mention that he has very thin blood vessels, which is an indication of some type of RP. He said he normally wouldn't mention it unless there was family history of RP, but since we have it he said the cells are thinner than normal. But I guess that's par for the course. We are just so so grateful that at this point, things are looking good.
As the late Kidd Kraddick used to say, keep lookin up cause that's where it all is! :)
I probably didn't really even mention to anyone, except in passing, that he had this appointment. I don't think I really put much stock into anything going on at this age because the "typical" vision loss progression isn't supposed to set in for another few years. **PLUS- we will have some form of treatment before then, right?! :)**
Anyway, the nurse did a few tests with a computer screen in the distance and a few black and white pictures and he had to identify what they were. They were actually black lines that weren't connected, I wish I could find an example online but I can't. It was like 3 semi-circles with three vertical lines and the dots on top of the lines for the candles. I think I'm confusing myself trying to explain it but anyway. He then had to do it with one eye covered and match the picture on the screen to the same picture on a card he was holding. He probably got 95% of them correct.
Then they had him look at a few pictures like this to test for color blindness. There were shapes in the pictures and he nailed them all :) Here is an example of that one.
They dilated his eyes afterwards so we went look for a pair of solid black sunglasses next door while waiting to see the doctor. Well all he wanted to do was try on the glasses and say, "Look, I'm NANA!" Although I don't think she found it too comical, I sure did!
Then shortly after, we were called to the back and Dr. Piccione came to look at Hunter's eyes. He's a man of very few words, so I made sure to talk a lot to get my questions and concerns answered.After looking in his eyes for a minute or so, he said that he was slightly near sighted, but not enough to require glasses. But I asked if that had anything to do with Usher Syndrome and he said no, just merely genetic. (Blair and I both wear contacts because we are near sighted, so that's probably inevitable for both of my boys. Blair started wearing glasses in the 4th grade.)
I also asked how many Usher patients he sees, and he said probably 10. Now that's pediatric patients, which is probably a good number because MOST children in this area who are born deaf do not know they could have Usher Syndrome until a later age when they start having vision issues. We had the genetic testing done due to family history, and that is why we got our diagnosis at such a young age.
Also, I asked if they took pictures of the eye because my eye doctor did just a month or so ago and we could see 3D images of the eye and I figured it would be a good thing to have. He said yes and they ended up taking a picture and will take another one a year from now to start comparing and looking for any visible changes.
The doctor did mention that he has very thin blood vessels, which is an indication of some type of RP. He said he normally wouldn't mention it unless there was family history of RP, but since we have it he said the cells are thinner than normal. But I guess that's par for the course. We are just so so grateful that at this point, things are looking good.
As the late Kidd Kraddick used to say, keep lookin up cause that's where it all is! :)
thanks for following-
elise
Friday, July 18, 2014
#USH2014
This past weekend, Blair, Hunter and myself flew a non-stop flight from New Orleans to Boston for the 6th Annual Usher Syndrome Coalition's Family Conference on Saturday. We thought it would be Hunter's first flight back when we booked it, before knowing about our PA trip, so we thought a non-stop flight would be best. But keeping a toddler entertained and sitting in the same seat for 3 hours was exhausting. Our high hopes of having him nap failed until 10 minutes before we landed in New Orleans on our way home, at which point we kept him up so that he could sleep in the car rather than getting a little power nap before our 2 hour drive home from the airport!
We stayed at a very centrally located hotel in Boston, so every corner around us had shops, restaurants, and historical buildings. It was an absolutely beautiful and clean city. We got there around 730 Friday night and Hunter & Blair got to experience their first subway ride together from the airport to our hotel. (I of course was having a slight anxiety attic while always keeping my body between Hunter and the subway tracks!). But he loved it. He loved the train and he loved to people watch. We all crashed pretty hard after a long day and woke up early to attend the conference. There was a babysitting service for all of the children there so Hunter got to play all day while we attended the conference.
As a member of the coalition's board of directors and governmental relations committee, I was asked to give the welcome speech to start off the day. They wanted me to touch upon the work we have been doing in DC to try and obtain funding from the NIH and to announce the location of the family conference for 2015 since I organized booking it in NOLA for 2015. I even got a few cheers after announcing the location, so I hope a lot of people can make it! The first half of the day included talks by a few different professionals just touching upon genetic testing, the psychological effects of living with US and what some of their patients have experienced, while after lunch there was a family panel that included 4 people with US and one mom of a 4 year old girl with US. The family panel is always the best part of the day. It's real people speaking from the heart about their own experiences with Usher Syndrome. Their experiences were raw. And everyone loves hearing something "real".
One of the members of the panel was a 32 year old dad with Usher Syndrome. What an amazing journey he is on, living with a wife and two kids, while losing his eyesight rapidly. He didn't find out he had US until after he was married with a child at the age of 27. When asked what the most difficult part of living a life with Usher Syndrome was, he began to tell a story of when he and his family were in Las Vegas. Walking the crowded strip was not an easy task for him, so his 6 year old son came up with a system of different hand squeezes for when he needed to go right, left, stop, slow down. You can't help but tear up when a this tall, athletic and quite normal looking guy who is going through everything Blair and I are at this point in our lives, has to deal with vision loss on top of raising two kids and taking care of his family. His 6 year old was ultimately taking care of him. His 6 year old is dealing with his dad's vision loss, and quite well from what I understand.
Another member of the family panel that struck me pretty hard was a mom of a 4 year old girl. She is from Great Britain and came introduce herself to me during one of the breaks since she knew from my speech that I had a 3 year old with US. I have to say, she is one of the sweetest people I have ever met. Besides the fact that I was obsessed with her accent.
And Chloe Joyner, she is a beautiful person inside and out. Her 4 year old daughter is the luckiest little girl on earth to have Chloe as her mother. Her words brought me to tears, there was no fighting them back. Thank you, Chloe, for being a member of the family panel and for sharing experiences with us. Your positive attitude and outlook on life as a parent of a child with US is so very admirable.
I can't even begin to explain how meeting so many new people at the conference this year touched my life. When Blair and I attended our first conference in St. Louis 2 years ago, I walked in, saw what seemed like a million white canes and seeing eye dogs, and I walked right back out because I couldn't keep my composure. But the community that is coming together, the parents who are starting foundations, planning fundraisers, and merely walking up to me saying thank you for your speech, I have a child with US too. Those are the people that I secretly consider my best friend when I start to think about Hunter's future and how no one in my immediate support system will ever come close to imagining the worry that Blair and I have for Hunter. But my secret best friends, they have that pit in their stomach just like me, and that knot in their throat when things get all too real at doctor's appointments that "normal" children never have to go through. But they also have a drive to redefine Usher Syndrome, and that's my favorite thing that we all have in common. I can't wait to see them all again next year.
And here are a few pictures from Boston, as well as a video of Hunter in the hotel room. He is catching on to more and more these days, I just love to sit there and listen to him talk. It's still so surreal to me ;)
As a member of the coalition's board of directors and governmental relations committee, I was asked to give the welcome speech to start off the day. They wanted me to touch upon the work we have been doing in DC to try and obtain funding from the NIH and to announce the location of the family conference for 2015 since I organized booking it in NOLA for 2015. I even got a few cheers after announcing the location, so I hope a lot of people can make it! The first half of the day included talks by a few different professionals just touching upon genetic testing, the psychological effects of living with US and what some of their patients have experienced, while after lunch there was a family panel that included 4 people with US and one mom of a 4 year old girl with US. The family panel is always the best part of the day. It's real people speaking from the heart about their own experiences with Usher Syndrome. Their experiences were raw. And everyone loves hearing something "real".
One of the members of the panel was a 32 year old dad with Usher Syndrome. What an amazing journey he is on, living with a wife and two kids, while losing his eyesight rapidly. He didn't find out he had US until after he was married with a child at the age of 27. When asked what the most difficult part of living a life with Usher Syndrome was, he began to tell a story of when he and his family were in Las Vegas. Walking the crowded strip was not an easy task for him, so his 6 year old son came up with a system of different hand squeezes for when he needed to go right, left, stop, slow down. You can't help but tear up when a this tall, athletic and quite normal looking guy who is going through everything Blair and I are at this point in our lives, has to deal with vision loss on top of raising two kids and taking care of his family. His 6 year old was ultimately taking care of him. His 6 year old is dealing with his dad's vision loss, and quite well from what I understand.
Another member of the family panel that struck me pretty hard was a mom of a 4 year old girl. She is from Great Britain and came introduce herself to me during one of the breaks since she knew from my speech that I had a 3 year old with US. I have to say, she is one of the sweetest people I have ever met. Besides the fact that I was obsessed with her accent.
And Chloe Joyner, she is a beautiful person inside and out. Her 4 year old daughter is the luckiest little girl on earth to have Chloe as her mother. Her words brought me to tears, there was no fighting them back. Thank you, Chloe, for being a member of the family panel and for sharing experiences with us. Your positive attitude and outlook on life as a parent of a child with US is so very admirable.
(gotta get one selfie in there)
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