Friday, December 12, 2014
Wednesday, December 3, 2014
Monday, October 13, 2014
Hunter has been doing wonderfully at St. Edward School. The first week or so was rough, he would cry/whine about going and he didn't like going to after school care. Which in our family is a must because I can't be there for 2:50 to pick him up every day. But now he has really gotten into the swing of things and actually likes going to after school care. When people ask him what his teacher's name is, he always includes the ASC teacher, Mrs. Jennifer. He has really gotten the days of the week concept down pat and every morning asks what day it is and where we are going that day. He knows now that we go to school Monday through Friday and stay home on Saturdays and Sundays. He also receives speech therapist twice a week at St. Edward with a lady who has sent me some of the nicest notes about his progress.
Honestly, this woman has no idea how much these emails ease my worries. I always pray that Hunter does great things in the future, but to get reassurance that someone else believes that will happen, and especially from a professional, makes all the difference in the world!!
I also wanted to mention that on October 25th I will be participating as a member of the family panel at an Usher Syndrome Symposium in Baton Rouge at the Pennington Biomedical Research Center. We are focusing on getting families from Louisiana together to discuss all aspects of Usher Syndrome. Dr. Jennifer Lentz who spoke at our fundraiser last September in Broussard is putting this on along with the LSU Health Sciences Center out of New Orleans. If you know anyone from Louisiana and surrounding areas who would be interested, please email firstname.lastname@example.org.
My post will be a little short, but I will add a few pictures. Pictures tell more of a story than my updates anyway.
Monday, August 11, 2014
I have to say I am one proud mama. It took a village to get Hunter where he needed to be, and I mean a village. From everyone in our family who cheered, and prayed, and babysat, and drove Hunter to Baton Rouge, to all of his therapists and everyday caregivers. And to our friends. I know Blair and I would still be standing today without our friends who gave us the courage to push on when we didn't think we could.
This picture right here is worth a thousand words!
Wednesday, August 6, 2014
Uncertainty and UncertaintyJuly 30, 2014
© 2014 Usher Syndrome Coalition
Monday, August 4, 2014
Blair got a new job back in May on the complete opposite side of Lafayette from where he was, which also means on the complete opposite side of town from Nini's house. So unfortunately, after 2.5 wonderful years of Hunter staying at Nini's house during the day, we had to make a move for both boys, for logistical reasons only. So Hunter and Harrison started at a new daycare in Broussard called Buttons and Bubbles. It was not an easy adjustment for Hunter, he asked for Nini a lot and even this morning mentioned going to her house, which he hadn't done in a while. But it's been good for him, it's been a growing experience for us all. Speaking of growing, Harrison is growing like a weed! Not to mention he started crawling and pulling up on everything this summer. But Buttons and Bubbles will also soon be in the past because both boys started at an in home sitter in New Iberia today. And as crazy as this seems, the in home sitter lives in the house that we lived in when I was born. Talk about going back in time many many (too many to count) years ago! Hunter will only be there a week because... drum roll please.... he is starting Pre K 3 at St. Edward's school in New Iberia!! When we went to buy school uniforms a few weeks ago, I about fell over when he had his uniform on. He looked like he was 10 years old! I've already started preparing myself for the first couple of weeks of dropping him off. It's going to be so so great for him, but I'm just not sure I am emotionally prepared yet! Please keep him in your thoughts and prayers because adjusting to change is not one of his strong points ;)
In the meantime, we had our house up for sale because we started building a house in New Iberia back in March. It's three doors down from my parents, next door to one set of grandparents and in the same neighborhood as my other grandmother plus 10 minutes from Blair's parents, so Hunter is in hog heaven! We got an offer on our old house mid June and closed this on July 15th. But since we were in Boston last weekend for the Usher Syndrome Coalition Family Conference, we moved out the weekend of July 4th and moved in with the grandmother until our house is complete. We are shooting to be in mid September.
The Sunday after we moved out, I asked a girl who has taken pictures of the boys before to come and take a few shots of us at the old house. It was such a bittersweet moment for me. It was the house I brought my two boys home to from the hospital. It holds so many great memories including many many firsts for both of my boys. I will never ever ever forget the night Hunter crawled and the day he walked through the door and straight into my arms for the first time. I will miss our dancing in the kitchen and the living room and cooking pizzas in the kitchen. All things that of course will be done in our new house, but there's nothing like your first family home. Here are a few of the pictures from Nicole Bell Photography:
I started this post a few weeks ago, so I can update you guys on living in "the berry" because we have been there for almost a month. And it's been so nice. I never realized how small my front yard was until we started playing in my grandmother's yard. And my parents have been a big help and Hunter gets to spend more time with them, and of course living with my grandmother has worked out really well for all of us. (at least we think so ;)
Monday, July 28, 2014
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!
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!
Friday, July 25, 2014
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! :)
Friday, July 18, 2014
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!
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 ;)