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 ;)
Monday, June 9, 2014
Tuesday, May 27, 2014
Wednesday, May 7, 2014
I don't know if it was the fact that his name was Hunter or just the whole kid cancer thing that gets me every time, but I couldn't help but think about those make a wish kids, the Kidds' Kids trips, the opportunity to give children with disabilities the chance to experience things they otherwise may never have been given the chance to experience. One little boy on the Kidds' Kids trip this year went because he is losing his vision, and the parents wanted him to be able to experience Disney World before he went completely blind. Well just this morning, I got an email for the Cochlear Celebration that Cochlear America puts on every other year in Disney World for recipients and families of people with Cochlear Implants. It's more of a seminar for families but they have special events planned for the children as well. And when I sent it to Blair to see if we could go, he said yes right away. And to be honest, I was shocked. Sometimes when we are debating taking the kids places, we decide it's just easier to stay home with the ages that they are. And I was sure he would say the same thing about this opportunity. But I'm so glad he didn't.
I think I keep holding on to the idea that there will be a cure before Hunter loses his vision, but he's 3 now, and as quickly as those three years have passed, another five will be under our belts before we know it, his vision may start to deteriorate, and we won't be able to turn back time. I just don't want to wish we would have done more with Hunter if there is no cure by the time he starts to lose his vision. I once overheard Blair telling a friend that he wanted to be able to take him hunting at an early age so that he can experience the joy Blair does of shooting a deer before he loses his vision. (Sorry for those not from South LA, but it's a huge thing down here. Hunting is in Hunter's blood, whether he wants it or not.) And if you ask our friends and family, we really never.stop. We always have something going on. The first few months after Harrison was born, we stayed home more than ever. And it was kind of nice for a change, but I will tell anyone, I'd rather spend money on traveling and experiences than on clothes and shoes and things that don't create memories for a lifetime. (Yes, I still buy clothes). But if I don't take a flight somewhere every 6 months or so, I start to get cranky. And I am grateful for our support system, for our family members who help us make these things possible, and those who also provide great experiences and great memories for Hunter. We couldn't do any of this without them.
We can hope and wish and pray for a cure, and we can have all the faith in the world. But we can't turn back time, and I don't want to regret not making the most out of the only memories Hunter may potentially have of seeing the world.
Thank you all for listening, it's been an emotional day from the 4:45am start, and after watching that video, I needed to write and let out a good little cry. I just write a lot smoother when I am crying ;)
Tuesday, April 29, 2014
But we are almost all nursed back to good health!
Monday, March 31, 2014
Anyway, Hunter's "exceptionality" is listed as hearing impairment, which is probably the only reason he still qualifies for services because they have tightened the reigns on kids they can service, but because of his diagnosis he will always be eligible, whether his assessments says so or not.
The assessment consisted of a social worker, speech pathologist, educational diagnostician and an audiologist. Using my answers to various questions, the team selected toys and activities to incorporate in the play sessions. He was encouraged to engage in self-selected and adult-structured play. (Side note: He was just excited that they had 3 vacuums to play with!) Observations were made of Hunter playing alone, with one other child and with adults for 2 days.
So skipping over all the technical language, Hunter's adaptive behavior composite indicated that his behavior skills were within the adequate range of scores when compared to children of the same chronological age level. His communication, daily living skills, socialization and motor skills were all adequate.
The report indicates that Hunter is a delightful and talkative preschooler and particularly liked playing in the housekeeper center (we are about to put him on payroll at home!). He labeled many of the plastic food items and enjoyed stringing beads and successfully counted to 15, skipped 16 and went on to twenty.
He used common objects functionally, activated toys, nested cups, completed a three-piece foam board, remembered placement of objects removed from sight, sorted by size and color, and also matched other objects to their pictures. When speaking, he used personal pronouns and plurals, stated his age and name and indicated he was a boy when asked. He shared with the other child while playing, imposed actions on dolls and combined objects and sequenced actions in play. He pointed to pictures of common objects and actions, labeled pictures in books, verbally responded to yes/no questions and pointed in response to those questions about personal needs. He demonstrated an understanding of the quantitative concepts of one, two and all and the qualitative concepts of big and little.
When these skills were recorded on the Cognitive assessment of young children, Hunter obtained an age equivalent of 39 months which corresponds to a 75% rank, which is average for his age. (and we are so proud of that entire 75% considering he couldn't hear his entire first year of life, so he has really caught up quickly!)
Ok this report is 7 more pages, so I will try and summarize a little better!
Hunter's total language score falls at 104 which is .27 standard deviations above the mean for a child Hunter's age, indicating high average language abilities.
There was a word repetition task which yields age-appropriate cut off scores to determine whether further articulation testing is needed and Hunter correctly produced 18 out of 23 attempted phonemes indicating typical articulation skills for a child his age. His conversational speech was easily understood by both familiar and unfamiliar listeners.
In the area of Nonverbal Communication Skills, Hunter responds to and uses varying facial expressions, understands outreached arms to request a hug and uses varying tones of voice.
In the area of Conversational routines and skills, Hunter waves hello/goodbye, looks at the person whom he is speaking, joins play groups, and initiates and maintains conversations. He often maintains attention while another person speaks, and sometimes waits until the end of a person's sentence before speaking, says "excuse me" and stays quiet when expected to.
In the are of asking for, giving and responding to information, Hunter gives and accepts hugs, asks for help from others, asks questions and offers to help others. He sometimes stops a behavior when asked to. (haha)
1. Displays high average communication skills
2. Displays average early learning abilities
3. Exhibits adequate motor abilities
4. Attentive, cooperative, friendly preschooler
5. Independent in self help skills
There was a summary at the end, which is what I probably should have just included in here, but it basically recaps the above information.
We could not be more pleased with the results of his assessment. 3 years ago, we only dreamed Hunter would be able to perform as other kids his age do. And today, he's right in line beside them performing up to par.
Thank you to everyone who has helped us and Hunter along our journey. We could not have done it without the love and support of everyone around us. Hunter is one lucky little boy, and we are even luckier to be his parents.
As another side note, we were so excited that our old AV Therapist "Aunt Shelley" came to Lafayette and we had breakfast with her Saturday morning. She is so sweet and refers to Hunter as Smarty McSmarty Pants!
And here is a picture and a few videos of Hunter today at his 3 year check up! He is in the 97% percentile for height and 88% for weight. Yes, he's big :) the first one was a series of questions to check his milestones, sorry about the quality, it didn't transfer well. The second was just the nurse checking his blood pressure
And me and my boys... I couldn't leave this one out! I count my blessings every.single.day.
Tuesday, March 11, 2014
The world was completely silent to him. I just can't imagine that feeling to anyone in the world, and the last person I wanted that for was my child. He was a happy baby and obviously never seemed very bothered by it because he didn't know he was supposed to be able to hear. But I knew. And as a mommy, you just want to give your babies the world, but sometimes God has other things in mind. His first birthday was such a big deal for us. It was bittersweet because it meant he was finally of age to get his CIs, but as our entire family gathered to sing Happy Birthday, he couldn't hear a single word of it. I remember being grateful at the time for a healthy baby boy who would soon receive the gift of hearing. But at the same time, a little piece of me wished he could hear the world around him and not be any different than any other 1 year old.
We had Hunter's 3rd birthday party at The Little Gym this past weekend and he had an absolute blast!