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Monday, August 11, 2014

This just happened....

Today was Hunter Paul Faucheaux's 1st day of Pre-K 3! It's a full time class, 5 days a week that goes from Pre K 3 through 3rd grade. What an amazing and beautiful journey he has been on to have the ability to be mainstreamed and to attend the same little private school I did when I was in elementary in New Iberia. If you remember our summer trip to PA to see St. Katharine Drexel's shrine with Mrs. Karen, the principal of St. Edward, you know that St. Katharine Drexel founded St. Edward School. And Mrs. Karen has upheld her image and her spirit in everything that they do at St. Edward's.

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 Uncertainty"

I am reposting Mark Dunning's most recent blog post. Mark started the Coalition. But that statement doesn't give him enough credit because he started SO much more than just an organization. He started an extension of my family. He started a movement. He started something that is making an impact worldwide. Men/dads/husbands like Mark Dunning are one of a kind.

Uncertainty and Uncertainty

July 30, 2014
by Mark Dunning
 
Usher syndrome is about uncertainty.  It is not knowing.  It is fearing the future and desperately clinging to joyful moments in the present.
 
So is cancer.
 
My daughter, Bella, has Usher syndrome.  My wife, Julia, has cancer.  They are mother and daughter and, like all mothers and daughters, they are very similar and very different.  They are different people with different diseases living their lives in different ways.

 
Julia has a rare form of cancer.  It is slow moving, and no one really knows the expected progression of the disease.  We are told mortality rates, but those are guesses.  We are told she will be fine, that she will live a long life.  We are also told that there is not enough data to know for sure.  For now, all we can do is monitor it and hope for the best.
 
We lack data on Usher syndrome.  There is no clear information on the expected progression of the disease, only anecdotal evidence, really.  People with Usher type 1b slowly lose their vision but there we have no defined milestones, no clear understanding of when, or if, Bella’s vision will get worse.  All we can do is monitor it and hope for the best.  Monitor and worry. 
 
Like Usher syndrome, there is controversy around the treatment options for Julia’s form of cancer and not enough data to prove efficacy.  Vitamin A and DHA and lutein appear to slow the progression of Usher syndrome.  Sunglasses might help.  We don’t know for sure.  For Julia, it is surgery and a form of chemotherapy called Hyperthermic Intraperitoneal Chemotherapy (HIPEC) that itself is controversial.  There is not enough evidence to know for sure if it will cure the cancer.  If not, the only option right now is to have the same surgery and chemotherapy again.  And again.  And again.  Monitor and hope for the best.  Monitor and worry.
 
This post isn’t about Usher syndrome.  But, as always, it is.  Bella was always going to be fine in the future.  Treatments are coming.  We’ll save her vision.  Even if we don’t, Bella will be happy.  She has a great attitude about life.  She has a lot of support.  We’ll always be there for her. 
 
Unless we aren’t.  What then?
 
Bella has always lived for today.  She soaks in the happiness of the moment.  Julia is different.  Happiness is always a future return.  She fears it in the present.  Good things today mean bad things tomorrow.  That’s how she gets through tough times.  There will be sunshine tomorrow.  Suffering today is just investment in future happiness.
 
Usher has challenged that approach to life.  It is bad today.  It will be worse in the future.  How do you get through today when there is no forecast of sunshine for tomorrow?  And what if there is not tomorrow at all?
 
While Bella whistles a tune through the present, Julia is adapting.  She takes each day in slivers now, balancing wisps of happiness with tweaks of fear.  She dips a toe in the bath and pulls it back, catches glimpses of contentment through the looming fog of cancer, of Usher.  Somewhere out there is the life she wants for herself, for Bella, but it drifts in a cloud like a dream, far away from where she stands.  And that is what is best for Julia.  Today is not misery.  Today is not glorious.  Today is just something to be gotten through while tomorrow lurks.
 

Displaying Uncertainty Post_Image.jpg
That’s still hope, though, isn’t it?  To, each day, still believe in tomorrow?  There is still a future out there for Julia, for Bella.  That future will have good things in it.  It’s not a given.  It can’t be taken for granted.  But tomorrow has never been anything more than hope.  The future is never anything but opaque.  After all, there are few certainties.  In our family, only three come to mind.

 
Bella has Usher syndrome.  Julia has cancer.  And, right now, today, they have each other.
 


 

Monday, August 4, 2014

Recent Happenings!

I had a huge gap in postings so here is a short recap of what our summer has been looking like as far as every day life!

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

Follow us on Facebook!

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!

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!

 

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 ;)
 









(gotta get one selfie in there)
 
 
 

Monday, June 9, 2014

St. Katharine Drexel

This is a "guest post" from my mom, Hunter's Nana:
 
This past weekend Elise, myself and Mrs. Karen Bonin (Principal of St Edward Catholic elementary school) took Hunter to Bensalem, Pennsylvania to the Shrine of St. Katharine Drexel.  http://www.saintkatharinedrexelparish.org/StKatharineDrexel.html  We have a special place in our hearts for St. Katharine as both Elise and her brother went to elementary school in New Iberia (at one of the schools that her Sisters of the Blessed Sacrament founded),  They have been an active part in praying for Hunter and supporting his journey.  St. Katharine founded schools for children and young adults all over the USA and Haiti.
 
Hunter did awesome on the airplane rides both there and back.  We were so happy about that, because he is quite active.  The cochlear implant device that he wears has a place to plug in earphones, so we brought a portable DVD player and he watched movies when he wasn't watching the clouds, playing games or snacking.  Really, he just did so well. 
 
We were welcomed by the Sisters of the Blessed Sacrament when we arrived there, several of whom used to be at St. Edward school years ago.  We went to mass Sunday morning in their chapel and to our great excitement and surprise (but not Mrs. Karen's surprise, as she had arranged it for us), a man named  Robert Gutherman was there.  He was St. Katharine's first Vatican-approved miracle that was necessary for her to be canonized as a saint.  In 1974 at age 14, Mr. Gutherman was cured of deafness in one of his ears (the other ear was fine) after a long and painful infection in that ear which finally culminated in an unsuccessful surgery.  He was told by the surgeon,  while in the Recovery Room, that he would never hear again out of that ear.  Young Robert continued to tell the surgeon that he actually COULD hear out of that ear, and finally his hearing was tested and they discovered indeed that he did have hearing in that ear.  The medical experts called the cure medically inexplicable.  Enter God, right?  Because with God all things are possible!
 
Mr. Gutherman had been an altar boy at the Mother Katharine Drexel chapel (where we met him) and his very large family had prayed often to Mother Katharine for his healing and relief of his severe pain.  Their local priest had them document all that had happened and it was eventually forwarded  to Rome.  He was interviewed and examined many times, and in 1988, 14 years after the miracle happened, Pope John Paul II declared his as the first documented miracle of Katharine Drexel.  AND WE MET THIS MAN!!!!!  He told us he had been praying for Hunter for 2 years and following his blog, since Mrs. Karen told him about Hunter. She had met him there on a visit two years prior.   We were overwhelmed with gratitude.  It was such an honor and privilege to meet him.  He came with us to the crypt of St. Katharine where we sat Hunter on it, prayed for him and then Hunter said a Hail Mary and Glory Be like a pro!  Mr. Gutherman stayed and visited with us a little longer, such a kind and interesting man.  We are so very grateful for his prayers and keep him in ours.
 
St. Katharine's second Vatican approved miracle was also a cure of deafness in Amy Wall, a one-year-old girl.
 
The rest of our trip included wandering around the beautiful grounds, visiting with the sisters and........entertaining an active 3-year-old.  He had them all so charmed, especially when he would say his prayers.  And he didn't knock anyone over who was in a wheelchair or using a walker, that was a grand success.  Because running is what he does, there is very little walking.  lol.  We also brought him to the altar at the chapel and sat him up there where Sr. Agnes had him touch the tabernacle, telling him  that Jesus lived in there and asking for prayer and healing.  It was such a beautiful witnessing. 
 
We are thankful to Mrs. Karen for accompanying us and giving us so much history (and help with Hunter)  and the sisters for their hospitality and letting us be a small part of their lives.  There are many sisters who live there in various states of retirement/active work/good health/bad health.  They devoted and still devote their whole lives to serving God and community , and we were blessed just to be in their presence. 
 
Hunter went on the elevators there about 172 times.  It was ALLLLLL he wanted to.  Well, except go on the bus, the train, the escalator and the airplane at the airport.  We soaked up so much from this experience and all too soon had to return home.  God is good.
 
Here are a few of the pictures from the trip-
 




Here are a few pictures of the grounds:


 

 
And the breathtaking Chapel:
 
 
Here is a picture of Mr. Gutherman and Hunter at the Shrine:
 
 
And the wonderful principal at SES, Mrs. Karen in there as well :)
 
 
 This was when Hunter was saying his prayers at the Shrine:
 
 
And a few more at the Shrine:
 

 
Hunter, Nana and Sister Agnes at the Altar:
 
 
Saint Katharine Drexel:

 
Hunter with Sister Michelle who was principal when I went to SES:
 
 
Hunter with Sister Agnes:

 
 



 
 
 
 
 
 

 
 
 
 
 
 

Tuesday, May 27, 2014

Cochlear Aqua+

Ladies and gentlemen... look what Cochlear has come out with to make a our lives a whole lot easier :) It's a cover for the processor and a different coil that Hunter can wear and not have to worry about getting it wet! (and it still works today, PHEW!)

 
(Picture and video are posted mainly for my CI Group friends)
 
Here is a video of Hunter wearing it yesterday in the pool!
 

Wednesday, May 7, 2014

Seeing the world

I just watched a video of a little boy named Hunter who died of cancer this year. He loved the WWF and got the chance to meet his biggest hero and "wrestle" on stage with him, and after one of the real fights that the wrestler won, he went up to this little boy Hunter and thanked him for the strength he gave him to keep pushing and asked him to fight just as hard. Whoa. What a tear jerker.

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 ;)

This dude finally let me put a hat on him when the sun was in his eyes Sunday afternoon :)


elise

Tuesday, April 29, 2014

Happy Easter 2014

Our Easter holidays were definitely eventful... Poor little Harrison got RSV coupled with a double ear infection and Hunter broke a bone in his foot while jumping during his Little Gym class. The on-call doctor and I got to know each other REAL well over Easter :/
But we are almost all nursed back to good health!

This easter bunny picture was right after Harrison coughed so much he threw up his bottle.... BEFORE we knew he had RSV.
 
 
And this Easter Day picture, well it wasn't exactly what I had in mind but that's what I get when I try and force a decent picture out of the two of them!
 
 
My little champ in his boot for the broken bone. He has already mastered running in it, although I giggle watching him do it.
 
 
Sweet Harrison feeling better!
 
 
 
And...My boys :)