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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 :)
 

 
 
 
 

Hunter's 2nd Hearing Birthday

This past Sunday, April 27th, 2014 we celebrated Hunter's 2nd hearing birthday. I posted the picture below to my instagram stating how surreal his hearing world is to us. His language, his personality, his energy... I attribute it all to that one tiny miracle we were able to provide for Hunter. Without his CIs, I do not believe Hunter would be the outgoing, funny and blossoming boy he is today. We are so thankful for the gift of hearing.

 

Monday, March 31, 2014

Hunter's Individual Assessment

Good morning! It did take a while for me to get the assessment results for Hunter's transition from Early Steps to the school system, but it also took me a while to gather my thoughts and summarize the information into a post that normal people could understand!

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)

Listed Strengths:
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.



Love,
elise





Tuesday, March 11, 2014

Turning 3

I've been a little emotional lately. Hunter is turning 3 this week and as I recently posted this picture below to Instagram and it brought back so many memories of Hunter's first birthday.


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!


 
Here are a couple of short videos of everyone singing him Happy Birthday (one of the ten times!) and I'm not sure who loved it more, me or him :)
 
 
 
 
 
 


Wednesday, February 26, 2014

Hello 2014!

I apologize for not posting in a while... I've recently been called out so I promise I will be posting more in the future, ha!

I just caught up on a fellow CI mom's blog that I follow and finally got the update I have been looking for since before Harrison was born. This girl was pregnant for her 2nd child and (like me) had not had much time to post after the baby was born. Finally, the update I was looking for. It wasn't the outcome I was hoping to read, but it made me even more grateful to know that our sweet baby Harrison can hear. Her second child did in fact fail the newborn hearing test and the ABR test two weeks later. Wow. What a rush of memories that came over me from when Hunter was born. I can't imagine going through that again. It's a long hard road with a deaf child, but Usher Syndrome on top of that, the dark unknown future that lies ahead for Hunter, that's what would have killed us to have to face with Harrison. Knowing that another child's vision could be compromised would have been devastating. But we went into it knowing there was a 25% chance, so we would have welcomed him with loving arms, just as we did with Hunter. And the second round of CIs would have been a breeze compared to the first with Hunter. But again, we are forever grateful.

To say things have been busy lately is an understatement. Harrison had 2 cousins born within 3 weeks of him, so we have been visiting a lot, and everyone is getting baptized right now, including Harrison next weekend. Going back to work was not a huge adjustment for me. I work better on schedules and wasn't great at getting myself up and presentable when I was on maternity leave.
Here is a picture of Hunter and Harrison on their first day together at the sitter. Hunter was so proud to have Harrison at "work" with him! (He always says he's going to work at Nini's since Mama and Daddy have to go to work!)

 
Everyone wants to know how Hunter is adjusting to not being an only child anymore, and knock on wood, we couldn't ask for a better big brother! The first month or so he didn't pay Harrison much attention, and we were perfectly ok with that! We didn't force Harrison on him, and he warmed up in no time. He wanted to help feed and now every night when I ask Hunter if he's ready to bathe, his reply is always "I take a bath with Harrison?" So he has done really well. We still have our normal overly dramatic moments with him, but for the most part they are few and far between.
 
(Hunter loves playing with the phone at my mom's house and didn't want to leave Harrison out!)
 
Here are a few other recent pictures of the boys.
 

 
Hunter turns 3 in exactly 2 weeks. I can't even wrap my head around that! It is so true that some days  seem to go by so slow yet the years seem to go by so fast!


 
Harrison will be baptized next weekend at St. Joseph's Catholic Church in Milton near our house. We have an heirloom outfit that my cousins and I wore for our baptisms, and now all of our children are wearing it too. Harrison is next and I'm so grateful for this tradition :)
 

The following is a video of Hunter showing Harrison how to sign the ABCs. And this video is the ultimate preview of a beautiful sibling relationship in the works. This is why we had another baby, this is what it's all about for us as parents.

 
I will continue to try and post to the blog more updates about Hunter's progress, but we haven't had any real news to share lately except that he is still soaring with his language and vocabulary skills. We are in the middle of trying to sell our house and closing on the construction loan of our future home in New Iberia, so we are keeping ourselves pretty busy these days!
Hunter did go for his evaluation to transition from Early Steps (which ends at Age 3) into the school system. He went to big boy school and played in a classroom for 2 days, an hour each day, while 3 different ladies evaluated him. He was ALL over the place because there were SO many toys all around him, but did pretty well for the most part. We have a meeting tomorrow to get the results from the speech therapist, so I will relay that information as well.
 
And my daddy, Hunter and Harrison's Pappy, turns 60 this weekend. My daddy is the perfect combination of patience and motivation. He has worked tirelessly for everything he has and always made time to support everything my brother and I pursued.
Happy Birthday Pappy!