Harrison Charles Faucheaux

On Monday, December 9th we welcomed into the world our second baby boy, Harrison Charles. With his long blonde hair and big blue eyes, it was love at first sight. He resembles Hunter to the T when he has a hat on, but that long hair is what really sets him apart. Every nurse and visitor in the hospital commented on his hair, and I have to say I absolutely love it as well.

As most of you know, every child we have has a 25% chance of having Usher Type 1C. Being profoundly deaf at birth is the first sign of the syndrome. But the morning after Harrison was born, a sweet old man with white hair walked in our room around 7:30am to administer the newborn hearing test. It caught Blair and me completely off guard, but I think it was a good thing that we weren't waiting all day for the test. We informed the man that our first son did not pass his newborn hearing screen and how important this test was to us because it would pretty much tell us whether Harrison has Usher 1C like Hunter. Needless to say, he passed with flying colors :) Our baby boy Harrison can hear and will not have have the cloud of Usher Syndrome over him for the rest of his life. The decision to have another child was a huge one for us, but we put it in God's hands and were willing to accept another child with or without Usher Syndrome. But thankfully, for his sake, passing the newborn hearing screen is a pretty good indicator that he does not have it. We will most probably retest his hearing at 2 months, but we have definitely noticed differences in how he reacts to sound as compared to Hunter.

And big brother Hunter has been adjusting a little better than expected. He still has his 2.5 year old moments which are harder to deal with now with a new baby at home, but he has been ignoring Harrison for the most part. Which I'm ok with! I think once he gets a little older and is able to interact, Hunter will show more interest in his baby brother.

(Above photo by Nicole Bell Photography)

With a new baby at home it's hard to post when all I want to do is sleep, but I will try my best to keep up!

Happy Holidays!
-elise

Fall 2013 Family Pictures

I have to say that the following pictures paint a perfect and beautiful picture of my family of 3. (A special thanks to Kent Fleming who is always so patient and does an amazing job!) The day we took these pictures, waking up from naptime was rough, but we got through it. After half an hour of asking him to smile and him responding in his "whiny ways" he finally came around.

 

We have a lot of rough moments with this age. It's not easy. And it's not because he's a child with special needs, it's because he's a child. He has good days and bad. Sometimes he wakes up on the wrong side of the bed, and the next morning you could swear he's a totally different child.

Blair and I are still learning what works and what doesn't. We are having to step out of what we know and explore other options. And what works one day doesn't always work the next. He keeps us on our toes in more ways than one all waking hours of the day.

 

But I wouldn't change a single thing.

 

The gift of being a mother is something that is immeasurable. The up side is that the good times outweigh the bad. And when he is in a good mood, you don't just have a good time with him, you have a great time. He loves an audience, loves to entertain, and loves attention!

He loves to talk, he loves to dance (well jumping is his form of dancing) and he loves anyone who is willing to do all of that with him!

Mama has had to lay low lately on the dancing, but only because I am about to experience again the joy of becoming a mother to another baby boy. And it makes me smile from ear to ear. I can't wait for my heart to be twice as big with love from another angel being born into our family.

 

2.5 Year Speech Evaluation

Since Hunter has been attending AV therapy every 2 weeks for the past few months, it has taken a couple of months to issue and score his progress tests, but we finally got the results back last week and I wanted to share them.

Hunter was issued a general language test, an articulate language test, a receptive vocabulary test and an expressive language test.

For every language test, 100 is dead average. Anywhere between 85 and 115 is average. On the articulate language test (which is expressing oneself easily in clear and effective language), Hunter got a 93, which is in normal range. He got 28 errors which is perfectly normal for a 2.5 year old. And that's a normal hearing 2.5 year old, not a 2.5 year old born deaf.

His vocabulary test, the receptive vocabulary (vocabulary that he understands using pictures, and what he understands from what other people are saying). 100 is average and he got a 108, which is 8 standard points above average.

Then there is expressive vocabulary (show him a picture and say what is this). 100 is normal, he got 121, 21 standard points above normal, so he did exceptionally well on that.

Last test was overall language, it’s a little broader than just vocabulary. It’s his ability to put words together, grammar, sentence structure, just a more broad view of his whole language development. It involves auditory comprehension and his expression, what he’s able to produce himself. His understanding, expression and total all fell above the average line. He got 111, 11 standard points higher than normal so all of his scores are looking very good.

Hunter's AV therapist tells us that he seems to be right on track.

There are certain letters that he would say at the beginning of a word, like a w for an r, which is normal for a 2.5 year old. He says w for L. But those don’t development until much later. At the end of the word he would do a k for a g, which is normal as well. Nk for ng, sh for ch, and t for j at the end of the word is appropriate for his age.

Even though we got the great new that Hunter has "graduated" from AV therapy at this time, we agreed to have a couple more sessions in order to transition his therapy sessions to take home therapy ideas to keep up with Hunter at home.

Shelley (our original AV therapist) called in to talk about Hunter’s progress, and she said Hunter’s vocabulary scores are probably her highest ones yet. She acknowledges our support system and all of the people in Hunter’s life who are so involved in his progress. She complimented us getting on board right out of the gate, not hesitating about the implants and the therapy, and making it a part of our everyday lives. Almost every person in our family has joined in on these sessions and they know what kind of conversations to have with Hunter and the questions to ask him to constantly keep him moving forward. And even though Hunter’s sitter wasn’t 100% on board with strictly AV therapy, she has really come around and pushed Hunter further than any of us.

She did warn us that testing of a 3.5 year old varies greatly from a 2.5 year old. A 2.5 year old should understand around 500 words, and at 3.5 it more than doubles to around 1200+ words. She said not to get comfortable that he is all caught up and to keep reading to him and keep teaching him. She said a 2.5 year old and a 3.5 year old have totally different expectations.

They want us to know what to expect and to know what to look for when we are reading to Hunter every day so they will give us the tools to know what to expect. She doesn’t expect him to move down from the normal range, but if he does it may be because of how much they expect out of a 3.5 year old. She just keep stressing not to stop doing what we are doing.

One thing going for Hunter is that he has a fantastic memory. When we read him books, the following week he is reading bits and pieces from the book back to us. We can tell he isn’t actually reading the words because he's not even looking at the words, but he remembers bits and pieces from each page just from the repetitiveness of hearing the book for a week straight every night.

I always get nervous when people ask me where Hunter will be going to school and when he will start. #1, he’s my baby and I’m NOT ready for him to start school. Or even a preschool at that. A lot is riding on Baby Harrison and whether or not he is hearing. As most of you know, our 5 year plan includes building a house in New Iberia near my parents and Blair’s. But if Harrison needs implants like Hunter, we would like for him to stay at Nini’s for at least 2 years so that she can help us get him where he needs to be. She is irreplaceable and 100% worth staying in Youngsville for that period of time if need be. Being near family is super important to Blair and myself, and we know we will get there eventually, once we make sure our children are where they need to be. If we do stay in Youngsville for another few years, I would like to look into putting Hunter in a preschool starting possibly in the fall. But these are all factors that will be decided after Harrison is born. Again, he has a 25% chance of having Usher Syndrome like Hunter, and whether or not he passes his newborn hearing screening in the hospital will tell us, obviously, whether or not he is deaf, but will paint the bigger picture as well as to whether or not he will have Usher Syndrome.

Shelley also mentioned an amplification system that a lot of preschool teachers use when they have a hearing impaired child. It’s a very little amplifier that makes a world of difference to bring the teacher’s voice above everyone else’s in the classroom. It’s a little uneasy that we have to start thinking about this, but it’s a part of the Cochlear implant process and just comes with the territory. As amazing as this device is, it’s still a device. It’s not a natural form of hearing or anything close to that. It’s Hunter’s way of hearing, and a classroom setting is not something he has had to adapt to yet so it’s going to be a way for Hunter to have to really concentrate on the teacher to be able to hear what’s coming from her mouth with a lot of background noise going on at the same time. He has always been in a smaller setting (in-home sitter) with not a lot of children which was exactly what we wanted when he was learning to hear and speak. The next step, is learning how to hear in a crowded environment on an every day basis. He will have to learn to differentiate the teacher’s voice from other children’s voices, as would any hearing child, it just may take a little longer for Hunter to master this skill that seems second nature to his hearing peers.

I will be posting more soon, including recent family pictures :)

Sorry it has taken me so long to post an update, but as always, thank you for being a part of our journey!

elise

Hunter 2.5 Years Old

Today, September 12th, my baby boy turns 2 1/2 years old. It's crazy to say he's 2 1/2 when people ask how old he is... bitter sweet I guess. We got some good news recently from our AV Therapist that Hunter does not need to go to therapy in Breaux Bridge every week anymore. We will cut back to every other week and make sure Hunter is staying on track for a few months before possibly taking him out altogether. He really has been doing so well, but I am scared that when he turns 3 and isn't eligible for Early Steps speech therapy anymore that he may start to get behind. Therapy twice a week has been a part of our routine since for almost a year and a half now, so another bitter sweet thing to be able to graduate from weekly services, but a little anxiety as to how Hunter will keep up with others his age.

Here are a few fun facts about our big boy that some may not know:

Hunter's favorite food lately has been Donuts! We pass there on the way home every day and I have to remind him that Donuts are only for breakfast, and only once a week!
Same goes for Icees, he asks almost every time we pass a gas station, but we only get Icees on Fridays!

Hunter is a little OCD (if that's the right way to put it). He HAS to be the one to press the garage door button every time we leave the house and every time we get home. (And requests the same at every house we go to) If we accidentally forget we have to close it again and then let him press it to re-open it. In the mornings, he presses it near the door and we run to let him "push" it open and tell him how STRONG he is!

At night, when we tuck him in to bed (sans ears) he has to have his barney pillow pet, his mini pillow under his head, his santa in one arm, his bear in the other, and all of the other random stuffed animals on top of the two blankets he is tucked in with. Then he is still yelling for his bear, which we consistently point out is in his hands and he nods, but still yells every time we walk away. It only lasts 5 seconds, don't worry. Then in the mornings, if he is already awake when we go in there, he has to hand us every single stuffed animal and blanket and pillow and then expects us to have two hands left to get him out. I have started dropped most items to the floor when he's not looking. Weird cookie. ;)

Hunter LOVES swimming. He is quite the dare devil who isn't afraid to jump in when we aren't looking or flip into the baby pool all by himself. I don't know what we will do on the weekends when it gets too cold to swim!

He seems to understand (I think) that he will have a baby brother named Harrison. At night we bless Hunter, Mama, Daddy and Baby Harrison and occasionally he asks him to wake up and come out to play. He also points to my belly and says- Mama has baby! It will definitely be interesting to see how he reacts in December when Baby Harrison really does make his arrival!

Hunter is also just like any other 2 1/2 year old boy who can get pretty defiant when he doesn't get his way (or when he just decides to be). It's been a challenge, but this too will pass! As much I want him to grow up and move past this phase, this age can be really fun (again, when he wants to be!)

Have a great rest of the week and weekend, thank you for following!

Eye on Jacob Fundraiser

As most of you know already, we are helping throw a fundraiser with the Eye on Jacob Foundation to raise money to support research to find a cure for the vision loss aspect of Usher Syndrome. This event will include a silent and a live auction with some things you won't want to pass up! Various trips to places such as Hawaii, Alaska, Las Vegas, Miami Beach and Gulf Shores will be auctioned off so you don't want to miss this! Please see below for the when and where. For tickets to the event, you can go to www.eyeonjacob.org and for the Little Gym event and the Raising Cane's event you can just show up!

Thank you all for your continued support for this great cause!

 

 

 

 

 

 

Progress... All around!

I was reminded over the weekend that I haven't really had a good progress post lately. I haven't really had time to sit down and document it all, because it's a lot! Also, since starting my new job I haven't taken Hunter to therapy yet so I haven't gotten any videos of him in action. I took him for the first time in a couple of months yesterday, so I will post videos below.

But-- just a couple of weeks ago, I went to pick up Hunter for daycare because Blair had something after work, and dude signed and sang (in unison) about 5 nursery rhymes on the way home. My head was spinning. Where in the world did he learn these nursery rhymes?! Well as most of you know, our sitter is a big advocate for signing, so it clicked. She was obviously the one who had been working with him. And these were nursery rhymes that I probably haven't heard since I was little because he ended up teaching ME the words!

Hunter is also obsessed with the ABCs. And that's probably a major understatement. It's almost like a song he can't get out of his head because he sings it ALL the time! A few weekends ago we went to Blair's friend's camp where I had to sleep in the same bed as him, and at first I had on a night light. Well, no ears on, he is signing and singing the ABCs in the air. Ok, once was fine with me. Then he sits his Santa Clause up and starts singing to Santa. It was precious! Anytime he sees a mirror he is signing and singing, when we FaceTime with family and he can see himself in the big picture before they answer, he is signing his letters. Then last week he was singing it and I hear, A- Apple, B- Ball, C-Car, D- Drum Drum Drum, E- Elephant, F Friend... :) I have no idea what we would do without his sitter, Nini. She is amazing. She is constantly pushing him to learn more. She tells us all the time that his lack of attention to play on one thing for an extended period of time is attributable to him just getting intellectually bored with one thing and wanting to learn something else. As if a 2 year old isn't exhausting enough, but he is in constant motion from the time he wakes up (which is sometimes 5am) to the time he goes to bed at 8pm (which could be much later if we let him).

But overall, we couldn't be happier with his progress thus far. I never would have imagined the day we found out that Hunter was deaf, that he would be living just like a normal 2.5 (yes, 2.5 in September!) year old. God is good and has blessed us with a hard worker and family members, friends, sitters and therapists who all contribute to his continued success.

The first video was in the car yesterday on the way to therapy. I promise it was at a really long red light. It's 2 of the nursery rhymes that he knows.

And the next 2 videos are from AV Therapy yesterday afternoon. In the first one Hunter is identifying different objects (kind of a vocabulary review), and in the second one it's Hunter repeating 3 syllable sounds.

And here is a sneak peak of me and baby Harrison Charles at 23 weeks today!

(Semi) Wordless Wednesday

This summer has been filled with lots of outside time with family and friends, and lots of swimming for our little fish! Hunter is so lucky to have such involved grandparents, cousins, aunts and uncles! Blair and I are too :)

 Cajun Palms- July 2013

For those of you who know Hunter sleeps with a stuffed Santa every night (equivalent to his baby doll- I even caught him signing the ABCs and 123s to his Santa the other night in bed... then saying OK? OK!) Needless to say, he loved the "Christmas in July" camper at Cajun Palms!

This past weekend we went to Blair's friend Chris' camp at Lake Dauterive, and Hunter loved being in the boat because every time he sees any body of water he says "OOOO da Bayou- Boat pass Bayou!" Whether it's a river or the beach, to him, it's all the bayou :) 

We are working on smiling, for now "Cheese" comes out every time I try and take a picture. Sometimes it's over exaggerated (above) and sometimes I catch the end and get a good smile (below) 

And we have been spending lots of time in our yard. It's very nice in the morning and after 6pm. So glad the sun sets on the other side of our house so it's not scorching when we go out there!

A little pedi...

A little cleaning house...

And a little watering the flowers...

But really making a mud pit. Either way, the hose went a long way :)

We aren't ready for summer time to end, but we are ready for fall like football weather. 

Baby Harrison Charles Faucheaux is 21 weeks and kicking (literally, all the time). Hunter calls him "Barson" but we are working on it...Hehe, it's kind of cute. He seems excited to become a big brother! 

I can't believe it's almost August already... time is flying by!

FFB Conference/DC Getaway

 

This past weekend, Blair and I planned a trip to go to the Foundation Fighting Blindness 2013 Visions Conference. Since it was held in Baltimore this year, and my good friend Noelle and her husband Kevin live in Arlington, VA (an hour or so away), so we figured we would kill two birds with one stone and stay with our friends while attending the conference. We also had another couple friend, Stephanie and Brandt, who made the trip up there with us for a little vacay. It was nice to spend the weekend with my childless friends. As much as I love talking about Hunter and talking to other moms about their children, I enjoyed the typical adult conversation where Hunter's name didn't come out of my mouth every 5 minutes. (just every hour or so!)

 

We got there late Thursday night, after a little gate mishap, right Steph? ;) and left yesterday morning. Kevin and Noelle are the ideal hostesses. A souther lady and a southern chef, what more could we ask for? Their new house truly felt like our home away from home. I don't think I went to bed before midnight every night, but it was worth every minute of catching up.

Blair and I woke up early Friday morning to head to Baltimore. We got there early so had breakfast and walked along the water in downtown Baltimore while doing a little shopping.

 

The opening luncheon was accompanied by an amazing guest speaker. His name is Craig MacFarlane and he has a website called cmpride.com. He lost his vision at the mere age of 2 1/2. He went completely blind. He turned his vision loss into inspiration for the world. Craig went on to become a world-class athlete winning over 100 gold medals in a variety of sports (the majority against sighted competition) including wrestling Internationally on behalf of his native Canada, downhill skiing, water skiing and track & field. He is a magnificent motivational speaker and makes you really change your perception on blindness. I will never forget what he said for those parents out there with blind children- he said his mother didn't know how to raise a blind child, so she just raised a normal child. And that really hit home for me. He said not to limit our children, not to try and protect them more than a regular child because it will give them more independence, which is something that blind people lack the most.

 

Here is a video talking a little more about his life, it's truly worth taking a moment to watch.

 

http://youtu.be/RuzHML7SHUk

 

After the luncheon we broke into different sessions, one being an Usher Syndrome group where I actually got to meet a few of my fellow members of the Usher Syndrome Coalitions Board of Directors and Governmental Relations Committee. They talked a lot about genetic testing and the basics of Usher Syndrome, including the different types. They opened most of the session up for questions, which was nice. So I asked the doctors if there was anything at all that I should be doing with my 2 year old who has already been diagnosed with Usher Syndrome, 1C. They said at this point, he is too young for any types of Vitamin A treatments or any real extensive exams of the eye because at age 2, patients still need to be sedated to be given the test. They also pointed out that a well balanced diet is the most beneficial thing for a child right at his age.

 

The next session we went to was on Vitamin A treatments for patients affected by retinitis pigmentosa (the vision loss aspect of Usher Syndrome). The doctor who spoke for this session developed the treatments and truly has the data to back up his success in his patients. While other organs can be affected by these accelerated doses of Vitamin A, such as the liver, he does not allow patients with any liver issues to received the treatment, and he does not recommend more than 2 alcoholic drinks a day by anyone receiving the treatment. Now this treatment cannot be given to anyone under 90 lbs, so this is not anything that we would be able to look further into for a few more years, but it was nice to actually be able to hear the doctor talk about it.

 

I'm not sure if the travel or the baby was giving me headaches, but when I woke up with one on Saturday, after having one all day Friday, we were sure we weren't going to make it to the second day of the conference. The drive on Friday took a toll on us, and driving Noelle's car made me a nervous wreck. So we decided to spend the day in DC with our friends, and it couldn't have worked out better. We feel like we got all the information we really wanted on Friday, we got better educated, but we also know that Hunter is too young for anything at this point.

 

Here is a picture of Blair and me in Baltimore.

 

 

When we got back to Arlington Friday night, my WONDERFUL friends had a Baby Harrison Celebration dinner for us, and it was absolutely perfect. I have some pretty great friends :) PS. Harrison Charles is the new baby's name!

 

Brunch near the Eastern Market in DC on Saturday

 

 

A little sun :)

 

And dinner on the water in Georgetown Saturday night at an amazing restaurant called Farmers, Fishers and Bakers. I HIGHLY recommend this place for anyone in the area!

 

 

And back to real life on Sunday. It was a great trip all around!

 

**Coming 12.12.2013**

It's a....

 

Hello, Summer!

This past week Hunter took swimming lessons all 5 days. The beginning was a little rough, on all of the children. It was 4 two year olds, so there were lots of tears and lot of "Mama!!!!" being yelled from the water. But everyone did so great and by the end of the week you could tell they were more comfortable in the water than they were at the beginning of the week. And being that my parents have a pool, we were insistent on having some sort of swimming lessons. The biggest thing Hunter learned during this week was how to grab on to the side of the pool, which could be a life saving move! Hunter took with his cousin Kell, which we thought would help to have someone there he knew.

I was a bit nervous because we were going to be taking his ears off to get in the water. We have been taking them off at my mom's but this was a new person he had never met before. And every time he was waiting for his turn, like a broken record Hunter would say "Kell turn" because he did not want to be next! But by day 4, he finally started saying "Hunter turn", even without his ears on. The instructor would tap him 3 times before he would go under, or count to 3 with her fingers. Then she would blow in his face so that he would hold his breath before going under. I told her to give him a thumbs up when he came up from the water because he's a big fan of the thumbs up and good job. And even in the middle of his screams he would give us a thumbs up. And when he saw me videoing him, he would even say "Cheese" in the middle of screaming and trying to hold on to the wall!

Here are a few pictures from the beginning of the week:

Here are Day 4 videos:

And here are a few pics and videos from Day 5!

He felt a lot more comfortable during Day 5 and even this past weekend on my mom's house.... he was entirely too good to just sit on the steps anymore. He was like a little fish! 

Oh and we insist on sunglasses at my mom's every time we are in the pool. We ALL wear them together!

Hunter singing Happy Birthday to You

My video didn't upload in the last post, so here it is :)

Memorial Day Weekend

These days, Hunter in public can be hit or miss. Sometimes he will sit in a high chair for an hour, no complaints, and sometimes he wants out the minute he gets in. He is in constant.motion.all.waking.hours. Since our beach trip last summer, Hunter hasn't really been on a family trip so we decided to go to the Audubon Zoo and Aquarium of the Americas with our friends Courtney and Chris and their 2 year old James. Hunter and James get along very well and feed off of each other, so we knew it would be a good time with the two of them. It's still a lot of parallel play at this age, but they definitely know when each other is there and ask where they are when they are apart.

Saturday we started at the zoo around 11 and left around 2. There were a ton of people, but it was so big that you could hardly tell. There were lots of shaded areas as well, which was nice in the 86 degree weather.
Here are a few pictures from the zoo:

Here are a few pictures from dinner, and a video. We lucked out and picked a place with a completely empty ball room upstairs where the daddys took the boys to run pretty much the whole time we were there!

The boys found a mic upstairs, and while James was singing Life is a highway, Hunter was running, and running, and running and running. Until he finally got the mic, and broke out into HBDTY! Haha. They reminded me of Sophia Grace and Rosie, the male version!

And a few pictures from Sunday at the hotel and the aquarium. It's true, temper tantrums followed us to New Orleans, but overall we had a GREAT trip and are so glad we went!

Yes. Santa makes all trips.

After a great weekend in New Orleans, we spent Memorial Day by the pool at my parents' house. ALL Hunter has been talking about for weeks now is the boat behind Pappy and Nana's house that he saw. So Blair put his boat in the water to take Hunter for a ride, but he cringed as we walked towards the wharf, whined because he appeared scared to death, and he never set foot in the boat, after all that! We tried.... maybe another time :)