6 Months Post Activation

Saturday, October 27th marks 6 months since my baby boy first got his "ears" turned on. What an exciting new world everything has become to Hunter! I have been trying to keep a running list of words that Hunter is saying on a consistent basis, but we have lost count because there are so many! I am pretty sure it's safe to say that he will attempt to repeat anything to tell him to. And about 80% of the time, it sounds correct! Every day we hear 2-3 new words come out of his mouth, and he has even put a couple of words together here and there.

Our AV therapist did a progress test on Hunter last week at therapy, and she was amazed to see how far he has come in only 6 months. I think we are all pretty blown away at how far he has come. We never imagined that at 19 months Hunter would understand a majority of what we are saying, and repeating so many words after only hearing for 6 months.

As far as OT and walking are concerned..... we are still making baby steps, which means progress! He even stood alone for a couple of seconds at a friend's house this past weekend. We are getting there... 21-24 months, that's the average time frame for a baby with Usher Syndrome to walk. But I have said the one positive thing about walking with him and holding his hand is that we are able to talk to him so much, every step we take we are talking. Rather than a 19 month old running from us, we are with him able to teach him at the same time. So there is a positive. But I think we sleep just as hard as he does, because we go go go go go just as hard as he does!

Here are a few pictures from this past weekend. Great times with great family and friends!

Hunter's 1st pony ride!

Superman!

A little therapy pushing Kell in the stroller all by himself! And zero face plants I must add!

(This is the same boy who refuses to walk with any kind of walker at home.)

After one very busy day! (I love sleeping pics!)

Usher Syndrome Awareness Wristbands

Blair and I recently purchased these wristbands to help raise money for the Usher Syndrome Coalition. The Coalition puts on the Usher Syndrome conference every summer, and when Blair and I attended the one this past summer, I knew these people were real. Real in their every day struggles, real in the hardships their family members had faced, and most of all real in the passion that this group of people has to find a cure for Usher Syndrome soon! 

Each wristband is selling for $5 (without shipping charges) and all proceeds will go to the Usher Syndrome Coalition to help fund the services that they provide to those individuals affected by Usher Syndrome. There are two sizes, one is an 8 inch adult and one is a 7 inch child. Upon receiving these wristbands, I noted that the 7 inch fit myself more appropriately than the 8 inch, which was more fitted for Blair. So I would say if you are interested in ordering a wristband, the 7 inch is more fitted for women (I don't have a tiny wrist) and the 8 inch is more fitted for men. When I first placed the order for them, I ordered more 8 inch wristbands because the 7 inch were labeled child. But if need be, I can always order more 7 inch. 

The Usher Syndrome Coalition's website, www.usher-syndrome.org,  will soon put these up for sale with the option of paying through PayPal. It will also calculate shipping charges for those of you who don't live around Lafayette or New Iberia. I know people have been seeing the ones Blair and I wear and have been asking if they can purchase them now, so I figured I would put up a post about them now.

If you do not feel comfortable wearing them, that is perfectly fine. We just ask that you put it in a place to remind yourself to send up a small prayer when you see it. If you do wear it, please feel free to tell anyone who asks about Usher Syndrome everything that you know, and even direct them to my blog if they want to know more. Bringing awareness to this area is the first step in helping to find a cure. 

To order, please email me at HelpingHunterFaucheaux@gmail.com with the quantity and sizes. If you do not live in this area, I can mail them in a regular letter size envelope for a small fee. And if anyone wants to order in bulk, I can arrange that as well. 

Thank you in advance, we truly feel like this is going to be a huge step in educating people on Hunter's condition!

Blair and Elise Faucheaux 

Wordless Wednesday

Pumpkin Patch 2012

Hunter and Mommy

Tia (Marianna) and cousin Kell

If you all could have heard how many times we called their names to look at the camera, and this was basically all we got!

One decent shot of a zillion!

Super man and super daddy!

Hunter and Mommy before the twins' baptism, keep scrolling for double super cuteness!

Happy 2 Month birthday to sweet Greyson and Sawyer!

Our new handed down twice playhouse in the backyard. Completely new to Hunter!

Mapping and AVT

Yesterday, Blair, Hunter and myself made our way to New Orleans to see our wonderful audiologist to update Hunter's mappings (settings) on his CIs. Hunter is basically turned up all the way when he comes to volume. She does not believe that he will need to be turned up any more at this point unless we think he is not hearing like he should. We have one more setting that is a little louder, but we were advised not to switch unless we really think it's necessary. Then we have another setting that can lower the volume a tad bit in case we are in loud environments where we think the volume may be bothered by the loudness. Hunter was very cooperative at this appointment, considering we were approaching nap time. While we were there we also did a sound booth test where Hunter was sitting on my lap while the audiologist would project sound through different speakers in the room to see if he could tell where the noises were coming from. He turned for a majority of the sounds, while there were a couple that he was unsure about. But overall, she said he was doing wonderfully. She said that the rule of thumb is for a 20 month old to have a 20 word vocabulary and that we were all doing exceptionally well!

After this appointment, we made our way to Baton Rouge for AV Therapy. We had one tired little puppy who only slept for 20 minutes in the car, but he lasted a good 50 minutes before he was ready to head out of there!

Here is a short video from therapy yesterday (until he noticed the camera!):

And here is a video from the house to show Hunter's receptive language skills at 5.5 months post hearing:

Have a great weekend everyone. Our new twins are spending the weekend with us for their baptism, and Hunter will get some long overdue time with his Nanny :)

October 10th

October 10th-
"Nothing surprises God. He knew all about you before you made your appearance on this earth... in fact He planned your debut. He decided what color eyes you would have, how tall you would grow. He had a hand in the choices you made to become who you are. While you toddled around the house at two years old, He looked into the future and saw the plans He had already laid out for you.
Nothing surprises Him, He knows the beginning from the end. So, don't forget to talk to Him about the big choices you have to make... in fact, consult Him about every single choice.
He cares."

Blair and I went to talk with the priest who married us last night. It was an hour full of tears for myself. We just talked about the possibility of us having more children and the reasons we were feeling the way we were. We talked about Hunter and the immense amount of joy that he has brought to our lives. And we also spoke of the unknown future that is putting a cloud over us. I don't mean to make it sound like every day has a black cloud hanging above us. It's not like that at all. We live each day as though Hunter is a normal (almost) 19 month old, but the syndrome is always in the back of our minds. Although we don't let it define our lives, it's still there and always will be. I'm not sure how else to make it sound and look any better. It's just not a pretty cloud! I use the example of Hunter playing outside, which is almost every afternoon. We walk a ways through the neighborhood, and every time we turn around to go back, the sun is in our eyes. And I always cringe when we turn around, because I know the sunlight in his eyes is instant deterioration. He isn't at the age where he will keep sunglasses on his head yet, but I'm not going to prevent him from being outside. I can't shelter him from acting like any other child, to spare the minutes that he is facing the sun. I always try to remain in the shade, but the sun is a very hard thing to avoid. That is just one example of the constant cloud of a reminder that we have every day.

While Blair and I have not made a decision yet about more children, we do know that we need time to really prepare ourselves to full accept the territory that comes with whichever decision that we make. The age old saying that God doesn't give us more than we can handle has been told to us so many times. And we both know that whether we decide to have more children or not, whether we have another child with Usher Syndrome or not, that we can turn to God's strength and support and faith to give us the tools to take on whatever our future holds. One of those tools has been our family and friends in our lives. We know that if at any time we need a break, we need some alone time to just "be" that we have a dozen people waiting and willing to help us in whatever ways we need.

Last night before I went to bed I read by Minute Devotions that remains on my nightstand. I have to admit that I hadn't looked at it in a while, but I figured yesterday was the perfect opportunity to start it up again, and the above passage was for October 10th. This passage made it so clear to me, it was exactly what I was looking for. God is there, listening and waiting for us to hand it all over to him. We just have to be gracefully willing to accept whatever He gives us.

Friday Phone Dump

Yes, I am stealing the term "Friday Phone Dump" from one of my favorite blogs. Here are a few pictures from the past few weeks and a couple of videos from therapy this week. Excuse the skewed footage, I had to hide my phone behind a box so Hunter wouldn't notice it. (Also just a note, you can click on any of the smaller pictures I have posted in my other blogs and they will zoom larger.)

 

More children?

So I keep getting the same question over and over… when are we having another child? I would love to have another child, right now. But it’s easier said than done. There are so many things to consider. There’s a 25% chance that any child Blair and I have together will have Usher Syndrome. 1 in 4. And the phrase “there’s always a chance you can roll the same dice twice” just keeps playing over and over in my head.

I can’t imagine Hunter not being able to experience having siblings. We have always wanted a big family, at least 3 children. And I know I am a healthy, (somewhat) young woman who was blessed with the opportunity to be able to have children, but the thought of putting another child through something like Usher Syndrome really puts us between and rock and hard place. Every moment that I spend with Hunter, all the ups and downs, they are all worth it. He has brought so much joy to our world that I could never imagine my life without him. Do I wish he didn’t have Usher Syndrome, of course I do! But it has changed all of us and will continue to change us in ways we may never have known that we needed to be changed. I hope this helps us all to become better people, because I know it’s influenced me to try and become a better person. It’s made me take a second look at my priorities, and really determine what should and should not be labeled a priority in my life.

My good friend, Brandi, lost her 2^nd baby girl, Avery Kate, to SIDS last November. All she had ever wished for her oldest daughter, Hallie, was to have a younger sibling. And in the blink of an eye, her dreams were ripped right from under her feet. She prayed and prayed for another child and became pregnant a few months later. Her 3^rd baby girl, Aubrey Kathryn was born this week, on October 2, 2012 and she is a beauty. She sent me a picture of Hallie holding Aubrey this morning, and I completely lost it. Brandi has had so much faith through this entire situation and has had to just let go and let God, and she has been a true inspiration to everyone around her. She is an incredible mom to all three of those girls, and she is a rock of a friend that I wouldn’t trade for the world. This morning she told me if I put it in God’s hands, he will show me the way.

I had contacted the priest that married Blair and myself a while back to meet with him and get his take on the situation. If we want more children, I want to know what he thinks is the best way to go about it. Another mom from Alaska emailed me this week. Ironically I remember her and her son from the Usher Syndrome conference in St. Louis, although I never met them. But a very cute blonde curly haired three year old was running around the entire time, and I just wanted to squeeze him. His mom decided to take in a foster child who is the same age as her son. How much fun is that?! But on the other hand, how much is involved in that? I have a friend from work who is unable to have children, and he and his wife are looking to adopt from China. What an amazing experience that will be for them. But what path should Blair and I take… that’s one answer I don’t have yet. And until we are sure which journey we want to embark upon, we will have to let go and let God. We will have to be open to His guidance and accept whatever it may be. One child or three, it’s not about what we have always wanted anymore, it’s about what God gives us and what he thinks we can handle.