8 Weeks Post Activation- "Mama" Footage

8 Weeks Post Activation

All I have to say this morning is that Hunter said "Mama"... And I could scream it from the mountain tops! In the midst of packing for swimming lessons while Blair was feeding him breakfast, there it was.... "Mama" :) I just stood there and smiled. I couldn't have been happier. And he said it more than once. The thought didn't even cross my mind to video it, and I think it's because it was just such a heart warming moment that I just stood there and took it all in. I love being able to share these milestones with you all, but in the moment I loved how it was just us. I do have the perfect little family, the perfect family for me :)



Wordless Wednesday

Happy Father's Day!

Daddy and Hunter at The Little Gym

Mommy and Hunter at swimming lessons

I hear that!

Where's Hunter?

Out like a light :)

Vision Research Petition

https://secure2.convio.net/ffb/site/Advocacy?cmd=display&page=UserAction&id=195

I know there are tons of petitions out there these days, but I am sharing this one because this one pertains to vision research. Something that is very much needed in order to prevent Hunter's vision loss. Please take a minute and sign this petition, and if you want to include a personal message, simply put- For Hunter Faucheaux. Every signature COUNTS!

Thank You!

Bu bu bu bu bu!

Anyone who has played with Hunter knows that he is obsessed with bubbles. We use them in almost every therapy session when he needs to pull it together because we know he just loves them! This technique where we count to three then wait for Hunter to make noise has tremendously progressed since he has been activated. He came home from the sitter yesterday babbling the B sound, so we thought it would be the perfect time to pull out the bubbles! Take a look at this video and see a miracle in the making :)

Just this past Monday I got a call from our Early Steps Speech Therapist. She used to work with our sitter when she was the ST for another little girl there, so I know they work very well together. But when she called, she said she wanted to sit down with Blair and myself before moving forward because she wanted to discuss her form of Speech Therapy. In not so many words, she told me that she does not agree with AV Therapy and that if after we talk, if we decide not to do what she knows, then she probably will not be able to service Hunter. Talk about stuck between a rock and a hard place. I left my office in tears just feeling like everyone around here, including our sitter, just don't have any faith in AV therapy. Although I have to say the sitter has done leaps and bounds towards stopping signing for us, and she is willing to give AV a shot. But she is a true signer at heart. When I called our friend who used to work with the school of the deaf to talk about it, she told me, "As bias as I am towards sign, as much as I love to sign, I am also bias towards whatever the parents' decide is best for their children. And if AV therapy didn't work, it would have died out a long time ago". And I couldn't agree more. I don't think AV therapy is as common around his area because there is only one certified AV therapist in the state. So all of the other speech therapists around here go with what has worked for them in the past, and don't seem very willing to try something new. All in all, we decided that Shelley, our AV therapist would give the ST a call before we meet with her. That way they can talk their therapy lingo, and Shelley can educate the ST on what AV therapy is all about. She thinks it's just about putting toys in a box and shaking them while making noise. It's so much more to that, and she doesn't even know it! By next week, I hope to have everyone on board. This video is proof that talking to Hunter is what is going to get him to talk. Like Blair said, why would I sign the word "ball" to him 5 times and show him a ball, when I can say "ball" and show him a ball.

We are sticking to our ground on this one. And I am going to stand up for what we believe Hunter needs. And as I told the ST, this plan isn't set in stone. If things are not progressing like they should, we can always change the plan. But for now, it's been 6 weeks and we've already seen progression. For now, this is what we have decided to do!

6 Weeks Post Activation

With 4 therapy appointments this past week, and one VERY attached to his mommy almost 15 month old, it has been quite an eventful past couple of days!

Tuesday we had the Early Steps speech therapist over, Wednedsay we went to Shelley with Blair’s Aunt Monique and his cousin Kagon, who was a major help by the way, Wednesday night we had Harriet over for play time with our Special Teacher, and Thursday our OT came over to work on Hunter’s balance and walking.

As I mentioned above, this week has been allllll about Mommy and NOT wanting to let go. Speech therapy was fine, AV Therapy was decent, and then our Special Teacher appointment was a total disaster! So Mommy decided to stay away for OT to minimize the drama that is associated with Hunter wanting to be held by his mommy all day every day! I know everyone says it’s just a phase and to just love on him and enjoy it, but it started to drive me a little crazy when I could not get a single thing done without Hunter crawling up my skin!

Let’s just say he wasn’t in the mood to use his voice very much as therapy this week either, but we have a few new discoveries since turning up the settings on his ears.

Here is one video to show how he points to his ear now when he hears things. It’s adorable because since he got activated that’s what we always do when trying to make him listen, we point to our ear and say “I hear that!” And now he does it as well J

And our next consistent discovery is that Hunter knows that his name is Hunter. I couldn’t be more excited for him, and it’s ADORABLE when he turns to his name. Here is a short clip of that as well.

So for this week, needless to say I’m glad it’s over. I am determined to focus on what he is doing rather than what he’s not for the time being. Oh, and our OT said his balance has improved significantly since her last appointment with him. We are working on it, and it will come…. Baby Steps J

You ROCK!

A friend at work sent me a post about parents of children with special needs, and it really hit home. I feel 100% guilty for admitting this, but just yesterday I couldn't help but feel jealous of my friends and family that have, per say, "normal" children.

Yes, it's a real thought and feeling that I get when I'm alone going over how many appointments we have a week....

When I have to leave for work at 6am to make sure I can get enough hours in to leave early for AV therapy in Baton Rouge.

When I have to make sure we have charged batteries for an overnight trip somewhere.

When I have to make sure we have clean undershirts to clip the battery packs to the next day.

When I have to pull over to stop Hunter from eating his ears while we are in the car. 

When I have to follow Hunter around the Little Gym because his ears fall off every time he lays or rolls or "plays" or anything.  

Those are only a miniscule of instances where I catch myself being selfish about the situation and wishing we didn't have all of this lagniappe stuff added to our daily routine. But all in all, I know we had Hunter for a reason and one that already partially has and will continue to reveal itself in the years to come.

Blair said one time that he wouldn't trade Hunter for the world. And what he meant was, he would never trade the deaf Hunter for another child. But he would trade the deaf Hunter for a hearing Hunter in a heartbeat. Only to save him the grief and uphill battle of being deaf.

Here is the post I was referring to at the top. And to my mommy friends that have children with special needs, I know you can relate to just about 99% of the things listed below. So to those of you with "normal" children (I am not trying to crucify you, whatsoever).... I'm just saying that you may get tired of the long list below, and you may feel a bit jealous that you have never experienced some of the these things before. But just like the Beauty of Holland, us "special needs" mommies have our own moments to share as well. I cried and I laughed while reading through this post below. I hope you all enjoy it as much as I did. And just remember, Sophia's Mom, E's mom, Evynn's Mom, Madison's Mom, Aiden's Mom, Sawyer's Mom, and Landon's Mom (to name only a few).....you are not alone.

YOU ROCK.

Yes, you.

And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.

What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.

You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you, kid.

You rock because you spend so much time preparing for what look to the world like tiny, insignificant moments. Because you know that there are no such things as tiny, insignificant moments. because you SEE miracles in your child’s smallest victories. Because you celebrate simple successes. Because you know how hard they are won.

You rock because you show your child patience even when you feel N.O.T.H.I.N.G of the sort.

You rock because you create a hard shell for the world, but remain tender for your child.

You rock because you have learned another language. Or two. Heck, you even speak Abbreviate – ASD, IEP, DSM, ADHD, ABA, BCBA, BT, RDI, GFCF, ADOS. See?

You rock because you look out for each other. Because you treat every child as if he were your own. Because you know that it really does take a village to raise a child.

You rock because you appreciate the people who make up that village. Because you see God’s angels along your path – and recognize them for who they are. And tell them how much they matter.

You rock because you don’t ever stop pushing and encouraging and expecting and demanding and believing and celebrating.

You rock because you know how important it is to take time for YOU.

You rock because you refuse to let anyone define your child by his challenges. Because you know there is so much more to who he is than a label.

You rock because you are a different kind of parent. Because you know that just because your child doesn’t have words, that sure as hell doesn’t mean she’s not communicating.

You rock because you do everything you possibly can to figure out what it is that she’s saying.

You rock because when a doctor says, “It’s never been done before,” you hear, “Good, it’s possible.”

You rock because when you get angry, you use the anger to propel you forward. To make waves. To create change. To make life better for your child.

You rock because you talk. Because you change hearts and minds and laws.

You rock because you’re not afraid to think big – really big when it comes to your kids. If programs don’t exist, you will create them. If the system doesn’t work, you will change it.

You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.

You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.

You rock because you respect one another – even when you disagree.

You rock because you seek the advice of those who have come closest to sharing your child’s path. Because you never, ever drown their voices out of the conversation. Because you know how vital their perspective is. Because you know that this IS a conversation.

You rock because you give your child the space to fail – giving them the ability to succeed.

You rock because you function on ludicrously little sleep.

You rock because even when you wake up convinced that you can’t, you do.

You rock because you doubt yourself and because you know that that’s okay.

You rock because you never doubt your child. And because you won’t let anyone else doubt him either.

You rock because you know that it’s okay to be human.

You rock because you accept help when it’s offered. And offer it when you can.

You rock because you know that no one – no one – could possibly do this alone.

You rock because you know how much richer your life is for all of the people who are now in it and all of those who will be in it in the future.

You rock because you tell your truth – and because you want nothing more than for your child to be able to tell his. And because you know the difference.

You rock because you know what matters – and what doesn’t.

You rock because you know that diagnoses mean insight, information, and community NOT excuses, limitations or anything that we don’t give them the power to mean.

You rock because you apply what you’ve learned as a special needs parent to absolutely everything you do.

You rock because you know that ego has no place in a conversation about what is best for a child.

You rock because you learn as much from your children every day as you teach them.

You rock because you refuse to stay home and hide. And because sometimes you know there’s no choice.

You rock because you haven’t eaten a hot meal in years.

You rock because you long ago convinced yourself that you really don’t like your food too hot.

You rock because you’d fight the demons bare-fisted if you could.

You rock because you make no assumptions.

You rock because you know that it is in our weakest moments that we find our greatest strength.

You rock because in the deepest depths of the mud and muck, you find humor.

You rock because at the end of the day, you’re still you.

You rock because you cast your own insecurities aside – or work through them step by step by infuriatingly tiny step – to do what you need to do for your child.

You rock because you never become too much of a therapist to remember that you are a mother (or a father) first.

You rock because you play to your child strengths to help guide him through his challenges.

You rock because you know when to listen to the experts – and when to follow your gut.

You rock because you know that pain is never a competitive sport.

You rock because you know that EVERYONE has a story. And because you treasure the gift of discovering it.

You rock because you blaze a path for those to come.

You rock because you’ve learned that everything is personal.

You rock because you know that courage is not the absence of fear.

You rock because when you know it’s not working, you try something different.

You rock because you make what feels like Sophie’s choice. Dozens of times a day.

You rock because you ask questions.

You rock because you can Google circles around thirteen year-old girls.

You rock because you know that sometimes the best way to be heard is to listen. And because you know that sometimes – just sometimes – you need to shout.

You rock because you bring cookies to IEP meetings – even the ones to which you’d really rather bring something with a trigger.

You rock because you know there is no more courageous act than asking for help.

You rock because you read that one last book at bedtime. Three times. And because you know that it’s okay if sometimes, you Just. Simply. Can’t.

You rock because you know that you matter. And because even when you forget, you listen when someone (ahem) reminds you.

You rock because you still seek balance, no matter how absurdly unattainable it might seem at any given moment.

You rock because as much as you may want to drop-kick the next person who tells you that God doesn’t give you any more than you can handle, you don’t.

You rock because you know that, ‘What we typically do ..’ and, ‘Well, common practice is …’ are really stupid ways to start a sentence.

You rock because you know that Individualized Education Plans (IEPs) are meant to be just that – individualized.

You rock because you know that your path is just that – yours. And because you might silently judge a fellow mom for wearing really ugly shoes (c’mon people, we’re not saints) but you’d never judge the road upon which she chooses to set them.

Dear Friends With Special Needs Kids,

I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.

YOU ROCK.

Making Friends with Usher 1C

So a few weeks back, I spoke with a lady name Sonia Desormeaux. She was married to the jockey, Kent Desormeaux, and they are both from the Lafayette area. They have a 13 year old son, Jacob, who was born deaf and as they later found out, has Usher 1c. (same as Hunter). Long story short, a friend of a friend told us about Jacob when Hunter was first born. They told us he had the implants but that they lived in California, if we wanted someone to talk to about it. Of course we had a handful of people here as well, so we took advantage of the less prestigious (but full of wealthy information) people around Louisiana.

Well the day we found out Hunter had Usher 1c, I was on the phone with a mom from Boston who told me about the Desormeauxs. Kent, the father is a famous horse jocket and they are from where we live. Jacob’s mom, Sonia started a foundation called Eye on Jacob. I found more information on www.eyeonjacob.org and sent them an email that weekend. I didn’t hear back right away, but when I was telling my cousin about them, she said they were the same people she told me about a while back, but she had no idea he had Usher 1c. She immediately got their direct contact information for me, and at first I was only able to get ahold of Kent. He said he was not as informed about the foundation as his former wife, Sonia, but that he would give me her information since she was the one running the foundation. I ran by him the idea of having a fundraiser in Lafayette for Usher Research and he was happy to be a part of it, but with his jam packed schedule we agreed to talk about it at a later date. At the end of the conversation he did say that Jacob was one of the happiest kids he has ever met and he just wanted me to keep that in mind. That was very heartwarming for me to hear.

I called Sonia the following day on my way to Baton Rouge for Hunter’s AV therapy appointment, and we spoke for a good 45 minutes. She was unbelievably informational! It’s so nice to be able to speak with someone who is 10+ years ahead of this journey and is actually experiencing the effects of the vision loss (RP). She told me how she has been putting on fundraisers for the past 18 years, so she is obviously a pro. Her main focus since Jacob was diagnosed has been Usher Syndrome. She took 9 weeks to travel all over the country to meet different doctors and focus on what needed to be done for her son. She said that unlike other foundations out there, all of her profits go directly to the University of Iowa to research Usher 1c. There is minimal overhead since she is the only one working for the foundation. My idea right away was to have something in Lafayette. What a better place to raise awareness and funds for Usher 1c research than the place where the gene for 1c is most prevalent? She said her entire family and Kent’s family all still live here. Her sister, who is on the Eye on Jacob board, still works and lives here and has mentioned before having something in Lafayette as well. She currently has a Public Service Announcement airing in California, just to raise awareness of Usher Syndrome, but her goal is to get it nationwide soon! Again, I said I think the first place it needs to be is down here in Louisiana. My goal is to get the word out first and make people aware of what Usher Syndrome is. And the personal stories of Jacob and Hunter need to be shared so that people can get a good understanding of what it entails exactly.

This is not something that will happen right away, but it’s a goal of mine for Hunter. And I think if Sonia and I can team up, we could really spread the word quickly considering we know a lot of the same people down here.

Before we got off the phone, I asked how Jacob was doing and when he started to lose his eyesight. She said at 7 ½ he got out of the car one night and started yelling that he couldn’t see. They thought he was playing a joke, but it was definitely real. He started to lose his night vision at the young age of 7 ½. She said it’s not the age of 10 like everyone says, for 1c it can start a lot younger. He is now 13 and his peripheral vision is slowly started to close in on him. If there are things such as a book sack or shoes on the floor and he does not see them, he will trip over them if he isn’t looking down while he is walking. She said he’s a great kid and an honor roll student. He gets along well with everyone, but don’t try to lend him a helping hand because he doesn’t want it. He’s a fighter and he wants to do it on his own.

Sonia will be at the Usher Coalition Conference in July, and I am very much looking forward to meeting her. As much as I hate the fate of Hunter having Usher Syndrome, I think she and I were meant to get together. She grew up in Youngsville, we live in Youngsville. Their entire family remains in the Lafayette area. This is what I have to do as Hunter’s mom. She did it the minute she found out, and I have a great role model to follow in her footsteps. Now I can’t say I have the funding and resources she has to start an organization like Eye on Jacob, but people will be aware of it, and people will get to know Hunter and his diagnosis first hand. We will not let it bring us down. We’ve got a handful of years to work our tails off towards a cure, and I’m ready to get started! So yes, I am looking forward to the conference on July 7th.

5 Weeks Post Activation

I apologize for the lack of posting in the past few weeks. Life has surely gotten in the way!

My sister in law and I took our 14ish month olds (yes, they are 3 weeks apart) to Houston to visit Hunter's Nanny, Bevon! She is due for twins in August so she was glad to have the practice with Hunter and Eli, and we were glad to have the help entertaining! It was quite nice that the boys are basically on the same schedule, I sure hope it stays this way because it makes it easy for us to travel together! Despite my vehicle having to stay in Houston due to a check engine light leading to needing a new transmission (fun!), we were just glad it didn't break down on I-10! We had a such a good time just spending the weekend all together, I wish we could do it every single weekend. Good food, good friends and good family. Next trip, less time spent finding a repair shop to take my car to on a Saturday afternoon, and more time shopping :) We did get some time in at the pool that surely made up for a long day on the road!

This past week started out with Hunter at the pediatrician's office with a nasty cough he had been battling since Thursday. He's on an antibiotic and doing much better. Then Wednesday we took our weekly road trip to BR for his AV Therapy appointment. He did very well, knowingly responded to his name three times and even immitated the airplane and the car noises! Thank you to my friend Lauren for joining us this week to help keep H entertained. We were so glad to have you this week!

Thursday Hunter had Speech Therapy at the sitter's house. It was their first session but she said he was very easy to play with and she is going to incorporate the weekly AV Therapy goals into her sessions. When Blair picked up Hunter from Nini's on Thursday, he said she was on cloud nine because she said mummbled "mama" three times that day! She was sooo excited! The night before when I was unloading the dishwasher, he was pulling on my pants and I thought he was mummbling mama, but I thought it was just me making it up! He isn't looking at me and saying nor really putting two and two together, but I'm just as excited that he's started to really babble like a baby and make distinct noises!

On Saturday, we attended our first Little Gym summer session class. We had gone to an introductory class before, but thanks to Nana we will be going every Saturday this summer. What a good time he had, especially since he was accompanied by Camille, Kell and McKinley! (all cousins who were born within 6 months of Hunter!) He was very clingly to me this morning before we went, but the minute he got there it was like he forgot who I was! I am very excited about the little gym, especially since he is balacing better and better every day on his feet. This gives him a chance to roam around a completely padded room and do exercises we don't normally do at home. It's very good for the vestibular system. He is walking more and more with his walker and we are working on it every day. This week we have OT on Thursday and we haven't seen her in almost 3 weeks, so I think she will be very impressed with his progress.

Here's a picture and a little footage from this morning's class.

Oh, and just another update.... Blair and I will be attending the Usher Syndrome Family Conference in St. Louis on July 7th. It's basically an all day informational session on the latest research and developments with Usher Syndrome. A few of the families that I have been keeping up with will also be there and it will offer a lot of networking oppportunities with other families in the same boat as us. We are very much looking forward to it (I mean I guess as much as you can look forward to something like this) just to be in the know about everything involving everything involving Usher Syndrome!

This coming week we have Speech Therapy on Tuesday, AV Therapy on Wednesday and OT on Thursday. Be back after all of that!

Have a great week :)