*March Madness*

Yesterday marked one month until Hunter's surgery and in 2 days it will already be March.
March has always been my favorite month. (with the exception of tax season of course...)
My daddy/superhero's birthday is the 2nd, my birthday is the 19th, and this past year, Hunter also made the cut to be born in the best month of the year, so he snagged March 12th. Welcome to the club big guy :) I also have a few close friends whose birthdays fall in March, so we always try to use that as an excuse to get together.

I am looking forward to celebrating my daddy's birthday on Friday with the fam :)

I am looking forward to celebrating Hunter's birthday at his party March 10th with family and friends, but I am not looking forward to throwing this party on a day that I also have to put in some hours at work.

I am looking forward to Hunter's actual birthday, March 12th... marking one year that we have been blessed to be part of God's little miraculous plan with Hunter.
I am not looking forward to his 1 year shots the morning of March 12th.

I am looking forward to March 27th, the day that will change our lives, most of all his, forever.
Then again I am not looking forward to March 27th. For selfish (emotional) mommy reasons of course.

I am looking forward to March, yet my emotions lately have been like a roller coaster just anticipating everything coming up. I feel like the closer we get to Hunter's birthday and the closer we get to the surgery date... the more my memory of the day we found out Hunter was deaf keeps tugging at my heart. In mass on Sunday, when all of the kids went up to get their bulletins, I just couldn't help but think of Hunter running up there one day, CIs and all, unlike any other kid there. It brings me back to Easter Sunday last year, after I put Hunter to sleep I lay in my husbands arms weeping. Seeing all of the children in our family together that day made me mourn the fact that I thought Hunter may never be like them. He wasn't holding his head up, we weren't even sure he was making eye contact, and most of all, he wasn't hearing any part of "I love you" from anyone. And look how far he has come.

I am 110% grateful for the opportunity to give Hunter the gift of hearing, I am just scared for him and how he will be treated by others. I know he won't even notice for a while, but I will. And I feel selfish for saying that. That it will bother me when people may stare at my child, knowing that the reason they are staring is overall an amazing reason. A deaf child... who was giving the gift of sound.

I am not looking forward to the struggles in the road that lies ahead of us. I am scared.to.death. in fact. Scared that I don't do a good enough job of being Hunter's therapist. Scared that I don't perform to the high standards that so many other mothers have set when it comes to raising a CI child. I would love for Hunter to be that child that starts talking only months after activation, but at the same time I don't want to be let down if he isn't. I would love for Hunter to be that child that can be mainstreamed when he starts school, yet I know it doesn't happen for everyone.
Whatever lies ahead of us, in the grand scheme of things... it could be much worse. I have a healthy happy baby, and I thank God every day. So whatever His plan is, as I have said before, I am grateful to just be a part of it. And I will do everything in my power to give my child the opportunity to succeed. I promise nothing less.

Stay tuned for 1 year pictures... It's cuteness on overload :)

Love!

It was love at first sight...

 

And love at first lock...

Here's a little footage:

Happy Valentine's Day from our little gentleman!

Surgery Date!

It's official! It's official! Hunter is on the books to have his surgery the morning of Tuesday, March 27th. Two weeks and a day after his first birthday. I just want to scream a waaahooo!

PS. When I find more time in the day, I will post more fun things. Promise! Tax season is already taking over our lives, but Blair has swept in a done a heroic job at running daddy day care on my late nights and Saturdays while I am at work. Oh... and he is still crawling, faster and faster every single day, and he is pulling up on everything (see pic below)! Awaaahoo! Oh, and my little man turns 11 months this weekend. Tear ;)

Wordless Wednesday

 Hunter and Eli's (3 weeks apart) first sleepover with Nanny and Gammy!

 Watch out Reese!

I know my wordless Wednesdays aren't always wordless, but sometimes I feel the need to narrate pictures :)

Wordless Wednesday

Simple Facts

Happy Wednesday everybody!

I just wanted to give you all a few updates.... Last week our genetic counselor went to Women's and Children's hospital while he was in Lafayette to see if we could get Hunter's blood work drawn in Lafayette rather than having to drive to New Orleans. He called on Thursday to let us know that they do not have a contract to send blood work to Harvard, but that they would review his case and possibly make an exception. If not, we will just have to bring Hunter to New Orleans to get the blood drawn. Easier said than done during tax season! But beggars can't be choosers, we will make it happen!

Today we had a regular checkup with the pediatric ophthalmologist. He just checked his prescription and all looked great! He also said he didn't see anything abnormal with the retina, which is great! Even though signs of Usher don't normally show up until closer to the age of 10, on average. We told him about our decision to have genetic testing done, and asked if there are any retinal specialists in Lafayette. He said there are a few, but there is one who deals with babies more often who he would refer us to if need be. It was almost like I didn't skip a beat talking to him about Usher Syndrome. And it's not that I'm convinced he has it, but I thinking knowing we will have a game plan in case he does, makes me feel better. For the time being at least...

Last week we also saw our special teacher and OT. Our special teacher said it seemed like all of her babies were at a standstill as far as progress is concerned, but that Hunter was her student of the week! Yay! He was crawling all over and pulling up on everything. He may not have the best balance to stand up yet, but he sure has the guts to try it! He and our OT were on our kitchen floor exploring all kinds of new things. She was raving over how well he has done since she started working with him, and he deserves all the credit!

Milestone Monday

Check out what Hunter gave Mommy and Daddy on their 2nd Wedding Anniversary... we know this is going to change our world, but we couldn't be happier to have a little mover on our hands. All of your hard work has paid off H, we love you!

Genetic Testing

I don’t really know where to start, so I will just say how all of this came about.

When Hunter was first born, we were referred to a genetic counselor who works for Tulane but comes to Lafayette once a month. His waiting list was months and months for an appointment in Lafayette, so we took a trip to New Orleans because we were able to get an appt there in just a couple of weeks. After going through my family history and Blair’s family history (which has no history of Usher’s), it was determined that Hunter had a 50% of carrying the Usher’s gene but never having Usher’s, a 25% chance that he didn’t even carry the Usher’s gene, and a 25% chance that he is carrying the gene and would in fact have Usher’s. At that time, we did not know any of the benefits to finding out if he had Usher’s or not. We were so overwhelmed with all of the information on hearing loss, that we thought we would pursue the Cochlear Implant (CI) for now, get Hunter’s eyes checked routinely by the only pediatric ophthalmologist in Lafayette, amd hope and pray and hope and pray that he never shows any signs of Usher’s…. but cross that bridge when we get there if need be. At that point, our main concern was Hunter’s hearing loss.

I am part of a CI group on yahoo. It consists of parents who have children with the CIs or are in the process of getting them. It’s an incredible means of communication amongst parents all over the world who are all going through the same thing. You can send an email to group, and within minutes you are getting answers and advice from other parents who have been there and done that. It’s absolutely incredible.

Well, a week or so before Christmas, someone emailed the group inquiring about their child who was born profoundly deaf (as was Hunter) who is also having balance issues (as is Hunter). Another mother, who has two older girls who both have Usher’s Syndrome, responded with the fact that 35% of babies born profoundly deaf with balance issues end up having Usher’s Syndrome. Now with the family history of my first cousin having Usher’s, it immediately was like a punch to the gut.

I had emailed one on one with this lady before when I first joined the group. She had reached out to me and is a huge advocate for the implants and auditory verbal therapy. So I decided to send her another email so that I could get more information on Usher’s. We emailed for a few days about it, but basically what she advised was to get Hunter tested by the age of 5 to find out if it is in fact Usher's. There is a condition called retinitis pigmentosa (RP) which is the part of Usher's that causes the vision loss. She said there is a doctor who has been studying the effects of prescribing really high levels of Vitamin A to kids with RP. Basically, the rods in your eye give Vitamin A to the cones, but if the rods are deteriorating then Vitamin A can't get to the cones. By taking higher doses of Vitamin A, more gets to where it's needed to prolong usable vision. This doctor's research has shown that this treatment can extend the years of usable vision by 20 years. The use of vitamin A is controversial, but the Foundation Fighting Blindness fully supports it and the research. A side effect of the high doses of Vitamin A are abnormal enzyme levels, so that would have to be monitored if given the increased doses. But there have not been any reported problems with severely abnormal enzyme levels.

With all of this being said, Mrs. Nancy with the LA School for the Deaf came for a play date on Thursday, and said she has seen babies without Usher's who also have balance issues. I guess you could say it is a toss up, but either way Blair and I would like to know. I think the fear of not knowing would just eat away at us if we didn't find out. Once again, with my family history it's just a good idea altogether to have this done.

I contacted the genetic counselor at Tulane, and he is coming in to Lafayette on Wednesday. He will speak with the lab at Women's and Children's Hospital to make sure they can send the blood work off to Harvard. Some hospitals are weird about who they have contracts with and where they will send the bloodwork. We will first start by testing for the most common strand of Usher's, and go from there. The most common one is known to come from Acadian/French Ancestory, so it was sort of a given to start with that one considering our heritage. He said if they can send to Harvard, they can draw blood the next round that they are in Lafayette, which is February 6th. They like to be there when it's done so that all goes right. Once sent off, it takes about 4 weeks to get the results, and they will schedule an appointment to deliver the news, no matter what the result may be. Their waiting list is still very long for an appointment in Lafayette, but he said he will see about pushing us up on the list for an appointment when the results come back.

I have been constantly reminded this past week how lucky we are to have been given Hunter. I did an inventory count of hats and wigs for pediatric cancer patients on Thursday. Sitting in that room and looking around made me so very grateful that our son does not have a life threatening condition. And for all of those who read the blog "EB'ing a mommy" and who are praying for Tripp, please continue to do so. Pray for peace for Tripp and his mother. The strength that mother has is truly inspiring.

So for now, as I said... we will continue to hope and pray and hope and pray... for peace in whatever the result will be. Because whatever it is, we will live through it. I know Hunter is going to accomplish great things in his lifetime, the boundaries he has overcome so far are direct results of his will to progress and succeed.

Oh, and as for the surgery. The hospital will file on Monday with the insurance company and (fingers crossed) once approved we can set a date. Ochsner's policy is to wait 2 weeks after 12 month immunizations to perform the surgery. So we are hoping for the last week in March. But I will let everyone know when we set a date. We will need many prayers and angels among us on that day :)

Baby Steps

Hunter has been working very hard at sitting up and keeping his balance. Well Friday night we went out to dinner for Blair's birthday, and we brought along our cart/high chair cover to put on the high chair in case Hunter decided to start throwing his head back. We no longer have the carrier car seat since Hunter is too long, so it was either hold him or try the high chair. Here is a small video we took that Blair suggested I post to the blog, and I agreed. This is a huge step for Hunter. I think we both mainly sat at dinner staring at Hunter with a grin from ear to ear because we were so excited he sat content the entire time, and did not throw back once. (puffs always help the situation too!)

It was the year 2011...

When I think back on the rollercoaster of a year we have had, the one thing that sticks out the most is how memorable of a year it has been for us. Of course, Hunter’s birth takes the cake by far… but the many many blessings that God has bestowed upon us are what make this such a special one for Blair and myself. The ever present support from our family, the loving words of friends, and the abundance of new people we have met this year are all things that have given Blair and myself the courage and strength to keep plowing forward with every decision we make.

Since I didn’t start this blog from the very beginning, I will try and summarize the events leading up to our decision to get Hunter Cochlear Implants.

Saturday, March 12th
I was at work (39 weeks preggo), as I was every Saturday morning during tax season.
Only difference was, I had actually dressed up and put makeup on :) Saturdays at the firm are usually casual, and don’t always involve a face full of makeup, especially when my face seemed to have doubled in size! Someone was preparing me for something big that day. As I got up from my desk to scan something, I felt something I had never felt before. Was it my water breaking? My heart starting beating out of my chest. As calmly as possible, I logged off of my computer and jetted (well more like scooted) towards the stairwell without saying a word to anyone! I immediately called Blair, who had just driven up to the golf course, and said meet me at the hospital… I’m not positive, but I’m pretty sure my water just broke! I told him to call our parents because I had to call my doctor. For a second I thought about running home to get my suitcase, but opted out, and headed towards the hospital instead. I tried calling my doctor on the way, only to find out that not only was she was out of town, but her partner was out of town too! So I was getting the third doctor in line... but what was I going to do…. Beggars can’t be choosers!

The answering service couldn’t even get a hold of him, so when I arrived at the hospital I went directly up to labor and delivery. I think they could tell I was freaking out inside when my voice was shaking as I said “I think my water broke, but the doctor won’t call me back.” They told me to remain calm, everything would be fine, and they immediately put me in a room. The rest of the day was one of the best days of my life. My water broke at 9:15, and I jumped from 6 to 10 cm while I was napping. At 3:05pm we welcomed into the world Hunter Paul Faucheaux. I knew he would change the world, I just had no idea how much at that point in time.

One of the best moments of that day was watching my husband stand over Hunter while they cleaned him off and weighed him. There was no question that went unasked. He wanted to know what every little gadget did and why they were using it. As he handed over our tiny 6 pound 13 oz angel, my heart absolutely sunk. He was perfect in every single way.

Monday, March 14, 2012
We were gearing up to head home as a lady with a thick accent and a small brown box walked in. She said she was there to administer a test to screen Hunter’s hearing. Little did I know that they did this to every newborn baby, just sometimes they do it in the nursery. As I held him and she stuck a wire in his ear, she kept looking at the box for some sort of response. She would adjust the wire, adjust her box, but still nothing. The pediatrician on call walked in and assured us that babies fail their newborn hearing screen all the time due to fluid in their ears, and not to worry. They also said that the vent in that room was louder than the others, and could have been interfering with the test. The lady asked if we had any deafness in our family, and my heart dropped. I proceeded to tell her about a first cousin of mine who has Usher’s Syndrome. He was born deaf and has progressively lost his eyesight. But it was just a little fluid, right? Not to worry. I told my husband, if Hunter is in fact deaf, it’s the minimal of potential problems out there. He is 100% healthy and that’s something we can work around. I still was not convinced that he was in fact deaf. There were too many coincidental moments in the following weeks where Hunter jumped when noises were made. But we had scheduled a follow up appt to retest him at Women’s and Children’s Hospital for Monday, April 4.  A day I will never forget for as long as I will live.

Monday, April 4, 2012
My mom had taken the day off so that she could come with me to Hunter’s follow up hearing test since Blair was at work. Just another check up, everything was going to be fine, right? Although only bits and pieces come to mind from that day, I remember waiting in the lobby for a good 45 minutes after our appointment time until they called us back there. I was a nervous wreck because I had nursed him just in time to be asleep for this appointment, with enough time to spare until his next feeding. And although our timing of the appointment was off, Hunter managed to stay asleep the entire time. I’m sure he knew Mommy had bigger things to worry about. As the lady administering the test attached probes to Hunter’s forehead and behind his ears, my mother held him as I sat near so as not to wake him up by transferring arms. The first test was a clicking of sounds sent through tiny wires to test for a reaction from the hair cells in Hunter’s ears. It felt like forever and a day while this was going on. Once again, there seemed to be no reaction as the lady was making sure there was no interference by any other electronics in the room. As she fooled around with every piece of equipment in there to make sure none of the wires were touching, I just starting choking up and couldn’t help but let the tears fall down my cheeks. My mom just kept looking at me with a blank stare on her face, which is very unlike her. If you know my mother, you would think she would have been right there with me with the waterfalls. But there was no emotion in her face, as Hunter lay there looking lifeless with 90db blaring in his ears and not a single reaction coming out of him. As the lady sat there studying her computer, all I could do was cry. Was this really happening? What about when the toilet flushed in the hospital room and he flinched? Or the door closing at home and he jumped?
She then turned to me and said, “Your son has a profound hearing loss in both ears”. This was greek to me, I wasn’t even worried enough before the appointment to google anything about hearing loss.
My response, as I was choking up so hard I could barely speak was, “So he is deaf?” and she replied “Yes, I’m sorry” She proceeded to try and comfort me as she said she believes a child not loved is more handicapped than one who could not hear. Boy, love was one thing this baby was not lacking!
Immediately my mom asked if this was something a Cochlear Implant could fix, and she said yes. She apparently had done her googling, and done a little grieving beforehand also… hence the no tears at the appointment. Which I know she did for me. I would not have been able to handle seeing her upset as well.
As I thought to myself, what in the WORLD is a cochlear implant, I knew I had to go out in the hallway to call my husband.
As he picked up the phone, he said he was walking into a meeting at a bank downtown, and all I could say, with as much strength in my voice as I could was “He’s deaf, Blair… he’s 100% fully deaf”.

The rest of our conversation is a blur, and when I walked back in the room I just asked to stay for a minute so that I could hold him. I just wanted to hug him, and protect him, and never ever let him go. I just sat there and cried while he slept in my arms.

When my mom and I got home, my dad came by for a while just to show his support. I told them I would be fine, I just wanted to be alone with Hunter until Blair got home. I just wanted to hold him, and rock him, and for him to never grow up and realize that he was different in any way whatsoever.
When Blair got home, he did the same. He held him with the same tears I had, tears for our son that he was missing out on the auditory world. It sounds weird for me to say, but we just felt SO sorry for him. Sorry that he didn’t even know what he was missing out on.

We received a call from our pediatrician that afternoon who had just gotten the results. We stayed on the phone for a good thirty minutes until we were both in tears by the end of the call. Hunter is her first deaf patient, so we were going to tackle this together head on. We also got a call from the lady with the Louisiana School for the Deaf that afternoon. And in this small world we live in, she is married to one of Blair’s old bosses, and we had met her a time or two. Her cheerfulness about our situation threw me off at first, but I guess we couldn’t be depressed forever. And it was her job to make sure of that.
Blair took off the next day and stayed home with Hunter and myself, just to kind of take it all in and be together as a family. We started researching cochlear implants and started to see a whole new light. I always wonder why I had never heard of this before. I was never really educated on cochlear implants because my cousin never got them, but the you tube videos of babies hearing for the first time said it all.

Thus our journey began to obtain Cochlear Implants for Hunter…

This year, I am going to picture a person who models what I am going through exactly how I would want a role model to show it, and my goal is to become that person.... I hope Hunter brings a touch of joy to everyone he comes in contact with this coming year, it’s going to be a memorable one that’s for sure!