Happy New Year!

What a year we have had. I am thrilled to close this year in many ways, but it also blessed us, too...our biggest blessing being my 16 pound, 28" baby boy who is smiling at me from my lap as I type this.

I've also been blessed beyond meausure by all the amazing people God has put into our life through Seth's deafness and through my posting here. Each and every person we have met has helped us in a different way and we are so, so grateful!

2009 is going to be a big year for us...I can feel it already. We are so excited to be moving forward to give Seth a chance to hear!

We're off to a party all the way next door tonight, so I'll be back and posting tomorrow...I haven't decided what resolutions I am going to make and then break yet!

Happy New Year to you all...I hope that 2008 closes peacefully for you all and that 2009 bring you everything you are wishing for.

Drumroll, please!

Well, Seth's appointment this morning went really well, but it was intense. Recently, there have been some new developments with him that have led us to a new, slightly different diagnosis. There were a few things that just didn't fit in...namely that he passed one type of hearing test (the OAE...otoacoustic emissions test) repeatedly while flunking the ABR (Auditory Brainstem Response Test), and that every once in a while, Seth would seem to hear, and even search for voices, even when he wasn't wearing his hearing aids, which freaked me right out, of course.

Turns out he has something called Auditory Neuropathy. If you picture a cord twisting and causing a short, then being untwisted and working again, or a cell phone losing reception then regaining it, that is sort of what Seth has. Yes, that was very simplistic. =) Basically, sometimes he can hear us, but most of the time, he can't. Explains all the weird responses we've gotten, and having present OAE's and absent ABR's is kind of a hallmark of this disorder.

Our treatment plan is the same...Seth still can't hear most of the time (He tested in the booth between 90-110 decibels unaided, and in the 70s-80 dB range with his aids in. Speech is around 20-30 decibels, so much quieter than he can hear). Cochlear Implants tend to work well for kids with AN...it bypasses the area that is shorting out, so to speak, and creates a clear signal.

So our plan is the same, Seth just had to go and throw a little wrench in the planning. Apparently, he doesn't want to be a text book case, as usual! But he was a rockstar at the appointment, charmed everyone, and we are very excited to be moving forward in this process.

In the short term, though, Seth, once again, has fluid in his ears. It has gone away and come back a couple of times now, never causing an infection, but they cannot implant him with fluid in his ears, and since it has been recurring over a couple of months, it is a concern. We go in next week to determine if tubes are in his future.

I would really, really, really like to avoid surgery. If we have to, we have to, but I hate when he has to be sedated. So if you could all be praying for the fluid to go away and stay away, that would be awesome! If they implant with fluid, it can lead to infection, which is very bad.

I will be back to post about our awesome weekend and how I finally got to go to IKEA later!

Merry Christmas!

Happy Birthday, Jesus!

We have finished opening presents, watching High School Musical, and some of us have already napped! Now we're off to the movie theater for our annual Christmas movie and then we have to start packing...because we are off to DISNEY for the weekend!

Hope you're all having a great time celebrating the birth of Jesus!

He would be 20 months and 24 days old right now.

Last night, we watched my best friend's baby so that they could go to a Christmas Party. Fisher is adorable. Sweet, loving, and just the greatest little boy. He's 16 months old...just four months younger than Eli would have been had he lived. Mara and I were pregnant together. We have been through so much together...babies, miscarriages, death. I love Fisher like he was my own son, and I love getting to keep him every once in a while.

But it's hard, too. When he is there, the four of them seem so complete. Seth, Fish, Jace, and Ava...not that I mistake Fisher for Eli, but it is a reminder of what life would be like if our little boy were here. Last night we were all laying on the couch together, the three boys curled up at one end and Ava and I lounging at the other, and it hit me so hard...how perfect it was. Even an hour later, when I was rushing from room to room, three kids screaming, breaking up a fight between Jace and Ava, going in to settle Fisher, then running to Seth's room to rock him, I still wanted, painfully, for that to be my life and not just one night, no matter how loud and hectic.

His mom came and picked him up last night and took him home, and this morning I walked into the room his pack n play was set up in, to see two small socks he had left behind. Even though I know he is just next door, with a new pair of socks on, I felt somehow as if I'd lost my toddler all over again, lost that little boy that was supposed to be Fish's very best friend forever in a whole new way.

Sometimes when it hits the hardest it's not because of anything special, not because of a birthday, or a holiday. Sometimes it's just life, going on, and then, suddenly, stopping all over again, ripping a new hole in what used to be a normal life.

In which I curse those shiny lights

So the kids had a Christmas program today. To prepare for said performance, they have been practicing every single week at church for a while, and they did a pre-performance at Ava's school Christmas party on Thursday. I was very entertained by Jace's hip gyrations, and impressed at how well both kids knew the choreography.

So imagine my surprise when we showed up at the rehearsal Saturday morning and Jace glued himself to my legs and refused to dance, sing, or even stand in line. It took me standing on my knees next to him and completely dorking out on the dance moves to even get him to throw a half hearted jazz hand into it.

Luckily, the more they rehearsed, the better he got, and thank goodness Ava had no such stage fright and did not need any hand holding. She threw a very interpretive vibe into the dance...a lot of closed eyes and slow, fluid movements that did not match the dance but were cute anyway.

This morning he was in a much better mood and we headed for the stage with these two adorable children:

They proceeded to sing and dance their little hearts out all the way through two services without a single mishap or wardrobe malfunction...until, of course, Jace decided he needed to touch one of the shiny lights on the stage...and  burned his hand pretty badly. I looked up and he was getting carried off the stage screaming and we had to gather up our things, the sleeping baby, Ava, and carry Jace out of the sanctuary where he refused any treatment because he "just wanted to cry about it." He proceeded to make up a song on the way out to the car about how "It still hurts, my hand still hurts." with a lilting melody.

Luckily he seems to have recovered nicely!

Life is Hard

Ahh! I am here...thanks to the intermittent internet of our neighbors and best friends. If I sit in just the right spot, it does not go out on me.

Let me just say right now...this is going to be one of those posts. I'll throw it out there...

I am exhausted. mentally, spiritually, and physically. Tired to my bones. This has been a week of nonstop Christmas parties for us, for each kid, for youth group. It's almost over...tomorrrow night is John's work party and then I can stop making favors, assigning foods to bring, and decorating classrooms. That's the physical exhaustion...on top of the parties, Seth has had evaluation after evaluation, appointment after appointment, and the next two weeks of appointment free time is stretching before me like an oasis.

I went to a deaf Christmas Party last week. I went on my own with Seth and with Ava, and as we walked across the street, I felt myself start to sweat. Everyone was deaf. Real deaf people, not hearing people who were there to teach us sign. These people couldn't hear me and couldn't clarify things for me if I didn't know how to ask them to in ASL. I had one semi-successful conversation with a woman and her adorable baby, then quickly slid right down the mountain of depression I have been avoiding for so long. Everyone was signing! No one was talking. It was fast, and overwhelming, and as I stood outside watching Ava play with all the kids, I felt like falling to the ground.

This is hard! Not just the signing, but all of it! I am so glad I got to bring a baby home, so thankful to God for healing him and gifting him to us, but...this. Is. Hard. Therapy is hard. I feel like an idiot pointing to my ear and saying "Seth, I hear the train! It says CHOO! CHOO! CHOO! Do YOU hear the train?" As he stares at me, not hearing a word.

Taking my son to specialist after specialist, thinking I'm going in for simple NICU rechecks only to find out each time that there is something they are concerned about...Seth's list of doctors is longer than the rest of the family's put together.

Signing is hard! I mean, why is the syntax the complete opposite in ASL? I feel like I have to turn my phrases all around before I can sign them, then I get confused about what I was trying to sign in the first place.

John working two jobs is hard. Hard for me, because I feel bad that the reason he is doing it is because I couldn't go back to work due to Seth's busy schedule, and because I get frustrated that John never gets to come along for any of Seth's appointments. Hard for him, because he never gets to see the kids. Hard for us, because we never see eachother, and when we do, we are both tired and cranky.

Now, I know that I am being ridiculous. As hard as therapy is for me, I see every day the ways it is helping Seth to be attentive to conversations, to take turns, to pay attention to facial expressions. And of course signing is hard! It's a foreign language, after all, and it's ridiculous for me to think that 4 months of studying it will make me fluent.

The specialists...they have Seth's best interest in mind, and of course it is important to find out if he does have this syndrome or that problem and exactly why he is so far behind in development physically.

John...I am blessed to have a husband so willing to work two jobs most days to keep us afloat, and never complain.

There are kids out there, families out there, much worse of than Seth, and than us. I understand that and my heart goes out to them, because I don't know how they do it. But after thinking about it, they probably just don't have a choice, they just love their kids and they keep going for them.

So, I get it. I get why each and every one of these things is hard, and I understand it logically. But sometimes, when I have spent four hours with my 5 month old son doing "tests" and I am waiting for the specialist to go call another, more special specialist, it all just seems a bit much.

I look at Seth and I see that he is happy, he is healthy, and I wish I could spend more time being happy about that than being apprehensive about his development, his hearing, his surgery that is only 5 months away. But I find the more exhausted I am the harder it is for me to see clearly, and right now the only things that are the ones that are stressing me out.

So, we could use some prayers. For Seth, and for us. There are a few things up in the air for him, and he will be going through some retesting in a few different areas (motor skills, some more hearing tests, and his heart). I will post more details on what exactly is going on later, as log as my internet connection holds. =)

Happy Christmas Vacation! Just in the nick of time. Hope you're all relaxing!

Family Time

I have been gone...I know...but I have a good excuse! John was off work last night so he was actually home and we headed out to let the kids pick out a special ornament and decorate trhe tree. Also, I was craving Hooters. The food, not the atmosphere. While we were there, the kids needed to use the bathroom, and I told them to hurry up and go and to try not to look at the girls (disclaimer: I have no issue with hooters girls, per se. I just don't want my daughter emulating them. Or my son, for that matter. :P).

When Ava came back to the car, as I was buckling her into her carseat, she said "I'm sorry, Mama...I looked at those girls in the restaurant even though you told me not to." She had that confession look going on.

"Oh yeah?" I said, trying not to laugh. "What did you think about them?"

"I think they forgot their pants! What happened to them?" She asked seriously. "Oh! Maybe all their pants got wet and they were waiting for them to dry."

Um...yeah, actually. Sounds like a good reason to me! We headed home after that to decorate our tree. It is covered in decorations up to about as high as Ava and Jace can reach, and bare above that. It is seriously messing with my perfectionism to leave it that way, but Ava and Jace both memorized the location of all "their" ornaments, and this is totally not a hill I'll die on.

__________________

Today we packed up the kids and headed out to an awesome event hosted by the Deaf Literacy Center at a local children's museum. The kids got to make tons of ornaments, watch a show, and get their faces painted...life was good for them today! Most of the people there signed...I think Seth was the only one there who wears hearing aids (that I saw), and I didn't see any implanted kids. BUT it was a madhouse, so I could have missed them, and I know there are at least a few.

I had my first signed coversation with someone who is deaf (we take signing classes from a couple of awesome hearing ladies). It was cool...I understood the majority of it...she asked if Seth was deaf, how old he was, how many kids I have and whether they are hearing, whether I am hearing, and told me I was very thin to have a baby so young. LoL! I was a little flustered when it came to answering and my brain was too fried to actually converse with her instead of just asking her questions, but still...it's a start!

We spent the afternoon at our neighbor's birthday party, then came home and baked sugar cookies, and got a little artistic with them. The kids thought it was super fun to get messy.

Now, the older kids are asleep in bed, I am on my own with Seth, and we are watching Days of Our Lives. Man, Stephanie is looking gorgeous!

I'm going to take some "me" time, but I have some posts in the pipeline. Let's hope I get a chance to get them out of my head.

In the meantime, enjoy these pictures of the two kids who actually enjoy the camera.

Hope you're having great Saturdays, everyone! I am planning to lounge around for a while, go to bed, and get up bright and early for church! I am in a connundrum, though...there is this certain cookie that I am sooo hungry for, but I can't replicate it no matter how I try. I thought it was a sugar cookie, but I think I was wrong. It is light colored like a sugar cookie, with sugar on type, but it is so soft, and it is a some kind of drop cookie, I think. I am on a mission. Night!

One of "those" days...

I have a sick-ish kiddo at home, and Seth had his usual litany of appointments...today was the audiologist. Jace is very scratchy and whiny, and when I put him down for a nap today, he said "Wait, wait! I need to give the fishies a hug and a kiss too!"

The kids are huge fans of my new tattoo...they love that they can pick "themselves" out in it, and Ava keeps wanting to touch all the fish.

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I found out yesterday when Seth did his early intervention evaluation that he is within normal limits for communication! For a deaf baby, that is a HUGE deal! The longer we can keep him on track, the less time we will have to make up for once he gets his implant. Considering he cannot hear at all, the fact that he has so much expressive language is really, really exciting. He is also at an age appropriate level (his real age of almost five months, not his adjusted age of just over 3 months) in his congnitive, adaptive, and social skills.

The not so good news is that his gross motor skills are significantly delayed, even when his adjusted age is taken into account. So he is going to start physical therapy weekly along with his speech therapy. Truthfully, I am...tired, just thinking about adding something else. We'll do it, but I am tired. We do all kinds of play with him...tummy time, baby pull ups, everything, but he still really struggles (Or actually, doesn't stuggle, at all). During tummy time, he still just chills with his cheek on the mat, taking everything in without trying to lift up his head or push up on his hands at all. His pediatrician said after seeing him that maybe there really is such a thing as a baby who is too content. =)

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I am really hungry for Bruschetta. That is all.

I did it!

A few weeks ago, I decided it was time to take the plunge and get the tattoo I've been planning for two years. I knew I wanted it to be for our family, and have Jesus Fish in it. My lovely friend Sarah drew it for me.

I decided I wanted to be able to see it all of the time, so I chose my wrist. Here is my wrist about 8 pm this evening...

And here is my wrist with it's new decoration.

There is a fish there for John and I, and for Ava, Jace, Eli, and Seth. Eli's fish is a slightly different color, which should show up more at the tattoo heals.

And here is me in the middle of it all:

Thanks SO much to Phil Holt at Red Letter 1 in Tampa. He did an awesome job and made it a relatively pain free experience for me!

More details later...I am beat!

MIA

Sorry for the radio silence...or should I say blog silence? I have been working on not getting sick and on keeping up with my kiddos, and I didn't make it on to post. We also have family in town and one entire evening was spent hanging out at Chuck E. Cheese, so let's face it...we had better things to do than blog!

I spent all day today at a really cool seminar offered by Cochlear America, manufacturer of the implant that Seth will be receiving. One session was on the surgery itself, and the other was on the benefits of binaural (both ears) hearing.

It was really a treat to get to go to it, and I met an AMAZING eight year old girl who I truthfully did not even know was deaf until she showed me her (adorable) processor with bear stickers on it. She loves gymnastics, her favorite color is purple, and, for me, she is now the poster child for what kids with implants can do. She is a mainstreamed second grader and she is adorable!

Seth charmed everyone as usual, and I have to confess I am getting so antsy to get the show on the road, here! I can't wait to see what these implants can do for him and I want to start now! I know I need to be patient, but it is hard to wait! It's like when you finally meet the guy you want to marry...you just want the future to start right away, you know? Or maybe it was just me. =) I remember being a lovestruck teen a couple different times. Lucky for me, my future did NOT start right away back then!

Here is a cute Jace moment to make up for my time away. Tonight when we were praying, he said "Dear God, thank you for my mommy. Thank you for her hair, and her teeth, and her eyes, and her glasses. Thank you for her smile. The end." As he named off each part of my face, he touched me on that spot softly. It was very cute. Talk about praying specifically!