Activation Day

Dear Abel,

I used to write to you monthly. In my letters, you were my baby- an extension of my own soul. I loved and cherished your first year of life. Your birthday came and went and typically that's where I would stop writing so often. Your story of your babyhood just didn't feel quite done yet, though. I knew I wanted to write you again. When we found out your were deaf, I felt so scared that I wouldn't be able to provide for you what you needed. My sign language was/is limited and although we've been learning together, I knew you needed more. I yearned for you to understand us one day, to be able to talk to your brothers, and enjoy the simple pleasures of music. I was so glad to find out you were a candidate for cochlear implant surgery. That excitement diminished as I learned more about the procedure. It was intimidating. I started second guessing our decision even after your surgery. I can't tell you how many times since you were implanted a few weeks ago that I thought to myself that I wish we'd never done the surgery to begin with. You were perfect as you were anyway.
Activation Day rolled around and I was so excited. I wanted so badly for this to be a happy day for you, but you were under the weather with an ear infection and I ended up crying a lot that day. I hate to see any of my babies in pain. Still, you pressed on as you always do. You're such a tough kid already! You've been through a lot in your short time here and you have taught me that I can be strong, too. We activated one side and your reaction was much like we expected:

Bless your sweet little heart. It turns out that hearing for the first time is frightening! But you know what? You're enjoying it now. I see you getting super still, focusing intently on making sense of your new found hearing and I'm so happy we decided to do it. It feels like I can teach you now. Another door has opened for you. You and I will always have our bond that allows us to communicate without words or signs, but now when your family talks to you, you can listen. I have faith that you will speak, too. Your appetite for learning inspires me, too. You've given me so much in your 21 months!

I love you so much. Happy Hearing Birthday to you!

This is when we activated the other side. No tears!

The Bionic Boy- post surgery notes from Mama

I keep thinking this will all get easier to deal with. I look at how far we've come as a family in the past year and think it must. Less than a year ago, we started accepting the fact that our dear Abel wasn't progressing like a typical babe. Later, we found out he was deaf. Meanwhile, we were struggling with the financial issues that come with buying a house, paying for graduate school, and planning for a new baby to join the family. Pile on top of that, the stress of carrying another human, birthing him, and nurturing him while running the other two kids to doctor appointments, therapies, and "school" and I was feeling so stretched. Did I mention I tried my hand at starting a business, too? It was all too much. I just felt like eventually this season of our lives would slow down and get easier. I wasn't consciously creating a timetable for this, but I must've because somewhere in the back of my mind, I thought life won't be as scary once Abel has his surgery. I knew it would be a long road with many hours of speech therapy and driving to audiology appointments. But I also thought that the scary part would be over. He is out of surgery. He did well. Finally.

But you know what? The terrifying part has just begun. I didn't prepare myself for what life would be like post surgery partly because the people I spoke with and read about their experiences with the surgery said recovery was normal. I guess Abel's recovery has been fairly normal, too but he has had some other symptoms that are concerning. So what has it been like?
The ride home from the hospital that evening was rough. We were all so tired from a long day and had a three hour drive ahead of us. Abel was super groggy and nauseous (yes, he threw up on me) and so so pitiful. Even under anesthesia, he had quite a 'tude. He threw his paci and juice cup no less than 50 times on the way home. He was not happy and had a hard time sleeping in the car.
Post Surgery Day 1

We roused him around nine that morning and started trying to get him to eat and drink since he hadn't in so long. He tolerated a drink but was in no condition to eat. We could hardly get him to move honestly. He laid on the couch all day and it seemed as if his spirit was just completely broken. We changed his diaper, gave him meds, and moved him when he needed it (all things he would usually protest but was too tired to care). He fell in and out of sleep all day. We turned on cartoons and he camped out on the couch. His eyes floated toward the t.v. but he wouldn't lift his head to look at it. It started to alarm me. I wanted to get him moving and create some normalcy (b/c he has never spent more than 20 minutes straight in front of a t.v.) so we loaded our two youngest boys in the stroller so we could go for a walk. Still, I noticed his head was flopping around like a newborn. It was as if he couldn't control it. I thought maybe it was due to his large dressing so we decided to take it off an hour or two early. When we took it off, it didn't improve his head issue but we were pleased at how the incisions looked.
Day 2
He was up crying through the night so I think he had some pain. We brought some medicine in his room that morning and began the process of cleaning his head and ears. Applying creams. That sort of thing. He was not happy, but we were feeling hopeful because when we scooped him from his crib, he was standing up! That was a complete turn around from the day before. When we finally got him cleaned and ready for the day, we took him to the kitchen where he ate his first good meal in days. Afterward, we put him on the couch again because we noticed that his balance was still very much off. It broke my heart to see him want to move and play, but then get defeated when he couldn't because he was stumbling and falling so much. I even texted my mom and sister expressing my fears that we had done the wrong thing. I started to question everything. I took to facebook and asked for prayer because I truly believe in the power of prayer. By the end of the day, he was getting around so much better. I could tell he was still in pain, but there were smiles that day and he played and toddled like one and a half year olds should. That night, his temp spiked and we were worried again.

Day 3
J had to go back to work but I was thankful that he woke Abel up and helped me get him ready by taking care of his wounds, administering medicine, etc. I'll be honest- he has done most of the work. I get so upset trying to hold an angry, sad and in-pain toddler down to get these things accomplished and J has been so thorough in taking care of our boy. I'm lucky to have him. I expected the day to be so hard, but it wasn't. Kinley went off to Mother's Day Out and Merit slept much of the day so I could focus my attention on Abel. He did well. I noticed early on that he was leaning in on his right side and that worried me, but it slowly went away as the day wore on. His ears sticking out/swelling seemed to look better as well. He started walking more normally throughout the day and we have hope that he will continue to improve.

This has been emotionally taxing on me. I wish I could take his place. I wish I could take his pain. If only I could be deaf instead. But I also know that he is now a part of the bionic community...and what a great one it is. We are so grateful for this miracle procedure and we're hoping it proves to be one for us. More than anything, though we want Abel to be his happy, feisty self again. God is The Great Healer and I know He has him in His hands. Thank you all so much for caring about this journey and for joining us in praying for this sweet child. THANKS SO MUCH!

The Big Day

If you're reading this on Friday, there's a good chance that Abel is in surgery at this very moment. Surgery that will open up his head and eventually, hopefully give him the ability to hear. Please pray. It's Wednesday night as I write this and I'm a nervous wreck. In an effort to focus my head, I thought I'd answer some questions I've gotten recently about the procedure.

How long is it going to take?
We are told it should take between 4-6 hours to implant both sides. That does not count time spent in pre-op appointments and recovery.

After the surgery, will he just be able to hear?
No. Actually, he will still be deaf. After surgery, he will need time to heal. Two to three weeks after the procedure is activation day.

Is it all inside the head or ear? Can you see it?
The inside portion will obviously not be visible, but in order to make the cochlear implants work, processors will attach via magnet on the sides of his head and rest behind his ears. When the processors are taken off, he will not have access to sound. He'll still be deaf. Processors typically aren't worn around water or at bed time.

What do you think his first word will be?
You know, I don't even let myself think of this. You might think that once he is turned on that he can start talking within weeks, but it's not that easy. His brain has to be taught what these noises mean. I can't even explain it, but I do know that I'm going to have to be realistic about this process or I'll go crazy. I'm trying to take it one day at a time.

Are you going to record it?
As I mentioned, he'll be activated weeks later. That means, they'll begin the process of turning on his sound. These are all the cute videos you see on youtube and facebook of the kiddos hearing for the first time. While these are all adorable (and often make me cry happy tears), they also aren't typical. It's much more common to have a crying reaction or no reaction at all. Think about it...it's probably alarming to suddenly have a new sense. To hear for the first time when you're less than two years old? It must be frightening. Still, we will totally record this awesome moment in our lives. It will be magical, no matter how he reacts.

I'm keeping the faith.

Jeremiah 29:11 says, "For I know the plans I have for you (Abel!) says the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future."

Celebrating Small Miracles

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

-Albert Einstein

Happy Tuesday evening- or perhaps Wednesday morning? I don't know when you're tuning in. I barely know what day it is anymore anyway. I don't want this week to slip by without telling you some of my small miracles that have happened to me as of late. Life is good, y'all and so is this stuff:

Is a bullet list okay? I can't form paragraphs right now.

*Abel has a surgery date! wooohooooooo! I'm leading with the best (Still you should keep reading because the other stuff is cool, too). He is scheduled for his first cochlear implant surgery in early September. If you find yourself in prayer, I hope you'll say some for our sweet little man. We are thrilled for him and, of course, slightly nervous. I'm praying that God will bless the surgeons hands, that Abel will be protected before, during, and after surgery, that our family (of soon to be FIVE) will adjust well to all the changes, and that God will grow our family through this and refocus all our minds on Him.

*Also? Last time we talked about my pregnancy I may or may not have mentioned that my blood pressure was climbing, I was experiencing awful awful heartburn, and had other unpleasant symptoms. I also recently joined up with Young Living. I'm so glad I did. I was a total skeptic, but after the last few weeks of experimenting with different oil combos, I'm a believer! I'll share some of my success stories on here via cute, edited photos because I like to create things just to pin. I'm lame. Anyway, making money with YL was not even on my radar, but hey, I'm not going to turn it down. If you want to sign up under me, let me know. I'll help you in any way I can. I'm pumped about this new (to me) resource to help my family feel better. I might even incorporate some oils into my upcoming labor and delivery. That oughta give the doctor a nice chuckle ;) The best thing that has happened since I started this crazy oil lady journey is this:

I was having the toughest time sleeping because I kept waking up in the night with extreme heartburn and burning bile in my throat (I know, gross. Sorry). Anyway, I was pretty miserable. My mom, who got me into this oily lifestyle, prepared a capsule for me of four drops of Di-Gize plus olive oil and for the first time in four or five days, I slept--gloriously--all through the night with no problems.

In addition, all these hormones sometimes cause headaches. Mine are gone within minutes just by rubbing PanAway on my temples and the back of my neck. These, my friends, are miracles.

* I met a potential friend (and fellow jogger) in our neighborhood today! Most of the people in our hood are older so I was happy, happy, happy when she strolled up with her young son in tow.

* I made it 37 weeks.

What small or big miracles are you celebrating this week?

How To Parent?

Go here. Do this. Don't sleep because the heartburn is so bad. Clean up. Repeat.

My life has been a series of this lately. Over the past six months, Abel has had appointment after appointment. At first they were trying to figure out why he wasn't talking. At first, there were primary care doctors and developmental specialists. Then there were audiologist and ENTs. Now that we know he's deaf, there are all of thee above and then some. After we found out the news, he was added to an early intervention program and I mindlessly signed paper after paper thinking I was doing something that he needed. They pay when our insurance won't so it certainly is beneficial, but there are some aspects of the program that I didn't understand what I was getting us into.

Once a week (which is a lot when he also has speech once a week and I have a doctor appointment weekly, too), someone comes into our home and...tells me how to parent? I don't know. I still haven't figured out her role. In the beginning stages, I thought she would be there to encourage speech development, educational play, or help him with his sign language. We sat down and developed overall family goals that left me feeling like this was some sort of program to help parents who have no idea what they're doing. While it may very well be the case that I'm super overwhelmed by having (soon to be) three kids in diapers, I am also not readily accepting of having someone come in and offering additional advice. The truth is, unless you've been in these shoes, I don't think you quite understand how my day is. Many days, I'm barely making it. If your kids were spaced years apart, if you had a full time job, if your family lived right down the road as you parented--these make one's journey very different. Couple that with not knowing the stress that comes along with having a child who has special needs, it makes it difficult for me to relate. I know people have helpful advice, but I often have a hard time taking it to heart. I know how that makes me sound.
I feel as if the last thing I have time for is to sit down for an hour with someone and take suggestions on how to run my household and family. This woman is sweet...and honestly, I love having another adult to talk to throughout the day. At the same time, these home visits add more stress to me. The house will be perfectly clean and she walks in and suddenly the kids are throwing stuff everywhere. Last time she was here, Abel climbed up on the porch table and threw off all the place mats while Kinley stuffed his head in a plastic bag. It's really no wonder they think I need assistance with motherhood.
And really, the program is voluntary. I just didn't understand that when I first started the program. Now, I feel like I have to do it because I took up the case worker's time and the woman's time by developing these goals and meeting up to sign papers, etc. Last time she was here she asked me to think of some things I wanted to work on next time. I thought all week and couldn't come up with anything that I think she can help me with. I mean, what would make my life easier? Well, for starters, it'd be easier if Abel could hear. This would make trips to the park a lot better because I wouldn't have to be directly in front of him to talk to him while I attempt to wrangle the other toddler out of harm's way in the parking lot. It would be helpful if I could breathe normally whilst doing this. It would be great if I wasn't waddling and feeling as if I'm about to pass out in the heat while we're there. These are things no one can fix right now. I'm okay with that. These are things throughout the day that you just figure out. Unless you're going to grab a kid when he's about to topple off the highest level of the playground out of sheer joy to be outside, I don't think advice will help the situation. Unless you want to push one in the swing while I take off toward the other to encourage him to share the sand toys instead of hoarding them all then I don't quite have time to think about how YOU would have handled the situation. Remember, I'm barely making it.
I can't even focus on what is being said in these sessions because I'm busy parenting. These kids require constant attention. Don't climb that. Don't eat that. Take your fingers out of the toilet. Please find an inside voice BEFORE MAMA GOES ABSOLUTELY NUTS.
I racked my brain, but I just couldn't come up with something for her to help me with. I probably offended her, but I told her I didn't have any goals for her and I wasn't sure where to go from here. She sent me a text and then called suggesting we put off our meetings until after I have the baby and Abel gets his cochlear implants because life will "slow down". I don't think that's entirely true. There will be more audiology and speech appointments. There will be postpartum appointments. There will be new baby appointments. I will have a baby attached to my breast for about a year. Life is not going to slow down. I fear I made her mad when I suggested any of these feelings. It was not my intention. My intention is to make my house as pleasant at possible. I want to parent in a way that I'm proud of, a way that would make my Father in Heaven proud. I want to give my kids a happy childhood. I want to challenge Abel and the rest of my children to be the best people they can be despite any hurdles that might be in their way. I want the walls of this house to be accustomed to laughter and not yelling. Magic not stress. Happiness not worry. And I'm still trying to figure out how to accomplish this. Aren't we all?

Let's talk budgeting-

I've spent the majority of this pregnancy depressed if I'm being totally honest. So when my oldest son picked up a piece of mail, "read" my name on the envelope, and opened it and exclaimed, "Oh no. Another one" that was my breaking point for this week. As much as I try not to let my sadness and stress influence him, I know that it does. He's watching everything I do and listening to everything I say. I know it's not just him, too. Abel knows I'm sad...even Merit probably feels it. That just adds to my guilt.

I don't know if it's the influx of hormones or what, but I have felt mostly unhappy during the past year. We've had a lot thrown our way- many of these happenings are blessings, I know they are, but still it feels incredibly overwhelming at times. Right now, I'm wishing we never bought this house even though I love it. It just feels like a large money pit. There were so many projects we wanted to do to it and I wanted to decorate it, finally, because it was a place we were staying at longer than a year. It was going to be home. But with Abel's recent medical bills and mine with this pregnancy, it doesn't feel like we should be here. The house feels too big. It's a pendulum above my head.

I know that money doesn't matter. It's not ours anyway...it's God's. I get nervous, though and when that bill came today and Kinley pretended to be worried, too that just made me feel about two feet tall. When you're wearing your rose colored glasses and purchasing your first home, you don't think that something might come up that costs a lot of money. You don't think your child might need cochlear implants. You definitely don't consider that your insurance won't pay for it. I've been on the phone off and on all week with doctors and our insurance company, trying to figure out what's going on. It has been a mess. The insurance company is telling me one thing and Vanderbilt another. I'm trusting in God that this is going to work out in some way in His time.

Until then, this family needs a plan. 

What are some ways you save money? Cut out cable, cell, etc bills? Clip coupons? Budgeting tricks? What's the single most helpful way you've found to watch your spending?

Life With Toddlers

As a parent to a deaf child, you might think my house is quiet. Au contraire. It is anything but. I've seen videos of toddlers who communicate excitedly but quietly using sign and I think about how pleasant car trips must be for that family. Here? Not so much. My deaf toddler is NOT quiet. He is constantly chattering, which I'm told is a great sign for his future with cochlear implants. I spent most of this past year convinced he had croup because that's what he sounds like. My little seal is squealing and squawking over and over throughout the day. While I'm glad he's attempting to make sounds, it's also very trying on this mama who craves silence and peace. The seal-sounding-toddler teaches the hearing toddler that this sort of communication is not only accepted, but encouraged and thus they've created a little language between the two of them that is complete nonsense. LOUD NONSENSE. And it makes me absolutely crazy.

But I will continue to pour my heart and soul into raising these boys because they are my most important job and I love them so. Even when I'm pulling out my hair, I can't imagine a day without the crazy.

I mean, K is currently cah-rack-ing up at absolutely nothing as he jumps around like a little monkey on the couch. And Abel is stuffing his face full of crackers and signing "more food" and "more milk" even though he has plenty right in front of him. They are characters, these two. They're molding me. I hope they're pushing me to be a better mother and better person. Next month, I'll add another little boy to the mix. I wonder if he'll have his brother's curly hair or his other brother's ability to hear. Will he be able to hear mama whisper to him while I'm tending to him at night? Will he look like Abe and me or will he take after his father and Kinley? I can't wait to know. 

Exciting News from Vanderbilt

I promised my facebook people that I would write tonight about all the good news we got with A's doctors. That was before I drove three hours home with a fussy toddler. Now, I'm yearning for a hot bath and my bed. Ever faithful, I'll tell you all the good news without rambling too much...

The first bit of surprising news is that his hearing aids are actually aiding him. That was unexpected with his level of deafness. He is severe to profound in both ears without the amplification, but with the hearing aids on he is hearing at the level of moderate to severe. This means that if we are yelling in his good ear, he probably hears it as a whisper and only parts of the word. For example, if we yelled "ice cream" in his good ear, he would hear "Iii eee". Obviously this is not enough for speech development, but it is getting him used to experiencing sound. I was amazed at the difference at his testing with his hearing aids on! The audiologist was, too.

Little man was sedated again for an MRI/CT scan. He did so well. What a trooper I have! After the sedation, we carted him around to all appointments with little in his tummy and no nap. I expected it to be absolutely awful (and it was at moments) but for the most part, he soldiered on. I was nervous about the MRI/CT for obvious reasons, but today calmed my fears-

Dad to the rescue during a particular fussy appointment

We met with the surgeon who will perform the implantation. He told us:

1. Baby A is a candidate for bilateral (meaning both ears/sides) cochlear implants.
2. He also believes it unnecessary to seek genetic testing for a cause. He told us that from the information he has from birth history, infancy, and the recent tests that there's no reason to suspect any other underlying problems. In other words, some people are just deaf and there's no other reason for it. That made my mama heart happy. In the back of my mind, I was worried about a syndrome or something that we just hadn't discovered yet so it set my mind at ease a little. In addition, I was worried about Baby M.
3. The surgeon also wants to do the surgery ASAP. We do not have a surgery date yet, but they are working with our insurance for approval. He said the earliest he could get us in is likely August, but definitely before Christmas. It will depend on how fast we can hear back from the insurance company.
4. Lastly, he told us it was up to us if we wanted to implant both at the same time. I always thought, "Why wouldn't anyone want to do it all at once?" I assumed it was an infection worry or longer times under anesthesia. I was way off base, there. The doc said that there was a 10% chance that he could lose his balance and never regain it if both ears are done at the same time (If only one is done and balance is lost, the other side compensates and often balance is restored). That number seemed so high to us. It scared us enough to ask to have the surgeries done separately. It's not completely ideal, but he will have his left ear (bad ear) done first and then the right ear will follow within six months. It makes me a nervous wreck to know that he'll be having surgery twice, but that's what we've decided is best for him. For those of you who do not know, he will get his implant but won't be activated until 3-4 weeks later.

It's going to be a long road for him. We're excited for him, though. The speech therapist and audiologist are confident that he will excel with the implants. We were in the appointment for speech analysis and I was amazed at his ability to repeat and mimic. He does attend to sound when he hears it with the hearing aids and he is doing so well with sign language, too.

Picking out his processor colors

I'm proud of my boy and am so incredibly grateful for all your prayers for him over the last five months. Please don't stop. God is working a miracle in this sweet kid and I'm happy to be his mama and witness it first hand.

Decisions, decisions

I talked to my bestie yesterday for fifty two minutes on the phone. We both found an open window of time, which is rare, and were able to just talk without interruptions. That hasn't happened in a long time. Feeling no time constraints, I found out exactly what was on my mind because I just couldn't shut up. It all came pouring out. All the thoughts, concerns, fears, and expectations of Baby A's upcoming appointments with the specialists at Vanderbilt have flooded my head. I can try to distract myself, but when I attempt it I find myself gravitating toward books or social media which doesn't always help because I am drawn to information about Cochlear Implants (CIs). I end up reading the good and the bad during the little free time I have. The bottom line is that this is a huge decision, one I almost don't feel is mine, but it has to be.

Ultimately, I want God to just sit beside me and tell me what to do. I wish I had step by step instructions from Him. Instead, I hear nothing. Maybe it's because I'm not listening. Maybe it's because I'm not praying enough for His will. My prayers have been full of tearful hope that Cochlear Implants will be the route we take and that he will thrive with them. But should I not be asking that? I don't know. I start thinking about how his sweet, perfect head will be opened up to have something foreign inserted and all I feel is that this should be a personal decision. I am his mother, though. His dad and I will have to make the decision for him and it's so scary.

These CIs are modern miracles. I truly believe that. It's incredible really. Even if they work and Baby A is able to hear with them, there are x number of things that could go wrong. They could stop working. Get infected. Annoy him. Et cetera. The thing is- he will always be deaf. At night, he will take the processors off and it will be silent. When he gets in the pool (unless he has specialized equipment), he won't hear. He'll always be deaf. There's nothing I can do to change that. It's with that knowledge that I want to equip him in any way I can now. The time is just ticking away for oral language learning and sign language and I can't tell you how frustrated that makes me. Professionals will likely tell me not to teach him to sign and to encourage him to focus on the sound (he will hopefully one day hear). But he'll always be deaf. I feel lead to give him something. I might feel differently if he was young, but before I know it he will be two. TWO years behind his peers.Two of the most important years in development. I look at his older brother and how much he has progressed with language and cognition and it makes me so happy for him and just so frustrated for my second born who will have to work doubly as hard as many of his hearing peers.

Yesterday someone with the early intervention program told me to just breathe and to take time to absorb everything. I feel like I can't. I don't want to stop looking for different avenues that could help him. I want to move forward. I don't know which way is forward, though. I'm feeling so lost with all the different appointments and therapies and programs that have been suggested. Needless to say, I'm counting down the days until we can make the trip to Nashville again and find out more about what we might expect down the road. I'm trying to relax and breathe. 

He's alive. He's happy. Thanks be to God.

Audism?

It took me so long to write to all of you about my son's hearing loss, but now that I've opened that gate, this space has become an outlet for me. I can organize my thoughts here and write through my concerns. And those are plenty, let me tell you. Most of you reading this right now are hearing adults, like myself. It's likely that the extent of your knowledge of hearing loss is confined to old age or your cousin's best friend's sister's daughter who wears hearing aids. My point is that I just didn't know much about the deaf, Deaf, or oral deaf communities until now. Did I lose you? I meant to a little. There's so much I didn't know and so much I'm still learning, but I thought I'd bring you along in what I'm learning, too. I'm in the middle of writing a new normal into our lives and I'm trying to figure out exactly what that is.

Before Baby A's diagnosis, I knew nothing of the controversy that exists in the deaf and hard-of-hearing community. I had heard of cochlear implants, but I really wasn't sure what they did in comparison to a hearing aid. It's quite different (google it). What I'm finding now is that there are passionate, opposing opinions on how to deal with children who cannot hear. With the technological miracle of the cochlear implant (CI), came much praise for the devices that could make deaf individuals hear! At the same time, a whole community of non-hearing folks were cringing. What would happen to their culture? Would sign language be a dying art? Honestly, it was something I had never thought of. The only reason it came to my attention was because I was searching online for information for my Baby A and I came across a picture that confused me. It read "Stop Audism" in a poster board like quality. Immediately, I searched my brain for a definition of audism. Couldn't find it. I used google instead ;) Audism is the notion that one is superior based on one's ability to hear. Whoa. It felt like I was wading into a swift current of waters I knew nothing about. I was about to be carried off to who knows where. I thought about it for a few minutes and then shut down the computer because I felt overwhelmed. I tried not to think about it and I was successful for awhile until his next appointment with a new audiologist who asked me point blank- "What are your goals for him? Have you thought about if you want him to hear?"

Initially, I told doctors and whoever else asked that my goal for him was to function normally among his peers. I know people shy away from that word "normal"but what I mean is that I want him to communicate as we do because that's what I know. That probably is a selfish view, but at the same time it is the hearing culture that I'm used to. To extend that, though, I see the value in learning to use sign. I've always thought it was something we should be teaching all along. It certainly helped my first born before he was able to talk. I knew that I wanted my second born to expand himself and learn ASL, too. As I say that, it's my hope that he won't ever need it because I want CI for him so badly, but rather that he will use it to, in some way, identify with this culture that I might never be a part of or help others who started off much like he has. Who knows what God has in store?

I'm so anxious to move forward in all of this. I know you all know that. It has been my desire from the beginning to make these doctors work faster, to fight for my son. I know he's young and has the ability to overcome this obstacle, but time is so precious in language development and learning. Viewing research on the matter is sobering. As we wait on this and that, I can't help but look toward the future and think about what approach to therapy we will take. Should we stop using sign and try to teach him to rely on the sound he does hear? Is that even an option with his level of hearing loss? What happens if he isn't a CI candidate? Am I capable of quickly learning and teaching sign language? What if? What if? What if?

It can be overwhelming, but there are so many stories out there that are making me smile, too. Someone shared this on my facebook page today and it gave me so much hope:

"Today I attended my brother-in-law's high school graduation and was moved to tears by the valedictorian's speech. This made me think of you: he was born deaf and his condition wasn't detected until he was 4 years old. Against all odds and many negative opinions of "experts" who said he would never be successful in school and may never learn to even speak, he graduated with a 4.69 GPA and delivered one of the best valedictorian addresses I have ever heard. God is so good and I know He has great things in store for Abel too!"

I am confident that God is working for the good of us because we love him. I'm happy and anxious to help my boy in any way I can. Thank you for your prayers during all of this. I feel them.

Thank you (a hearing update)

I found out today that our insurance won't cover any of the expense of A's hearing aids. We are signed up with a program specific to TN that will eventually pay for the hearing aids, but we will have to wait. No one seems to know how long. I've been frustrated at this process because my hands are always tied. The doctors/audiologists agree that he shouldn't wait to start using the hearing aids. While they won't likely help him to hear, they will keep the nerve active so that when he eventually (hopefully) is implanted with the cochlear device, it will be beneficial for him. Some people say this particular program will get organized within a month or so. I've also heard stories of folks who ended up waiting 6-9 months to get them to pay. That is not an option.

I've been calling them all day today to find out more information, but it has been to no avail. I can't get them to call me back. We are likely just going to bite the bullet and pay, but in the back of my mind I'm thinking, "How many more expenses like this will pop up?" Between all the medical bills and the new babe on the way and the new house, I feel so stretched financially. Not a day goes by that I don't think about finding a job. I don't know anyone who would hire a pregnant gal who is due in just a few months, but it's a thought I entertain.

In addition to that news, I also talked with an audiologist who said that his hearing loss was likely genetic. We will go for testing next month, but she said due to the history of his child birth (normal, natural) and babyhood (normal), she could see no explanation for it. The degree of hearing loss he has is not something that infections could cause. Which means, we should definitely do genetic testing to see how at risk baby #3 is for the same issues. Of course, that makes me quite sad. 

I was feeling so overwhelmed by it all today and then I got to the mailbox and found a card addressed to my sweet boy. Inside were names of all the people in Philadelphia, TN who had been praying for him and that brightened me up. Thank you all so much for your prayers.

God is writing his story and mine and I wouldn't change a thing. I just need to be reminded occasionally that He's in charge. We have nothing to fear.

"Cast your cares on the Lord and he will sustain you..." - Psalm 55:22

Doc Says-

"Share these" he says as he throws me a bag of 2 servings of M&Ms and saunters out the door in a suit and tie. Off to another business dinner, I'll imagine he's having steak and wine while I'm heating up chicken nuggets and pretending mashed potatoes is a vegetable. There's no chance these boys are getting any M&Ms. They've been nuts today. Mostly Baby A. He has yet another ear infection. He just can't seem to get rid of them and they are making me crazy. He's a very cranky young man these days and is making it hard on me to get anything done. It seems like my house is always in disarray. I try, I do, but you can only sweep up crumbs and wipe up milk eighty five times a day before you're just like "BRING ON THE ANTS- I'm sitting down".
I'm so tired. There's not enough time in the day and there certainly isn't enough time for me to sit down and write here, but I'm doing it anyway. That's where I've been lately- tending to my children, going to school, and working on my business in between baby #3 doctor appointments. It has been nuts. I have sat and waited in a doctor's office three times this week and I realize it's Thursday. The rate we've been going, I'm just crossing my fingers that number doesn't climb by the weeks end.
I have exactly eight days left in this semester. Everything EVERYTHING is due right now and these sicknesses my boys keep struggling with often throw a kink in my plans. I'm going to get this all done, though...and then I'm going to relax start another class. Boo.
Anyway, I really appreciate all the congratulatory comments you made on my last post about the babe starting to babble. I really was beginning to think he was on the mend and that when he got his tubes put in his ears that he would be talking up a storm in no time. I was hesitant to feel that way, but still I threw my hopes into that and I shouldn't have. Monday morning, I took him to a developmental specialist who assessed him and apologized profusely that it took her so long to see him. She said, "I don't know how he slipped through the cracks! We should have seen him after his referral in January." "Well, yeah", I thought, "Someone is finally taking me seriously about his language delay." She stepped out of the appointment to call Vanderbilt and try to get me squeezed into an appointment as quickly as possible after she heard about the delay we were experiencing in Chattanooga with both the ENT and audiologist there. She said it was unacceptable. She called Vandy and they didn't have any openings until the end of July, unless I could come the next morning because they just had a cancellation. I told her I absolutely would and began making plans to travel in the awful weather so we could get there to get him checked out by "the best." I got too worried to drive that night so I ended up leaving bright and early with my sister the next morning to drive to Nashville. The folks there relayed a much different diagnosis to us regarding his hearing. She told us that while the tests they were doing weren't as accurate as the ABR, she was confident enough to tell us that Baby A is experiencing severe to profound hearing loss. He's deaf.

I could tell you a million different things right now that I've been thinking about. It's mostly guilt. Confusion. Worry.
We started the process of getting him cochlear implants that day. She said that what she saw would need to be confirmed by his upcoming sedation ABR/tube insertion but that she was ready to get us started on this path because it does take a long time. This coming Monday, we will take my sweet boy off to have his ears molded for fitting of hearing aids. We've been told that the hearing aids will not allow him to hear, but rather get him used to having something on his ear and the sensations of possible sound amplification. During the tests, she had the machine up as loud as it would go (hurting my own ears) and he did not respond so she doesn't expect these to help at all but it is just part of the process.
I know he's usually happy. I know he'll be just fine. Still, I often break out in tears because K tries to talk to him all day. I'm sure they will develop their own way of communicating, but right now as I watch it just hurts my heart. I wish I could help Baby A. We have lots of specialists in our future who can, though and so I'm working diligently to get all these lined up for him. That's where I've been lately. I've been busy.

I'm hoping things will slow down soon and I can venture back to the land of blogging. I miss it very much. Thank you all for the texts, calls, and comments you've left already about my boy. He's going to be just fine and is exactly who God wants him to be and I can find joy in that. I'm so happy to be his mom.
Thanks for checking in with us.

Love,

*Photos by Becky Davis

Glaringly Obvious

Is corn and tater tots an acceptable meal?

Wait, don't answer that. That's what I just finished shoveling down and that's what I just fed my kids, too. Some days are like these. I rush and rush, going to doctor appointments, calling other doctors, trying to get paperwork for the chance at some answers. It feels like that's all I do now. I've barely left the house unless I'm headed off to an appointment of some sort. 

It's like I've asked and asked God what my purpose is here on this earth and He has answered me. You are this. You are that. Most importantly, you are "Mom".

My boys have been sick off and on for weeks. Just today, we discovered Baby A has an ear infection while he was going in for his routine checkup. I didn't notice. He's a happy kid usually so it just wasn't evident. No fever, nothing. It makes me wonder how many I have missed and if that has been the cause of his hearing loss. I can find guilt in every nook and cranny of my brain, wondering if I had done this or hadn't done that if things would be different.

Amidst the wiping of little noses and the cuddling of fever-ridden littles, I feel my purpose overwhelmingly, glaringly obvious. I make a difference in these lives. My hands are not idle. I'm working. I'm working diligently.

That's more than enough.

I can't talk to my child

I just need to write. I usually try to respond to all the comments on the previous post prior to posting a new one, but I'm feeling a little overwhelmed this morning. If we're friends on facebook, you might already know the news. Baby A can't hear. In my heart, it feels so devastating to read that. It's heavy. It hurts. I hurt for him.

We don't know the extent of his hearing loss yet. We DO know that there is some sound in his ear, but very little compared to normal functioning. The next step is the sedated ABR. We couldn't get him to cooperate by falling asleep at the test yesterday so we will have to take him back to learn more. I'm eager to find out how to help him, but in the same breath I'm mourning a little.

I know I shouldn't. He's healthy and not being able to hear is what he knows, but it's not what I know and all I can think about is how I can't talk to my child. Every sentence I utter, I go over the very limited sign language I know in my head; I'm lucky if I can sign one word out of everything I say. I don't know where to start and I feel so overwhelmed. I feel so bad, though I know this is just a thing. Something I couldn't help. Still, as parents we yearn to protect our children from hardship and I just keep thinking of all the moments in his future that I won't be able to shield him from...

*the looks from strangers insinuating that he's badly behaved when he screams (his only way of communicating) for something

*learning to read (how do you read a book to a child that is hearing impaired?)

*and what if kids poke fun at his possible hearing aids or delayed language development?

I've just got to stop because I'm in tears. I want desperately to help and my hands are tied right now. I can't.

Thank you so much for your prayers as we move into this new chapter of our lives. God is with us and he has plans to prosper us and not harm us. I believe that.

A's Ears

You asked so I will try to answer as fully as possible without boring you to death. Baby A's hearing test did not go so well. We were taken into a room with a speaker placed on either side of us. I held him in my lap on a chair while sounds and movements projected from the speakers randomly. The only stimuli he responded to were the ones that could be seen. His little head didn't turn even the slightest bit when only noises were made. It made me sad, but I wasn't surprised.

After the brief test, the audiologist told me that while the results weren't great, they also weren't entirely accurate either due to his age. She took a peek into his ears and said the eardrums seemed to be working and so that was a good sign. The ENT (ear, nose, and throat) guy encouraged me to continue testing with more reliable information. The next step, I was told, is to have the ABR administered to him. Because of his age and inability to sit still for the procedure, he will have to be put under anesthesia. Of course, this is super scary for me. Initially, I said that I wasn't going to do that. The doctor then told me that there wasn't much else he could do for him so I asked him if he thought I should go ahead with the test and he said, "If it were my kid, I wouldn't hesitate to do this."

I thought about it on the drive home and the old saying knowledge is power was the message I kept returning to. If he does have hearing problems, he needs help now. We need to learn and teach him sign language, etc. No point in waiting.

So I suppose we're moving forward with this.

my secret

There's been this little secret, one I hardly talk about on here. I mention it to friends and family, but I've never really talked about it here because that makes it real. It's out there and then everyone knows what consumes even the smallest corners of my brain. It's about this little cutie:

He isn't talking. Not at all.

Everyone always anxiously awaits those moments when their baby starts to babble or coo. Recording devices are brought out and pretty soon social media is up to date on the tiny baby who is making language sounds at just a few months old. It's incredible really. That's why when Baby A wasn't doing those things, I pushed it to the back of my mind knowing that both my boys typically hit their suggested milestones just a little later than most. He'd be okay.
He's 13 months now. Still, the only sound I've ever heard from him are cries and screams (and the best laughs you've ever heard). He doesn't say ma, da, ba, la much less "mama" or "dada". It makes me sad for him, but even more than that it makes me irritated on a daily basis which in turn makes me feel awful for feeling that way. The poor child can't tell me what he wants. I know his peers are leaps and bounds ahead of him in that department. I suppose we should start diligently teaching sign language. It's not just me that it bothers. His brother is frustrated daily with him because some days all he does is scream over and over. He wants to talk so badly but he just can't. I don't even know where to start.
We are starting, though. I mentioned to the doctor (again) his issue in development and he seemed pretty alarmed. We've switched doctors so many times as we moved that I don't think he quite understood when I mentioned it the first few times to him. There were other issues to attend to. His docs before that continued to tell me to keep an eye on it. Well, I have and what I've noticed is zero improvement. After speaking with the pediatrician at his one year well baby appointment, I got some other appointments set up. The first step is to check his hearing. Friday we went to an ear, nose, and throat guy for five minutes just for him to tell me that he couldn't check his hearing because of ear wax build up.
The kid has always had a lot of ear wax.
This is getting gross, isn't it?
Anyway, we are painfully dropping in medicine to those sweet little ears every night to flush them out for his next attempt at a hearing test on Wednesday. I'm trying not to be worried.
If it's not his hearing that is the problem, then we are all set to see a developmental specialist for a complete review.
I was talking to my aunt about it over Christmas and she said something that I'm trying to focus on. I'm paraphrasing here, but it was along the lines of:

God made him who he is. It doesn't matter if there's something "wrong" in our eyes. He's still perfect the way he was made.

And so I'm embracing her words. I'm lucky to have her wisdom in my life and I'm trying to change my thoughts toward positivity. I know it will all be okay...

because really? He is perfect.