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!

Hard Work

Some days it seemingly appears out of nowhere although it must have been brewing for a long time. The ugly cry. The yelling. The being the mom you don't want to be. It happened to me today. All my triggers were there, I just didn't see it coming. The other day, someone likened my kids to having triplets and while I can't put myself in the shoes of someone who has to feed THREE tiny humans every couple of hours throughout the night, I feel like I do share some struggles with the multiples moms. Mine are all still in diapers (judgment judgment judgment!), they all cry when they want something, and sleep through the night could be worse, but it could be a lot better, too. I end every day feeling as if I haven't been able to sit down and I truly haven't. Today, I did though. I should have known I would break down. After rushing out of the house, leaving behind a screaming preschooler with the sitter, I arrived at Abel's speech therapy. It all felt so pointless. He can't hear yet I'm driving an hour away to do this. I got home and felt so sleepy, drained. I ignored the house I should clean and the big boy I should play with. I put the baby in the swing and checked out. I don't want to be like that. I want to soak up every minute with the precious kids God has placed in my care, but y'all I'm tired. I don't know what's wrong with me.

J came home and we all went outside for awhile to enjoy some fresh air. When he came back in the house to take a conference call, I thought I'd check something online I've been meaning to research (our yard is fenced in and private). I stepped away for about two minutes and when I came back? Potting soil EVERYWHERE. All over the dog. In the crevices of smiles, teeth, and fingernails. Most notably however was the degree to which it was caked on the curly headed toddler who just had surgery on his head. I flipped.

Instead of smiling about how boys will be boys, I was mean and hurried them all to the bathtub. Trying to get dirt out of Abel's hair was only making matters worse and by the time they were semi-clean, I just put them all to bed despite the late hour. Then I cried.

Mothering is hard work.

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."

Surgery Up In the Air

Can I just talk honestly for a moment? Abe's surgery is coming up- at least I think it is. For months and months we've had this plan set in place, we've made hotel arrangements, babysitters, and scheduled off work. The plan was to implant Abel sequentially- meaning that he needs both sides implanted (bilateral), but we were planning on breaking up the procedure into two different surgeries spaced three months apart. We chose to do this because of a scary statistic we'd heard regarding balance issues when the surgery was done with both ears. We felt confident in our decision. Now, just days before his first surgery, we are having second thoughts. We've since done much research and asked around for professional and parental opinions and we've almost changed our minds. We want it done at the same time now. There are a whole host of pros and cons that I won't get into. Anyway, because I need that plan set in place- because I was counting on it- I feel unnerved now. More so than I already was. Yesterday, J called the surgeon to tell him we had changed our minds and talk to him about rescheduling or keeping the same date and implanting both that day. Just typing that out feels like fifty pounds of weight on my shoulders as it will likely change all the appointments we have set in place over the next few months. The Army taught me that I can't plan. I mean, I can, but I should have loose expectations of those plans coming to fruition. I don't know why I thought that when we parted ways with the Army that I would have more control. Anyway, I'm so nervous. Nervous that his surgery will be pushed back even further. Nervous what the surgeon, case worker, and audiologist all think about our decision (or indecision). Nervous that something will go wrong. Nervous that I'll never be able to speak to my second born and have him hear and understand me. Parents of kids with cochlear implants keep telling me- "Just wait! You will be amazed." I hope so. Right now, all I know is that Abel cries and screams at everything. He can't tell us what he wants so he just cries out of frustration. His signing is decreasing as we are trying to focus on listening and I feel as if I'm a huge disservice to him all around. I have so much guilt. The other parents I know who have a child with hearing loss do not have two other babes that need a lot of attention. They are working at home with their child in addition to the years of therapy that this sort of procedure will require. I don't know how to balance trying to help Abel "listen" and eventually speak when there are two other very loud little people thrown into the mix. It has been my thought since day one- I wish I could help him. I feel like I can't.

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.

Life is good, too.

It's almost as if I owe it to ya to post something fun. The stresses of the past few months haven't totally rained on our parade. We've been making sweet memories, too. This past weekend was just what I needed! It started off on Friday when my pal from college brought her sweet one year old over to play. The boys were napping so it was just us and I was free to chat with her and enjoy the company of her adorable daughter. It was almost strange to me because I had to keep myself from signing and every time she made a babbling noise, I almost jumped for joy at her trick before realizing again that it was likely normal for her. I can't wait until I can hear Baby A do the same. Music to my ears.

Friday night we let the boys eat ice cream IN FRONT OF THE TV (big mistake) while we watched Charlie and the Chocolate Factory. They were in heaven. I was happy to see them happy...and happy that I ran that afternoon because I was shoveling in the ice cream, too.

Saturday brought more wedding festivities for my best friend's upcoming big day. We drove to a nearby city to try on bridesmaid dresses. I will be postpartum on the day of the wedding so we're just going to guess what size I'll be and roll with it. Makes me nervous! Anyway, it was awesome to hang out with some ladies I haven't seen in such a long time. It made me happy to just be able to pick right up where we left off. Making new friends is hard sometimes and there's something so beautiful about old ones.

That night, J and I got a babysitter and enjoyed dinner and a movie. We ended up watching The Edge of Tomorrow and it was better than I expected. The other option he gave me sounded pretty terrible so I'm glad I ultimately chose this one. Good choice.

Sunday was nice, too. My friend who lives in sunny Florida was in for the weekend and came to stay with us that evening! The two of us went to see The Fault in Our Stars and then took ridiculously hilarious selfies in the parking lot that nearly sent me into labor. When I (finally) calmed down enough to drive home, we were greeted with a fancy, new Big Green Egg being put together. My husband and I have been saving up forever to get one and thanks to a family friend who gave us a great deal, we were able to purchase one. There's no buyer's remorse here, but we are seriously in that really uncomfortable financial range again that we have used it every single night since then. Must make it make sense! Every time a new medical bill arrives in the mail I get twitchy and want to fire up the grill.

There. Proof that life is still fun in our household.

Cray K Goes to the Dentist (Part 1)

I've got my coffee beside me and I've already battled and semi-conquered a printer issue this morning so I'm going to say that's a good start. I don't even want to do today. I cancelled one of my middle child's appointments today so that we could just do nothing. It has been crazy around here. Honestly, I have some doctor or specialist to go to every single day between the three of us. I cancelled his speech assessment because, well, he says nothing. The early intervention program I'm working with asked me to reschedule it so that I wouldn't end up paying for it. Fine by me, I guess.

There I was. Nothing on the agenda for Tuesday! I was delighted. Then my husband calls and tells me I need to make an appointment for Cray K to go to the dentist. You guessed it. It had to be today. Let's just forget that this is going to be an abysmal failure anyway. I fully expect fits, shaking, and a refusal to open his mouth leading to me barely making it back out to the car before I burst into crazy pregnant lady tears. I know he needs to go, but it would just be great if I could go to work like the other half of the world and send my husband to one of these appointments in my place. Just one. Just one so he can see why I'm so frazzled at the end of every day.

More and more, I find myself checking out. Yesterday, I made it a goal to start the 12 page paper I need to turn in next week. I got a pathetic outline ready which may or may not have read "INSERT CREATIVE TITLE HERE" and/or "Here's the plan, man."

 It's bad, y'all. I'm tired and there's no end in sight.

We can talk about happy things, though. Those aren't off limits. Perhaps next time I'll tell you all about my weekend with friends! Additionally, Baby A is signing up a storm. The pediatrician tells me that his visual language is up to par with his peers spoken language and perhaps surpasses it. In other words, he signs more words than most his age can talk. That was encouraging!

What do you have going on today?

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

There's lots of info in this one little post.

Pretty stellar weekend to catch you up on, friends! Because weekend breaks don't truly exist for stay-at-home-moms, I'll just start on Thursday. I was having a crazy, busy week and was feeling a little stressed. There was the sedated ABR test coming up and also the gender scan at my doctor. Lots going on! My friend, Rachel, who I easily haven't seen since high school or (maybe) college came over with her girls to visit. It was good for my soul, y'all. She's a wonderful wife and mother and now I live only minutes away from her. It was so so nice to catch up and it makes my new little town feel a little less lonely to know that she's not far away. After she left, I felt a little more at ease about the busyness of this life instead of the opposite. How many people can make you feel that way? It's a gift.

Anyway, Friday was a big day, huge. We found out both good and bad news with Baby A. We got him up bright and early for his procedure and marched that cutie patootie to the OR with the tiniest little hospital gown. I was nervous, but it turned out I had no reason to be. They were done so quickly. The audiologist returned to our private waiting room shortly after leaving and said, "Guess who has two flaming red infections in both ears?" He just got rid of an ear infection (we thought)! This poor child has likely been suffering from them since birth. She suggested we hook up with the ENT again and get his opinion, but she sees tubes in his ears in his near future. She told us that he can't hear at all in his left ear and has only very minimal hearing in his right ear. The good news, though, is that she thinks he could regain that hearing after the fluid is moved off his ear. He will likely still be hearing impaired, but they were hopeful that this could help him tremendously. I'll continue to keep you updated. His next appointment is in early April. From there, hopefully we can get a date to insert tubes and re-perform the sedated ABR at the same time.

He was so exhausted after the test, he fell asleep on the floor. Never happens.

The emotional roller coaster that was that morning for me was about to get crazier because that afternoon I was heading to the doctor for an ultrasound. There, they would tell me that I was having a boy or girl. I really had no clue what it was going to be. I sat down, rubbed the goopy solution all over my belly and anxiously waited as the tech turned on the sound so I could hear the heartbeat. swish, swish, boom. The heart rate was beating at around 144. It was then that I knew it was a boy. She told me about ten minutes later to confirm in my heart. I'm a mama to three perfect, beautiful boys. I never dreamed I could be so blessed!

Honestly, I was hoping for pink but now I am just so excited for another boy. I don't need a daughter, do I? These boys are sweet and I will be the best mom I can to them. Last night, I just couldn't stop thinking about the nursery, baby boy names, and all the fun things that come with this exciting time in our lives. I'm so excited that I don't really need to buy anything! Ha ;)

Friday night was fun, too. My dad and step-mom stayed for dinner (they had spent the night on Thursday to watch Cray K for us while we were at the hospital with Baby A). They brought pretty blue flowers and chocolate to celebrate a new baby boy in the family! We had dinner and talked and it was so nice because we hadn't been able to get together since Christmas! 

Cray K was a little terror that night. We've had such a hard time reigning in his personality since the upheaval of the nap time schedule. He loses his mind around 3pm every day. Smacking, grunting, pouting, pitching fits. It has been awful. AWFUL. I knew on Friday that something had to change and that what we were doing was not working. Yesterday, I decided YOU WILL TAKE A NAP OR ELSE and guess what? Sweet victory. He cried in his crib for about 20 minutes, but he finally fell asleep and I didn't feel guilty in the slightest. This kid needs sleep. He's a monster without it. Yesterday afternoon, my sweet eldest was back, rested and happy. It was a new leaf around here. I got so much done!

Gosh, where was I? Saturday, oh yes. We didn't do a lot during the day but that night we called up our trusty babysitter so that we could have ourselves a good ole date night. We went to see Divergent (of course) and it was good. I liked it.

Please excuse my crazy eyes. I don't get out without the kids much. #excited

Sunday it was time for church. Then Monday came and now here we are at Tuesday. I'm back to the grind without my sidekick who is off on a business trip for a couple days this week. I shall try to make the best of it! I hope you all had a good week and if you made it this far in this post- God bless ya. You really must be bored or interested in my life. Thanks. You're the best.

Love,

Stuff AND Things

Here are some random thoughts and happenings that have been bouncing around my brain lately:

*I really, really think Baby A can hear at least a little. The last audiologist said that to the best of her knowledge using the OEA that she was seeing "moderate hearing loss" but that we would need to do the ABR for more information. I suppose I could be in denial. Perhaps this is just another thing moms hope for when they find out this sort of news, but today I pressed my lips right up to his right ear and talked rather loudly. He stopped, focused, and when I was done he gave me the biggest grin...like hearing my voice isn't something he frequently hears, but he looked happy. I don't know. Maybe I'm nuts.

*My little toddler is speaking in sentences now. He's hilarious. Anytime I'm praying during the day, he whispers, "Money, wake up!" He also will repeat "Money?" over and over, trying to get my attention. If I don't answer, he switches to "Kacy, Kacy, Kacy?". Ha! This kid. I love him.

*I've been meaning to show you the boys' bathroom reveal. You remember that we were re-doing it, right? I'd go take a picture but I wouldn't dare risk waking my sleeping monsters beauties so this photo will have to explain it all:

Yeah, that's right. It's still not done. I tell my husband "I told you so" like every other day. I finally capitulated this week and scrubbed it clean and packed away all the tools in there. I give up. Good thing he can cook.

*I have ten more days of freedom and then my graduate studies resume. Oy vey.

*I decided to add something for Lent this year. Today marked the beginning of my blessings count in my spiritual journal. I plan on being more aware and noticing the little things in my life that make me happy. I'm thankful for a lot more when I write them down and can see all the little ways that God has blessed me.

*With the busyness and stress of Baby A's diagnosis (or lack thereof), I forgot to tell you that J's job is secure. He made it through the massive downsizing and we're pretty pumped to still have a job and steady income. Thank you, Jesus.

Did you have a good week?

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.