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.

32 Weeks: A BumpDate

Still pregnant.

Shirt by Clothed With Strength

Although, I wasn't so sure I would be for very long last night. For the past few days, I've had some pretty terrible symptoms that have alarmed me.

Symptoms? difficulty breathing, lower back pain, sharp pains, just an overall uneasy feeling, BH contractions

I'm drinking lots of water today and feeling slightly better, but I do desire your prayers for itty bitty Baby M. He needs to stay put for awhile. I haven't updated since Week 17- wow- so I thought I'd let you know how it's all going for me.

How far along? 32 Weeks
Baby is the size of: a head of lettuce
Weight: 139
Cravings: I haven't felt well lately. Nothing sounds good ever...unless it's chocolate. Of course.
Boy/Girl? I suppose it's still a little boy in there ;) I haven't seen him in awhile.
Exercise: I was doing so well until this last week. I was running (ahem jogging...ahem barely) 2-3 miles at a time and feeling wonderful. The last few days, simply living has felt like a workout. I will not be raising my heart rate for exercise for awhile until I start to feel better. I don't know what's going on, but I'm going to take it easy.
New Things: K now recognizes the baby's name and will talk about him a lot. He also notices when Mama's not feeling well and he checks in with me- "You okay, Money?" He is oh so sweet and caring. Baby M is lucky to have two older, fun, and energetic brothers ready to welcome him into our world.

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.

Bullet Points of Things You Should Know

*I'm trying to figure out if I still blog. I have increasingly picked up my pen and paper journal over the last few weeks, something I haven't done regularly for about a year! I just noticed that some of you were leaving/unsubscribing and I thought you might be tired of me talking about the struggles we've been having lately. Not that it matters, really- I know this is my blog and I can write freely, but at the same time I wonder myself if this is something I should continue to share.
*This busy season of our lives has me away from the computer a lot, too. Yesterday was one of the worst days I've had this entire pregnancy. I woke up feeling sick, but I just tried to ignore and drink lots of water. I went about my day, dropping off the kids at school and decided to go shopping to look for baby items. As I walked through the stores, I stayed near the restrooms thinking that any minute I was going to need them. It was the first trimester all over again. I finally capitulated and came home to rest before I had to pick the boys up at two. When I woke up from my nap, I felt really really awful. When I got home from getting them, I put them to sleep despite one of them already having a nap that day and crawled in bed myself. I spent the evening violently ill and having pretty regular contractions. I was alarmed, but around 11pm last night, I started to feel slightly better.
*I have no less than 80 billion mosquito bites on my pasty white legs. I feel so hot. ;)
*My pal from college has written another book. Book 2 in the Ethereal Underground Trilogy is available today on Amazon! Here's more about it:

Mark of Deceit

By Brooke Kennedy and Briana Gaitan

Book two in the Ethereal Underground Trilogy

Release Date 6/3/2014

Available TODAY at Amazon  $2.99 (Other formats coming soon)

Good Read Summary

Goodreads Link

Website

She thought that her Elders would welcome her back home with open arms…
He thought that she would stay by his side forever…
Now a friend is missing….
They thought the seer’s words were just that…words
But not all is as it seems….

Months later, Ash and Annalise have both returned to their separate lives after their adventure in the forbidden layer of Cabalin, Both of them are struggling to move on with their lives. Fighting has kept Ash busy for the most part, but it allows him to release his frustrations and earn some gems to survive. He thought renouncing the keepers would free him, but he ended up losing his way. Annalise is plagued by nightmares and emotions that are even more out of control than before. She is desperate for an answer, desperate for a way out, until the Elders offer her exactly what she needs: a way to break the bond with Ash in return for her compliance with their own mission

Author Links

Briana Gaitan

www.facebooks.com/booksbybree

www.bookswithbree.com

Brooke Kennedy

www.facebook.com/beneaththesilvermoon

www.brookekennedy.org

Launch Party/ Book Signing

https://www.facebook.com/events/236615703206203/

I hope you'll check it out. I haven't read it yet, but I look forward to it when life slows down a bit here.

*I'm still taking classes. I worked ahead when my latest class became available and was able to do next to nothing for about three weeks. It has been strange. Such a big difference from last semester. I need to get to work and finish up the other four weeks of assignments now. That would be so helpful to not have that to worry about as baby's arrival gets closer and closer.

*In case you didn't know, I'm 29 weeks along. Whoa Nelly.

*Exciting things are coming up for my business. This summer, I'll be attending at least two local 5Ks where I'll be setting up shop. This is your chance to come and shop in person. Follow along on facebook for more information. Additionally, I have several new designs up and coming! We're expanding to provide men's and children's gear, too. Here's the latest shirt. It's my new fav:

Like it? Shop here.

*Ok, I've got to start my day now. Wish me luck that it's not a repeat of tomorrow. Pretty, please?

Love,