Mikayla's Blueberry

Today is big day #2! Activation! We get the external pieces to Shiloh's implant and we turn it on to see what kind of responses he will get. They say - not to expect a lot - so of course I'm expecting the world. (Insert nervous laugh). They say that kids react in a various ways - crying, laughing, scared, or may ignore the sound (as they don't know what it is)....My bet is initially Shi will cry and then be happy and not stop babbling.

In the beginning the sound to him will be more like a digital beep. Then as he gets used to the processor and we continuously work with him to teach him what he's hearing it will begin to sound normal.

Of course, there is the possibility that he doesn't hear anything. But let's think about that after today. Okay?

I wasn't sure if I could post anything before this appointment....as I am a bundle of nerves. But I had to share with everyone Mikayla's 'playlist' of things for Shiloh to first hear.

Sunday I had a conversation with her that took place throughout the day. I was explaining that on Tuesday we were going to get the external processor and 'turn it on'.

"Mommy, then Shiloh will hear us?"

"We hope so Mik."

She then asked if she could 'make the decisions' on what he hears first. Deciding to go with it, and not inform her that we will be with him for hours before getting her, she continued with her playlist of things Shiloh could hear.

All these songs are from a show that we watch at least 2 times a day - The Electric Company. A family friend is the music director for the show and got us into it. The easiest way to make the connection to Mikayla was that 'Billy wrote the music and songs in the show.' Her response (because at 3 years old the world revolves around you) - "He wrote all these songs for me?" Not one to break a little girl's heart - 'Well, sure baby, for you and for a lot of other little boys and girls to listen to.' She responded with confidence 'but mostly for me.'

The first thing my daughter wants her blueberry to hear? "Silent E is a Ninja".

"Okay, baby, why do you want Shiloh to hear this song before Mommy can tell him she loves him?" I was sure I could win this arguement with her...what was I thinking.

"Because Mommy," (....get ready for this people....) "Silent E will give Shiloh Hope.' Man, what a beautiful little girl (watch the video!)....but of course there was more than that....

Video of Silent E is a Ninja

"And Mommy, because Shiloh is a ninja." Well of course - why didn't I think of that?

The second thing Mikayla wants Shiloh to hear? Is it 'I love you' from Mommy? Nooooo, it's "Knock on that door." Another song from the show.

Video of Knock on That Door

"Okay Mik, why does Mommy have to wait to tell Shiloh she loves him, so he can hear knock on that door first?" Surely I can not lose this arguement.

"Because Mommy! It's a maaaaaagic door. And Shiloh is maaaaagic. And I want him to knock on my door before he comes in. And the girl in it is so pretty and she should marry Shiloh."

"Oh now hold up a minute, girl, that's my boy - he's not marrying anyone!"

"Okay, Mommy, I won't let him marry her if he can listen to this before you tell him you love him."

"Deal!" Whoa, wait - did she really just trick me into that! MAN! She's good. It took me a couple minutes to realize that though - once I did, I had to sneak in my negotiation...

"Okay, after Knock on that Door can mommy tell her little man she loves him?"

"Welllllll Mommy...." No longer feeling confidence in my persuasion skills over a 4 year old I brought in the big guns....

"We'll get ice cream after lunch today with your cousins!"

"Deal Mommy." Man, I'm good. I was so proud of myself. Ha!

At the end of the night, after we watched those two videos about 20 times each - and Mikayla made her video singing for me - she remembered one other "very important thing" for Shiloh to hear.

"Mommy, let's get serious for a minute. Let's talk about this." Yea, she talks like this.

"Okay Mik, what do we need to talk about?"

"Mommy, we have to work on the rest of the things for Shiloh to hear. They are important."

"Okay Babe, 1st is Silent E, then Knock on that Door, then Mommy's turn, and then what would you like him to hear?"

"We have to let him hear Hard G and Soft G" Now, just picture me sitting on the living room floor with Shiloh crawling all over me and Mikayla has her hands cupping my face and is intently focusing on me and looks serious as a surgeon. Yea, it was hard not to laugh.

"Yes, of course, we have to let him hear Hard G and Soft G, why is that so important to you Mikayla?" What philosophical statement is my baby girl about to make? She quickly changes her posture and facial expression to a smile and a sway.

"Because it's the first song my Billy wrote for me, it reminds me of You Nork City." I did laugh out loud at this point. And while I got up to play the video for her - at her request - I couldn't stop laughing. First of all, she's never been to You Nork City - or more widely known as New York City. Second of all, clearly Billy did not write this song for Mikayla. And most importantly, why is it 'my Billy'? Ha!!! But I'll go with it.

Video of Hard G, Soft G

Mikayla has been an amazing rock through out all this. Her positivity is astounding and her love for Shiloh is so real and heart warming. She is very protective of his hearing aids - and is sure to tell anyone - that they are 'the most important thing ever.' She does 'therapy' with Shiloh, she dotes on him, she talks to him, she's perfect too. She has also been able to stay pretty on target with this whole process. Understanding when he can and can not hear, and I really believe she gets the impact of this implant. The Electric Company is so important and brings so much joy to my child that she wants it to be one of the first thing she shares with her brother. The Electric Company will forever be close to our hearts.

Of course, I did have to remind Mikayla that Shiloh may not hear, that it's still a possibility.

She responded with a confident, "Yes, he will mommy." You can't argue with that.

But she continued with..."If he doesn't hear us at first, we'll keep trying, and then if he never hears us, we'll just love him like he is." Wow.

Her next question was "Why are you crying Mommy?"

"Girl, you are amazing and I am so lucky."

"Yea, Mommy, you really are."

All Right!!!! There is nothing that could ever express my relief and joy today. Shiloh had his cochlear implant surgery Monday on his right ear and he did phenomenally!!

Shiloh was born profoundly deaf in both ears. After a lot of research and discussions we decided to give Shiloh the opportunity to speak and hear and chose for Shiloh to be implanted with a Cochlear Implant. Here is how a cochlear implant works and basically what it looks like. the piece on the top left is the part that gets implanted in his head. The remote control will allow us to change the programs without taking it off his ear. The piece in the middle is what will go behind his ear, and the piece on the bottom right is the magnetic piece that will go on his head. We chose the piece behind his ear to be similar to his skin tone and then the other piece to be similar to his hair color.



We found out about 8 months old that both his cochleas had Mondini Malformation. Typically, the cochlea has 2.5 turns, Shiloh's only has 1.5 turns. This presents a problem with the Cochlear Implant - as it's success can depend on the number of electrodes on the strand that the surgeon can insert into the cochlea. Shiloh's right cochlea was better formed than his left cochlea, so it was a better choice to implant. We went through nearly 2 months of waiting for a CI (cochlear implant) company - Med El to determine whether they could 'customize' a strand that would better suit Shiloh's cochlea. In the end they could not. We decided upon the Cochlear Nucleus 5 system. (see the link to the right for more information). This implant actually has a slimmer profile which was a great bonus (less drilling into the skull to make the implant sit more flush).

I can not even go into all the roller coasters we rode over the past 13 months. Mostly because right now I am so happy with Shiloh and so hopeful that I can't even think of those rides right now.

Back to the surgery. We got to the hospital at about 830am. We answered the same questions about 10 times to 10 different nurses, happily. The anesthisiologist came in to explain what she would be doing, then Dr. Bauer (Shiloh's ENT, the surgeon) came in and answered last minute questions, and put us at some sort of ease.




Shiloh was given some Tylenol and some anti anxiety medicine. He quickly went from hungry and fussy



to just a chill little boy!




At about 2 months old I noticed Shiloh had this little 'bump' on the right side of his head. We checked with his pediatrician and Dr. Bauer - they both were not extremely worried about it. My only concern was that it was right in the spot where the processor would go in his head. When Dr. Bauer came into to talk with us before the surgery we asked what his plan was in the event it did pos a positioning problem. he said he would just remove it. 20 minutes after they took Shiloh back Dr. Bauer called us from the OR to let us know he would have to remove the nodule which ended up being a scalp lesion. So instead of 1 incision he has 2 (no big deal). Shiloh went back to the Operating Room about 11am, Dr. Bauer's team did such a great job calling us every 30 minutes to an hour giving us an update. It was nearly 4pm when the nurses told us he was finished and he's doing fine...absolute relief.....



Dr. Bauer and Shiloh's audiologist - Lisa, came in to talk with us for sometime. They gave us the good and the bad. The bads were not so bad and could not bring us down from our high. They informed us that they were able to insert all 22 electrodes (good) but they were only able to get 16 out of 22 electrode responses (good/bad) and that on several of the 16 they were getting the responses at the very maximum level (bad). None of this was extremely bad. Within 3 months of having the implant activated Shiloh just may start responding to those other 6 electrodes and those electrodes that he is only responding at maximum level he may give better responses once he's used to it. Of course they did the testing while he was under. And it was only testing, could turn out differently once he's activated and gets used to it. Also the fact that he was responding at maximum level to some electrodes meant that instead of wearing the behind the ear unit he would have to wear a body pack - seriously the least of our worries. But at first we will try to wear the behind the ear. Dr. Bauer explained that typically for a child to achieve speech (which means being able to hear) they must get 12 electrodes, so we are already ahead of the curve with 16!!!!! We will have a long roade ahead of us but we are super excited about the possibilities.

After about 45 mintues - hour of Dr. Bauer and Lisa the nurses said Shiloh was nearly ready to come in. Dr. Bauer and Lisa headed out and Michael and I waited nervously for our baby. And then it happened, from inside his hospital room I heard a very faint cry and my heart told me it was my son. I rushed out of the room with Michael right behind me. And around the corner came my son in a nurses arms. He looked pitifully helpless and I just wanted to rip him out of their arms to protect him. But they insisted I sit down to hold him. They laid him in my arms and situated all the tubes attached to him. He held on to my shirt and I felt all the stress and pain start to fall away. He was back with me, safe and good.



He looked at me and cried and held on a minute longer and then Michael peeked his head in front of Shiloh's face and Shiloh clearly wanted his daddy. Michael scooped him into his arms pushing the nurses aside. (he never really cared for what people told him to do). Shiloh melted into Michael's arms and was definitely happy and content.



The next couple hours were a little rough - just to see your child working through the confusion is difficult. Clearly he wasn't in pain, as he was still drugged heavily. But he definitely didn't understand everything. Shiloh stayed connected to his Daddy while he was awake. I got a few moments over the next 24 hours (mostly while Shiloh was sleeping). Shiloh started to show his personality again when he woke up at about 1am and was ready to play. Michael went and broke into the 'activity room' and took some toys for his son to play with. :) :) :)



Shiloh had 1 cracker (that he ended up throwing up)while in the hospital. He drank tons of apple juice and was happy with that. By the next morning he was really coming back to life - other than being quite groggy. He loved his hospital bracelet and was not happy to get it taken off!



I took Shiloh for a walk to the lobby to see the fish tanks. While in the lobby, Dr. Bauer was walking by and checked him out. He was proud of Shiloh - and even admired his own handy work (which we were super happy with!) He said after the xray (which would be used to document the location of the implant) we could go home!!!!!! And that we did! Home home home!!!!!



By the second afternoon home he was trying to play every second he had awake...but funny enough would randomly fall asleep (middle of playing).



It also wasn't until this afternoon that he ate anything else since Sunday evening. And honestly at that point it didn't bother us that it was a turtle cookie (courtesy of our great friends Kristen & Billy). The cutest little bouquet of cookies!






The incisions are perfect and tiny. His hair will grow back to cover them - but before it does we are definitely getting a mohawk! The top incision on the left is where the scalp lesion was removed. Then you can see the incision behind his ear where the implant work took place. Where the scalp lesion incision is - is just about where the external sound processor will go (the magnetic piece).




It will be another week for the incisions to heal, and then a week after that before we go to see his audiologist (Lisa) to get the external pieces and turn them on (or activate them). She will start giving him access to sound at that point. He will usually wear a hearing aid in his left ear, but for the next couple of months he will not be wearing the hearing aid in order to get him to depend more on that cochlear implant. We will have auditory verbal therapy every Friday at 9:30am. These therapy sessions will mostly be to teach us the tools we need to work with him through the week. His therapist will also use this time to assess Shiloh's progress.

We are so excited right now and so happy and so thankful. The outpour of love and support from friends and family. There is no way we could have made it through the week without all our friends checking in on us and giving us their love. Nor could we have made it without Aunt Bri Bri, Brendan, Drewie, my father and Dororthy keeping Mikayla so happy and entertained while we were with Shiloh. How lucky lucky lucky we are. I love my family, my children, my husband, my life.

“So many fail because they don't get started - they don't go. They don't overcome inertia. They don't begin.”

~W. Clement Stone

Today is the start of Shiloh's Journey. I have never felt such a battling sense of fear and excitement at the same time. I once read an article by a deaf person that said parents who 'forced' their children to have cochlear implants were taking the easy road out. That article weighs so heavily on my heart every day since we agreed to take this journey. I hope that when Shiloh is old enough to understand his hearing loss that he doesn't think we took the easy road. I hope that he sees the love, the support, the effort we put into this decision. I hope that he believes in us as much as we believe in him.

If the surgery is a success and Shiloh's anatomy accepts the implant, there won't be a second that we aren't making every last sound count, in hopes of one day that he can hear Mikayla when she says 'I love you little brother' and that another day he will return those sweet words.

If the surgery is not a success and for whatever reason Shiloh does not acheive enough benefit from the implant to get speech or sound, then there won't be a second that we aren't making every last sight count.

The fear of Shiloh going through this surgery with the possibility of it not succeeding is gut wrenching. Even though by the end of the day my heart will likely explode and my tear ducts will dry, I still have hope. I believe in my son's resilience, his curiosity of every corner he turns and his love of life.

Shiloh's journey, this families journey, begins today. How lucky we are. How beautiful this is.

Flow good thoughts to this little man.