Mikayla's Blueberry

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.

Rainy days always seem to be my grocery shopping days. Standing in the grocery isle looking at the peanut butter, trying to remember which brand was the last to have the salmonella outbreak, an older woman stops to go on and on about how cute Shiloh is. "Yes, he is so cute, yes he is a flirt, yes he has a gorgeous smile"....then the awkward pause while she tries to make funny noises in exchange for him to respond with a laugh, instead he just looks away. She makes the noises that much louder...and he ignores her. Suddenly, she's no longer friendly. Suddenly, Shiloh's not as cute to her. Suddenly, she gives a quiet "oh dear" confused smiling nod as she walks away. Ugh, rainy days somehow always have me at the grocery store with Shiloh, without his hearing aids.

And then there are the times when he does have his hearing aids in, and in that same isle someone stops to make me feel proud of this perfect little boy. And mid-strange/funny noise they get that look. That look is absolutely unmistakable, absolutely. And I see the path of thoughts race clearly across their face.

....are those hearing aids...those are hearing aids...do babies wear hearing aids...wow, he's not responded to anything I've said...oh, my...he's deaf....how sad...

And then, they give a quiet, 'oh dear', confused, smile and slink away.

Yet, there are those times, when a parent is observant, bold and curious and asks if those are hearing aids he is wearing. Yes, they are.... and I wait for their reaction...and sometimes I'm lucky enough for that parent to say Oh...I know a child that got a cochlear implant. And then the conversation ensues...lots of questions, lots of answers, a few laughs, and no quiet, "oh dear", confusing, smiling nods. And those are the days I feel comfort and relief from being able to share a little of Shiloh's story.

Our life is so different from 3 years ago, and yet it seems so normal. Of course, I am reminded of those differences when Shiloh wakes in the middle of the night crying uncontrollably and I am unable to comfort him with my voice. But then those are the times that I get the tightest sweetest hugs, when he wants nothing more than to be closer to me than his own skin. I am so lucky. And there are those times I'm on the phone all day with doctors offices rearranging schedules, ensuring we're on track, verifying insurance and I realize, 'Wow, and he's only deaf.' I am so lucky. Yet, still there are moments when I catch a glimpse of another baby Shiloh's age react to their name being called, and I blink back a couple tears and save that pain for when I'm alone with Michael.

And as Shiloh's cochlear implant surgery date approaches (November 2nd) I remember that as differently normal these days are, there are underlying fears that are strangling my heart to a very slow labored beat. Sigh. I'm sure my heart will resume it's normal rhythym soon after that first week in November. And my underlying fears will return to what kind of woman will he bring home, where will he go to college, what will he want to do with his life? And hopefully the "Oh....he's deaf"....will turn into more of the "Wow! And he's totally deaf?"

So three weeks ago Shiloh had an MRI and he was sedated for the procedure. He did perfect with it, IV went in easily, he went under sedation easily, came out of sedation easily and had a nice smooth rest of the day. However, Monday was a different story! When the anesthiologist was going over everything with us, we were nodding our heads - remembering every line since we just heard it...and then she said we'll be using 'propofol'. Ha! (In case you've been in a hole it is what supposedly killed Michael) She paused for our mouths to drop and then reassured us that it's the sedation they use all the time. She said she never had so many questions about it then in the last couple weeks. We all had a nice little chuckle.

That was where the fun ended! Whew, what a day what a day! They had to try 6 different times to put an IV in Shiloh! At one point I picked him up off the bed and told them to back off and give him a minute. He calmed down and they went back to it. They finally got the IV in - seriously after over an hour. They took him back for sedation and the MRI. He came back more groggy than last time, I asked how he did under sedation and she said 'great.' Um okay, thanks. He woke up within 20 minutes, really groggy, but took a sippy cup just fine. We took him home, he drank half a sippy cup then laid down for a nap. He woke up around 430pm and within 20 minutes had worked himself into quite a crying fit. He could not calm down - no matter what we put in front of his face. Then he started taking deep short breaths in between cries - like he was hyperventilating!!! AGH!!!! We called our doctor - as short breaths were on the list to call doctor for (we also had a list of when we should call ER, and when to call 911, ugh). By the time the doctor called back he had calmed down and was just chill. She said as long as he's able to calm down and he's aware, alert and happy (intermittant) he would be fine. To monitor and call again if he worsens. The rest of the night we held him as he did not want to be put down at all. Finally around 10:30 he was asleep enough that we were able to lay him down next to us. Within 10 minutes he was awake and crying and breathing badly again. But within that 10 minutes his fever spiked to 102.3!!! We called the advice nurse at the children's hospital and started packing up for the ER. She called us back as we were about to put the kids in the car. She ran through a list of questions and determined he was okay, needed some tylenol and if he didn't calm down within the hour to bring him in. Well he did calm down, and is did perfectly fine today. Still al ittle fever, but otherwise happy.

I was just positive this propofol did this to him! Ha. Come to find out propofol was what they used on him his last MRI, where he did perfectly fine. Goes to show you how influencial TMZ is these days!!!! Okay, stop laughing!

And GREAT news!!!! MRI came back normal. No problems with his spinal cord!!!! Yay!!!!!!!

And did I mention we had our three year old with us through this whole ordeal?!?! Ha. We've just learned it's easier to just take her wherever we go - and she's so compassionate to Shiloh, they are really connected that I think she even helps keep him calm. What a great little girl. We are so lucky for these two babies in our lives.

We are starting to become comfortable in our new skin as parents of a deaf child. Actually speaking the words to someone "He's deaf" doesn't quite sting as hard or choke us up as much as a few months ago.


We are learning the best places to go to answer our questions, the best sites for researching medical devices, the most heart warming and inspiring blogs of families going through the same thing and also that everything we need is held within the arms of this family.

Quick recap - Shiloh was born with bilateral sensorineural hearing loss. Originally Severe to Profound in Left ear and Profound in Right ear, recently after getting tubes in his ears we found out he lost all hearing in both ears. He was and is deaf. A week ago he had an MRI and Cat Scan of his head - normal procedure pre-cochlear implant to ensure there is no structural damage and that he is still a cochlear implant candidate.

What is a cochlear implant?

Simply, this device (and an enormous amount of work) could possibly give Shiloh the ability to learn to have normal speech and will possibly allow him to hear as you and I do. Michael and I have no problem raising our child deaf, we have no discrimination against that nor reservations to learning a new language (ASL is a second language). However, this is a hearing world and we want to give our child every opporutnity to thrive in this world as you and I do. We want him to hear us and we want him to be able to speak. Not discounting a person who does not have cochlear implants and lives a life without sound - they are just as capable as anyone else in this world. If my son's eyesight was less than 20/20 I would get him glasses. Granted, glasses are not as demanding as a cochlear implant - but think about it - what you see is what it is, hearing is more complicated - people's voices are different tones, frequencies, decibals. If Shiloh does not have success with his cochlear implants we will teach him sign language and we will learn it, our daughter will learn it, our future children will learn it - and we will gladly teach anyone who wants to communciate with him sign language. We will push him to be every bit of a person without hearing as we would a person with hearing. But for our family and our decision we are going forward with a cochlear implant. The surgery will be around his first birthday (september).

But before we can get to the cochlear implant...the results of the MRI and Cat Scans. Shiloh's ENT, Dr. Bauer, called to speak with us about the results. He spoke with us for nearly an hour and answered every question we could come up with in such an overwhelming moment. He informed us Shiloh has Mondini Dysplasia, or his cochlea's are malformed. The cochlea is a snail like structure that typically has 2.5 turns. Shiloh's cochlea's only have 1.5 turns. This makes a cochlear implant difficult as the amount of hearing depends on getting the implant all the way in. The success of a cochlear implant does not solely depend on the structure of the cochlea - there is so much therapy and rehabilitation involved.

There are other complications with the Mondini malformation - his vestibular aqueducts are enlarged as well (the balance system). This will delay his walking and crawling, but will not prohibit it. He is also more susceptible to Menigitis. READ: don't come near us without washing yo hands!

Michael and I are committed to the succes of Shiloh - in whatever form it comes in. That was our purpose for having children - to contribute something greater than ourselves to society. To not stop at just adding DNA to the world - but to give the world something that will make a difference. Our children will make an impact in this world and we're going to put forth every effort to ensure they do. Both Shiloh and Mikayla are our world and our loves. Every day we love eachother deeper because of our children (not to mention we already kind of liked eachother).

We have a roller coaster journey in front of us. And as I've said before 'man, the highs are high.' But as I learned last week, the lows are beyond lows I've felt before. Any pain or grief I have felt in my life compares nothing to the pain I feel over my child. When you become a mother and are handed your child for the first time you also receive a bottomless sack of guilt for every decision you've made or may make. I have days where I wake up running ready and confident "Lets do this!". And then there are days where I lay in bed a few moments longer to hold back the tears and hopefully start my day in a different mind set. Some days I pull out of that despair, and some days I get out of bed with a cloud looming over my head. Michael is a rock, my rock and the only person that could ever get me through those clouds. Mikayla is following in her father's footsteps and easily reminds me that everything is okay. Shiloh just smiles non-stop - like 'mom, come on, I'm cool'. You never want your child to feel any pain, grief, dissapointment, loss or sadness. And the thought of him feeling any of those things weighs down on my heart so heavy. But then I sneak in to his room at night and selfishly wake him up. He snuggles into my neck and coos to me softly, we sway slowly together and there is nothing else in the world but he and I.



And then I am reminded of how perfect and beautiful he is. He is so special and I wouldn't trade anything for him - not a thing.

Please keep good thoughts flowing to this little man.

Come on, really? Ugh!

My son is in daycare sponsored by my work and I overheard a co-worker make that comment. What she didn't know was that I was the mother of the child she was referring to. Before she could finish anymore stupid thoughts and before I could rip her head off....the person she was speaking to actually said "Wow, I really think that's an extremely ignorant comment and you should definitely watch what you say because you never know whose presence you are speaking in." I bit my tongue for the time being as I couldn't stomach being laid off and thrown in jail.

What a tailspin that comment through me into. It took me sometime to move past it, and to ensure that on a professional level she was dealt with - and she was. Now, I just try to remind myself that grown people are going to say some of the most ignorant things possible and that's okay, I just need to confront them on it and move on. Mikayla's classmates love when I bring Shiloh to their class - and seeing that they are mostly girls, Shiloh loves it too! At one point one of them asked - what's in his ears? I said 'Hearing Aids', she asked 'Why?' I replied, 'so he can hear us like you do'. She said 'Okay' and ran off to play. It doesn't get better and more accepting than that.

We scheduled his tubes for June 10th, we are looking forward to seeing a lot more responsiveness (hopefully) once we get that fluid cleared up. Although I'm not looking forward to the 'active draining' part. Ewwww.

Shiloh is now sitting up, eating cheerios (I know, what?) and plays with anything in his reach. He babbles non stop, although we are trying to prepare ourselves for the time frame when he goes radio silent. :( That's going to be incredibly miserable.

Mikayla is becoming an expert on his therapy. She loves responding to every sound with "I heard that, did you hear that" - finger pointing to ears and everything! What a great girl! And Mikayla officially hates dance. She has it every Thursday (and I always put her hair in a bun on Thursdays). Last Tuesday I put her hair in a bun, and she immediately said "I'm so tired Mommy" I responded by saying - you know its not dance today, I'm just putting your hair in the bun so you can play" She said, good cause I'm not tired anymore. Then Thursday when I pick her up from School her teacher pulls me aside to tell me how tired she is. And I asked how she did in dance - she said she was too tired to do it. I asked - was she tired on the playground, she responded - 'Well No.' Hello? Anybody in there? She doesn't want to do dance, she's not tired. That girl, cracks me up.

A great short.....


I am often asked to describe the unique experience of raising a child with a disablility---to try to help people who have not shared the experience to understand it, and to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation--to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's David. The Gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant announces, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there has been a change in the flight plan. You've landed in Holland and here you must stay. The important thing is that you haven't been taken to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So, what do you do? You must go out and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never have met. It's just a different place. It has a slower-pace, and is less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

---Emily Perl Kinsley

Just wanted to share this video with everyone. And to say this morning I walked around the corner and came back and he had managed to get his hearing aid off and into his mouth! Ha! It was actually a funny moment. I felt like it was a milestone...all you moms will understand.


I needed that funny moment and seeing his responses in the video. Last night was a tough night.

He is not 'broken', hurt or less than perfect. He may not be able to hear in conventional terms, but he can feel, love and emote. His laughter is as cutsie and fun as Mikayla's was at 6 months old. He laughs at everything. His personality is easy going, strong, cuddly, stubborn and funny.

I welcome the curiosities that come from other women as mothers, but I won't marinade on the guilt provoking questions.

Tomorrow is our first day of Auditory Verbal Therapy. We are excited, anxious and overwhelmed with questions again, but looking forward to it. His bronchiolitis has cleared up (minus a little raspy cough) and the fluid definitely seems better!!! Yay!!!!

Flow your good thoughts to this little man!

Grrr. Little man has fluid on both ears again. We had rescheduled his booth test for Tuesday, but now we have to wait a week or 2 before we can get him in the booth to see what he is hearing with the aids. We are still going to his first therapy appointment on Friday.

And to make it worse poor little guy has bronchiolitis AGAIN! It's the same thing that put him in the hospital over Thanksgiving, but he's older and stronger and EVEN tougher!!! He never ceases to amaze me with his resilience.

We go back to his pediatrician and ENT on Monday. Hopefully his lungs will be doing better and the ENT will say the fluid is gone. This will be the 4th time he's had fluid in his ears within his 6 months of life. Unfortunately he is really heading towards getting tubes put in his ears. With the hearing loss they are more aggressive about handling fluid, because fluid decreases the amount of hearing you have and is uncomfortable - so needless to say he hasn't been able to wear his hearing aids in the past couple days :(

Keep good thoughts flowing to this little man.