Joy and Pain

We arrived at the hospital at 8:45am Wednesday morning. While walking up the skywalk Jeremy and I found ourselves reflecting on our trips to Guatemala. The types of butterflies and the "lets just get there" feelings were oh so similar.

In the Day Surgery admit area, AJ weighed in at 19 lbs 15oz. We don't care that it was a different scale than the one in the GI Clinic-this scale-on his surgery day-said he had gained 7 ounces in around 6 weeks. Sounds good to us. That was a great way to start our day.

His nurse got us ready to go in no time. You'll notice AJ had his electric toothbrush with him. It kept him occupied and cracked up the staff. All of a sudden, he was given the "joy juice" (Versed) and being wheeled down to the OR "holding area." I started to tear up on the way to the elevator.

When we arrived in the holding area, we saw AJ's surgeon, Dr. Wackym right away. I felt an instant calm come over me. I've said all along that we weren't nervous about the surgery itself, but seeing him just gave us that extra sense of "Whew. We're here. It's happening. He's right there in front of us." He marked AJ's ear with his initials and we chatted for a moment. We had a moment to ourselves with him. I held him tight and closed my eyes, trying my best to savor the moment. From here on, my son's life was going to change. FOREVER. AJ was cuddly, which we thoroughly took advantage of. We then met and spoke with AJ's anesthesiologist and the OR nurse. AJ does not "get loopy" on the Versed. He fights it and was still trying to climb/scoot down the bed to get down to the floor. The OR nurse decided to carry him to the OR. I appreciated that.

As I saw his nurse turn the corner with him I looked away and set my eyes on the next step of our day. Walking into the surgical waiting area, signing in, getting a pager, and high-tailing down to the cafeteria. (Thank you to Grandma Nutt for snapping a picture of the nurse carrying him!)

We spent a while down in the cafeteria playing cribbage and having lunch. When the two hour mark hit, we got ancy and headed back up to the surgical waiting area. I don't know what it is about these areas, but they leave something to be desired. There is a heightened tension in these rooms, for obvious reasons. If the hospital staff member has stepped away from her post, parents are asked to answer the phone. All of a sudden the phone rang, a parent answered, and said aloud to the room, "Alejandro's parents?".

We just about jumped out of our skin...and literally out of chairs. On the other end of the phone I heard the voice of the CI audiologist in AJ's surgery.

She said...

The cochlear implant is in.

AJ IS HEARING.







That was my pause for reaction.

I replied with "REALLY?!" No Heidi, she's going to lie to you. DUH. But honestly, not once, have I EVER heard: YOUR SON IS HEARING. Until yesterday.

Jeremy beamed a smile to match my own and said "You don't get to answer the phone anymore." (Did I mention that when the surgery scheduler called with the new surgery date I told her to "Shut Up?!" in all my excitment? Oiy)

We shared the news with Grandma and Grandpa and waited for Dr. Wackym to come out of surgery to chat with us. About a half hour later, he did. AJ's surgery went like clockwork. They were able to get FULL INSERTION of the electrode array into his cochlea. Excellent news. The device was tested and his brain/nerves responded to sound. Holy cannoli, my kid heard sound. He doesn't know he did, but I KNOW HE DID. We were given paperwork and told they would call one of us back to recovery soon.

While we waited once again, I found myself reciting what the audi had said to me on the phone. AJ IS HEARING. AJ IS HEARING. Soon my eyes began to tear up. I find that in as much as we are open with AJ's journey, I still find times when I want to feel/experience a moment that is all my own. Never EVER has someone told me my son was hearing. AMAZING.

For some reason, I chose to go to recovery to be with AJ when he woke up. This is usually something I would have Daddy do. And I don't even know the reason for that. Recovery is where our difficulties began.

(Note: the following 4 paragraphs contain details of AJ's difficulties post-op...just incase you choose not to read or don't care for the details).

I walked in to see my baby boy with that famous white bandage around his head. Thank goodness we have reviewed countless blogs with pictures of other kiddos with CI pressure dressings on their heads. It looked normal to me! As he woke up, he bled from his nose tube, his heart rate spiked alarmingly high as his oxygen level dropped at almost the same pace. After more pain medication was given (twice with a visit from the anesethiologist), and I rocked him, his heart rate decreased and his oxygen level normalized. I have no idea how I kept calm, but I do know that he was the best place to be in case something like this happened. When you have five nurses around you who are there to tend to your kiddo, a sense of security comes. At least for me. When he stabilized, we all decided we needed margaritas. :) That was the beginning of thankful prayers that our CI program has children stay overnight after surgery.

He was moved back up to Day Surgery about a half hour later. He slept comfortably for the first few hours and then began to vomit blood. We weren't scared about it actually happening, we wanted to know why and where it was coming from! For some reason we did not realize this would/could happen...and can happen with this type of surgery. With the area of the incision, often blood drains into the eustation tube and has to go somewhere. It often drains into the stomach, which causes irritation, resulting in vomiting. This continued off and on until midnight, at which I was able to feed him a crushed up popsicle. He was not interested in eating before that. I knew the pressure bandage would cause enough pressure to make him not want to drink.

He was pretty wiped, sleeping and waking only to fuss when it was time for pain meds and/or nausea. I tried to catch some shut eye as much as I could. He was in a crib, which made us nervous since he's now in a toddler bed. Once we realized he was too tired to climb out or even sit up, we calmed. We felt so bad. He was so hungry (36 hours w/out anything) but couldn't keep anything down. We cannot imagine if we had brought him home after surgery and all of this had occurred.

The Day Surgery nurses were awesome! You can have some pretty awesome conversations at 230am in your PJs with those ladies :) They were very good to AJ, and to me, for which I am very grateful. AJ took a nice "nap" for two hours in the early morning, which was a blessing. I woke up to Daddy walking in the door with a Starbucks for me. Sweet. Around 8am AJ awoke from another short nap and we attempted to feed him ice cream. Bad idea. Just as we were telling the residents he had ice cream to eat and kept it down. Yeah. They decided to keep his pressure dressing on and told us they may keep him longer if he does not eat or drink omething substantial.

They changed his nausea medication, administered it, and he was out like a light. He took a great nap. His stats were down to regular normal ranges which told me he was much calmer and getting the rest he needed. And then my AJ woke up. Full of gusto and glory. Playing with his toothbrush (which by the way his surgeon told us he held onto right up until he went to sleep for the surgery), trying to get out of bed, STANDING, causing a ruckus. That's what we had been waiting to see. The new anti-nausea drug seemed to be working and we were thrilled. We tried more popsicles, mashed potatoes, and finally his Pediasure. The residents wanted him to drink something. Due to the pressure on his head, that so was not happening. He did well with all of the foods and the ENT resident came back up to take one last look and take off his dressing.

The incision was much larger than I had anticipated, but very well done. We will be trimming/buzzing his hair, seeing as we have him wear it "long" and they shaved virtually the whole right side of his head. Looks odd. There was minimal swelling, but they were ok with that. He was on regular Tylenol by the time we left. We were released from the hospital at around 2pm.

I don't know why being in a hospital makes you feel like you've been in a time warp. It is extremely odd. It was wonderful to feel the sun, fresh air, and most importantly, see AJ in his carseat! Heading home...

He had a great first night home. He started playing and WALKING AROUND right away. It was very important that he was up and moving as soon as possible. Auntie Jodi came over and cooked an awesome dinner for us. Thanks Jod! He ate a nice dinner and went to bed like a champ. Grandma and Grandpa have been here from Iowa since Tuesday and have been a tremendous help and support. It makes us a bit nervous that there isn't anything covering his head anymore, but its growing on us. We awoke this morning to an escaping AJ who was in the kitchen playing....when he was supposed to be in his room sleeping. He's doing GREAT! Getting into trouble, as usual. :)

Thank you to everyone for their support, kind words, and prayers. We truly appreciate everyone's interest about AJ's journey.

We cannot believe we are "on the other side of the fence." Our son has a cochlear implant. I told someone today "My son received a cochlear implant on Wednesday". Wow. Watching AJ today, you'd never know he had surgery a few days ago...unless you look at the surgical site itself. He is in great spirits!!

AJ's ACTIVATION in scheduled for the morning of April 20th! 24 days and counting!!

Enjoy the photo montage! NOTE: Please begin the montage and playlist (one song only) at the same time. I'm too lazy to upload the song and set it to the montage so this is my quick fix for the time being. We know everyone is anxious to see pictures!

Make photo slide shows at www.OneTrueMedia.com

'Twas the night before surgery...

Practice wearing a head wrap

Hats off to you!

I'm helping pack, see?

I can't believe it!

" 'Twas the night before surgery, when all through the house
Not a creature was stirring, not even a mouse;
The suitcase was packed and set on the chair,
In hopes that surgery time would soon be there;
AJ was nestled all snug in his bed,
While sounds of trains and planes danced in his head."

So here it is...the night before surgery. I have been thinking about what I'd want to write on this night. Imagining how I'd feel. How we'd feel.

Today has been an odd day. Almost as if I was going through the motions-like an out of body experience.

As I drove home, the rain began to sprinkle, with the sun coming and going at its own discretion. Reality suddenly hit. AJ's entire world is about to change. Just the fact that he will have the "equipment" to hear astounds me. AJ IS GOING TO HEAR. (Note: Repeat to self multiple times as needed)

The sun appearing and then disappearing during the rain reminded me of what this journey has been like. Not just AJ's journey to hear, but his ENTIRE journey up to this point. From the moment we stepped off the plane with AJ, it has been raining. Maybe off and on, maybe partly cloudy with a chance of showers, maybe torrential at times. But through it all, the sun has come out. Here and there, not always when we thought needed it, but when the big man upstairs knew we were drowning and desperately needed dry land.

AJ is no longer a blog of jello (thank you to my Mom for that description of him when we came walking up the terminal). Our little boy, is a little man. A toddler. Who may not be doing all of the "typical" things almost three year old little boys do...but he does show us his wit, smarts, stubborness, strength, and humor all in a day's fun. His smile and laugh are truly contagious. He is the very thing that keeps me going on the lowest of days...which is interesting to me, since most of those low days are in relation to something someone has told me he is "not doing."

I am so proud of him, I have no words to describe the pride that is filling my heart tonight. I wanted to create a few photo montages with pictures from his first referral picture all the way to the present. I soon realized that I needed to be functional for tomorrow and will save that emotional rollercoaster for another time. Just thinking about how far he's come makes me tear up. My little man made eye contact with me tonight and cracked his "flirty" smile at me, which he knows makes me laugh and sign to him.

Am I nervous for tomorrow? A little. I am more nervous about post-op than I am about anything else at this point. I know he will be in good hands during his surgery. It's the overnight stay and sensory reaction to the bandage on his head that worry me. Whatever comes, we'll just go with it. AJ will be a bionic boy. He will hear in one months time.

WOW.

So here we are, t-minus 11 hours till surgery. Nothing left to do but wait for tomorrow's cool mist & awesome rainbow....

Surprise!

We received a call on Friday evening that our CI Team had a cancellation...for Wednesday, the 25th. WHAT?! We frantically began trying to move schedules around. Of course, important things happen to us at 5pm on Fridays. Of course! We were told to plan on it, but were to wait until today to make sure that AJ's device-the actual implant-would arrive before Wednesday.

It's a GO! AJ's surgery is scheduled for Wednesday, March 25th, 2009 at 1030am. He'll stay overnight (with Mommy-they only allow one parent to stay overnight-blah). We will let everyone know how things went and how he is doing when we get home.

Our little man is finally getting his equipment to hear the world around him!

Thank you to everyone for all of your encouraging words, prayers, and support!!

PS Are we ready? YYYYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEEEEEEEEEEEESSSSSSSSSSSSSSSS

Change is in the Air

Yesterday was AJ's transition meeting. All in all, it went well. I am so grateful that AJ has a GREAT therapy team. Not only did they bend their schedules to be here at the last minute, they prepared current reports on AJ, allowing me to present the school district representative with a packet of information. Now begins AJ's formal evaluations. His current OT, PT, and TOD will do those evaluations, with the school districts staff OT, PT and TOD observing and reviewing their reports. AJ will need a few other evals as well.

As it stands right now, AJ will need the following services:
Physical Therapy (PT)
Occupational Therapy (OT)
Speech & Language Therapy (Done by an SLP-Speech Language Pathologist)
Feeding/Sensory Therapy (Done by SLP)
Teach of the Deaf
Audiologist
Vision Specialist

His IEP meeting will be in June.

AJ's TOD has been encouraging me to write up a "brochure" of AJ. After all, everyone is going to come to this IEP with their own reports, it is only fitting that we have our own report on AJ. Today, she brought me some samples of packets/brochures that were made by other parents of D/HOH kiddos. I am sooooo excited! Everyone knows I love paper...I know I'm weird. As I started flipping through them, I instantly thought I want AJ's to be in color and to be spiral bound. God help the local office supply store clerk that happens to be working the day I bring them all in to be bound, etc. :)

As I was reading through, I came upon an audiogram. It was a "type" of audiogram I had never seen before. There were responses as 10dB.

I cried... Realizing that my baby boy is closer than ever to hearing. He is closer than ever to having his own audiograms that show results above profound and severe levels. We are so close to being on the other side of the fence.
We can't believe the ticker says 19 days. Really?!

King of the Mountain

Well, AJ hasn't been feeling the greatest. He does have an infection, but its viral. Meaning: no antibiotics. We have to wait it out. Not what the parent of a kiddo who's 28 days away from CI surgery wants to hear. Alas, we keep pluggin' away at this virus. The cool mist humidifier I got the other day is awesome. We steam, bathe, apply Baby Vicks vapor rub, REPEAT. His cough has decreased today and the "junk" is making its way out. Better out than in.

Despite not feeling well, AJ has made some fantastic gains in the last week or two.

Here's a list:
-Able to climb off and on his riding toy (airplane) from BOTH sides
-ABLE TO TURN ON AIRPLANE propellar BY HIMSELF, multiple times
-Pushes/Pulls dump truck
-Increased walking distance (example: walking from fridge to middle of living room without stopping)
-Standing and "walking" as he closes a door
-Walking holding sippy cup in both hands!
-Walking & DRINKING at the same time!!
-Biting and chewing animal crackers...and lots of them
-Standing and "walking backwards when you open a door and he's behind it
-Improved balance & coordination
-Grasps concept of eating, placing fork/spoon down on table, grabbing sippy cup, drinking, placing cup back on table, picking up fork/spoon again and eating
-Improving skill of getting into car seat on his own
-Tracking/Grabbing our DVR "screen saver" on the TV
-Paying attention to people coming and going

And for his GRANDE FINALE:
-Beginning to climb out of his booster seat AKA playing King of the Mountain

That's right ladies and gents, he's supposed to be doing this. It is indeed a PT goal. Oiy! He is to turn himself around and go down with his belly facing the booster (just like the car seat).Tonight, he decided to show us all his talents! Even though we don't want to make this a habit, it is truly incredible to us that he is able to do this!

(Note: Daddy was right there in the case of a quick descent!)

Whoa, check out the view from up here!!

Yeah Mom, that's right, I'm standing on my chair

La, la, la, la, la, la I'm ignoring you!

Oh alright, I'll kneel and start getting down...

I made it!

He's My Son

Fair Warning:
This song WILL make you cry. I cannot listen to this song without crying....

Last December, two of my fellow adoptive Mom's came to my Dad's visitation. Their presence calmed my heart and brought me to tears. They had never met my Dad, but were there for me. AJ was diagnosed with hearing loss while my Dad was in the hospital, and diagnosed with cerebral palsy just hours before my Dad passed. It was a very trying time, and quite honestly, I felt numb. I didn't know what to process first. While hearing "I'm so sorry for your loss", we were also hearing "Is he completely deaf?" "I'm so sorry to hear about AJ." "Did you know?" "How could they do this to you?"

One of the Mom's gave me a small bag with two CDs in it, along with a note that I still have tucked in the CD case. "He's My Son" was on the first CD I listened to. She had written to listen to the song with a box of tissues. I followed her directions, plopping myself down on the living room carpet, box in hand, and pressed play.

This song has a very special meaning to me. AJ IS my son. I am doing all I can for him, but know that I/we cannot do this alone. I do indeed, try not to cry. I have often asked God if he hears my prayers for AJ, for our family. I watch AJ walk and see him working so hard against his body just to do such a simple daily task. Simple to you and I. I see him frustrated that he cannot communicate to me what he wants. I wish I could take his place. I wish I could make things easier (not totally easy), but just a pinch easier for him. I wish I could make all the appointments, therapies, constant work go away, at least for just a moment. I pray for his strength, his well-being, his success, his failures, his present, his future. We are so thankful he is here with us. He's OUR SON.

"Bye Bye AJ, Its Time For You To Go"

AJ attended his first day of toddler group at the Center for the Deaf and Hard of Hearing yesterday. He did exceptionally well, much better than we and his TOD expected.

The day begins with parents & the toddlers (on carpet squares) sitting on the floor. the theme for this month is "Emotions & Things We Do". Each child has a polaroid picture. A language exercise is done with the photos. The teacher shares what they will be doing that day. A "Its Time to Play" song is sung/signed along with a "Bye Mommmy/Daddy/Whoever brought you today" song. The parents leave and campout out in the observation room. There are two windows for us to view the playroom...they are mirrors on the playroom side.

A structured play activity was first. They made playdough. AJ was pretty much bored until his turn to help came around. Then came a free play time. Which has become his favorite part :) Next came circle time, where the kids gathered on the carpet squares again and the teacher told a story. She used a large book (seperate sheets, not bound) and props to tell the story of Goldilocks and the Three Bears.

After storytime, the kids had a snack. AJ did well with snack. He got a bit irritated when everyone had food except him. They use snack time as a language opportunity as well. He "asked" for food by whining and arching his back. I knew what it meant. :/ At least he knew what the objective was at the table...and he quieted as soon as he had crackers in front of him.

After snack, the kids enjoy another free play time. The lights are flashed and a clean-up song is sung while the kids clean up the toys. They gather on the carpet squares again and talk about what they did for the day. An individual "Bye Bye" song is sung for each child (see title of this post). When the group sings the word "Go", the parent has to ring the doorbell outside the playroom, enter, and exit with their child.

In addition to the teacher, there are three SLP's present (speech language pathologists) along with a grad student who is fulfilling her internship.

I am SO GLAD we have AJ in this group. It is such a fun, interesting mix of toddlers. They all have different personalities and different ways of expressing themselves. There is one hearing peer, one CODA (Child Of a Deaf Adult) who is hearing, and 5 other kiddos, including AJ, who are Deaf/HOH.

AJ has had very little exposure to other kiddos. Yes he was in an orphange, but since we know he pretty much laid on the carpet away from the other "active" kiddos in his play area, yeah. That equals no exposure. While he desperately needed the one-on-one when he came home from the orphange and needed to bond with us, he now needs to function as a kid-with other kiddos. I was happy to hear the teacher's report of a moment between AJ and another little boy in the group during free play. He was talking and smiling at AJ...AJ turned to him, made eye contact, smiled and giggled. We're getting somewhere! This little boy took particular interest in AJ and was sort of his "Mother Hen"-it was very cute.

What did Mommy learn from observing, etc.? Several things:

-I need to brush up on signs and pursue taking the ASL 1 & 2 courses sooner than later. We had two deaf parents and I felt like a fool not being able-ok feeling inadequate-to sign to them and carry on a conversation. I am so used to using my first language English, that when I was tapped on the shoulder and asked through ASL if AJ would eat the snack, I responded with "Uh huh" instead of signing "yes".

-We NEED to sign with AJ a whole lot more. Enough said.

-We need to do more structured activities/play with him.

-We need to practice having him sit on our laps/floor in front of us and concentrate on listening/paying attention

-We need to continue praying for WARMER WEATHER so that we can get out of the house and expose him to more things, making EVERYTHING a language opportunity.

The staff did an awesome job with him. I was afraid they would "give in" to his whining and actions (we've had that happen before elsewhere). Instead, they redirected him if he was unhappy or bored. It felt "weird" to not be in there and doing it all. While I didnt feel like I "had" to be in there...I didn't know what to do with myself except keep watching through the window as my baby grew up right before my eyes. AJ had no problem being away from me :)

Later on that night I visited my Grandma in the hospital and apparently signed almost every word I spoke to her. As she said, "Whats with the hands goin' tonight, Heidi?" I just laughed and made a mental note that I should be doing this all the time.

AJ has group again tomorrow...we shall see how his second day goes! Below are some pictures. Please forgive the quality. I have an awesome "behind glass" feature on my camera, but I think because the window was a mirror on the other side, it caused the images to be distorted. Nevertheless, they are proof he's in school now!

With his teacher, noticing the lights were flashed as a sign that its
time to "Clean Up"


Bubbles!