Manny Updates

Florida Caregiver, Neenah Basketball Team

posted Dec 10, 2013, 9:03 AM by Manny Wilke

We got to go on our first non-surgery trip in 3 years to Florida this past month - a real vacation. We went to the beach and actually got to go in the water, something we haven't been able to do with all of our beach experiences in California. It was a great mini-vacation despite getting a terrible migraine. I haven't had one in years, probably since preparing for a surgery trip. I guess going on vacation with a family of 5 these days is equally as stressful as bringing Manny to surgery alone! I was bedridden for a full day of our short 4 day trip. While the other boys headed down to the pool or to the mall (yes, that Nate - he is "All-Mall") Manny insisted on staying by me and taking care of me. Florida: Pool, Beach Shopping. Nope, Manny insisted on being inside, sitting on a bed next to be in a dark room, watching a movie on his Kindle. To be honest, I just wanted to be left alone. But, I couldn't push him away as I can remember is him saying over and over again... "I will never leave you, Mom. I'm here for you. It's just you and me." As I thought about it after I started feeling better, those were my words to him during all of the surgery trips. I always wanted to make sure he knew I would be there for each and every 96 California days and that I would never leave him no matter what.
 
A few weekends ago Eli had a basketball tournament in Fond Du Lac. Despite Manny's sometimes lackadaisical attitude about sports, he (with big brother's help) decided to put on Eli's Positively Hoops basketball uniform from last year OVER his pants and over his long sleeve shirt. Manny then asked Nate (aka Coach Nate) if he could be "batboy" and Nate said, "sure, you can be batboy but you'll have to wait until baseball season. But, if you'd like to be ballboy today, yes you can." Typically, Manny goes to tournaments and just plays with friends, plays with an electronic, colors, visits the concession stand and constantly asks if it's time to go home yet. But, for all 3 games Manny sat on the bench with the team and carried the team basketball bag from gym to gym. Eli's team was losing badly during 3rd game versus Neenah. Coach Nate was getting frustrated and told Manny that if Eli's team didn't get their act together that he was going in to play. Well, of course Manny was all over that and kept asking him throughout the game when he was going in. Of course, Coach Nate didn't mean it but the referee overheard Manny. Before I know it, I hear Eli's teammate screaming my name and I look over - Manny is checking himself into the game with 15 seconds left. WHAT? NOOOOO! He will get hurt. He won't do well. He can't. He's in 1st grade. These are 6th graders. He's not on the team. The other team will be furious. Our team will be mad. What will the parents think? OH NO! Please no. And just like that, Manny goes into the game. Eli inbounds to Manny. He catches it (wow), and dribbles up the entire court (wow), goes all the way to the hoop around the defenders (wow) and shoots (wow) and it bounces on the rim (wow) just before the buzzer goes off (wow) but the ball bounces around and doesn't go in (who cares). From what I can remember, the place explodes with cheers, jumping around and smiles galore - from all kids, from all parents. Manny follows the team in the handshake line and the other players were giving him high fives. I fought back tears, I mean, how silly, right? And then my friend, Amy, comes up to me, SOBBING, saying that it was the best part of the tournament.
 
Apparently, the ref asked Nate if he wanted to go in and Nate said, yes, but he's not going in - it's ok - and the ref went and talked to the Neenah coach anyways, and their coach agreed. Without realizing it, Neenah took a timeout and clued in their 11 year old team to play defense but not too hard. Unbelievable. This is what you see on ESPN SportsCenter. Thank you, Mr. Ref and the Neenah coach/team for making such a special memory for our family, not even realizing the background or story of MannyMan. I just hope it's not the only time Manny plays club basketball!
 

First Grade Show and Tell, Surprise!

posted Oct 4, 2013, 12:50 PM by Manny Wilke   [ updated Oct 4, 2013, 2:54 PM ]

Manny is transitioning into 1st Grade very well. He loves his teacher and is happy about his continuous Speech and Hearing therapies. Manny gets pulled out of class a few times a week to practice speech and increase his listening skills. Perhaps I should send his hearing brothers to join him.

Last week, Manny asked me a picture of himself without ears. Why, I asked? Because my friends don't know I was born without ears. So, why do they need to know? It doesn't matter. It does matter, mom, because they don't know. They think I was born with big ears like them, but I wasn't. So, why do they need to know? It really doesn't matter. BECAUSE, MOM, they need to know that I was born with one small ear and one medium ear. Ok, fine. Whatever you want to do is fine with me! Just please know that you are perfect any way that you are - big ears, little ears, medium ears, and you don't have to explain it to anyone if you don't want to unless they ask.

I don't know why but my gut reaction was to not have him feel the need to "showcase" his differences even more than they already are with his skull and cross bone stickers on his bright white hearing aids. To some extent I feel like that is our past, not our present. I did ask Manny's teacher if he had shown his classmates the photo of him as a baby and she said, yes, it was awesome. In fact, he politely said to her in the morning before school, "May I show a picture of myself without ears sometime today? If so, please let me know when it may be a good time." And apparently this is how it went:

"I bet you didn't know something about me. Did you know that I was born without 2 big ears? I was born with one medium ear and one small ear. I went to California and Dr. Lewin gave me 2 big ears! Now I have 2 big ears just like you. Only, mine aren't just like yours. Mine don't bend. See?..."

The more and more I thought about it, the more and more I began to see how awesome it all was. He is so comfortable in his own skin. He wants to tell his friends, so why should I stand in his way? It is his past. It is his present. It is his future. And mine too. You'd think I'd know that by now after almost 7 years.

That's right. Almost 7. In fact, it's only 3 days away. And do you know what he really, really wanted for his GOLDEN birthday? A surprise party.  "Mom, you can just plan it in front of me. I'll just take off my hearing aids, sit right next to you and I won't hear a thing. Go ahead! I'm waiting!"

We did decide to give him an early birthday present yesterday because it arrived via FedEx when he was walking in the door from school. "JACKPOT! Thanks mom. You are THE BEST! This is what I've ALWAYS wanted!" What was it?

2 shiny new cobalt BLUE BAHA hearing aid covers.

I love that my almost 7 year old continues to teach me about life each and every day.

My stars have aligned...

posted Aug 5, 2013, 12:38 PM by Manny Wilke   [ updated Aug 5, 2013, 12:40 PM ]

In all my spare time (lol) of juggling 3 kids (make that 4 - Nate), working full time with my hotel management company, and coordinating continual California ear surgeries ~ although I think we are done for now ~ I started helping other parents navigate through the same microtia ear reconstruction process with Manny's ear surgeon, Dr. Lewin, as her Microtia Patient Liaison. Yes, I have a title. An official one. As you know, Dr. Lewin and I became fast friends through this process and we thought it would be fun to work together. And, it really is fun. And rewarding. I respect her so much on both a personal and professional level. She is an incredible person and would give ANYTHING for "her" microtia children.

In this position I answer parents questions about the surgery process and about microtia in general. Let's face it. I know my sh#t. Been there. Done that. Lived it. Live it. Every day. Every situation we have experienced and conquered one way or another. There really isn't a question I can't answer or find the answer.
I've been helping other parents basically since Manny was born (through the WI Hearing Aid and Cochlear Implant Bill as a Lead Parent Advocate, through Cochlear Americas as a Bone Anchored Hearing Aid Parent Volunteer, through Ear Community as a Board of Director, and just as a microtia parent in general) but this just a little more official.

I am also helping plan her Earicles 1st Annual Los Angeles Microtia Atresia Conference (LAMAC) at the beautiful Terranea Resort in Palos Verdes, California this upcoming weekend. So, Manny, my mom and I fly out on Wednesday to California for this ridiculously fabulous event! It will be a lot of work and a lot of fun. Manny will get to meet 100+ kids with no ears, little ears, new ears and hearing aids just like him from all over the world while parents learn about ear reconstruction surgery process. It is sometimes a lonely world, not only for Manny but for me, so it will be great to be surrounded by families in our "cool club." I will also get to finally meet in person some awesome moms with whom I've connected with along the way. Best part - we are headed to California for something besides surgery, a concept that still confuses Manny, and will be able to see Uncle Derek and Aunt Ashley. There will be no ear cups, no pain meds, no physical restrictions....but there will still be wine. That part never changes.

I feel like my stars have aligned.

Post Op, Home!

posted Apr 8, 2013, 1:42 PM by Manny Wilke   [ updated Apr 8, 2013, 1:48 PM ]

We left the hotel at 8:00am and had a routine post-op visit with Dr. Goldzstein and everything looked good. He said that he wanted a TMHTM shirt as everyone else in the office had one....be careful what you wish for... In addition, he told Manny that his friend, Brody, was scared to take the air mask for surgery, but when they told him that Manny did it like a big boy the day prior, Brody then took it. Dr. Goldzstein told Manny "You were a hero" and Manny's eyes lit up like Christmas trees. Whether it was true or not, it doesn't matter - it just made Manny so happy! We said our final "goodbyes"  to the staff at CEI (always wondering if they really are final!) and then headed straight to the airport 3 hours early. I always think we could do something for an hour, but I worry that I will then somehow hit traffic or get in an accident and then miss our very important flight home. So, we just walked the SCJ airport from gate to gate to gate to get some exercise before the long trip home.

Naturally, I met a fun woman named Natalie on our flight to go to Vegas. But, Manny started to not feel well and "blamed me" for letting him eat 3 oreos. He was dry heaving which is always awesome in an airplane. When we got on our second flight, Manny felt a little better, but his ear was starting to bleed. I asked the flight attendant for some gauze from their first aid kit. They didn't have one. No lie. Are you kidding me? No first aid kid on board. Note to self, do not bleed on flight. What is with needing gauze? I guess I do usually bring it with me on surgery trips but I would have checked it through in my luggage anyways. So, I had to go in the nasty airplane bathroom and get my "go-to" TP to stop the bleeding. He did sleep 3 hours on the airplane and I even rested a little myself. Good thing, since I had been up since 2am.

The boys picked us up at MKE at 8:45pm and by the time we got home it was 10:30pm and we were exhausted. There was a large poster from Manny's friends at school laying on his bed which really made him smile. He really missed his friends at school this surgery. I told him that we could make copies of the Cal Bears coloring page that he received at the baseball game and have a coloring contest with a little prize for the best one. He said, "No mom. That's not fair. I want all my friends to win." Excellent point.

We spent Saturday/Sunday in Appleton for Eli's basketball tournament (you can imagine my excitement to pack up for an overnight stay in a hotel) while Manny went to GJ's for some QT. It was a win-win for all. But now, I'm ready to stay home and get life back in order!

Post Op, Airport, Home! (hopefully)

posted Apr 5, 2013, 3:03 AM by Manny Wilke   [ updated Apr 5, 2013, 3:25 AM ]

The plan for today is for a successful post-op appointment (I don't think there will be any issue), then directly off to the airport and home! Rumor has it that Wisconsin weather has improved this past week for our return - it was 55 degrees in Wisconsin and only 66 (and rainy/cloudy) in Palo Alto yesterday. I'm very excited to see the boys. Abe is still missing us badly - in fact, one morning he woke up, saw grandma but wanted Mommy, so he went into Eli's room, shut the door and locked it. Oops.

Yesterday we enjoyed watching Brody's little 1 year old sister while he underwent his first ear surgery. Their surgery was delayed a couple of hours so it worked out well that we were able to play with her instead! We went to the Palo Alto Childrens' Zoo and Museum where I saw my classmate, Tanya and her children. I feel like I'm becoming a local. Then again, after 96 days (but who is counting), I sort of am. She so kindly invited us to dinner but I actually had to tell her that we already had dinner plans! The Espinosa family had invited us over for a Manny Meal - sausage pizza. It was great to see them one last time before we left. Perhaps we will come out for Easter #4 but this time just for fun! It felt really great to be able to help a family during the day and then get "help" ourselves at night. It's all just pretty cool when you think about it.

Well, it's 2am. I may as well get up and start adjusting back to WI time. Reality starts tomorrow as we head up to Appleton for Eli's State basketball tournament for the next couple of days. Manny gets to have a sleepover at Grammy J's to keep his ear safe and in a non-gym environment while I can give some attention to the other boys.

Here's to a smooth travel day and that we really get to fly home!!

Special thanks to Grammy J, Grandma Sue, Scharfs, Panichs, Loizzos and Peggy for their help this week with the boys at home! And thank you to everyone for their continued thoughts and prayers. We are so appreciative!




Seepage, Pitch Perfect, Playdate

posted Apr 4, 2013, 7:06 AM by Manny Wilke   [ updated Apr 4, 2013, 7:24 AM ]

After a Netflix filled Power Rangers afternoon, I was able to shove him in that baby stroller after all. He is used to it though, surgery after surgery, but he just keeps getting bigger and bigger. He fell asleep so I was able to just enjoy the sunshine while walking around. When he woke up we got some ice cream and while eating I noticed blood coming out of his bandages. When I went to investigate, it looked like chunky blood clots by his ear with some dressings coming out of his ear. It was 4:45pm so I throw my ice cream in the trash (which for those of you who know me, it must have been bad for me to do this) and I start frantically walking back towards the hotel and start calling the doctors' office in the event we would need to get there by 5:00pm (yet we never would have made it...there is a thing called Rush Hour out here). These are the times that I really feel all alone out here.

The doctors office told me to put some gauze on it and apply pressure, but of course I'm in a hotel room so I grab toilet paper (which was apparently not a good idea). Eventually, it did stop, but I just really didn't need that curve ball after a first-time-ever relaxing post-surgery afternoon. Then again, I should have assumed it. I was able to take pictures with my phone and email it to the office, which is helpful when talking to them - technology is definitely in our favor these days. Dr. Goldsztein said it looked like it was seeping from behind the ear, not the canal. In order to remove the ear canal they actually had to lift up the medpor implant and go in from behind the ear. Hopefully, his ear will still project as beautifully as it did before, because that side has a bony defect and it was a huge challenge for Dr. Lewin a few surgeries ago. I'm sure it will be fine. 

With the hopes of not aggravating the bleeding issue, we just stayed at the hotel and ate their free light dinner (how great is that?). Then, I allowed Manny to watch Pitch Perfect (most of the parts anyways) and he LOVED the cups part and tried to reinact it. I video taped it on my phone but can't upload it - it's hilarious. Where is Uncle D when I need him? I'm sure it's PG 13 and totally inappropriate but I was exhausted from getting up at 4am so don't judge...lol.

Well, it's 6:50am and the Henkes just texted that they are here. I am babysitting their 17 month old girl while they take Brody to his first ear surgery today. I love being able to help someone out here for a change and it will be fun for MannyMan to have a playdate.

Resting Comfortably by NOON!

posted Apr 3, 2013, 2:11 PM by Manny Wilke   [ updated Apr 3, 2013, 2:14 PM ]

We made it back to the hotel by NOON! That is a world record - I think we usually get back between 3-8pm. I always pack a lunch for surgery day, but I had already eaten my lunch by 8am, so I'm glad to be back to my hotel room with snacks because after surgery - we're both starving! Snacks include pb&j and extra chips from my BFFs (the owners at Simply Sandwiches) who so kindly treated us lunch (and surgery snacks) yesterday.

Manny is just chilling out in bed, watching Power Rangers and drinking a PEPSI (Nate/Eli's bribery - see Photos - Surgery 4-3-13) and eating popcorn. I'm pretty sure the rule was clear liquids and soft food. But, Dr. Champeau, our Anesthesiologist (we've had him 4x before...his relatives live in WI) gave him 4 different anti-nausea medicines so he feels really pretty good which is a huge relief!! You just never know how he'll wake up from surgery, and usually it isn't very good. Manny is just psyched because he doesn't have "hot pee" this time.

While in surgery I asked Dr. Roberson if he could help clean up Manny's left ear. Because his left ear can't get wet, I haven't been able to wash it well for months. In addition, there are some "pockets" on the surface of his ear that are more prone to allowing dirt to build up. So, today during surgery Dr. Roberson was able to give him a luxurious "facial" of the ear and remove the dirt and little icky bumps. Going forward, we should be able to simply wash his ear to keep it clean. 

The sun is shining through the hotel curtains. I'm hoping that I can convince my 6.5 year old to squish into into the baby stroller for a walk later this afternoon!

Thank you everyone for the well wishes and positive vibes, including WBEV radio back home! And, a special thanks to all of the awesome doctors (Dr. Roberson, Dr. Goldsztein, Dr. Champeau) and nurses (Justine, Manuel) today for making surgery such a success!

9:48am - out already!

posted Apr 3, 2013, 10:45 AM by Manny Wilke

Wow, world record time for a Manny surgery. He woke up once but is sleeping again peacefully. During surgery today was supposed to finalize 5 month end reports as it is the only time I am not on "mom duty" out in California and I need something to focus on versus staying nervous for hours. I am used to being able to get my work done during surgery. I'm not used to quick surgeries - help! I need more time :) But, I'm definitely not complaining.

Things went really well! Dr. Roberson was able to remove all of the skin in the canal as well as the prosthetic stapes which he had worked so diligently on in a previous surgery. He said everything looked really good inside which really is a bummer for us all, but there were actually two perforations in his ear drum so Dr. Roberson re-confirmed that closing it up was the right thing to do. Manny is just infection-prone and we can't do anything about it. There is a chance that Manny could SWIM in one month. I'm going to tell him 2 just to be safe! That is super exciting. I did encourage Dr. Roberson to keep working on creating new bone conduction hearing devices so that we can re-evaluate things after a few years. He said he is/he would!




4-3 Surgery Day, Outerspace, Surgery Buddies, Jacked

posted Apr 3, 2013, 8:29 AM by Manny Wilke   [ updated Apr 3, 2013, 8:37 AM ]

Today is surgery day. Finally 4-3-13 has come. We actually had surgery on 4-3-12 as well, which is kind of ironic. We arrived at CEI around 6:30am this morning and Manny went into surgery at 7:30am. This time, he just walked into the OR by himself with the doctors and nurses trailing behind and I just sat in amazement at how old he is getting. He didn't walk in without fear though. As he gets older and older, he knows more and more what is going on. While he accepts surgery, he isn't excited about it - but who is?Yesterday, he was worried about the gas mask. He kept asking about it over and over and I had used up all of my go-to answers. He finally said, "Fine. I'm going to just have to use my imagination. I'm going to put on the mask and pretend I'm on a rocketship going into outerspace." Excellent idea, thank you for the right answer, Manny!

Last night we were able to hit the park quickly (with a quick stop at my high school classmate's house near the park) since Manny isn't able to do physical activity for 3 weeks (that includes gym, recess, karate, etc). We then met up with the Henke family at Chilis, our pre-surgery dinner ritual. Then again, it's our 3rd night in a row there - it's safe, typical American food with corndogs - Manny's favorite. Three year old Brody is undergoing surgery tomorrow with Dr. Roberson. The Henke family lives only an hour away from us in Wisconsin. They reached out to us a couple of years ago when they saw us on the news and we've been in touch ever since. It was fun for the boys to compare hearing aids, compare ears, talk about surgery in kid terms, and just stare at each other!

On our way home Nate called. Apparently, Eli got jacked in the head by a 3 year old and a free weight. Shockingly enough, it wasn't my 3 year old. Nate thought he was going to have to take Eli to the ER as blood was everywhere, but it finally stopped.

There is a sign in my house from Uncle Bruce that says "There is a special place in heaven for a mom with 3 boys." I couldn't agree more.

Photos updated - see Photos> 4-3-13 Surgery

4 of 5, Plane "ride", Pre-Op, Popping Tags

posted Apr 2, 2013, 11:00 AM by Manny Wilke   [ updated Apr 2, 2013, 11:01 AM ]

Did I just say that with each trip things go a little smoother? Well, to sum it up, we spent Saturday night in the Urgent Care. Abe had been pretty miserable the night before and during the afternoon, and progressively got worse. He had complained of a sore throat. Nate and my throats felt a little sore, but nothing terrible. Anyhoo, 4 of the 5 of us tested positive for STREP, including Manny. Realize that this is just a few days prior to surgery so I was totally freaking out. So, we are all in different rooms at Urgent Care (there is an adult side and a pediatric side), and in between doctors I'm texting Nate to see what his test results were, and then on the phone with our local pediatrician, Dr Betsy, as well as Dr. Goldzstein, surgeon at CEI, to figure out what to do with Manny - while trying to keep the very tired kids confined in a very germy environment with long waits. We finally head out to find the 24 hour Walgreens to fill all 5 prescriptions (there is no sense not putting all 5 of us on it). Of course, it is crazy busy at 10pm on a Saturday night and after waiting for what felt like an eternity, I didn't have my credit card. Apparently, I left it at the restaurant. Of course I did. So, we had to go back there after Walgreens to get it. We wanted to get Abe his antibiotics right away, so I decided to give it to him in the car at the restaurant. But, he screamed and threw up all over. Of course he did. That night couldn't end soon enough.

So, Easter plans with our Godfamily got cancelled as to not infect them with our Strep germs. A few years ago we so kindly passed the flu around to about 20 family members at Thanksgiving, so we are pretty cautious now. Instead, we just chilled out and drove around (Nate=Grandpa Rod Jr). Luckily we were able to pack in some fun things before the Strep attack  - Cal vs. USC baseball game, Stanford track meet, dinner with Godfamily, baseball practice, a drive over the Bay Bridge. 

Yesterday Manny and I had to say bye to Abe, Eli and Daddy as they flew home. Four of the five us were crying, and Abe was like "bye mom, see you later, I'm going on a plane!!" Unfortunately, when Abe arrived in Milwaukee, he was sobbing because he didn't quite understand the whole situation, and he wanted to be with Mommy. We think he thought he was going on plane ride for fun and then back to the hotel again, despite telling him the plan for the week.  He woke up very sobbing uncontrollably again today :(  

Today we had our pre-op at CEI. We didn't need a hearing test this time which was kind of nice, because it saves us about 30 minutes. Everything went well and we are ready for surgery tomorrow - although I'm fearful to even put that in writing. Manny is not looking forward to "the mask that blows air" so chances are I'll have to buy him off with $1. Thanks to Grandma Sue and Grammy J for sending some Cali Fun $. He put his $20 gift card to Target in his pocket and started singing "I've got $20 in my pocket...I'm gonna pop some tags" ... and so we did. Super Mario towel for his pre-surgery bath and a new Power Rangers toy.

Tomorrow, surgery at 7:30am Cali time. All prayers welcome.

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