Brody Updates & Blog

BRODY UPDATES AND INFORMATION
 
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Debris, Infection, Hearing loss, back to Palo Alto.........

posted Feb 7, 2018, 8:22 PM by Ashley Henke

Debris, Infection, Hearing loss, back to Palo Alto...........

And just like that we are back in Palo Alto CA for yet another surgery.

Its been almost a year and a half since my last post back in July of 2016  when Brody had his second revision done on his right ear drum.   Since we have been back Brody's healing was doing good and we thought we were on the right track.  About a year ago we noticed Brody's hearing had been decreasing in his right ear, he has had multiple hearing test throughout the year to monitor his hearing loss and all his test were consistent with each other.  We decided last spring that we needed to have a permanent plan to compensate for his hearing loss in his right ear.  We decided that we were going to go with a Baha hearing aid (one similar to what he has been wearing on his soft band).   He was scheduled to have a surgery last October in Milwaukee that would implant a magnet behind his ear that the baha would attach too.  We ended up canceling that surgery because Brody started to get a bunch of build up (debris) in his right canal.  After the first cleaning the ENT had told us it was infected so we ended up doing drops for about 3 weeks until the infection was gone.  After several visits for cleanings we could clearly see that the eardrum had moved and that it had a perforation.    We consulted over the phone with Dr. Roberson and came to the conclusion that it would be best to close up the canal.  

Which leads us to today,  we are back in California where tomorrow Brody will have is 8th surgery to close up his right ear canal.  They will take out what they previously constructed and it will be closed up.  We can expect up to a 20 percent more hearing loss on his right side due to this. So he will have the baha implant (magnet) done during this surgery also. 

Please keep Brody in your thoughts and prayers tomorrow as he under goes his (hopefully) final surgery.

Whales. Giants. Road Trip. Planes.

posted Feb 7, 2018, 8:21 PM by Ashley Henke

Whales. Giants. Road Trip. Planes.

Brody is feeling very well, you would have never guessed he just had surgery!!  We ventured off to Half Moon Bay on search for sea shells and whales, and man were we lucky! We were amazed at all the humpback whales we saw just off shore. There were too many to count. We couldn't keep our eyes off of them. They were coming so close to shore to eat. It was a really neat thing to see! We also scavenged the beach for many shells, one of brod's favorite things to do. In the afternoon we participated in the California State Parks Junior Ranger program. It was a one hour fun, educational session with the park ranger and other kids. At the end, Brody was named an official junior ranger! Way to go Brod!!! 

Saturday we went to see the Redwoods. We drove to Big Basin State Park and hiked a little bit and sat and took in the sites! The trees were beautiful! After we got back to the hotel for the night I asked Brod about his hearing. I was curious if he could tell a difference between now and before surgery. He told us that his hearing was never like before. He could already tell a difference with packing still in his ear. This was very exciting to hear! 


Sunday we picked up Paul and Haiden at the airport and headed to Fishermans wharf. We ate  lunch and then went on boat cruise of the bay, under the Golden Gate Bridge and around Alcatraz Island. It was nice for all of us to see some familiar faces! Even though we face time almost every day with either grandma or Rilyn, somehow Brody still is home sick! 


Monday we headed to see some more whales and get out of the hustle and bustle of downtown San Fran. We also were able to hang out with Paul and Haiden again for the whole day! 


After the beach we headed off to the Giants game. We had some nice seats along the 3rd baseline thanks to Paul. 



Tuesday we had our first post op appointment with the Dr. He took out some of the packing and said things looked good. So we started on our road trip to Beverly Hills to see Dr Renisch ( the outer ear, medpor, doctor). Our 7 hour road trip  filled with, cows, pistachio feilds, grape vines, and huge hills! 


It was nice to see Dr Renisch and have him check out Brody's ears. He said they looked good! We spent a few nights in West Hollywood and then road tripped it back to Palo Alto for our final appointment with Dr Roberson. He took all the packing out of the canal. After we discussed all the final instructions with Brody's post care we were off to our final hotel. 


We fly out at 6am Friday. Thanks all for all your thoughts and prayers. We are all very happy to be heading home in the morning!  I hear I have some zucchini calling my name! 

Pre op. Surery Day. Beach.

posted Feb 7, 2018, 8:19 PM by Ashley Henke   [ updated Feb 7, 2018, 8:20 PM ]

Pre op. Surgery Day. Beach.

Wednesday: Our Travel day.
 Traveling this time around went very smoothly. We arrived at the airport in time, check-in and security went quickly, flight  was shorted than anticipated, and rental car line was short( normally VERY long). Right after arriving in San Fran we had to hightail it to Palo Alto for our pre-op appointment with Dr Roberson. We made it there even with a few minutes to spare. 



Dr Roberson looked over Brod's ears and his right side was just what we thought. The prosthesis had shifted and was though the ear drum. So to repair it, he is going to go in and clean it up and take cartridge from his septum in the middle of his nose and place it in between the ear drum and the prosthesis. This will make it stronger. His left side looked pretty good and he did a minor cleaning of his ear drum. Dr Roberson gave us a few pointers to give to our ENT back home to help with the cleanings. Brody was not looking forward to any part of this trip (except his cousin Haiden coming to visit), but love how we are treated at the California Ear Institute. Upon arriving the receptionist gave Brody a gift card for ice cream at one of the best ice places in Palo Alto. Dr Roberson and Kinsey are great with Brody, they just have a way with him. Thank you for your patience and understanding! While hashing over the details for the next day's surgery. Brody was able to pick something out of the toy treasure box. 😊

Following our appointment Brody met with an audiologist for a hearing test. It was a very extensive test and was kind of hard for Brody to stay focused after his long day of traveling and with his nerves running very high with his upcoming surgery. But after a few different techniques and games he was able to finish it. The results weren't exactly what we were hoping for. His left side, (the good side), had a decline of 5-20 decibels in some the pitches. And the right side was the same as it was back in March. We were surprised that they were declining. After thinking about the various ways of why and how it was declining. We were thinking maybe the airplane affected it or he just wasn't paying attention and listening to all the props. We would know more once we talked to Dr Roberson.

Thursday:  SURGERY DAY! We were to arrive at Waverly Surgery Center at 6:30 am. We went back in pre-op room to get ready. Being Brody's 7th surgery you would think that he would have it down. Well if anyone remembers from all his previous surgeries, he doesn't take well to anyone giving him anything! He was given his sleepy medicine and after only a few minutes of convincing he drank it! He actually drank it! Mom and Dad were besides themselves and were sooo happy! Mind you that in all his previous 6 surgeries he has never drank the juice! Once he had his sleepy medicine he was comfy in his puppy gown and watching Netflix with his teddy bear. Once they came to get him he was as content as could be! We gave him our love and off he went. We were so proud of him!!!!


When we talked with Dr Roberson about his hearing decline in his left side he would check it out during surgery.

Surgery only took 1.5 hours. He found exactly what he thought on the right side, and fixed it up. He looked at the left side and found some fluid on his middle ear. Not sure exactly where it came from. Maybe a left over cold, combined with the airplane. He said that is why his hearing has decreased some. So with some over the counter decongestants it should clear up and hopefully improve his hearing in that side. Which was wonderful to hear!

Once Brody was in recovery, he woke up and was ready to go home. He doesn't like to stick around. So off we went to Carl's Jr. for a vanilla shake and French fries! He rested for a little bit and then was ready to rock n roll! Wanted to go and do lots of things! Recovery on your 7th surgery must be way faster because we have never seen him up and at it this quickly!! Now to restrict him from running, jumping, falling, anything high impact! So we went to Whole Foods for some dinner.


Friday. Today Brody wanted to head to the beach to find some shells and look for whales. So we are off to Half Moon Bay.

Thank you to everyone who has thought and prayed for Brody! It truly has helped! God has a funny way of doing the best things for us. But with everyone's support we are on they road to recovery again! Thanks soo much!

The past year... Lucky #7

posted Jul 14, 2016, 3:16 PM by Ashley Henke

Well it appears that it has been almost a year since i have updated everyone on Brody. Sorry about that i guess sometimes life gets in the way of taking the time to write things down! 

 

Following our last trip-surgery to California, which was July 2015, we had high hopes that everything would have healed properly and we would have been good to go. Well we were headed down a different road. Through out the next few appointments and cleanings, we realized that the Prosthesis was starting to show on the ear drum. Somehow during the last year, the prosthesis slowly  shifted and punctured through the ear drum. While this all was happening, Brody's hearing was also decreasing. We started noticing his hearing wasn't as good as it should be, we were hearing a lot more of the 'what' and the 'huh' response to almost everything.  As a result to his 20 decibel hearing loss, on top of his already not normal hearing, he needed to wear his hearing aide to school as well as at home. Sometimes at home was more of a struggle. 


We stayed in contact with his surgeon as to what was happening. Finally they decided that Brody will need a surgery to repair his ear drum and figure out what happened so that it can be fixed. Which leads us to today, we are preparing for Brody's seventh surgery! Or as I like to call it LUCKY #7!!! We are hoping and praying for  Brody's sake that this will be his final surgery. We will be heading out to California next week,  from July 20-29. This time around we will be visiting both of Brody's surgeons. Dr Roberson is in Palo Alto which is where we will be staying for a few days for the initial surgery. There they will fix his canal, ear drum, and prosthesis. they will be taking some cartilage from his nose to help make the ear drum stronger, this is something that they have never done before. Then we will be heading to Beverly Hills to see Dr Renisch, who did Brody's outer ears (medpor),  to look at and do a minor procedure to fix a spot on his right outer ear. Then we will be heading back to Palo Alto for our final post op appointment and back home again. 


 

So if you are reading this please pray for Brody and that all goes well with our travels, surgery, healing, post-surgery care. Brody isn't looking forward to this surgery, let alone a surgery and a minor procedure all in the same trip. We could use all the prayers we can get. Thanks!

Saturday, August 1st 2015

posted Aug 24, 2015, 9:22 AM by Ashley Henke

Final post-op. Home. Cards.
Thursday was our final post op appointment. We were instructed how to care for Brody's new canal, ear drum and implant. With all of the what NOT to dos. And found out he has 2 more weeks of the non-normal boy routine. No running-no water, all the fun stuff. Said our good-byes and with high hopes of not returning for obvious reasons. Dr Roberson was very positive and liked how things were looking and healing. 

Friday started out at 3am for our travel day back to WI. Everything went very smooth until we were about to land and it was a little windy and we were in for a bumpy landing. All and all we were very happy to be on the ground! 

Brody was beyond excited to get home for 2 reasons! 1. He missed his siblings 2. Rilyn let the cat out of the bag and said he had a lot of cards in the mail!!!
 ��

He was very surprised to get home and have a whole bunch of cards to open ! Thank you to everyone who took the time to think of him and send him get well wishes with your cards, pictures, drawings, and sticker art! You all really put a smile on his face. Thank you so very much! Once we arrived home he was greeted with an awesome welcome home sign and ballon & candy.  

Thanks to you all who have been sending yours thoughts and prayers also. We are glad to be home and are looking forward to fast healing ! Gods blessings to you all! 

Tuesday, July 28th 2015

posted Aug 24, 2015, 9:19 AM by Ashley Henke

Healing. San Fransisco. Football players.

You probably all have heard me say how hard surgery day is for Brody. Well the healing part is always the hardest part for mom and dad. When having surgery on the canal, ear drum, and the middle bones (in brod's case, his prosesis). Brody has some strict restrictions. No water, no swimming, no baths, no running, no jumping, no bouncing, no climbing, no head banging with his sister while skypeing, and the list goes on. We have had a rough time in the past few surgeries keeping our BOY to sit still and watch TV. This time around, Brody is older and (mostly) understands that he needs to keep still. Brody has said he has no pain after surgery which is AWESOME!!!!! He does have 5 days of 2xday antibiotics which are not so enjoyable getting him to take. Let's just say if you need any tips on how to hide medicine in any type of food or drink. I've got you covered. ��

We have been hanging out in the hotel playing uno, drawing pictures, playing games on the ipad(tractor pulling and duck dynasty are the favorites), and building Legos. There is only so much hotel time that I can take and we needed to get out. Brody wanted to head to the beach so we both thought his was a great idea, as we would be in the car about an hour each way. We took a very scenic route on Page Mill Rd from Mountain Veiw to the San Mcgreigo beach. It was a beautiful day walking the beach looking for sea shells. 

We then headed along the coast to Half Moon Bay for some lunch at the Princeton Seafood Market, which had some delicious fresh fish. 

We headed to San Fransisco one day to sight see and take in sights and sounds of the city. These day trips are perfect as we spend a quite a bit of time in the car and lots of time walking. Which is doctor approved. 

Today we had our first post op appointment. They removed the packing form his ear and checked everything over. He said it is healing nicely and is thinking positivity on getting some good hearing results and great healing. He also removed the 4 sutures from the skin graft site. Dr Roberson & Kinsey are great at getting Brody to think about other things while getting what they need done. Brody learned that he was tuffer then most football players with his many sutures over the last few years added up to more then most football players.  

Brody has been a real trooper these last few days and is looking forward to getting home. As is Rilyn and Milo looking forward to us getting back. Brody and Rilyn are fun to watch and listen to on our nightly skypes. Tonight was a little crazy as Rilyn and Brody were head banging and as you may know, a big no-no for Brody. As much as we are looking forward to getting back, that will make Brody's healing that much harder as he has his siblings to keep up with, the running, bike riding, bird chasing, and other normal shenanigans. 

Thursday, July 23rd 2015

posted Aug 24, 2015, 9:18 AM by Ashley Henke

Clouds, smores, and the big #6....
Yesterday was our travel day. Left at 5am and flew from MKE to SAn Francisco. It was a nice 4 hour flight with some great views from the plane. Brody was looking for our house/grandma & grandpa house so he could wave to Rilyn but had no luck. ✈️

Once we arrived we ate lunch at one of our favorite sandwichs spots, simply sandwiches, and checked into our hotel. Then we had our pre-op appointment and hearing tests at the California Ear Institute. Dr Roberson confirmed the weeping skin inside the right canal. We had been communicating throw Skype and emails, but it is really hard to take photos of the inside of an ear canal! 

Our hotel hosts a nightly mixer and was a perfect way to end our first day in California. we roasted marshmallows and enjoyed smores with a nice cold beverage. 

Thursday morning we were scheduled for surgery at 10am and ended up going back at 11am.  Brody dreads surgery day. I can't blame him since he has 5 surgeries under his belt already! It was a rough week prior as he is older and knows exactly what to expect. 

This morning I was watching my little man sleep and was reading some texts and good luck posts from my sister and sister-in-law, and was thinking about how much it means to me to have such a great support system of family and friends. How awesome would it be to have Brody see this first hand too. So this leads to a favor I have to ask you. If you have a spare moment, please send Brody a  get well, thinking of you, or simply some encouraging words in a card. He loves getting mail, and will be nice for him to get back home and have some cards waiting for him! �� w4146 12th Rd, Montello WI 53949

Surgery: Brody wasn't so cooperative going into surgery, but did great once he had some medicine to ease him and start to veg out. Dr Roberson did exactly what he thought and then some. The surgery was just under 2 hours. The Dr ended up replaceing his prosesis on his right side with a little bit longer rod to attach to the ear drum. The weeping skin which we could see from the outside was causing the skin to get inflamed and was pulling the ear dum away from the prosthesis. They then replaced that skin and put a new ear drum in. It was a little more then they had anticipated but will hopefully heal well and get much improved hearing results, just as good or better then the left side. They also went in to the left canal and cleaned it up, as he had some debris directly on the ear drum. Dr Roberson said this cleaning should help with the high frequencies as he was having decreased hearing in that ear as well. Brody slept for 1.5 hours in the recovery room and was very tired waking up. Once we left the surgery center, he slept in the car on the way back to the hotel. He ate some food and then went back to bed. 

Purple is the color of royalty. They choose purple for all their patients because each and everyone is treated like royalty! We love Dr Roberson and all his staff. They do take the very best care of our baby! 


Thank you to all who have prayed for, called, texted, and thought of Brody during his surgery. God is great! We  still have 4 weeks to see what the final result is, but please continue to pray for him as he needs to heal and be still(no running, jumping, swimming, etc.). 

Granulation tissue... Hearing Aids... California...

posted Jul 13, 2015, 12:56 PM by Ashley Henke

Hi all. Hope all of our Brody followers are having a great Summer?

Brody enjoyed his first year of pre-school, making many new friends and getting used to the whole new school thing.  Brody wore his hearing aide (BAHA) everyday that he went to school and had no hearing issues. His teacher said he did great! As the school year went on, it was harder and harder for me to get Brody to wear his BAHA as it was uncomfortable and hot as we got into the warmer months.

Throughout the school year we headed to Milwaukee for Doctors appointments 3 times. Normally we would have only headed to Milwaukee every 6 months, but we were battling the Granulation tissue. The one that I mentioned had gone away last September, well it has been repeatedly coming back and we think it affects his hearing each time. The ENT prescribes drops to help dissolve the tissue but for some reason it keeps coming back. One thought is that the canal is not getting a chance to dry out, leaving moisture in there. We tried solving this with the use of ear plugs whenever Brody goes in water, but this didn't seem to work. It is hard to figure out what is causing the tissue to grow. Brody has a lot of debris in the right canal when we go for our cleanings, we decided that something needs to change.  Especially since his canal gets cleaned every 3 months and that is still not enough as all the granulation tissue keeps growing and his hearing is decreasing as we get farther down the road.

We had decided that we are going to try a traditional hearing aid in his left ear as this is the canal that is very healthy. Brody needs to have some sort of hearing aid as his hearing as decreased well below normal hearing. We ordered the hearing aide at his last appointment and we will be going next week to get fitted. We are hoping this will aide him enough to get him up to normal hearing. 

After we decided to get the aide, we consulted with Dr Roberson's team in California and discussed what was going on with Brody and about his hearing loss. We have decided to head back out to California and fix this issue we are having with the canal. During this next surgery, they are tentatively going to reline his canal with new skin to get rid of whatever is making the granulation tissue keep growing. And they are also going to look at his prosthesis in his right ear as after looking at his audiograms, they think the prosthesis may have shifted or something, which may also be the reason for the hearing decrease. This surgery will tentatively last only 1-2 hours.  He will have to have a skin graft on his head again and will need to stay still for 4 weeks following surgery and no water.  OF course all these things are tentative as the Doctor is only going from what we tell him and Brody's records from the hospital here. Once we get there and they do a pre-op this may all change. 

As much as we don't want Brody to have to go threw another surgery, we feel that this is the right thing to do and will be best for long term care and hopefully increase his hearing. (our main goal since day 1) Brody also doesn't want to have this surgery as he knows all to well what it entails. :(

I am hoping this is the last one (as we did 2 surgeries ago) We will be flying out on July 22 and be out there for 10 days. 

Please say a few extras prayers for our family, but especially our Brody boy as he is the one who has to go through  his 6th surgery in his 5 years of life. 

God has a perfect plan for us. He never does it all at once; just step by step to teach us to Walk by FAITH not by sight.

First day of school...

posted Sep 2, 2014, 8:31 PM by Ashley Henke

First day of school....
Today was Brody's first day of Pre-K at little lambs learning center at St Johns Lutheran School. He was one brave cookie! Mom was pretty brave too. 

When Brody got home from school, we filled out a little interview questiaire for him as a keepsake. One of the questions that I asked him was, what is your favorite thin about you? He replied; MY EARS! This totally melted my heart and the tears started flowing! Our Brody boy has been threw soo much with all if his 5 surgeries, countless doctor appointments, and such. He and I both have had many tears these last few years  over these ears! But today, none of that mattered! He was very happy to have his big boy ears! Even though I questioned all the surgeries, to see him go threw it all at his young age,  I knew he did like his new ears, it just never really came out like this!  His favorite part of him was his ears!!! This was soo wonderful to hear! 

Thank you to all of you who have helped is in this journey. I wanted to share this moment with you ALL as you are all part of our big boy Brody! Love to you all! 




Follow up Appointment...

posted Sep 2, 2014, 8:13 PM by Ashley Henke   [ updated Sep 2, 2014, 8:30 PM ]

Aug 28th, 2014

Today was Brody's follow up appointment for his right canal, to see how the granulation tissue is and hearing test.  After a little craziness on the way to the children's hospital we were only 1 hour late for his 7:30 am appointment. Lets just say, that backed up road, not getting along with the GPS, and a little road construction wasn't helping our case.

But at last we arrived, and heard some great news! The granulation tissue has dissolved and his hearing increased 25 decibels, which is right where he was after his canal surgeries! :) This is great news.

The audiologist talked with us about possibly getting an in the ear hearing aide as brody will need to be aided once he starts school! We have not decided if we will go this route or not yet. For now Brody will have to wear his BAHA to school.

After all the appointments and craziness of the morning; we had a big surprise for Brody. We spent the afternoon at the Milwaukee Zoo! It was a perfect day to wander around checking out all the animals!

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