Love this poem posted on support group!

I'm Special
On my way from Heaven,
God delayed my trip that day.
He said that I was special,
and then sent me on my way.
But not before he kissed me,
Right upon my ear
He left his blessed mark
to carry with me here.
He whispered in my ear right then,
that He loved me without doubt,
and then He closed my ear up tight,
so the whisper won't get out.
He told me both my legs were strong
and would help me stand up tall.
He told me both my arms would work
to catch me if I fall.
My eyes would catch my memories
to store within the pages of my mind,
My heart would fill with all the things I would love,
so many things, I would find.
He told me I could fall asleep
to my Daddy's bedtime tales,
and listen while my Mother sings
of seas and boats with sails.
One ear, He told me, could hear the sounds
that little birdies make.
The other ear was His gift to me,
a blessing for my sake.
For when I'm feeling sad, He said,
my other ear would hear,
His whispered words of eternal love,
left waiting for me there.
(Author Unknown)

Thoughts on my Super Hero

Robbie will be 5 in April. He is our 3rd child and is my special perfect little guy who I wouldnt change for anything. He is my Hulk, my Superman, my Batman, well you get the point he is my super hero. He has gone through 3 surgeries, got pulled out of preschool away from friends, and has did a lot of traveling to doctors to get picked and probed at. Through all of this our super hero rarely complains! Mommy loves you.

Surgery Scheduled

Roberts surgery has been scheduled for March 31, 2010. The procedure will be occipital flap of right ear reconstruction with full thickness skin graft. We are hoping, and praying that this be the last surgery for our little guy.

Things are going well with Robbies ear. The scabs are slowly falling off and the ear canal has had no drainage in weeks. Things at the momment are going in our favor and we are doing everything in our power to keep it like that.

HAPPY THANKSGIVING TO ALL!!!!

Another Infection

Robbie woke up Sunday with brown gunk coming out of his canal. He has not had any issues since the removal surgery and I was pretty shocked once again. We went to our ENT today and he said it doesnt look as bad as the other infections and put him on a bacteria drop for a week to see if it helps. We will go back next week and if its worse or not better he will culture it. WHAT A BUMMER!!!

After surgery 3 - Removal of Medpor

Here is the first pictures of Robbies ear without the medpor. We were to take off the bandages Thursday night but they came off when I pulled his shirt over his head Thursday morning. To my surprise it didnt look like what I was expecting. To be honest though I havent a clue as to what I was expecting! Dr Reinisch said we can wash it this weekend. I expect it to look much better as it heals and the redness fades.

For the next surgery all of the skin will be removed and replaced. Also a new membrane with a blood supply.

Post Surgery 10/13/09

Got back to the room about 20 min ago and Robbie is doing great. He is complaining and not happy about the head wrapping but he has downed a cup of apple juice and is eating gold fish crackers and pretzels. I think thats not bad considering he just woke up in the OR less than 1 hour ago. Dr Reinisch removed the medpor, and sewed the skin together. He said things should heal pretty fast and that our thoughts of a March surgery should be fine. We went over all our questions and Dr Reinisch spent alot of time chatting with us which put our minds at ease and made us just love the guy even more. Dr Roberson looked the canal over and I am assuming eveything looked good in there. The only report back on the inside is that there is still a hole inside but it should heal up now that the medpor is out. I feel both relieved and hopeful today. Relieved that I no longer have to put bandaids over Robbies exposure and hopeful because after talking to Reinisch about the surgery to come I feel pretty sure things will end up ok.

We are going to rest Robbie most of the day but our plans are a nice dinner and a trip to Toys R Us. I am sure the toy store trip will be reminded to us at any time. We used it as bribery to get him to take the relazing meds.

NO ONE CAN STOP THE NINJA!!!!

Another exposure

There is another small hole above the bigger hole. I hope the skin holds for one more week and doesnt connect the two together.

Thanks and Update!

I want to let everyone know that has either posted on the support group or emailed me that I appreciate your kind words and positive thoughts you have pushed my way. I wont lie and try to sugar coat anything about how awful these last few months have been for Tom and I. It has been the most stressful time of our lives. We were constantly being consumed by the what ifs and the guilt of did we make the right decision. We are doing A LOT better now and with our family, friends, faith, and kids in the picture we have snapped out of it and are ready to move forward with nothing but a positive attitude.
Robbies exposure of course is bigger and I am still covering it with band aids. I did panic a bit this last weekend again but was calmed after talking to Dr Reinisch and having him reassure me that its ok, its not dangerous, and that he is going to fix our little guy very soon. I think the biggest obstacle for us is not having the doctors close and needing the reassurance that only they can give. I can not even imagine this happening to anyone out of country. But again how Robbie healed is evidently rare and the worst either doctor has seen. This of course doesn't sit well when you also factor in the odds of his condition with the microtia/atresia.
We are getting down to the wire again and are at the 1 week, 4 day mark (yes I count daily). I cant help but to think about what I will say to Robbie if he asks what happened and why is his ear gone. We have told him and are prepping him for surgery and he seems cool and collected which I am sure is because he is only 4 and doesn't dwell on things yet unless they have to do with video games.
I will post pictures this weekend so again there is more reference on the blog of exposure. I hope no one will ever have to deal with this in the future but my intent is getting this blog turned back around and into a positive posting place!!!!!

9-25-09 night

I am at a loss of words. I just told people I would post tonight.

Exposure 9-25-09 morning

Bigger Exposure

I have been putting the smallest band aids they make over Robbies exposure so he wont touch it. It hasn't been pussing a whole lot but everyday the exposure is getting bigger. I was in total shock once again when I lifted the band aid last night and the exposure is almost 10x the size it was last week. Not only can I see the shape of the framework I can now see into the cavity of the skin. The Oct 13 date is always on my mind and how many days we have left. I try and stay brave and not make a big deal of things in front of Robbie but now I am having anxiety attacks on a daily basis.

I keep thinking ahead to the surgery next year when the medpor will be placed back again. It will end up being after the year post op from the first combined surgery. This should of been the time when the medpor was to be fully healed. What are the chances not only of my little boy having the microtia/atresia but also not healing right from surgery. WHY!!!

I will post a picture of the exposure soon. Even though this blog hasn't turned into the positive experience I wanted it to be, I still feel obligated to continue on for a reference for those parents who need it. I still continue to pray and hope that our situation will change and this blog can start getting positive. We are not giving up and I have no doubt that Dr Reinisch is going to either.

Fungus to Bacteria

Well we went from the fungus drops back to the bacteria drops today. The ENT took a culture from the exposure and it came back staph bacteria. The exposure site on the outside has doubled in size and I now have a 2x a day daily regime of squeezing puss out of the exposure to prevent build up and a possible worse infection. I never thought I would think this but I am looking forward to removing this medpor. I just think the little guys skin has gone through so much around the medpor. The sad part is again the medpor is starting to take shape and sink in and look really nice. It is a constant struggle to keep Robbie from touching his ear. The last thing I need is a 4 year old with dirty fingers touching the exposure. Tomorrow will be our 3 week count down to surgery. Then we will have the long process of healing before the medpor can be placed back in.

Removal of Framework

Well we got the word yesterday that Robbie will have a surgery in 4 weeks back in Palo Alto. I have not talked to either doctor but the surgery scheduled is to remove the frame work and some of the bad skin and then wait 3-6 months for things to heal before a new frame work is placed.

Bad News

9/07/09

Last week Robbie started having drainage from the canal on the medpor ear. After talking to Dr Reinisch and getting some antibiotics called in from the CEI the out come of Robbies surgery almost 3 weeks ago to fix the tissue in the canal has seemed to fail. On Friday our ENT looked in the canal and there is not yet an exposure but the skin is not taking to the site. Our hearts broke when Dr Reinisch explained what is happening that basically the tissue they tried to save is dying and this will require another surgery replacing all the tissue in the canal on the trouble spot. Again this also means another medpor replacement. We are very heart broken and can not believe this is happening. Even with this next surgery there is still another surgery to lift the medpor ear after all heals. I will post more when I get more news.

9/15/09

Last Friday things seemed a little better. There was very little drainage coming out of the canal and it was only at night while Robbie slept. The ENT again didn't see any exposure in the canal on this last Friday the 11. So we were to say a bit hopeful for some miracle to happen. That night while bathing Robbie he had a sort of white puss trapped under the medpor and after washing it it broke through and he had puss drain. I emailed Reinisch and it really wasn't anything I have not already seen so I wasn't to concerned about it. Last night after bathing Robbie it again was oozing by me washing it gentley with a wash cloth. I called Tom in to take a peak and our hearts sank at the same time and no words were needed. We both knew at that moment that he had an exposure on the outside of the ear. I talked to Reinisch this morning and he instructed me on what to do to care for the wound and we are waiting to see when and where Robbie will have the next surgery. From my understanding this next surgery can play out a couple different ways. Please keep our family in your thoughts and prayers. I am attaching pictures of the ear showing puss coming out so its easy to pin point the spot and then with out puss. The back of the left ear is still looking good and we have had no issues.

New pics

Seems are going well. Everything seems to be healing and Robbie is having no problems. The medpor is still dark but has already begun to start sinking in and taking shape. Behind the left ear is looking nuce and that problem area is closing of and healing. As for the scar on the tummy all I can say is wow.

Back South

We are heading south again for a post op with Dr Roberson on to remove Robbies canal sponge and the sponge behind the left ear. All is good and his ear is looking better each day. He has what appears to be a lifted area on the skin from behind the left ear where Reinisch replaced the skin. I am hoping when the sponge gets removed it isnt going to be a big deal and will heal with some ointment and TLC. I know how the first skin didnt heal and had this issue but I am still not going to panic about it yet. I am also praying like crazy that the canal is going to look great and no infections. I will post pics soon after I give the little man a good bath

with no sponges :)

Unwrapped

Well I put on my brave mama face and started cutting away at the head wrap. I took lots of deep breaths before I pulled off the last of the guaze and to my surprise it was not bad. Bruised yes but not as swollen as I imagined. Right away I noticed that all the ugly scars were gone from the back of the ear and the frame work did look smaller. There is no more poked out frame work in front and let me just say wow and phew!!!! I emailed Dr Reinisch as far as how to bathe and care for it and I am sure some more of that dried blood will come off after I give it a good wash. I took pictures from every angle I could until the little guy had enough. Also I took a picture of the stitches. LOL, Robbie was not shy at those shots and I had to do the covering of certain areas lol.

I am very thankful to both doctors and am going to move forward with a positive attitude. I am also still trying to figure out how to keep Robbie from bumping anything.

Better

Robbie seems to be more relaxed this morning. Tom kept him in the other room last night and he slept in the middle of him and Trevor. Brianna and I had the whole king bed to ourselves and I slept like a baby all night. I woke this morning and went to check on Robbie who was sitting up in bed just staring in the dark. I picked him up and brought him back to my bed and we spent 15 minutes trying to turn on the tv. (the hotel is upgrading and it is a tough remote to figure out.) I asked if he was hungry which he was so I went to the hotels breakfast and got him yogurt, oatmeal, and dry cereal which he had a little taste of it all. Robbie isn't complaining of any pain and besides moving very slowly (not walking on his own yet) and a dry cough that I assume is still from the breathing tube he seems to be ok. I checked his sutures this morning and there is some drainage but we were told that would happen. I am surprised of the way the sutures go. I will still get a pic to post of it when I can.
Not sure what we will do today. But am definitely not looking forward to the drain tube coming out tomorrow. I know that is one of the worst parts as far as pain.

Awake!

Robbie woke around 6:30 and was not very happy. He complained about both ears the tube in his neck and the groin area all hurting. He had a few sips of apple juice and 1 bite of jello and another dose of meds. He got sick about 30 min after and has had only 1 small sip of apple juice since. Poor guy! We went outside for 10 min and watched brother and sister swim from the balcony.

Daddy and Trevor snuck to Ross when they got dinner and bought 2 more ps2 controllers so all four of them could play a video game together. Robbie seems pretty content at the moment sitting on the couch playing a game. I hope to get him back to bed in a bit for hopefully a well rested night.

Done

We got to see Robbie in recovery around 2:00. He was crying and complaining of pain this time which I wasnt expecting because he was so calm during the combined in March. After some good meds he calmed a bit and has been sleeping since we got back (its 4:51 now). Tom went and got the family some food and I sat as long as I can to eat but ended up getting up many times to make sure the little guy was still sleeping. I am praying when he wakes he will ask for food or a drink and be in better spirits.

The surgery went well according to Dr Roberson. Robbies head is wrapped in a purple bandage as you can see in the picture. He has a drain tube that comes out the top of his neck until Wednesday and a stitched on sponge on the back of the left ear. The nurse showed us where they took skin from the groin area and it looked pretty good. We did not get a chance to talk with Dr Reinisch before we left because he was working on another patient. We do not have any post ops in LA and will head home Wednesday after our post op at the CEI.

I will post pictures of Robbie when he is a happier camper hopefully later tonight. Enjoy some from Great America on Saturday.

Waiting

Well, things have changed a bit from what we originally thought. Last night at the preop with Drs. Reinisch and Roberson they checked Robbies ear out and yes it had an exposure and yes the medpor needs to be changed out. This was a big blow to us and I have to admit I was in a bit of a state of shock. They said Robbies retraction from the skin graphs shrinking was the worst they had seen. So the game plan today is to replace the medpor, replace the skin in the canal where the problem areas are, and replace the skin behind the left ear where again the skin graph shrunk. This means that today they will not release the medpor from the head because they don't want to do to much so that the skin can settle to the new medpor. Which this all means there will have to be another surgery in the future. I will post more when we get back to the hotel. Surgery should take around 3-4 hours.

Wow

Just saw a link to the combined surgery on youtube. The little blonde boy having surgery looks familar!!!!!!

http://www.youtube.com/watch?v=rxH4BwRHrFo

Eeeeeek

So as some of you may know Robbie had a bit of a day yesterday. He seemed to be a bit clumsy when I took him to daycare and from the car to the front door he walked into a fence, walked into a tree, and ate pavement. I told the teachers that he was having an off day and left. Well of course I get a call around noon and they told me Robbie had sat down to eat lunch at the same time as another kid and they hit heads and Robbie was bleeding from his canal. I thought perhaps it was the infection oozing and went to check it out. I jumped in my car and when I arrived and checked him over yes it was blood and not the infection . The ENT was in surgery so they scheduled an appointment in the morning and the ENT comfirmed that he had ripped the inside of the canal and the medpor was exposed. After calling both Reinisch and Roberson we can still wait until the Aug 17 surgery to address this. We are still dealing with the infection and will continue to do the daily regimin. I am now praying that these next 3 weeks speed by and actually looking forward to his surgery. I can not wait to get my little guy al fixed up.

Changes!

We have cancelled the Aug 7 surgery for stage 2 medpor down in LA and have rescheduled a combined stage 2 with both Dr.s Reinisch and Roberson for Aug 17 back in Palo Alto. Tom and I are very happy that we are able to again see both doctors and hopefully get our little guy all fixed up.
I am not 100% sure what exactly the surgery will be, but of course Reinisch will adjust the frame work, seperate the back of the medpor ear with skin graphs from the tummy area, and possibly clean up scaring. Roberson is going to most likely reline the part of the canal which has been giving us all the problems and possibly address the canal narrowing issue. We just have to wait and see at the pre op the night before.
This whole process has been by far stressful and confusing for us. Tom has been gone the past 2 months and that has put extra strain on our family. Things have worked themselves out in the last few weeks and we seem to be back on track and are now going forward with a positive attitude.

Hearing Test

Well the hearing test went well. The results bounce around from the last test at 1 month. Some are frequencies are better and some went down. At this point I am not to worried about anything hearing wise. We will just see how it continues to go. he is still in the normal to mild hearing loss bracket. I am happy with the results.

April 14 test

Freq-Db
500-30
1000-35
2000-30
3000-25
4000-20

July 2 test

Freq-Db
250-40
500-35
1000-25
2000-25
3000-45
4000-30
8000-30

Count down begins!

We are starting to prepare for our trip to LA for Roberts Aug 7 stage 2 surgery. Things seem to be going good for his medpor. It continues to take more shape and looks better each day. Roberts canal is having issues with gunk and infection and seems to be closing up a lot. We are hoping to get these issues addressed soon and are trying to take it one step at a time and not overwhelm ourselves. Robbie is getting his post op 4 month hearing test tomorrow. I am very nervous and excited about seeing how his hearing is. I am attaching some pics which would be 120 days post op.

Culture that ENT took ended up being a yeast infection in the canal. We picked up our new drops and are hoping for the best and that this clears up.

Update

Today Robbie has an ENT appointment so they can take a culture of his canal. After his cleaning Tuesday the ENT said there is still an area on the outer canal that looks like a pocket where the skin graphs over lap. He says that seems to be the problem area. I am hoping the culture can figure out what exactly it is and what antibiotic can cure it. He has had 10 ENT appointments since his March surgery because his canal infection clogs up fast.
Other than that Robbie started preschool Monday and loves it. His medpor is looking pretty good and has not swelled back up. There is a spot on it that is growing blonde hair but other than that so far so good. Behind his left ear where the skin graph was taken STILL has not healed. I am hoping that this is something Dr Reinisch will address and can fix if its still a problem in August when he has the stage 2. I will post when I get the results back from the ENT.

Cute Pics

Much Better

Robbies ear is looking much better after being on the antibiotics and ear drops for over a week now. His canal does not have any of that white stuff anymore and the medpor ear is not swollen and continues to look better each day. Robbie had his canal cleaned again yesterday so we can use the drops and it had much less stuff in it then last week. The ENT said its looking much better and we will see how it does after he is off all the medicine.
These pictures are a couple I sent to Reinisch on Sunday. The one with his head tilted a bit is a good angle to see how much the skin has shrunk and pulled. When I talked to Reinisch on the phone we did discuss ROberts stage 2 a bit and he said it will be a pretty easy surgery and he would take the skin of course from the tummy this time because of how much the scalp skin shrunk.

Update

Robbies medpor ear for the most part had been looking pretty good for the last couple weeks. On Sunday when he woke I noticed it was swollen. There was also a red bump on the top of the medpor and the ear canal had a milky looking substance filling it. I took some pictures and again emailed Dr Reinisch to let him know what was going on. Dr. Reinisch called me on Monday afternoon and said it looks like a bug bite which he sees alot of in the summer. He called in some antibiotics and it is looking better since he has been taking the medicine. Everyday at bath time the medpor drains a puss or a clear liquid from the same spot but it continues to be less each night.
Today we went to the ENT to get the canal checked. I was completely shocked by how much stuff they pulled out of the canal. The ENT said there is definatly an infection in the canal and to keep doing the drops and medicine as instructed by Reinisch. There was a part of the canal where he said the skin graph was elevated. There has been some concern of a possible medpor exposure but I guess its a wait game to see how everything goes with the medicines. I just hope everything heals up and we can keep our stage 2 for August. Please keep us in your prayers.

Stress, Stress, and MORE STRESS!!!

So the last week has been a pretty stressful one to say the least. Robert had apparently bumped or scraped his medpor ear sometime last week which made it ooze a orange/white slimy substance. During bath time I gently pushed around it trying to get everything out and took pictures and sent Dr. Reinisch an email.
Friday was his 4 year old shots, and his brothers physical and shots for junior high. Robert had a low grade fever and both him and his brother had to get four shots each. Not a fun time at the doctors.
After talking to Dr. Reinisch on Saturday morning Roberts ear was looking much better and had no more drainage. By Sunday it had a nice shape to it and looked the best I had ever seen it. I wish had taken some pictures Sunday afternoon because last night Robert bonked his medpor ear on the cupboard in the kitchen and split the top open. He was in there less than a second and Tom and I feel awful and were in total disbelief and shock. Of course we sent Dr. Reinisch more pictures and put some Vaseline on it to keep it shut and hope it clots up and didn't cause any damage. AUGHHHHHHHHH! Things have to get better sometime right?
We have scheduled Roberts stage 2 in the beginning of August. We are hoping to head down south prior and give our family a well deserved trip to Disneyland!!!!!

I am attaching photos of Roberts ear when it had the drainage, the back of the left ear now and after he split it. Not trying to be graphic, this is for other parents that go through this can see.

Happy 4th Birthday / 8 weeks post op

Today is Roberts 4th birthday. He had a great day and is still bouncing around the house thanks to his chocolate peanut butter ice cream cake.
At 8 weeks post op here is where we stand. Of course the medpor outer ear is still looking the same because of the skin graph shrinking. We will try and schedule a stage 2 soon for hopefully this summer. The skin graph behind the left ear has finally sealed and we are hoping it will heal up now. The canal narrowing problem seems to be at a halt thanks to finding better ear plugs to use with the cream. Everything at the moment seems to be settling and boy I am happy about that! Thanks to everyone again for any help or kind words you have given us. They are always welcome and very much appreciated.

Pics

Here is a picture of Roberts skin graph that wont heal on the back of his "good" ear. Also check out a pic of him and Brianna doing Easter eggs. If you didnt know he had surgery on that ear "WOW". I am so amazed how the front view of him looks. Sometimes I have to tell myself Oh yea!!!!!!

7 week update

We found out a week and a half ago that Robert would need a stage 2 surgery. His skin graph on his new medpor ear is shrinking which is something we were told could happen prior to surgery. The top of his ear is not poked out but attached to his head which is pushing the medpor framework out on the bottom. Also Roberts skin graph site on the back of his normal ear won't heal. This last week we are also having issues with his canal opening getting to small. Our local ENT has taked to the CEI and they are trying to get it to stay open by using a plug with a steroid cream on it. These events have my stress level elevated very high.


On a good and positive note Roberts first hearing test was fabulous!!!

5 weeks and 3 days post op

A quick picture of Robbies ear. Its looking better each day. The skin is a little dry on it. The skin graph behind the left ear has not healed yet, but the graph next to the left ear lost its scab and is looking pretty good.