My boy is back!

Robby is at 90% today. We visited friends (more on that later) They have a 5 year old daughter and Robby spent the day running and playing with her. He rode bikes, threw balls and rough housed with the dad. it was so good to see him laughing and playing. He only really had touble when he tried to hula hoop. He couldn't twist like that because of the skin graph. He was very good about watching his ear and not bummping it. It is amazing the difference between yesturday morning and today. Thanks for all the prayers.

no tubes = happy boy

Robby got his tubes out today at 1:00. What I hadn't realized before is that one tube was under his skin about 2 inches and the other about 3. Yuk. He now looks like he has been bitten by a vampire. After getting that done, we drove up to Griffith Park. On the way we past the Chinese theater and saw (from the car) some of the stars on the sidewalk. We had lunch at a little restaruant in the park. I felt very Californiaish eating a sandwhich of avacado slices, tomatoe and sprouts on whole grain bread. Not what you would find at a park consession stand in Ohio. Robby didnt think much of it. We took a short walk and drove up to the observatory and saw the HOLLYWOOD sign. After coming back to the hotel Robby has been going strong. We played ball, computer games and numerous hands of go fish. I have discovered I am not a very good go fish player. Robby asked me how come I am not winning.
The tubes must have been really bothering Robby, because he continues to feel better and better since getting them out. More later when he is not whining at me to play.

no pictures and other things

well my success at posting pictures is not being repeated tonight. I am not enough of a geek to figure out what I am doing wrong. Sorry.

We are staying in the Koreatown area of LA. I found it humorous that the Chinese restaurant we ate at tonight had a bi-lingual menue: English and Korean. We also got a side of Kim Chee (Korean cabbage) with our lomein. It was wonderful food, except for the kim chee which I have decided is not for me.

Dr. Reinisch called late this morning. When he heard that Robby was having the amount of pain he was experiencing, even on the codine, he raised Robby's doseage. After the increased medicine and a nap Robby was doing better. He even got up and played a little. Tonight he is feeling bad again: his throat hurts, his tummy skin graft hurts, his ear itches and his head aches. Poor kiddo. He cant have more meds for two hours.

7am to 8 pm

We arrived at the surgery center at 7:00 am and left at 8:00.......a very long day. Robby's surgery went very well. Dr Reinisch said every thing went smoothly except for some unexplained bleeding at the end which they were able to stop. The recovery room was a little rough for Robby. He did a lot of thrashing as he was waking up and had some trouble breathing. He had a lot of mucus and irritation making his breathing rough and croupy sounding. After wearing an oxygen mask that contained mist for sever minutes his breathing calmed down. The bottom of his heal is really sore. I think he must have hit it on the side of the bed when he was thrashing.

During the surger they took two different skin grafts: one from his head on the left side and one from his tummy. Both those sights are causing some discomfort. He also has two drainage tubes that lead from under the skin by his new ear to two small containers. They seem to really bother him. He is unable to move his head to the left. Tomorrow when we got to the Dr's they will remove these tubes. He is taking tylenol with codine every four or five hours. This morning he much more alert and has eaten some oatmeal. His voice sounds quite strained from having a breathing tube for so long.

In addition to the drainage tubes, he has a hard cup over his new ear and will wear a skull cap for a while to hold the cup in place and protect the ear.

odds and ends

Robby thinks we have a fancy rental car because the windows opperate with a hand crank instead of automatically. : )

I know that LA is surrounded by hills, but still for some reason it surprises me evertime that I see them. Right now I am overlooking the Hollywood Hills, not sure where the sign is, I havent seen it yet. I can also see the Melrose area from the surgery center.

I am easily amused. Yesturday while driving I saw a California Highway Patrol officer on a motercyle. I laughed out loud because he looked just like Erik Estrada on CHIPS. Showing my age with that refference.

LA traffic isn't as bad as I thought it might be. The biggest differece I see is that what we consider a safe distance between cars they see as an invetation to go in front of you. LA drivers will even wave in thanks for letting them in. Also, motorcycles are allowed to drive between cars if the cars are stopped, or on the highway nearly stopped. Freaks me out when they go zooming past me.

LAX is a freakin big airport! Glad there is a shuttle to and from the rental car/terminal. I would hate to have to find my own way.

Santa Monica

We went to Santa Monica on the coast on Tuesday. It was a beautiful sunny day in LA, but when we got to the coast it was cloudy, foggy and very cool. Litteraly about two miles from the shore the fog set it and stayed the entire four hours we were there. Withing five minutes of eastbound driving we were back into sunny skies and the temp was in the 80s. We did manage to play in the sand some and collect a couple of shells. We walked up and down the boardwalk and watched the ocean. Still it was discouraging that it was so foggy and cool. We ate lunch at Bubba Gumps Shrimp Shop overlooking the pier and the ocean.

After that we drove down Rodeo Drive and went to an appointment with the surgeon.

Last night we had a wonderful Korean dinner. Not sure what all we ate, but it was quite good. I will say that I believe that I have had my first (and last) taste of Kim Chee. Not to my liking. Then we went to a Korean bakery and bought some treats. Quite good, although i am not sure what kind of fruit was in the cake like thing.

surgery day

Robby just started his 8 to 10 hours of surgery. He wasn't nervous which is good, but he was annoyed that he wouldn't get to eat breakfast or lunch today.

His surgery is called a medpor ear reconstruction. What Dr. Reinisch will use is a type of plastic called medpor that is ear shaped. This is the same stuff they use in hip replacement. He will use what he can of Robbys little ear and take a skin graft from Robby's head and his belly if needed. Once the swelling is down in a few weeks, Robby will have a normal looking ear on his right side. This wont do anything to improve his hearing, it is just cosmetic.

Before the medpor surgery

I am trying to see if I can actually post pictures. This is a shot of Robby's ear as it is now.

may 2010

First an update. Robby is finishing kindegarten this June. He loves school. The BAHA (hearing aide) has been wonderful for him. Once he started wearing it, his speach really took off. He still has language issues related to his hearing loss and learning a whole new language. He tends to drop the ends of words (common among the hearing impaired) and doesn't use pronouns and prepositions very well. Over all he is right on target for kindegarten. He is a wiz at reading and math.
If you are reading this, you probably know that Robby is going to have ear reconstruction surgery this week. I will post more about the process on Wednesday, the actual surgery date. We (Robby and Becca) are flying to Los Angeles CA on Monday May 3 in order to have the surgery with Dr. John Reinish. I hope to be able to post pictures while we are there. I have a new camera, so I will have to see how it goes. A warning in advance, some of the pictures might be a bit graphic. I will try not to post any that are too bloody etc, but let the squimish beware.

Perfect hearing!!! Praise God!!!

Robby had his hearing test today, now that he's had his BAHA a month, and tests out with perfectly normal hearing at all pitches! What an answer to prayer!!

Amazing what Robby can hear

Robby has had the surgery now for two weeks, and we've noticed that he's able to hear things that he never noticed before.  He walked by the dishwasher while it was running the other day, and cocked his head, listened, then excitedly pointed and said, "Mommy, water, water!"  So far, the list of sounds he's hearing for the first time include: toilets flushing, toilets filling, dishwasher running, whispers, rain, milk sloshing inside a shaken coconut, the sound Hot Wheels make on a track, cats growling, the sounds of several toys, and many more.  His world is full of sounds he's never heard before, and that will only improve as he gets the plugs and packing out of his ear.

 

This has been a humbling, overwhelming and exciting time, and my heart is full.  The work that the Let Them Hear Foundation and the California Ear Institute does is truly remarkable, and my son has received a gift he can never repay.

Home again

We made it home Wednesday with no problems. I want to give a special thanks here to Northwest Airlines. They have a special program where people can donate their unused air miles, NW then matches the miles and gives tickets to families traveling for medically necessary reasons. They will give the child and a parent free tickets, no fees attached. They even sent Robby a teddy bear and a letter with their 'best wishes'. This was a great help to us in flying to California. If you have any unused miles, consider donating them to this worthwhile program.

Rachael and Robby were so happy to see each other again! They love to play together. Robby was also ready to go back to school. Thursday morning right after he got up, he asked to go to school. Then everyday since he has asked to go...finally this morning was a school morning and he was very happy to go.

He continues to heal. His leg is still pink, but it is covered with skin and no longer seeping. His ear does not bother him and we continue to notice better hearing. He will get his 'plug' removed on Monday and the rest of the packing removed 1-2 weeks after that. With each step we should notice better hearing.

Dr. visit

We saw the doctor today. Robby was given a clean bill of health. His ear and his leg are both healing nicely. The doctor removed the bandage from Robby's leg; the one that was supposed to stay on two to three weeks, but had been peeling since Friday. He showed us how to take care of his skin graft. They also trimmed the plug in his ear and gave us a script for an eardrop antibiotic. We see our local ENT in one to two weeks to have the plug removed, then again a week later to have the rest of the packing removed. Overall every thing looked really good.

Rachael and Robby are really missing each other. Rachael calls on the phone and doesn't really want to talk to me, just Robby. She laughs as she talks and he grins really big. It is soo cute. Robby has asked several times a day about Rachael. They will be so happy to see each other Thursday. Mom will be happy to see Rachael too, I miss her....and Kay and Emily too.

More Photos

more info on the ear

What you are actually seeing in the picture of the post op ear is the new ear canal. Currently there is a plug in the ear, kind of like an ear plug you would use to reduce noise. Yeah, the red color is blood, but it is not seeping blood. The only time that happens is when he lays on it there tends to be a red spot on the pillow. There are also some stitches behind the ear. After a time of healing, the plug will come out. It seems not to bother Robby at all, it's almost like he doesn't know it is there.

If you look carefully at the picture of Robby sitting in the car on the day of surgery you can see part of his skin graft. It is on his right leg, high on his thigh.

He has had no Tylenol today, and is full of energy.

We took Dan and Rachael to the airport this afternoon and now are just kind of hanging around the hotel watching football, taking naps and playing with matchbox cars.

After Ear

Not for the squeamish, but it is what it is.

This is the surgery we traveled to California to achieve. Basically, they use a Dremel type tool to make a hole through the bone, and carefully separate some parts of the ear that I'm a little fuzzy about. Then, they use a skin graft from the thigh to form a ear canal, using the membrane to fashion an eardrum as well.

busy days

Sorry about the lack of updates, Dan and I thought the other one was taking care of the blog. Robby is doing really well. He occasionally complains about his hear hurting, especially in the morning. We figure he is bumping it at night. He is taking the occasional Tylenol, but no codeine.


Our biggest problem continues to be the bandage on his skin graft. It has started to peel away, something it shouldn't do for a couple more weeks. We are concerned about Robby getting an infection.

He is doing so well, that we are keeping busy siteseeing in San Fransico and the surrounding area. Friday we took a drive to Half Moon Bay and say the Pacific Ocean from the top of some high cliffs. We then drove back to the hotel through some beautiful mountains/woods.




Saturday we spent the day in the city. We ate lunch in Chinatown and walked around enjoying the feel of being in China again. Rachael even asked me if we were in China. :) We bought some Chinese snacks for Robby and then we then drove up to the hills surrounding the city for some beautiful views of the bay. It is absolutely beautiful here.

We have been able to meet with some of Dan's friends while we are here. It is nice for me to finally be able to put faces to names.

HEARING!!!!!

My son can hear better! Even with the packing in his ear and his head wrapped in a bandage Robby can hear me when I talk in a quiet voice. Before the surgery, he would not have heard the voice!



We are so excited. The fan in the bathroom automatically comes on with the light. Robby complained the fan was too loud. He said nothing about it before surgery.
He also seems to be pain free this morning. His biggest concern is still the bandage on his leg and the seeping blood.
More later, including pictures.

Surgery is over!

Robby's surgery went very well. The doctor said there were no major surprises and everything looked good. He was very pleased with how well every thing went. After surgery, when Robby woke up, he was not a happy camper, as is to be expected. He was very groggy for a while and was saying, "Mama ear owie". The nurse gave him Tylenol with Codiene and some apple juice, and in a few minutes he felt better. By two o'clock he was very hungry and ate a big bowl of wonton soup broth and a bunch of noodles. While being a bit more tired than normal, he is doing very well. We needed to make a quick trip to Wal-mart and he wanted to go instead of staying in bed.

Right now Robby has a big purple bandage around his head. His teddy bear has a matching bandage, which Robby thinks is really funny. They also had to take a skin graft from his thigh and used it to line the new ear canal. He has a clear bandage over the area (about 2 x3 inches). It is quite unpleasant to look at and has a small amount of blood seeping out. The blood getting on the sheets is concerning Robby quite a bit....more than the fact that his leg looks really nasty. :) I am amazed that the skin graft area does not bother either kid; they act like it is a normal "owie". The doctor said it is like a large scrape and will heal in the same manner.



Considering how well Robby was doing tonight we are hoping to be able to get a little bit of relaxation and vacation time in before Dan and Rachael fly back on Sunday. We will continue to update for the next several days. Dan is sound asleep right now; as you can imagine we are all fairly tired. When he wakes up he will post some pictures of Robby with his fancy new 'hat'....I have a feeling that 'waking up' will happen in the morning and not tonight (Thursday). By early Friday afternoon there should be pictures posted. Someday, I will have to figure out how to get pictures from the camera to the computer to the blog....sometimes not being a geek has its drawbacks :)

one drunk kid

We are here in California and Robby just went back to the surgery room. He was given verced (spelling?) to make him calm down. Actually, it affects the body like alchohol so he is acting fairly drunk right now. It is actually pretty funny. :) He should be in surgery for two to three hours and then a hour or so in recovery. The doctor said he will be out of it most of today, but by tomorrow afternoon he should be back to normal with some mild pain.

We had a change of plans thanks to our insurance. They have decided as a policy that children yonger than five don't need a bone achored hearing aid, so they won't cover the proceedure. What that means is that we will get him the same hearing aid in the next few weeks only it will be worn on a head band or attached to a baseball cap. Then in six months we will have the bone anchored one put in. Luckily that is a surgery that any qualified ENT can do, so we will have it done in Columbus. We think it is poetic justice that the insurance will have to pay for two surgeries and two hearing aid systems just because they wouldn't cover the one proceedure for six months. Some time I will blog about our insurance issues...it is a long story.

Today Robby is having the atresia repair, basically the building of an ear canal. Yesturday when they did a hearing test we got some exciting results. With a child of four, even one without language issues, they have trouble getting the full range of results; but we do now know that at least one ear/hearing nerve works at a 5 decible level. This is normal hearing!! It will be exciting to see what he can hear once the surgery is over. Dr. Roberson said that he should have improvent immediately, then as he heals and the packing comes out his hearing will increase. Exciting times for him.