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.

surgery this week

Robby is scheduled for surgery this Thursday, Nov 1. He will be having two processes done. On his right side he will have an ear canal built to allow sound into his inner ear. Since his left ear is so bad, building a canal on that side would be useless, instead he will have a bone anchored hearing aid implanted (BAHA). Actually what is implanted is the plate that the hearing aid attaches to. We are having this done by Dr. Joseph Roberson at the California Ear Institute in Palo Alto California. You may wonder why so far away (We are in Ohio). Dr. Roberson is world renowned as one of the best in this field. There are few Drs who really know what they are doing and have had experience doing it. Atresia repair (the building of a canal) is a tricky surgery and you really want someone experienced. If you would like to read more about the surgery go to www.atresiarepair.com Other sites of interest would be caear.com and letthemhear.org These sites are all associated with Dr. Roberson and contain good information.
Dan, Becca, Rachael and Robby will all be flying out on Oct. 31. Dan and Rae are coming home on the 4th and Becca and Robby will return on the 7th. Dan just couldn't take anymore time off from his new job since he just started Oct. 15! Robby has to be there for a week after to surgery to allow for the initial post-op visits (two-four). He will then have to see our local ENT for further follow-up. We are planing on posting from CA and will let everyone know how the surgery goes.

updates

Wow, life is crazy with two active preschoolers. I thought I would post an update of some of the latest news.
Robby is doing really well in preschool and loves going. He still does not talk to the other kids or interact with them yet, but he follows the routines and loves to go.
Rachael has quite bitting him, for which Robby is thankful. She still lashes out and smacks him occasionally or pinches his cheek, but no bites. Robby is starting to get back at her and occasionally pushes or smacks her in return.
Robby now has an IEP with Westerville City Schools. He qualifies for special education help in the area of speech/communication....go figure :) He will meet with s/n preschool teacher for 1/2 hour a week and with a speech teacher for 1/2 hour a week. This is good news. It will not only give him extra help now, but he will be in the system when kindergarten starts.
Robby language is amazing; he is putting together 3-4 word sentences and will try to repeat most things when asked. Articulation is a big problem...He often says things that I have no idea what he is saying. Sometimes context helps, other times I never figure it out.
His favorite activity is riding his bike and scooter and just being outdoors.

Our tickets went missing today, and we couldn't find them... still can't. After a frantic two hour search behind book-cases and the refrigerator, and tearing things apart, we called Northwest Airlines, dreading the discussion. I'll cut to the chase and eliminate the tension. Although the tickets we'd received looked like paper tickets, they were just receipts for e-tickets. So, our discussion with Northwest was some of the best news I'd received in awhile. I could have done without that stress, but I'm glad we got the tickets all straightened out, and really glad they're e-tickets.

Remember this post?

Sunday, July 1

Lost tickets

Our tickets went missing today, and we couldn't find them... still can't. After a frantic two hour search behind book-cases and the refrigerator, and tearing things apart, we called Northwest Airlines, dreading the discussion. I'll cut to the chase and eliminate the tension. Although the tickets we'd received looked like paper tickets, they were just receipts for e-tickets. So, our discussion with Northwest was some of the best news I'd received in awhile. I could have done without that stress, but I'm glad we got the tickets all straightened out, and really glad they're e-tickets.

===================================================================

Well our lost 'tickets' finally (!!) surfaced today. Of all the places we looked, and all the things we have done since returning, we found the 'tickets' in a place we use everyday. They were in the bread drawer. Now before you get visions of old moldy bread just sitting in a drawer for three months, let me explain our bread drawer. Not only does it hold our bread, which is a staple in a family of six, it also holds our aprons (which we rarely use). Therein lies the mystery of the tickets. Today a glass of milk got spilled in the drawer (Don't ask, it is just life with two preschoolers). Of course I had to empty everything out, including the aprons which had milk on them. Lo and behold, there was the envelope from the travel agency. How it ever wound up in the bread drawer under a stack of apron, I have no idea.

Preschool

Robby finished his second week of preschool yesterday. He is attending "Praise Express Preschool" at our church. He attends Mon. Tues. and Wen. and absolutely loves it! In fact, last Thursday he was putting on his shoes and said "school". When I told him there was no school that day, he got mad and threw his shoes across the room. Every day when I pick him up he is full of grins. Tuesday he was the 'helper' and was able to bring something to share. I sent in the photo album that we had sent him in China. I thought he might talk about the pictures since he loves the album. Mrs T, his teacher, said he did a great job and named everyone in the pictures. He also did the counting and other helper duties. This is really great since he has not been talking at school. In fact one of the kids asked me on Monday if Robby could talk. I told him Robby didn't talk much because he had only been learning English for two months, while the child had four years to learn English. He said that made sense. Robby doesn't participate much in the circle time activities (books etc), most likely because he doesn't understand what is being said. He does play and do the art etc.

7 and 0

No that is not the score of a game, nor a team's record. Seven and Zero are the results of Robby's CT Scan. The Doctor rates each ear on a scale of 1-10 in order to determine whether or not surgery to open the ear canal is a viable option. He looks at a lot of different factors regarding the formation of the inner ear. Obviously Robby's ears are vastly different. His right ear rates a 7, meaning he is a good candidate for surgery and the canal repair should improve his hearing, possibly to near normal levels. His right ear rated a zero, as the doctor's assistant told us his inner ear on the left is "abysmal": the bones are fused together etc.
What this all means is that Robby will have surgery to open his right ear canal and will have a BAHA hearing aid implanted on his left side. This is a 'bone anchored hearing aid'. As soon as we find a good site that describes the BAHA we will post a link. The nice thing about the BAHA is that even though it is on his left side, because it conducts sound through the bone, it will help the hearing in his right ear as well.
Robby's surgery is scheduled for November 1, 2007 in Palo Alto, California. Dr. Roberson will be performing the surgery. Robby will have the atresia surgery (canal opening) and the BAHA surgery at the same time. We will stay in Palo Alto for a week so Robby can have follow up visits. We will provide more details as we get closer to the date.