Aug 2010 Update

Almost four years ago, I held a very scared little boy in my arms in China. He clung to me an trusted me unconditionally that I would take care of him. He had spent the first two years of his precious life in an orphanage with his hearing completely unaided with his caregivers assuming he would never speak. After just a few days, he shared hugs and smiles with us and quickly loved us as much as we loved him. As he fell asleep in my arms, my promise to him was that I would do everything in my power to help him attend a mainstream Kindergarten program on time. At his IEP meeting in the spring, his teachers and speech therapist all said they expect him to be a very successful Kindergartener, and today, Jack started Kindergarten at the same school all our other kids have been attending. It has been a long road to get here and I am sure we have challenges ahead, but Jack is doing really well and I am beyond proud of him! Those days in China seem almost a lifetime ago!

A quick update: Jack will still need once a week speech therapy at the local public school. He has mild to moderate hearing loss (hearing at 20-40dB unaided) so benefits from wearing his BAHA on the softband. We are considering having the BAHA implant - maybe next year? I think Jack benefits tremendously from his canalplasty that has given him much improved directionality to his hearing. He functions well without his BAHA, but we feel his speech is much better when he wears it. The school district has provided an FM system for the classroom, which I think will work well for him this year. Everyone who is involved in his education and therapy has been tremendously helpful and seems to sincerely care about him and his future (which I believe is bright!).

Here are some pictures of the first day of school - my how they grow!

Happy New Year

Jack is doing great. His ears are healing nicely. The new skin graft is wrinkling a bit like in the past, but it is our hope that the ear projection will stay just as it is right now. The two ears match pretty well and the ear canal on the left ear looks much bigger.

I have to share this story... Last week, Jack came in and was talking to me about his ears. He was telling me that his ear does not bend any more on the top (where the medpor is), but that it does bend down on the ear lobe. He was telling me very factually, like he was just informing me. He wasn't upset about it or anything. So, I told him that it was just a little while ago that he didn't have any ears and that Dr. Roberson and Dr. Reinisch did the surgery so that he could have his big ears. He looked at me like I was completely crazy! It was very cute. He has absolutely no recollection of having microtia or what his ears were like before all of this. I thought that was kind of amazing.

Here are some pics from today:








Happy New Year!

Recovery

A quick update...

Here are some pics before surgery. They were taken the morning of the surgery. It always seems that Jack's ears are a little puffy in the morning, so the definition of his ears is not as good as it usually is. I didn't think about that before I took the pics.


















Then, here is a picture of Jack watching "Cars" on Dr. Novak's (the anesthesiologist) ipod while in pre-op.

















Dr. Novak has a 3 year old himself and was very compassionate. We also saw Dr. Champeau (Jack's anesthesiologist from surgery 1 and 2) in the pre-op room and he remembered Jack. He was there to take care of the other little boy. I have just loved all the people at the surgery center. They are all very caring.

So, the surgery went well. Dr. Roberson adjusted the ear drum on the right ear. It seems that Jack had some scar tissue in his left ear canal and once Dr. Roberson removed that, the canal opened up nicely. Dr. Reinisch added some skin behind the left ear, but did not move the ear up as we thought might be needed. Dr. Reinisch also removed two scars from Jack's scalp (they were from the cups that we used to protect the ears after the first surgery on each ear). Dr. Roberson was very optimistic that this would do the trick. We are very hopeful for less skin shrinkage this time around.

After surgery, Jack was not very happy about the bandage on his head. When I put him in the car, he told me he had to have it off because he could not hear his DVD player well enough. I thought that was kind of funny that my child who could hardly hear a thing a few short years ago was complaining about the bandages affecting his hearing....



















Jack is recovering very quickly from this surgery. He is running around like a crazy boy and we are continually telling him to slow down. He had a little more pain this time because Dr. Reinisch did not use the pain pump on the skin graft site, but we just gave him Tylenol with coedine a few times and that seemed to make it all better.

I just sent some pics to Dr. Roberson and Dr. Reinisch. The plug has fallen out of Jack's right ear and the left is oozing a little bit of blood. Both Dr's emailed back right away and Dr. Roberson indicates that we need to put a plug back in, so we will need to pay a visit to Palo Alto tomorrow or Thursday. Dr. Reinisch says the sponge looks good.

Here are the pics I sent the docs:

Long Overdue Update

I know it has been ages since I have updated this blog. I have thought about it often and I know many have requested and update and current pictures. I will add other pictures perhaps tomorrow. I won't go into great detail about why I haven't updated, but suffice it to say that I have been a little occupied elsewhere...

So, to give an update on little Jack...

He has started school this year with the older kids (thus his school picture). He is in a mainstream transitional kindergarten program (TK) that is designed for kids that turn 5 in the fall to give them something a little more than preschool when they are not old enough for Kindergarten. I love Jack's teacher and she has been absolutely awesome. Really, the whole school has embraced Jack. The only "complaint" I would have is that many people (especially kids) give Jack a little too much attention and tolerance for his mischief and orneriness!

As far as his speech... Jack attended a great communication preschool program through the school district along with his traditional montessori preschool program last year. He also received one-on-one pull out speech therapy about 3 times per week. All of this made a big difference in his speech. Most people can understand him just fine now. He does have some lingering issues, such as leaving off ending consonents and some specific consonents (like l at the beginning of words) and consonent blends (like th) that are still difficult for him to use correctly on a regular basis. He is very "coachable" and watches so carefully to see how to make the sound and can almost always get it right when giving it the proper attention. Getting it right all the time when he talks is not quite there yet. So, in addition to his TK program this year, he also attends speech therapy through the school district once a week. His current speech therapist (who is really great) showed me the response difference when she asked him questions while allowing him to see her lips and when sheilding them - wow. He has become quite a proficient lip-reader and is definitely lip-reading to supplement his hearing!

On to hearing... We struggled this year to get what I felt was an accurate hearing test. Jack is a challenge to test right now (as I am sure many kids are at this age) and it takes two good audiologists to get an accurate result. He just starts messing around too much and they have to be pretty inventive to keep him on his toes and interested. Once we got an accurate result, we knew that his hearing has declined slightly. He is in the 35-40dB range pretty much across the board. This is okay, but not great. As a result, Jack has been wearing his BAHA to supplement his hearing while at school. It took him a while to be amenable to wearing it again, but once he got used to it again, I think he likes being able to hear better. He will also be fitted with an FM system in the classroom after the first of the year.

Very funny though - one day I was talking to him and he wasn't answering my question. He was wearing his BAHA and I asked if he had the volume turned up. He replied very flatly, "no." I asked why and he simply told me, "because I wanted it quiet." Now, I have to say it would be nice to have that luxury once in a while!

Once we knew that his hearing was down a little, Dr. Roberson recommended doing a CT scan to see if there was something else going on. With that information and further examining his ears, we know that the ear drum on Jack's right ear has pulled away from the middle ear bones slightly and the left ear drum has some thickening due to a sort of chronic infection. It is believed that the infection in the left ear is related to the skin graft shrinkage behind the ear which has pulled the ear in to Jack's head and pinches off the canal somewhat. This causes fluid to get trapped inhis canal, which then gets infected. Once we had all that information, it became clear that it would benefit Jack to have surgery to correct these issues, improve his hearing and reduce the infections.

So that all brings me to where I am now... waiting for Jack to come out of surgery. Dr. Roberson and Dr. Reinisch are here in Palo Alto operating on another little boy and are doing Jack's revision surgery today also. This is great for us because we don't have to have two separate surgeries. Both Dr. Reinisch and Dr. Roberson have been very felxible and caring as we continue on our journey.

I will post an update after the surgery - maybe tomorrow.

Handsome Boy update!

First, I should apologize for everyone who looks at the blog waiting for an update... I have struggled to get back to this regularly. I will try to make up for some lost time here with a good update and Jack's recent portraits...

So, here is the handsome guy in his recent pictures from school. I think these are the best pictures of Jack and was so tickled when I saw them that I bought the whole entire package!























Okay, now for an update on what has happened since the last post. Overall, Jack recovered easily from the surgery. This was definitely easier than the first two surgeries. He was basically back to preschool within two weeks and I was not worried about him. The patch of skin on his left ear that was wrinkled and replaced has healed nicely. It is still a bit discolored, but it looks like it will be a big improvement.

Here is a picture of Jack from Dec 31, 2008:

You can see that he quickly healed and the projection of the left ear had already reduced...
















Next I will attach some pictures of Jack's ears from tonight:



















As far as the projection of his ears, it appears as though the skin grafts have shrunk again behind his left ear (even though this graft was a full thickness graft taken from him tummy and was less likely to shrink). This has pulled his left ear into his head almost back to where it was prior to this surgery. I believe that the projection on the right ear is actually a little better and the wrinkling behind his ear is slightly improved. It will still take some time for this to heal and soften.

It is my belief that this shrinkage is really just how Jack heals. Some people are just more prone to this problem and unfotunately, Jack happens to be one of them. I don't think it would have mattered what surgery approach we chose, we would have encountered this problem.

We met with Dr. Roberson and Dr. Rienisch early in March (on a Sunday evening prior to their joint surgery day in Palo Alto). It was so kind of them to see Jack on a Sunday evening which helped us avoid another weekday trip to Palo Alto and waiting for them to be able to see him around the surgery times...

First, Jack has had a persistent ear infection/cough thing that started with an allergy/cold problem that has been going on for a while. In late January, Dr. Roberson gave us amoxicillan that knocked it back a bit, but did not get rid of it. He gave us Augmentin and that has completely cleared Jack up. His cough is gone, his appetite is back and his nose is no longer congested. I am hoping we can stay ahead of the allergies next time they strike and treat them before it winds up in an infection again...

Next, we discussed the narrowing of Jack's left ear canal. Dr. Reinisch believes that it may be partly due to the implant shifting downward a little a pinching off the ear canal. I could see when he pushed the implant up slightly that the canal indeed opened up a bit. The rigid plug that we were using before definitely opened the canal. However, Dr. Reinisch is concerned with the rigid plug injuring the medpor implant. We agreed to try to soften the skin and potential scarring by using a steroid ointment and a soft sponge like plug. The plug is like an expandable sponge. I dip it in some ointment and place it in Jack's ear canal as far as I can. We have been doing this nightly for about 11 days. I think it has opened the canal slightly. I emailed the doctors tonight to determine next steps. I will post again as soon as I can.

Meanwhile, Jack is still in his speech preschool and is also getting one on one speech therapy once a week for about 45 min. I am thrilled to report that his drooling is nearly gone. This is a really big deal for Jack as I believe the social stigma of his lack of control over his saliva was beginning to cause problems for him. In addition, his speech continues to improve. His brain gets ahead of his speech skills quite often and he really needs to slow down and complete all the sounds in a word sometimes, but overall, he is still making great progress. I attribute this to his speech preschool and the therapist that his helping him privately.

I think that is a pretty good update for recent events. I am hoping that things calm down a bit at work and I can post more frequently. I will close with a photo of all the kids being goofy:

Surgery 3 - 1 week post op

Today is one week post op. I removed the pain pump last Friday (not as bad as I expected), and then the sponge on the outside of Jack's left ear on Sunday. Here is a picture of his ear after the top sponge was removed last Sunday:















It was good to remove just a few stitches so that I could be prepared for today. This evening we removed the rest of the stitches and the sponges. Jack did pretty well through it all and didn't cry. Of course, there was plenty of sugary bribery involved...

I am behind at home, behind at work and just generally behind in everything. It will be a miracle if anyone sees a Christmas card from us... So, a short post here and some pics of the sponge removal...























And, last but not least... Can you say ornery?????

Surgery 3 went well

This morning, we arrived at the surgery center at 7:15 am this morning. Jack was a trooper. He really only asked a few times for something to eat and really was very patient. I think at about 9, they took us back. Probably the hardest part was that Jack didn't want to wear the yellow jammies they had planned for him. It wasn't until the Versaid kicked in that he finally got over the yellow jammies. Soon after that, they took him back for surgery.

They called several times to update us in the waiting room, which was very nice. It sounded like they started about 10:45am and then Dr. Reinisch came out at about 2pm. He said that he replaced the skin grafts behind both ears, replaced the puckered skin on the front of the left ear, removed the hair, fixed the scar (from the cup after the first surgery) on his scalp on the right side, and adjusted his earlobes and the tragus on each ear. He placed a wick in the left ear and we debated what to use to keep the canal open. Dr. Reinisch is not crazy about having the hard plug in there - he is a little concerned with it rubbing and exposing the medpor. I will follow up with Dr. Roberson on this...

It took a while for Jack to wake up. His ears are very swollen. They pretty much look like they did after the bug bite this summer. He has sponges behind the ears to support them and one sponge on top of his left ear when the new skin is. Once he started to perk up, he began eating. And eating. And eating. He really ate like a teenager, pretty much until he went to bed. He was kind of upset to notice himself in the mirror and touched his ears and then frowned really sour. He was not pleased with his appearance. Other than being al ittle wobbly and not happy with the sponges behind his ears, he was actually in great spriits. He watched a few movies - while he ate - and then went to sleep at about 8pm.

We have an appointment to see Dr. reinisch at 9:30am and then will head back home. I will drop Trish off on the way and should be back home before bed time tomorrow night. When we get home tomorrow, I will post pictures.