24 Hour Followup

As of 4:00PM today, we are all home.

After I picked up Jonathan from school this morning, we went down to Children's to visit and ended up staying the balance of Ethan's stay.

The bandages were removed this morning so the doctor could check everything out. They were very pleased with how things looked.

There is a discoloration of the iris where the dermoid used to be. It appears as an area of opaqueness. From a distance it is not noticeable but closer up, you can definitely see it. Apparently this is not so much the result of the what may still be left of the dermoid (in fact, there is very little left of the dermoid - you would probably need a microscope to see what cellular material may be left) but more a function of the way the dermoid formed and affected the layers of collagen that comprise the cornea. Hence, this opaqueness will never go away or get lighter. Still, it is a marked improvement over how it looked before the dermoid excision.

At our request, the doctor put the bandages back on and we will leave them on for another 24 hours and remove them ourselves sometime tomorrow. This is primarily due to my paranoia about letting the surgical site heal without any disturbance from Ethan rubbing the area. (The upper most layer of the cornea (I believe it is the corneal epithelium) regenerates within 24 hours and this is why I wanted to have the bandages put back on just to be on the safe side).

The part of the sclera where the dermoid was (the white part of the eye) is pretty bloodshot at the moment due to the surgery. This will subside in about 2 weeks.

We will have a followup with ophthalmology in one month. This will more or less coincide with our next visit with Nutrition and at that point we believe the decision will be made to leave or remove the G-Tube.

On another note, the anesthesiologist who presided over Ethan's surgery came to talk to Dina today on his day off because he felt it was important to explain what had happened during intibation. The intibation itself actually took about an hour and he had to call in two other anesthesiologists to assist. A scope was placed in through Ethan's nose in order for the doctors to see better and then a tube was also placed through his nose this time to intibate. The anesthesiologist drew Dina a picture of what he saw once they could see in his throat. The vocal chords form a triangular shape and all three sides should be visible. This was not the case in Ethan. Only two sides were visible. The other side was obstructed by extra throat tissue. Once the anesthesiologists had gotten the tube in his throat, the excess tissue kept closing up onto the tube causing the whole intibation process to stop. Once the tissue opened up again, the doctors were able to continue with the initibation. This is what made the process so long. The anesthesiologist felt that Ethan's intibation should have been easier than the intibation in June because he is bigger, but that turned out not to be the case. He warned us that we need to tell any anesthesiologists of Ethan's difficult intibations should he need any further surgery at another hospital in the future. The anesthesiologist also feels that the next intibation Ethan has in 5-7 years should be easier.

It is just speculation at this point, but the extra throat tissue could be causing some of Ethan's breathing and/or swallowing difficulties. The anesthesiologist is going to talk to Ethan's main Craniofacial doctor and his Ear, Nose, and Throat doctor about what he observed during the surgery.

- bob

Surgery Day (III)

Ethan's surgery to remove the epibulbar dermoid was today. According to the ophthalmologist, all went well and there were no surprises during the procedure. The entire procedure was scheduled for 45 minutes. This includes time to sedate, intubate, and the actual procedure itself. It actually took over 2 hours (over 3 hours if you include the fact that they were running about 1 hour behind schedule). Apparently it took 1.5 hours just to intubate him. The anesthesiologist has yet to talk to Dina to discuss what issues/problems they had (I am staying at home with Jonathan and Dina spent the night with Ethan during his sleep study last night and will be staying overnight at Children's with Ethan tonight).

It's a good thing that this is most likely the last surgery for a few (several?) years (when they will address the jaw) as each successive surgery seems to come with more and more issues during intubation.

The ophthalmologist says that it looks much better now that the dermoid has been removed but we won't see the results for ourselves until sometime tomorrow when the bandages will be removed.

We won't know the results of the sleep study for quite some time (possibly up to 2 weeks or more) but it seems that they got a good study (i.e. enough good quality data) and that we won't have to come back and repeat it.

Ethan back in the room after surgery.

Ethan will all the sensors strapped to him for the sleep study.

- bob

The On Again Off Again Sleep Study

Is now on again. However, it will be done the night before Ethan's surgery at the Bellevue location. So this means the morning after the sleep study, it's (a hopefully quick) checkout and then get to the Seattle location to check in for surgery. Could possibly make for a hectic day.

- bob

Sleep Study Is A No Go

It appears that they cannot schedule the sleep study for the night before the surgery. This is kind of annoying as it means two separate over night stays at Children's. Since the sleep study is not of high importance, we'll schedule it for some time when we feel it's convenient.

- bob

A Busy Weekend

We spent the weekend in Oregon for Karvin and Lauren's wedding. Karvin is one of my old high school friends who relocated to Portland only a few years after I moved down to Seattle. The wedding was in Hood River which was about 1.5 hours out of Portland (depending on traffic, weather, etc.). The wedding was Sunday and we arrived (very late) Saturday night.

The drive down was one of the most harrowing drives we have ever made. Given that it was pouring down rain, it was very late (i.e. dark), we were totally unfamiliar with the road, and the lane markers on the road were almost non-existent - it made for a very tense drive down.

The wedding was to be outdoors but it was raining off and on all day on Sunday. The decision was made to try to have the wedding outdoors during one of the few rain breaks. They timed it just right (!) - literally immediately following the ceremony, it became pouring down rain. The following reception was indoors.

I had an opportunity to reunite with a few other old high school friends and catch up. We had kept in touch (loosely) over the years but it had been quite a while since I'd seen them (8-9 years for one in particular!).

The next day, on our drive home, we stopped by Montnomah falls. Looking at the trail map, it claimed that the hike to the summit of the falls was only about 1 mile. On a spontaneous whim, we decided to do it. Dina strapped Ethan to her and carried him while I held Jonathan's hand on the hike. What we didn't know was how steep the hike was - it was pretty much 1 mile straight up (and subsequently 1 mile straight down). Amazingly - Jonathan walked the entire hike! Only near the end of the downhill hike did he start to complain that he was tired and couldn't walk anymore (could you blame him?). We told him he could pick out any two of anything at the gift shop if he walked the whole way. Bribery always works; Jonathan completed the hike and was promptly rewarded with two toy trucks he picked out at the gift shop.

We stopped off at Karvin and Lauren's house to visit for a bit before continuing on our way home (they had left Hood River a little before we did). Karvin's parents were staying with them during their visit. Karvin's mother was very taken with Ethan!

Karvin and Lauren on their special day (9/19/10).

The happy couple!

The other happy couple!

Me and two of my old high school friends (Sam on the left, Ahmed on the right). Actually, Sam is an old junior high friend.

Me, Karvin, and Ahmed.

Montnomah Falls. The hiking trail starts at the base, goes up to the bridge (which is a very easy hike) and then from there, goes up to the summit.

At the observation deck at the summit.

The view just before the precipice.

The precipice...

Ethan and Karvin's mother.

- bob

Jonathan's First Swim Lesson

I had put Jonathan on 3 wait lists at the Moutlake Terrace Pool for their Puddle Jumpers class and they called this morning to inform me that they had a spot open for a class that started Monday night. We took it. Once you get into lessons at MLT, I have been told you get early registration for upcoming sessions which is a big advantage considering it is really hard to get in. I have friends who wait listed several times and gave up.

When we go to the pool, Jonathan wanted to swim with daddy. This Puddle Jumper class is for 34 months to 3 years and it is a transition class where half of the classes are with parents in the water and half are child instructor alone. Considering that Jonathan has not been in the pool much, we thought this would be a good starter class for him.

The class was split into two sides, four on each side. The kids worked on front and back float on a floatie tube, blowing bubbles, jumping in the water, retrieving a toy in front of them, and sang a song. Bob was really surprised how much the instructors worked the kids on the first day, especially considering this class is for beginners with little or no experience in the water.

Overall, Jonathan did a great job. He didn't care much for backfloating, but liked everything else and after he was done, he asked for a pizza for dinner. I think he relates pizza and the pool since he got pizza after swimming on Ethan's birthday.

-Dina

Surgery Date Set

Ethan's surgery to remove the epibulbar dermoid will be Sept. 29, 2010. If they can coordinate this, he will be admitted on the 28th for the sleep study. Most likely he will come home the morning of the 30th.

- bob

Jonathan's First Full Day of Preschool

Jonathan had his first full day of preschool without mommy and daddy today. We knew he would do just fine and we had been telling him that when he went today, we would say goodbye to him and we were going to leave. When the time came to say goodbye, he didn't cry, but he did seem a little apprehensive and asked me to come with him. Teacher Kerri came and got him and let him into the room, showed him where to hang up his coat, and got him started on an activity. Of course he chose to play in the center with the cars.

An Unscheduled Children's Visit

Ethan went in for a quick evaluation at Children's on Wed (9/8/10). Ethan's breathing has become noisier lately and we decided to have it checked out.

In short, they don't really know why his breathing has changed. They suspect that his mandibular hypoplasia has something to do with it but the doctor is not overly concerned with how his breathing sounds right now; it is an issue worth investigating but nothing to be overly worried about.

They will schedule another swallow study (recall one was done back in September) and try to coordinate a sleep study with his upcoming epibulbar dermoid removal surgery (if they can coordinate this, it means one two night stay as opposed to two one night stays).

The swallow study is more to examine why Ethan has trouble swallowing 'real' food (as opposed to the Gerber stuff). Ethan can currently eat/swallow bits of banana, avocado, and chopped up baby sausages - but they all have to be chopped up into very small/fine pieces. However, his doctor after today's visit thinks that the breathing and eating are all interrelated with the mandibular hypoplasia. A swallow study may be helpful in identifying why he has difficulty eating/swallowing larger pieces of food.

The sleep study is to simply get more information (which may not be actionable). The doctor already said that he suspects the sleep study will come back abnormal but not 'horrible'. Which translates into 'do nothing'. They simply want to rule out the 'anything horrible' possibility. In unlikely event that 'horrible' will appear in the sleep study results, then they will put early jaw surgery back on the table as an option.

- bob

Meet the Teacher Day

Jonathan went to "Meet the Teacher" day yesterday at his preschool, City Kids at the City Church. Bob, Ethan, and I also got to attend with him on this first day, which was only for an hour. He met Teacher Kerri and Teacher Enessa. Jonathan also got to decorate a school bag, which he will use all year, he played at the car station, the letter station, took a family picture, and participated in circle time where the kids learned three songs. At the letter station, he even showed Teacher Kerri that he knows his letters and sounds. At the end of the hour, he didn't want to leave, so I think he will do very well. Tomorrow is the first full day of preschool. He will attend three days a week for 2.5 hours a day.

-Dina

Teacher Kerri

Teacher Enessa

My favorite picture of the day. He was having tons of fun!

This will be his school bag for the year.

Of course he had to play with the cars. What's he going to do on the days when the cars are not out for centers?

Teacher Kerri asked him to find the J. He did it and told her what sound it makes ;)

Already making friends.

Circle time. Not sure what everyone was looking at.

The classroom looking from one side.

Looking from the other side.

Japanese Memorial Wall Dedication

Earlier this year, I received a letter in the mail from the NVC Foundation (Nisei Veterans Committee) about a memorial wall that was being built for Japanese war veterans and those interned during WWII. I immediately knew that I had to get bricks for both my Takizawa grandparents (my dad's family took care of a brick for my other grandfather). It became very passionate about it. I contacted my mom and all of her siblings to see if they wanted to contribute towards that cost and they all did.

My mom and I had the opportunity to place my grandparent's bricks on the wall a couple of weeks ago. My dad placed his father's brick on the wall a weekprior to that. Unfortunately, we weren't able to place teh bricks side by side because the all is divided into two sections-one side is for war vets and the other side is for internees. My grandfather's bricks are only one row apart vertically and for rows apart horizontally though. I placed my granmother's brick in a row with some of her friends. I am so glad that I was able to go down and place the bricks because they are in really good apots at eye level. The bricks that the NVC Foundation staff were asked to place by families were placed on the wall on either the edgers or on high or low places on the wall.

Bob, my dad, Ethan, and I all went down to the NVC Foundation Japanese Memorial Wall dedication on Sunday. They had 1400 ticket requests and only 700 seats, so a lot of people were standing. There were taiko drummers, speakers, and music. It was supposed to rain, but the sun came out and shined down on the ceremony. It was really nice and I am so glad that I was able to attend. Jim McDermott and Mike Lowry were teh key note speakers. After the ceremony, we got to go and make rubbings of the bricks.

I am so happy that we got to honor my grandparents in this way. Thanks to my mom, Auntie Marie and Uncle Brian, Auntie Martha and Uncle John, and Uncle Mark and Shannon for donating with me to get Grandma and Grandpa's names placed on the wall and honoring them.

-Dina

The last time the bricks would be together.

I have a Vanna White pose, but I was trying to show both Grandpas.

Jim McDermott

Mike Lowry

Both grandfather's bricks are in this picture. One grandfather is at eye level and the other is one to the right and four rows down.