Merry Christmas!

Merry Christmas to everyone!

This is the first Christmas where Jonathan *really* gets it. Since even before Thanksgiving, Jonathan has been asking about presents, and Santa, and decorating the tree, etc. It's been a really fun time!

Our little tree on the dining room table - it's Ethan-proof. It will be another year or two before we can put up the big tree.

Ethan really likes plushies!

Jonathan and his new Caillou toys.

Ethan opening what Santa brought.

The boys going at it.

The boys both got - and LOVED their pillow pets!

Getting exactly what you asked for - priceless.

Captured for posterity - the cornucopia of commercialism and capitalism that is (now become) Christmas.

- bob

Jonathan's Thanksgiving and Christmas Programs

Jonathan had his first performing experience at his preschool in their Thanksgiving program. His class dressed up like pilgrims. They came on stage and gathered as a class. Then all the parents got to come up and take pictures of their kiddos. They were SO cute.

Then once they came off the stage, they paraded around the room in a boat all together.

Once all the classes got their chance to parade around the room, all the classes came back and sang some songs. Jonathan was a little upset by this time and his teacher asked us to come and be with him while he sang the songs. He was able to calm down and do a great job singing. His favorite song was "Hello Mr. Turkey, how are you? Gobble, gobble, gobble, gobble." Jonathan had come home several times practicing this song and he sure did a wonderful job doing all the motions too. We were so proud of him. Not bad for his first time performing for a crowd!

This was his placemat on the table. The school, 2 years old to Kindergarten, all helped in preparing the meal. It was stone soup, butter, pumpkin bread, and a fruit salad. Jonathan's class made the pumpkin bread and butter. He also brought in some oranges for the fruit salad. The meal was very yummy. This is one of the most popular events that the City Church Preschool hosts from what we understand.

In mid December, Jonathan's school put on a Christmas program. Each class came out and sang some songs and recited a poem or scripture. Each class also prepared a slide show of the kids in their classroom doing things. There was also a school wide slideshow before the program started.

Here are the 3 classes in Jonathan's age group. Here they are singing their songs.

After each class had done their part, all the classes came back on stage to do a school wide song.

Jonathan did such a wonderful job in his Christmas program. He sang all the songs and did all the motions, mostly with a smile on his face. He really looked like he was enjoying himself. We are so proud of him! We were not sure how he would do considering he wasn't very happy during his Thanksgiving program, but he didn't have any tears and really looked like he had fun. Way to go Jonathan! We are SOOO proud of you!

-Dina

Saying Goodbye To Sylvia

Sylvia, better known as Princess to those she adopted, passed away lying down with me today late this afternoon. She was nearing 21 years old (nearing 100 in cat years).

She had been having some difficulties in the last year or two with going outside the litterbox but we more or less had it under control with putting her on Prozac. However, within the last week, she took a dramatic turn for the worse becoming extremely lethargic, not eating, and taking to actually sleeping in her litterbox. We took her to the vet and found her kidneys were shutting down. The vet tried saline/potassium infusions but it didn't help much, and in fact she had another one this morning.

We (the family) were supposed to go to the church Progressive Dinner (an annual Christmas tradition at the church) tonight but as fate would have it, I came down with either food poisoning or some variant of the Norwalk virus. I stayed at home while Dina went with the kids. Not having a good feeling about Sylvia, we put her on the bed with me. I guess I can take some comfort in the knowledge that when she went, she went in her own time (e.g. we didn't have to put her down), at home, and next to me (since 2004, she has actually become *my* cat though she was originally Dina's).

Goodbye Princess. We love you and we miss you.

Sylvia
Feb 1990 - Dec 2010

You were a true and faithful companion

- b

Rest In Peace Sweet Princess

Our cat Sylvia passed away this evening. We lovingly called her Princess because she was after all our little spoiled princess. I would like to think that Sylvia would say that she had a great life with us. We loved her. I met Sylvia 10 or 11 years ago when I moved in with a lady named Susan whom I found when both of us were working at Microsoft. Sylvia was one of two cats in Susan's household, but one day, she came walking into my room and "chose" me over Susan at that point. I felt pretty special that she would pick me. When Bob and I got married and I moved in with him, Susan gave me Sylvia as a wedding present. Bob was not that fond of cats when we got married, but she really grew on Bob. They became good friends. When Jonathan was born, Sylvia really became Bob's cat since I was so preoccupied with a baby. I had always been told by some friends that once you had a baby, a pet gets pushed down the family totem pole. This did happen in our family, but Bob really made sure he spent a lot of time with her when I was so busy with the baby. I am so greatful to Bob for keeping Princess from feeling too left out.

She really was a good kitty. When she died, she was 20 years and 11 months old. We figure she was around 100 years old in human years. We told Jonathan that Princess got sick and went to visit Jesus in Heaven. I don't think he really understands. Ethan is too young to understand.

Good bye sweet Princess. Thank you for being such a loving and faithful companion and friend.

-Dina

Ethan Post Surgery Pics

Pictures of Ethan post-surgery. Long overdue, I know...




- bob

It's Caillou!

One of the things that has captured Jonathan's attention lately is Sprout - a national cable TV channel geared specifically for toddlers and preschoolers. They show a variety of programming that aims to teach kids things like sharing, friendship, basics (such as counting, the alphabet), etc. They show quite a spectrum of shows - some very familiar (Thomas The Tank Engine, Sesame Street), others more obscure (at least to American audiences). One program that has caught Jonathan's attention in particular is Caillou.

Based on the name/spelling and style of animation (reminiscent of TinTin), I assumed it was French and then subsequently translated to English. Some poking around on their website revealed it was in fact of French-Canadian origin. More poking around revealed that they have a live Caillou stage show that travels across Canada and one of the tour stops was Vancouver. Figuring Jonathan would really enjoy it, we got tickets and went up. The show was just this last weekend.

The show as about what I expected. It was an hour (with a 15 minute intermission - most likely for the benefit of the audience/kids rather than the performers) and featured actors dressed in costumes made to look exactly like the characters with backdrops made to look exactly like the cartoon. The plot basically revolved around Caillou (a 4 year old) who entered a poem in a contest and won. The prize was to meet his hockey hero at the Winter-fest. The show encouraged the children to get up and get into the aisles and dance and participate.

Jonathan had a great time and, of course, joined in the fun, dancing and jumping around in the aisle. We had the fortune to have aisle seats (well, the row behind us was empty so we relocated to the aisle seats behind us). Every time Caillou disappeared off stage, Jonathan would always ask me, "Where's Caillou?".

At the end of the show, apparently there were some children that were literally and utterly inconsolable as the show was over and they couldn't see more of their friend Caillou.

(L to R: Rosie, Caillou, Mommy, and Leo)

Jonathan wearing his new t-shirt at the show.

- bob

Sleep Study Results

Ethan's primary pediatrician at Children's once remarked that Ethan is "full of surprises". Case in point: the sleep study. Given that Ethan has mandibular hypoplasia (shortened jaw) and therefore a crowded/tight airway, coupled with his laryngomalacia (basically soft floppy tissue in the larynx), he fully expected to see something in the sleep study results indicating sleep apnea or something similar.

True to form, Ethan pulled a fast one on everyone: his sleep study was perfectly fine! There was nothing abnormal in the readings at all! This actually surprised the doctor quite a bit. In his experience, children that are sent from Craniofacial to have a sleep study almost always have sleep apnea. The fact that Ethan has no signs of it is extremely encouraging.

He believes that Ethan's noisy breathing is most likely due to the laryngomalacia almost exclusively. We have talked to his otolaryngologist about this before and her opinion was that it was not enough of an issue to do anything about. Should it become a larger issue, she said it was basically an in-clinic procedure to simply laser the excess tissue away.

The doctor did note that since he has all these anatomical issues, he will be more prone to developing sleep apnea in the future. On the other hand, since he will continue to grow, it is also possible that as he gets bigger, his airway issues will also improve. So the overall odds of him developing sleep apnea are pretty much 50/50. This is just something we will need to watch for over time (increased snoring, less restful sleep, etc).

The doctor said he would talk with his primary Craniofacial pediatrician about the results. Since the news was entirely good, we expect that today was Ethan's last Children's appointment until the summer of 2011 (at which point he will have a regular Craniofacial followup and a regular eye exam by ophthalmology). At very most, we may have a follow up with his Craniofacial pediatrician but I doubt it since there are no issues to be discussed.

- bob

Ophthalmology Post-Op Visit

Ethan had his Ophthalmology post-op visit today. The doctor was very pleased with how his eye looks (again, apologies for lack of pictures to date).

Patching and eyeglasses most likely will not start until he is between 2-3 years of age. The doctor said to come back in 6 months and they will administer another eye exam just to see how his vision is coming along and I suppose at that point we will begin to discuss the plan for starting patching and glasses.

The doctor felt that there was little point in starting the patching and glasses now as Ethan would probably just rip them (patch and/or glasses) off anyway and given where he is developmentally with regard to his visual acuity, there would be little benefit (he is still of the age where his lack of visual acuity outweighs the effect of his astigmatism).

We also had a visit from General Surgery to examine how his G-Tube hole is coming along. They were also very pleased with his progress. There still seems to be a very small hole (when we change the dressing, there is still a tiny dot on it) so they said to simply give it more time (up to one month more). If at that point, it still has not closed up completely, then surgery would be required to close it up - but since the hole is so small, there is no urgency to the surgery and it could be done at any time/at our discretion. At this point, he is also OK to be submerged so regular bathing (as opposed to sponge baths) and trips to the pool are OK.

On Thursday we have another appointment (hopefully last one until next summer?) to discuss the results of his sleep study. Given that it has been about a month since the study was done and we have heard nothing I am going on the assumption that there is no real bad news there (the doctor did say he expected the results to be abnormal but not horrendous so I'm sure there will be some issues to be discussed but nothing terribly serious).

- bob

First Trick Or Treat

We took Jonathan and Ethan to Bellevue Square Mall for trick or treating today. We went to the mall not only because it's a safe environment (can't really be too careful these days) but also because our neighborhood is pretty dead.

This was the first time they had been trick or treating. Well, Ethan was in costume and he did get candy - but since he was asleep for just about all of it (we put him in the stroller), I guess while technically it was his first time, it doesn't really count.

Jonathan was Thomas The Tank Engine and Ethan was a baby kangaroo.

While Jonathan got a fairly good haul of candy (he loved going through his stash at home afterward and seeing what he got) and had a good time, the highlight of the evening for him was going into one of the toy stores in the mall to look at toys and play on the train table.

The mall was packed. The event started at 4PM and was to last until 7PM but we were advised by some people we knew to show up early or run the risk of running out of candy. Traffic getting to the mall was as bad as I have ever seen it. We arrived at 4:45 and found that while only 45 minutes into it - some stores had already run out of candy! Way to plan that out guys. However, being only 45 minutes into the event, that was the exception and not the norm and we trick or treated for the better part of an hour before Jonathan said he was done (and wanted to go to the toy store).

One of the photography studios in the mall was giving away free Halloween portraits of kids so Dina lined up for that (with a still sleeping Ethan) while I took Jonathan to the toy store. Pick up date for the photos is in a few days so we'll have to wait and see how they turn out.

- bob

96 Hours Later

Ethan's G-Tube hole seems to be coming along very nicely. When we changed the dressing last night, there was barely any leakage at all.

We were told that sometimes these holes heal from the inside out. On the outside, you can still see a small hole (which appears to be somewhat scabbed over) but since there is very little to no leakage, we assume this is what is happening.

On the other hand, Ethan came down with a cold and the cough turned pretty bad sounding as of yesterday so Dina took him to the doctor. The poor little guy now has an ear infection and possibly the beginnings of a sinus infection. Hopefully his antibiotics won't taste too bad...

- bob

Volunteering at Evergreen

I officially became a volunteer at Evergreen Hospital today. I have joined the Parent Advisory Board for the NICU. I've already been to 2 meetings and have had fun sharing our story with Ethan, talking about our experiences, and sharing ideas on a variety of subjects.

In order to become a volunteer at Evergreen, you have to meet and interview with someone in the department you are interested in, do a 3-5 hour training, have 2 TB tests done, prove your other vaccines are up to date, and get a badge. The process is very thorough, but you do get some perks for volunteering and I have already enjoyed my experiences as part of this advisory board. The other members are so nice and the staff members are awesome!

-Dina

Jonathan's First Field Trip

Today was a pretty big day. In addition to Ethan getting his G-Tube removed (see post below), Jonathan had his first field trip at school today to a pumpkin farm.

The trip included a hay-bale maze, a petting zoo, a tractor ride, and picking out a pumpkin from the pumpkin patch. Jonathan, however, was interested in only getting a pumpkin from the patch and had no real interest in any of the other activities. In the end, he did say he did have fun (probably because he got his pumpkin!).

Searching for the best pumpkin....

I found my pumpkin!

Mommy wants a picture.

Ethan took a nap after all the excitement of the animals and a hay ride.

We got a treat at the farm...my first creamsicle!

- Bob/Dina

No More G-Tube!

Ethan got his G-Tube removed today! He had a scheduled appointment to see the general surgeon that inserted it for evaluation for removal. After a very quick discussion, the decision was basically: 1) remove it now, 2) remove it next week in general surgery. Option one had the benefit of getting it out now and not subjecting Ethan to anesthesia/intubation but the drawback was that the hole would be left to close up on it's own. This happens at differing rates for different people - some close that night, some close within 24 hours, some don't close and require surgery. The second option had the benefit of having the hole closed surgically but the drawback was going through anesthesia/intubation. Normally, this is considered an outpatient procedure but because Ethan has so many issues with anesthesia/intubation, the doctor thought it best to remove it now and try to avoid anesthesia. If it turns out surgery is ultimately required to close the hole we can at least say we tried our best to avoid surgery. Closing the hole is a simple procedure and can be done quickly (20 minute procedure) - but it will most likely mean another overnight stay for Ethan.

Removal was quick - but painful. As the doctor put it: the only risk of doing it now was that he would be very unhappy for a few minutes. They essentially just pulled it right out. He held his belly down with one hand, and yanked it out with the other. There was quick audible 'pop' followed by lots of crying. Ethan cried a lot - but was less hysterical than I expected. I expected the 'silent/I can't even catch my breath/followed by intense screaming' but that didn't happen - he just cried. After about 5-10 minutes, he had calmed down and by the time we got home, he was totally fine.

The hole should close within 24-48 hours. In the mean time, it will leak and we've been given gauze to cover it up in the mean time. The doctor did mention that if the hole doesn't completely close up on it's own after 48 hours, but the leakage appears to be getting to be less and less every day, then we should simply give it more time.

During the next 48 hours Ethan can eat/drink as he normally does. The only restriction is to not submerge the area (so no baths - but sponge bathing is OK).

This also means that barring a surgery to close the hole, Ethan is now done with all his procedures and surgeries for several years!

We have appointments in the first week of November to follow up with Ophthalmology (post-op visit) and to go over the sleep study results. After that, barring any unforeseen events, the next big thing in Ethan's life will be the start of eyeglasses and eye patching. This may not begin for a year or two still (we'll know more after our post-op appointment with Ophthalmology). Moreover, after these appointments, Ethan probably won't have any more Children's appointments until his next regular Cranialfacial followup which won't be until summer of 2011.

Another pleasant consequence is that we no longer need to rent the feeding pump (we've already called to make arrangements to have it picked up), nor do we need to have a regular supply of Elecare (the special (expensive) prescription formula that Ethan has been on) which means, ultimately, less future dealings with the mob, er, I mean the insurance company*.

- bob

*As a post script: we're still working on whittling down the amounts under contention with the crooks, oops - the insurance company. While the amount under contention is still about $1200, it's a far cry from the (7+)K it was a few months ago. Progress is slow but steady...

Things Looking Good For G-Tube Removal

Ethan had a regular followup with Nutrition at Children's as well as a second swallow study.

Nutrition really liked his weight gain (over 18 pounds now) and so this bodes very well for getting the G-Tube removed. We meet with the general surgeon (who inserted it) later this week and he will give his evaluation.

The swallow study was to rule out any physiological issues regarding Ethan's reluctance to eat solid/chunky/real food. The swallow study came through with no issues so the thought now is simply it's a texture issue - Ethan just doesn't like that stuff. So the plan is to slowly introduce the stuff into his diet. He will start with things that can be mashed (like yams, etc) and to gradually make them more chunky/solid over time so that eventually he just gets used to more solid stuff.

I know we have been remiss in pictures of the little guy since his eye surgery. Pictures should be forthcoming. At present, the redness around the sclera has diminished substantially but there still is a little bit. Pictures, once uploaded, will probably show more redness than there currently is (since they will probably be 1-2 weeks old).

- b

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