Badge of Honor

I realized recently that Ethan is wearing his badge of honor. God is using Ethan's syndrome for good things and I am so happy. The Social Worker at Evergreen Hospital who worked with us while Ethan was in the NICU has called me a couple of times now to ask if I would come in and talk to families who aer going through similar experiences, i.e. feeding tubes and craniofacial differences. I have been more than happy to do this and have me tsome great families. I think it might be therapy for me to talk to these parents too. I love tlaking about Ethan and the Craniofacial people at Children's Hospital, which i've been able to talk about both visits. On this latest visit, I showed the parents pictures of Ethan before and after his macrostomia repair and it seemed to really help ease some concern for these parents who's child will be undergoing some repair as Ethan has undergone. I really think being able to see an actual child (and not jsut one in a pamphlet) who has had surgery and seeing how well their scar looks helps so much. There was another time when we were waiting to see the craniofacial doctor at Children's where we were waiting in teh waiting area and Ethan took a liking to this little baby girl who had a cleft lip. I was at first a little uncomfortable with him staring at her because you never know how parents feel about these things, but the mother noticed Ethan and sat ehr daugheter on her lap so Ethan could see her better. Eventually I noticed that both this little girl's mother and father were looking with a lot of interest at the side of Ethan's face. They started asking questions about Ethan's condition and his repair. I told them that Ethan's repair had been done by the craniofacial clinic and they did a wonderful job. Then these parents started smiling and talking about how good Ethan looked. I felt like for them just seeing Ethan took that scared look off their faces and put a smile in its place. That was very cool!

I kow that there are so many problems that children have that need treatment adn I don't mean to be offensive or diminish the severity of other childhood conditions, but....children with craniofacial differences wear their condition on their face for all to see. Yes, most of these children are not in a critical state like children with other conditions, but you can't see some of these conditions on the outside. Craniofacial children dcan't hide their condition. I think i've seen children with some very serious looking conditions-missing features and features not in the right spots. Visiting the craniofacial clinic so often over the last 18 months has made me very aware of staring at people. I didn't like it when people stared at Ethan and Ethan isn't even very bad at all. It has also made me so thankful that Ethan's condition isn't worse than it is because Craniofacial Microsomia could be so disfiguring.

-Dina

Welcome Vivienne!

Rob and Elaine (my sister) welcomed Vivienne Wei Li Walker into the world today! She was born 8 pounds 4.6 ounces and 21 inches at around 7:15PMish. Mother, daughter, and father are all doing very well - considering this was the end of 50+ hours of labor.

Hello Vivienne!

Elaine, Vivienne, and the proud grandparents.

- b

New Surgery Date

Ethan's new surgery date is 3/2/11.

He has recovered from his cold and has entered into 'quarantine' mode. We do *not* want to reschedule this surgery again!

- b

Surgery Postponed

Ethan's surgery to close the G-Tube hole has been postponed. Ethan caught a cold. We will hopefully have a new date 2-3 weeks out from here.

- bob

The G-Tube Strikes Back

It turns out that Ethan's G-Tube hole has not healed. It seemed to heal quite nicely all the way up to when Ethan got violently ill in December. When he came down with the flu/Norwalk virus, he spent about 24 hours constantly vomiting. Apparently, the intense pressure this placed on his stomach basically reopened the hole. (Ethan did have his flu shot this year so if it was a flu, it was a different strain).

We took Ethan in to Children's to have them look at the hole just before Christmas. Their feeling was to give it another 6 weeks to see if it would re-heal.

It has not. In fact, as of now, it is leaking far more than it ever has ever since the G-Tube was first removed.

PASS clinic is scheduled for this coming Friday (early afternoon) and the surgery to close the hole is scheduled for this coming Tuesday (1/25/11, time: TBD). The surgery itself is a short 20 minute outpatient procedure, but due to past issues Ethan has had with intubation, he will most likely spend the night at Children's for observation. He should be home the next day (Wed., 1/26/11). Our M.O. for this will be the same: I will stay home with Jonathan, and Dina will stay at Children's with Ethan over night.

- bob

Jonathan's 4th Birthday

Jonathan celebrate his fourth birthday on January 10, 2011. He started off the day going to preschool. Because it was his birthday, he got to be the special person of the day, bringing a favorite snack, line leader, and getting to sit in the special chair at circle time. He got to help lead some songs, hold the flag during the flag salute, put the date up on the calendar, and be the weather man. He even got a special birthday crown.

Then we went to have lunch with daddy at his office. We picked up lunch from Red Robin and ate in daddy's office. Jonathan had the choice to eat in the office or at the restaurant. Jonathan was a nice big brother and let Ethan enjoy his chair while he sat next to daddy in a big chair.

In the evening, we went out to dinner at The California Pizza Kitchen at Northgate with the family. Jonathan enjoyed opening his presents and seeing his family.

Yummy! Jonathan got an ice cream Sunday to celebrate! Daddy ended up finishing it, but it was very good.

At the end of the night, Jonathan enjoyed all of his new toys. He was very happy because he got what he asked for. Happy Birthday big boy! We love you so much and are so blessed to have you as our son!

-Dina

Arriving Somewhere

When we first created this blog, the main purpose was simply to let people know about what was happening with regard to Ethan - what new issues may have cropped up, any new developments - good or bad - that may have occurred, and various other et cetera news. One of the things we needed to do was figure out a name for this running log of our lives. At the time, I have to admit that I was feeling pretty despondent about how things were progressing - or rather - not progressing. A particular, and very downbeat lyric came to mind:

All my designs simplified
And all of my plans compromised
All of my dreams sacrificed
Arriving somewhere - but not here

The song, 'Arriving Somewhere - But Not Here' by Porcupine Tree seemed to resonate with me. Especially the line, "Arriving somewhere - but not here".

Before Ethan was born, we were blissfully unaware of what lay ahead of us. We thought we knew how it was all going to happen, and how we would have a second perfectly healthy boy and the perfect Norman Rockwell painted life (albeit - an Asian version!) lay ahead of us. Somehow we just knew that's where we were going to be. And then life happens. And you arrive somewhere. But it's not where you expected to be. You arrive somewhere. But you never imagined it would be here.

So many problems lay ahead of us. So many unknowns. We knew about the issues that confronted us. But if that wasn't enough, we learned soon enough that there were going to be more issues that we didn't even know about yet to come - we just knew that they would be coming - whatever they might be. As someone once famously pointed out, there are the things you know you don't know, and then there are the things you don't know that you don't know. And at that point, I knew that where ever we would end up - it wouldn't be where we were expecting.

Arriving somewhere - but not here.

Such a negative connotations - those words.

But fast forward 365 days. So many obstacles overcome. So many issues resolved. Ethan has undergone many of his scheduled surgeries. He has so many problems fixed. He's healthy, he's growing, he's thriving, and he's happy. And we're happy. Twelve months ago I never would have thought that we would ever get to this point - so depressed was my point of view.

Arriving somewhere - but not here.

Such a positive connotations - those words.

So here we are - the start of another trip around Old Sol. Where will we be 365 days from here? Ethan's doctor once remarked, "Ethan is full of surprises". Indeed. So where will we be this time next year? Who knows.

All that is certain is that we will be arriving somewhere.

Happy New Year everyone. Especially to our loving families, friends, and especially to our doctors that made it possible for us to arrive here.

- bob