Ethan has started patching. It is going pretty much as expected. The first day he absolutely hated it. We were at my folks place in Vancouver when we started and he complained that he wasn't having any fun anymore because of the patch. :-(
We found the next day that breaking it up into two 2-hour sessions worked better for him and by the fourth day, he had gotten used to it enough that his first 2-hour session went to 4 hours and we informed him - much to his exquisite delight - that he was done for the day and didn't have to do a second session.
Dina found a blog of a father who had to patch his son and made it more 'fun' for him by drawing pictures on his patch. Needless to say we adopted this idea the very moment and it has helped a little. We let Ethan determine what he wants drawn and then I do it. So far: USS Enterprise, the Enterprise insignia, a Star Wars stormtrooper... - you can see a theme here.
One issue we've run into is that after only 5 days is that the constant application and removal of the patch is irritating his skin. We called this in and they suggested (of all things) rubbing some Milk of Magnesia or Malox on the area before applying the patch. Apparently this forms a kind of barrier between the skin and the patch adhesive. We shall see to it's efficacy.
We also had Ethan pick out a glasses frame and they should be ready sometime this week.
- bob
Monday, January 5, 2015
Wednesday, December 24, 2014
Reversion To The Mean
Considering we have gone literally years now without getting a hint of bad news from Children's I suppose something like this was overdue. Reversion to the mean, I suppose.
We just had a regular ophthalmology follow up at Children's this PM.
We just had a regular ophthalmology follow up at Children's this PM.
Not so good this time. :-(
Ethan's right eye (the affected eye) is showing signs of becoming slightly weaker. This means the doctor wants to start patching and eye glasses now. Patching will be 4 hours a day, 5 days a week, for the next six months. All four hours don't have have to be in a consecutive block. Glasses will be full time but probably will stop after age 8. He will have a follow up om 6 months to see if it's gotten any better and if so, the patching may stop. Or it may not. Depends. But according to the doctor, whatever the outcome, worst case is that it continues until age 8. Then he's done with everything - unless he actually has bad eye sight.
His glasses prescription is very weak though. -1 in the affected eye and nothing in the good eye.
We are going to try to get the prescription filled tomorrow but it depends on if he can find a frame he likes and is comfortable. But chances are we won't actually get the glasses until some time in the new year.
The doctor actually gave us a choice - you can do patching for 4 hours/day for 5 days/week for six months with glasses - or you can patch full time 24/7 for 6 weeks. But we don't think Ethan would take very well to the 2nd alternative so we opted for patching w/ glasses.
The aim is to get the brain to use the bad eye more. Apparently at age 8, the brain is fully trained and you don't need to do it anymore. This is prevent amblyopia - where the brain eventually just stops using the bad eye (and you go blind in the bad eye).
As of now, the doctor is *not* concerned because the difference between the good eye and the bad eye is so small. But he says the time to make the corrections is now and not later.
So glasses start as soon as we get them, and patching starts immediately (so given it's 7PM and we just got home - that probably means starting tomorrow).
-b
"Hello again, hello. Just called to say hello. "
Yes, it's been a very long time. Over a year. Since this blog eventually turned into a family news blog, that function soon got supplanted by Facebook where family news and events got posted (complete with pictures!).
At this point, the blog will probably just be used for posterity and to log events relevant to Ethan's condition.
With regard to that topic - nothing has changed. Since the last update, Ethan has been doing very well and has come out of every regular Children's followup with nothing to report except that he is coming along nicely!
And for the sake of posterity - other news that has happened in the last year+
*The boys continue with Karate. Ethan is now a Gold stripe belt (3rd color rank for kids 7 and under at his school) and Jonathan is a Purple belt (4th color rank for kids 7-13 at his school)
*Ethan started Hockey 1.
*Jonathan has finished losing his first wave of primary teeth.
*Ethan started loosing his teeth.
*Ethan attended his first Star Trek con with us and meet several celebrities, some of whom were quite taken with him! Jonathan opted to not go and spent the weekend at Grandma's.
*Both boys attended their first ballet - the Nutcracker.
*Yours truly became an American citizen!
*Ethan got discharged from Speech Therapy. He is done!
To stay more current on family events, you should friend myself and/or Dina on Facebook.
-b
At this point, the blog will probably just be used for posterity and to log events relevant to Ethan's condition.
With regard to that topic - nothing has changed. Since the last update, Ethan has been doing very well and has come out of every regular Children's followup with nothing to report except that he is coming along nicely!
And for the sake of posterity - other news that has happened in the last year+
*The boys continue with Karate. Ethan is now a Gold stripe belt (3rd color rank for kids 7 and under at his school) and Jonathan is a Purple belt (4th color rank for kids 7-13 at his school)
*Ethan started Hockey 1.
*Jonathan has finished losing his first wave of primary teeth.
*Ethan started loosing his teeth.
*Ethan attended his first Star Trek con with us and meet several celebrities, some of whom were quite taken with him! Jonathan opted to not go and spent the weekend at Grandma's.
*Both boys attended their first ballet - the Nutcracker.
*Yours truly became an American citizen!
*Ethan got discharged from Speech Therapy. He is done!
To stay more current on family events, you should friend myself and/or Dina on Facebook.
-b
Tuesday, May 7, 2013
Update on Ethan
Ethan had more regularly scheduled followups at Children's on 5/6/13.
Everything was pretty much the same and they're happy with how he's doing. He's still on track for major jaw surgery at about age 7-9. However, we got more details of what this will eventually involve. Once this starts - it will not be a good year for Ethan... :-(
Most likely there will be one major jaw surgery before the main one to lengthen his jaw. This will involve taking bone and cartilage grafts from his ribs and using it to create more bone and/or joints at the joint where his jaw hinges together. It is not known definitively if this surgery will be required until they take a CAT scan to see what they have to work with - and they will not do this until about age 7 when he's getting into the window of time where they want to do the procedure. However, it was the doctor's opinion that he would be very surprised if Ethan did not require this surgery. After this surgery, it will be at least 6 months (minimum) before the jaw distraction surgery can take place.
After this surgery, the jaw distraction (jaw lengthening) can take place. This will involve breaking the jaw in two places - one on each side - and inserting the distraction device. Once in place, there will be one month of actually using the device (turning the screw on each device on a nightly basis to lengthen it and hence induce bone to grow in the gap). There will be at least two visits per week to Children's during this time to monitor the bone growth. X-rays will probably be taken at each visit. This period could go longer than one month but the doctor estimates that amount of bone that needs to be created will take around 1 month. After this process, the device is left in the jaw for about another 2 months. At this point - the device is what is holding his jaw together so it is left in place while the jaw heals over the next 2 months.
At the end of the healing period, there is the final surgery to remove the devices. After the devices are removed, he should be healed enough that no further healing is required - essentially the day after the devices are removed he is free to eat anything and do any and all activities. However, for the 3+ months prior (i.e. when the devices are in place) he will be on a severely restricted regimen - very soft foods only, probably very little physical activities, etc.
It will probably be a very unpleasant year for Ethan... :-( They did say they will accommodate you if you want a summer time surgery so he doesn't have to go to school with the devices implanted (most parents opt for this so summer is a busy time for them in terms of this type of surgery) but given that the entire process will be a minimum of 3 months - that will be his whole summer vacation so I'm sure he will be *very* unhappy about that.
Since it's at least 4 years away, I probably will choose to simply not think about it until then. We do not meet w/ the plastic surgeon again for another followup for another 2+ years at this point. So nothing will change in terms of the surgical schedule so no need to think about it. So I'm choosing not to.
Other news: Ethan had another regular hearing screen and the results came back the same as last time so this is good. Essentially, his hearing is not expected to change, but as he gets older, they can get more reliable data from him and that is the reason for the periodic hearing screens. So far, the data is fairly stable: he is giving pretty consistent data telling us what we already know.
His otolaryngologist saw him and there was nothing new there either. There was some talk of possibly inserting ear tubes to help drain fluid from his right ear to possibly improve the slight hearing loss he has - but given it will require general anesthesia and every time Ethan requires a general he also needs to be intubated, we all agreed to simply leave it as an option on the table and do nothing for now.
He meets with this ophthalmologist at Children's in two weeks. We expect to walk out of there with glasses for Ethan. We hope to be surprised and come out w/ nothing - but we're really not counting on it.
- bob
Wednesday, March 6, 2013
Emerald City Comicon 2013
It was an amazing weekend of geekness and waiting in lines! From our experience last year, we knew that the more popular guests (i.e. everyone *we* wanted to see) were going to have long lines, and as such, if we didn't line up early, we either wouldn't get to see them and/or it would throw off our schedule for the rest of the day and result in our missing even more people.
As a result, Dina put a schedule together of our entire weekend and we pretty much stuck to it - except where we were running ahead of schedule and then tried to pull in events/people from the next day to free up our schedule for the upcoming day. We were there for all three days from opening to closing (first Comicon where I did *that*) and by my reckoning, we spent probably 75% of that time in lines.
Every one of the celebrities we met were very friendly and gracious. They took time (when they could) to say a few words to you, and actually look you in the eye (as opposed to other celebrities whom I have heard will barely acknowledge your existence). Generally we would get our photos taken and then take those to the signings (which were scheduled later) to get them autographed. Both Gillian Anderson and Walter Koenig actually remembered us from the earlier photograph line which was ultra cool!
We also had a chance to meet up with an old junior high/high school friend of mine who came in from out of town for Comicon from Prince George, B.C. This gave Dina a chance to ask her if her husband really was as geeky as he said he was back then. (The answer was 'yes').
If you are wondering where our two boys are/were - mom and dad came down from Vancouver for the weekend to watch them while we went and got our geek on! Thank you mom and dad! :-)
With Gillian Anderson
With Patrick Stewart
With Billy Dee Williams
With Walter Koenig
With Dirk Benedict
Live long and prosper - and make it so! Frack!
- bob
"Let me explain. No - there is too much. Let me sum up"
Bonus points to anyone that can identify the quote.
So, to sum up:
Ethan's collar bone has healed quite nicely.
Everyone got sick from some cold virus accidentally released from some secret government lab
Halloween came and went and the boys made out like bandits
Ethan discovered he *really* likes Christmas light displays
The boys were even more jazzed up about Christmas than last year (if that was possible)
Jonathan just had his 6th birthday - how the time flies!
Jonathan is at 7 stripes on his Karate belt. One more stripe and then after that - he's a yellow belt!
Spent my 11th evening with Rush!
Saw Roger Hodgson (of Supertramp)
So, to explain:
After 2 follow up x-rays, Ethan was cleared for all activities. We stopped using the sling after about 10 days and stopped pain meds after only about 3 days.
This Halloween, Ethan went as a red Angry Bird and Jonathan decided to reprise his roll as Thomas The Tank Engine. Like last year, we went to Bellevue Square Mall to do trick or treating. The mall has been getting better at this over the years with fewer and fewer stores running out of candy. This year, we got there around the start time and stayed for about 1.5 hours and there were still stores handing out candy. Contrast that with the first year we went where the stores generally ran out of candy before the first hour was up. After that, we went to our church where they were running a sort of Trick and Treat thing - kids would play games (like ball toss, etc) to get their candy. They also ran 2 bouncy houses which Jonathan enjoyed thoroughly.
As Christmas drew closer, we made various pilgrimages to see various Christmas light displays. Just to give an idea of how much the boys (especially Ethan) enjoy this - there are a few houses up the street from us that do a *very* nice job of put on a light display. Every single night that we come home (from wherever we may be), we *have* to drive by those houses to see their lights before we go to our house. Every time. No exceptions. We also go see various things around town that have become a sort of tradition for us now: Bellevue Square has a nightly performance of music, live drummers, and artificial snow, the Belleuve Botanical Gardens transform their entire grounds into a huge light display, the City of Redmond hosts a night where you walk from city hall to Redmond Town Center mall along the Burke Gillman bike/jogging trail where the entire distance is lined with lights and carolers - complete with family activities at both ends of the walk, and in downtown Seattle, there is the annual lighting of the huge Christmas tree down by Westlake Center mall and the lighting of the Macy's star.
We alternate years where we spend Christmas in Seattle or Vancouver. This year was our year to spend Christmas in Seattle. We then headed up to Vancouver to spend time with my parents on Boxing day (and spend a few days there). This leads to a little confusion for the boys because they get to open presents on Christmas Eve (at an annual extended family gathering at one of Dina's aunts), then more on Christmas Day, and then more again on Boxing day on the years we go up to Vancouver. And on years where we go up to Vancouver for Christmas Day, there will be more presents for the boys to open when we come back to Seattle. So Jonathan had some trouble understanding that Santa was only coming once not twice - once for our house and another time for my folk's house. And on top of that, he always asks if there will be presents if we go to someone's house because there a just so many places where they open gifts!
Jonathan, for his birthday, will have 2 parties this year. His first one, on his actual birthday, was a Chuck E Cheese. We invited only the immediate family and he got to pick one friend to come. This is becoming a favorite place to go for both boys. Ethan proclaimed that he wanted to come to Chuck E Cheese on his birthday too! His second party will be at the ice rink close to our house (the Kingsgate arena). This is because Dina 'Liked' Kingsgate Arena on Facebook and then won a free ice skating birthday party! Since we only have to supply the cake and pizza (and there is a pizza place in the same strip mall that has $5 pizzas) and $7/skater over 10 skaters we invited his entire class, a couple of his friends and immediate family. Anyone attending the party but not skating don't need to pay.
In other (what I deem) interesting news:
Yours truly saw Rush for the 11th time (and counting). This was the tour supporting their new album Clockwork Angels and in my opinion, it is the best album they've put out in probably decades.
I also had the good fortune to see Roger Hodgson (the voice of Supertramp) for the first time. It was a fantastic show where he played a ton of old Supertramp.
- bob
So, to sum up:
Ethan's collar bone has healed quite nicely.
Everyone got sick from some cold virus accidentally released from some secret government lab
Halloween came and went and the boys made out like bandits
Ethan discovered he *really* likes Christmas light displays
The boys were even more jazzed up about Christmas than last year (if that was possible)
Jonathan just had his 6th birthday - how the time flies!
Jonathan is at 7 stripes on his Karate belt. One more stripe and then after that - he's a yellow belt!
Spent my 11th evening with Rush!
Saw Roger Hodgson (of Supertramp)
So, to explain:
After 2 follow up x-rays, Ethan was cleared for all activities. We stopped using the sling after about 10 days and stopped pain meds after only about 3 days.
This Halloween, Ethan went as a red Angry Bird and Jonathan decided to reprise his roll as Thomas The Tank Engine. Like last year, we went to Bellevue Square Mall to do trick or treating. The mall has been getting better at this over the years with fewer and fewer stores running out of candy. This year, we got there around the start time and stayed for about 1.5 hours and there were still stores handing out candy. Contrast that with the first year we went where the stores generally ran out of candy before the first hour was up. After that, we went to our church where they were running a sort of Trick and Treat thing - kids would play games (like ball toss, etc) to get their candy. They also ran 2 bouncy houses which Jonathan enjoyed thoroughly.
As Christmas drew closer, we made various pilgrimages to see various Christmas light displays. Just to give an idea of how much the boys (especially Ethan) enjoy this - there are a few houses up the street from us that do a *very* nice job of put on a light display. Every single night that we come home (from wherever we may be), we *have* to drive by those houses to see their lights before we go to our house. Every time. No exceptions. We also go see various things around town that have become a sort of tradition for us now: Bellevue Square has a nightly performance of music, live drummers, and artificial snow, the Belleuve Botanical Gardens transform their entire grounds into a huge light display, the City of Redmond hosts a night where you walk from city hall to Redmond Town Center mall along the Burke Gillman bike/jogging trail where the entire distance is lined with lights and carolers - complete with family activities at both ends of the walk, and in downtown Seattle, there is the annual lighting of the huge Christmas tree down by Westlake Center mall and the lighting of the Macy's star.
We alternate years where we spend Christmas in Seattle or Vancouver. This year was our year to spend Christmas in Seattle. We then headed up to Vancouver to spend time with my parents on Boxing day (and spend a few days there). This leads to a little confusion for the boys because they get to open presents on Christmas Eve (at an annual extended family gathering at one of Dina's aunts), then more on Christmas Day, and then more again on Boxing day on the years we go up to Vancouver. And on years where we go up to Vancouver for Christmas Day, there will be more presents for the boys to open when we come back to Seattle. So Jonathan had some trouble understanding that Santa was only coming once not twice - once for our house and another time for my folk's house. And on top of that, he always asks if there will be presents if we go to someone's house because there a just so many places where they open gifts!
Jonathan, for his birthday, will have 2 parties this year. His first one, on his actual birthday, was a Chuck E Cheese. We invited only the immediate family and he got to pick one friend to come. This is becoming a favorite place to go for both boys. Ethan proclaimed that he wanted to come to Chuck E Cheese on his birthday too! His second party will be at the ice rink close to our house (the Kingsgate arena). This is because Dina 'Liked' Kingsgate Arena on Facebook and then won a free ice skating birthday party! Since we only have to supply the cake and pizza (and there is a pizza place in the same strip mall that has $5 pizzas) and $7/skater over 10 skaters we invited his entire class, a couple of his friends and immediate family. Anyone attending the party but not skating don't need to pay.
In other (what I deem) interesting news:
Yours truly saw Rush for the 11th time (and counting). This was the tour supporting their new album Clockwork Angels and in my opinion, it is the best album they've put out in probably decades.
I also had the good fortune to see Roger Hodgson (the voice of Supertramp) for the first time. It was a fantastic show where he played a ton of old Supertramp.
- bob
Friday, October 26, 2012
Yes, We're Still Here
Apologies are once again in order as we have been extremely lax in keeping this thing updated lately. But you know how it goes - you get caught up in everyday life things like going to work, caring for two boys, vegging out in front of Big Bang Theory episodes, gardening, drumming, hockey, soccer, consuming copious amounts of Starbucks, reading Barron's - and the next thing you know months have gone by with nary a word blogged.
Once again - the requisite promise that pictures will be forthcoming.
And with that, on to the few newsworthy events of the last couple of months...
In the waning days of summer, we made a trip out to Remlinger Farms (just outside of Carnation). Dina had bought a Living Social coupon for this. It is essentially a huge farm with lots of things for families to do such as children's midway rides, pony rides, a small passenger train, food, etc. We (of course) rode the train. The boys also enjoyed a 'canoe ride', a small kinda-Ferris-wheel ride, and their first pony rides.
We also went to the coast to Ocean Shores. Dina's uncle's family owns a small cabin out there that he lets family members use. Dina's brother booked a weekend and invited all of us to join them. This was the first time at the ocean for the boys as well as myself. (Yes - I've lived here for almost 1/2 my life now and this was my first time to the ocean - go figure (Puget Sound is technically not the ocean)). Jonathan and Ethan both really enjoyed playing in the sand, walking along the shore/water, and playing with their cousin Amanda. It was *extremely* relaxing to just sit on the beach and do *nothing* and simply listen to the roar of the ocean.
Ethan broke his collarbone back in September. He was at speech therapy when it happened. At their offices, they conduct various kinds of therapy for children. As such, they have quite an assortment of different kinds of equipment that, from a child's point of view, appears like a huge playground of toys, climbing equipment, etc.
During speech therapy, Ethan is allowed from time to time to play on various equipment (like a ball pit, say). This particular week, he wanted to try out a hammock. Since Jonathan's school schedule has changed to a PM class, he has to go to Ethan's appointment as well, as it is scheduled in the mornings. Jonathan wanted to also try out the hammock and when Ethan's therapist went to go help Jonathan get on, Ethan fell off. Now, the fall itself was only about 2-3 feet. It was most likely the way he landed that broke his collarbone. As was related to me from Dina, he was inconsolable (whereas he normally recovers after little accidents after only a few minutes) and kept crying/whimpering for the next hour as well as favoring that arm. She then took him to the ER where an x-ray revealed the true nature of the injury.
Amazingly, all they did was put his arm in a sling and give him pain medication. Apparently at this age, even a break like that will simply heal on it's own after 6-8 weeks. No surgery, no cast, no splint - just a sling to immobilize the arm.
Ethan has had 2 successive x-rays and as of now it has healed quite nicely and he is cleared for all activities.
In other family news, Dina's mom has just had hip replacement surgery. She is home now recuperating.
Jonathan continues with ice skating, soccer, and Karate (now having earned 4 black stripes on his belt). Ethan is still in Gymboree. Both are now in school (Jonathan is in 1/2 day PM kindergarten 4 days a week and Ethan is in 1/2 day PM preschool for 2 days a week).
Halloween is just around the corner and as such, trips to the pumpkin patch are requisite. Ethan already had his trip at school last week and Jonathan will have his just a few days before Halloween. Pictures will be posted - one day.
- bob
Once again - the requisite promise that pictures will be forthcoming.
And with that, on to the few newsworthy events of the last couple of months...
In the waning days of summer, we made a trip out to Remlinger Farms (just outside of Carnation). Dina had bought a Living Social coupon for this. It is essentially a huge farm with lots of things for families to do such as children's midway rides, pony rides, a small passenger train, food, etc. We (of course) rode the train. The boys also enjoyed a 'canoe ride', a small kinda-Ferris-wheel ride, and their first pony rides.
We also went to the coast to Ocean Shores. Dina's uncle's family owns a small cabin out there that he lets family members use. Dina's brother booked a weekend and invited all of us to join them. This was the first time at the ocean for the boys as well as myself. (Yes - I've lived here for almost 1/2 my life now and this was my first time to the ocean - go figure (Puget Sound is technically not the ocean)). Jonathan and Ethan both really enjoyed playing in the sand, walking along the shore/water, and playing with their cousin Amanda. It was *extremely* relaxing to just sit on the beach and do *nothing* and simply listen to the roar of the ocean.
Ethan broke his collarbone back in September. He was at speech therapy when it happened. At their offices, they conduct various kinds of therapy for children. As such, they have quite an assortment of different kinds of equipment that, from a child's point of view, appears like a huge playground of toys, climbing equipment, etc.
During speech therapy, Ethan is allowed from time to time to play on various equipment (like a ball pit, say). This particular week, he wanted to try out a hammock. Since Jonathan's school schedule has changed to a PM class, he has to go to Ethan's appointment as well, as it is scheduled in the mornings. Jonathan wanted to also try out the hammock and when Ethan's therapist went to go help Jonathan get on, Ethan fell off. Now, the fall itself was only about 2-3 feet. It was most likely the way he landed that broke his collarbone. As was related to me from Dina, he was inconsolable (whereas he normally recovers after little accidents after only a few minutes) and kept crying/whimpering for the next hour as well as favoring that arm. She then took him to the ER where an x-ray revealed the true nature of the injury.
Amazingly, all they did was put his arm in a sling and give him pain medication. Apparently at this age, even a break like that will simply heal on it's own after 6-8 weeks. No surgery, no cast, no splint - just a sling to immobilize the arm.
Ethan has had 2 successive x-rays and as of now it has healed quite nicely and he is cleared for all activities.
In other family news, Dina's mom has just had hip replacement surgery. She is home now recuperating.
Jonathan continues with ice skating, soccer, and Karate (now having earned 4 black stripes on his belt). Ethan is still in Gymboree. Both are now in school (Jonathan is in 1/2 day PM kindergarten 4 days a week and Ethan is in 1/2 day PM preschool for 2 days a week).
Halloween is just around the corner and as such, trips to the pumpkin patch are requisite. Ethan already had his trip at school last week and Jonathan will have his just a few days before Halloween. Pictures will be posted - one day.
- bob
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