Major Appointment Checkin

We just had a full day of regularly scheduled followups at Children's on 09/21/15.  

Ethan is doing very well, but the direction in terms of his future care has changed somewhat.  There has been a paradigm shift in how they treat children with CFM and Treacher Collins Syndrome (a related syndrome but *not* what Ethan has).  

The belief in the past was that you treated the hypoplasia in the mandible with the distraction surgeries.  However, in children with these two conditions it was found that about 3-4 years after the surgery, it often appeared as if nothing was done and it was a wasted surgery.  The old paradigm was to distract the lower jaw so that it would match the upper jaw.  However, since the benefits seemed to disappear after about 3-4 years, the distraction would have to be repeated (sometimes as many as 3-4 times depending on the case).  

The new belief is that in many of these cases, the best course of action is to basically 'reset' the entire jaw - both upper and lower - with a very large, major surgery that involved distracting both the upper and lower jaws at the same time as well as moving the entire jaw structure at the same time.  This is a much, much larger deal than the old surgery of distracting just the lower jaw.  It involves about a 2 week stay in the hospital after the initial surgery (part of it in the ICU) with the entire jaw being wired shut for about a month.  Feeding is done either in a G-Tube for children that already have a G-Tube, or a feeding tube through the nose.  Once the first month is done, children can begin feeding orally but because of the nature of the surgery, the distraction devices are all external and the child has to wear the whole halo/head harness apparatus.  This stays on for about another 2 months.  

The reason you distract the upper jaw is that, really, it also is smaller than it should be.  But under the old paradigm, you distract the lower to match the upper.  In the new paradigm, you distract both to the length both should actually be.  In reality, both Ethan's upper and lower jaw suffer from hypoplasia.  It is just that the lower suffers more.  

It is currently unknown if Ethan will undergo this surgery.  He will *not* undergo the normal distraction surgery that, up to now, we thought and were told he would go through.  Next year he will undergo another sleep study.  Depending on the results, he may then undergo an CT scan.  Based on the data, it will then be determined if he is a candidate for this surgery.  The point of this surgery is NOT to fix the jaw(s) for aesthetics.  The point of this surgery is to address airway issues.  If his airways is structurally compromised (due to his anatomy and CFM), this surgery will fix that.  The normal distraction surgery could ostensibly address it as well, but the benefits disappear relatively soon and another distraction is required.  To avoid multiple surgeries, this alternative paradigm was conceived which fixes the problem once and for all.  The downside is that is is a much, much bigger deal than the older surgical method.  

Also, based on the data from the sleep study and possible CT scan, it may be determined that Ethan may only need CPAP.  It is also possible the data may simply say that nothing will be done until 18 years of age.  

At 18 - there is no escaping it - he will have major jaw surgery.  Even if he must have this new major surgery, he is still looking at major jaw surgery at 18 (even under the old paradigm he was still looking at this - this has never changed).  

However, the downside to not having the surgery is that he will go through adolescence with a short jaw and looking different than other people.  And this will only get more, and more pronounced as he grows and gets older.  

So either way, there is major suckage coming.  Either a very large and disruptive surgery about 1-3 years from now, or a possibly difficult and awkward adolescence until the jaw can be cosmetically fixed at 18.  

BTW - this new surgical paradigm was conceived and pioneered by Ethan's surgeon (the one that fixed his mouth).  He's already done this 5 times and has presented his findings to an international conference where it was apparently very well received.  Apparently even his mentor agrees it is a much better approach.  The first time he did this surgery was about 5-6 years ago.  

In other news, Ethan has been patching and wearing glasses now for about 9 months.  He had a 6 month check in with Ophthalmology.  At the check in he did very well and they cut the patching down from 4 hours a day every day to 4 hours every other day.  The doctor expects by the 1 year check in, he can probably do away with the patching but glasses will still remain for another 2 years or so. 

Ethan really resisted doing both initially and the first week was kind of rough.  It helped if I would draw something interesting on his patch.  After a couple of weeks he got used to it and now it's just an inconvenient fact of life.  

- b

Patching begins...

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

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.  

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

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

Emerald City Comicon 2013

So after last year, I converted Dina to Geekdom and we went to Comicon this year.  This year we had the fortune to meet Patrick Stewart (Star Trek: The Next Generation), Gillian Anderson (The X-Files), Walter Koenig (Star Trek), Billy Dee Williams (Empire Strikes Back/Return of the Jedi), Dirk Benedict (Battlestar Galactica), Wil Wheaton (Star Trek: The Next Generation), Jim Cummings (the voice of Winnie The Pooh), and Grey DeLisle (Scooby Do - the voice of Daphne). We also met (but didn't get a photograph with) Christopher Lloyd (Back To The Future/Star Trek III).  Our schedule just did not really allow for getting his photograph (well, that and the quickly dwindling amount of cash we brought - photos and signatures were cash only). 

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

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

Happy Birthday Ethan!

8/14/12 we celebrated Ethan's 3rd birthday.  It's almost hard to believe that only 3  years have gone by given how much the little guy has been through. 

I took the day off from work and Ethan's birthday was spent first going to a park in the morning to a play date and then to Chuck E Cheese later in the day for dinner and a lot of play time!  We kept it to just a family affair inviting just grandparents and cousins (with parents in tow, of course). 

Ethan playing at Chuck E Cheese

Jonathan on one of the rides. 

Both boys posing with Chuck E Cheese

Ethan as Mario Andretti

Both boys claiming prizes after redeeming their tickets

Opening presents with Jonathan and cousin Amanda

- bob

To Sleep, Perchance To Dream

Ethan had a series of regular follow up appointments at Children's yesterday (8/6/12).

We got the results from his sleep study and the results were shockingly good!  I almost asked if they had accidentally switched the results with another child - they were so unexpectedly good.  Normally, Ethan's results from sleep studies are not that good - but the doctors always throw in the caveat - but for *him* this is normal, so they generally are not very concerned.  Today - his results were actually *really* normal.  Not just "normal for him".  "Normal" is about 4-5 apnea episodes per hour for children.  Ethan had approximately 1 per hour. 

He was scheduled for a(nother) hearing screen but his ENT examined him first and found he had fluid in his ears - a left over from the cold he just got over last week - so she scrubbed the hearing screen and will reschedule it for 3 months from now. 

He was also tested at Children's by a speech pathologist.  She was also amazed at his progress since she last tested him (back in about January).  He is not quite ready to be discharged from speech therapy as he still has trouble with the k sounds and hard g sounds but she did remark on just how much more she understood of what he said and how far he as progressed. 

His main craniofacial pediatrician saw him and also was so pleased with his progress.  He examined his spine and saw no indications that there might be problems (craniofacial microsomia can also affect the spine however any diagnosis of any problems can't be made until the child is older and bones calcify more).  He will have his spine X-rayed the next time we are in to get a definitive look.  We are still tracking for jaw surgery possibly at age 7-8 and early jaw surgery is now off the table again.  So it was a very good day at Children's.  (As an aside, we were also informed that Ethan is getting to the age where we will start to see the dentists/oral surgeons at Children's as we begin charting the course towards his eventual jaw surgery - we might start seeing them at our next appointments in early 2013).



From the 'other news' department desk:
Ethan is registered for preschool this coming September.  He will be attending the same school as Jonathan but in his age group, he will only be going 2 days a week for 2.5 hours/day.  Ethan will be starting school one year earlier than Jonathan.  We hemmed and hawed on this idea for quite a while - but he seemed so ready for school that we felt we didn't want to hold him back.  We actually asked Ethan if he wanted to go to school like his big brother and he seemed to be very enthusiastic about it and was very happy when we told him that he was indeed going to be going to school later in the year. 

In other sports news... 

Jonathan passed Basic Level 1 in ice skating.  So if he wants to continue (and he said he does), it's on to the next level. 

I also saw Jonathan's swimming class.  This has been the first time in about a month or two that I've seen his swim class.  He's made a *lot* of progress since I last saw him.  He's putting his face/head in the water and he's starting to learn the basic front crawl. 

Also - Jonathan earned his 2nd black stripe on his white belt in Karate class just this last Saturday. 

- bob

An Overdue Checkin

We have been very lackadaisical about updating this blog.  It has been a pretty busy spring/summer thus far.  A quick update - I'm sure more detailed follow up posts with pictures will be forthcoming (famous last words). 

Jonathan has been very busy since school ended for the year back in May.  Since then he has been taking swimming, ice skating, and Karate lessons.  We signed him up for these classes through the City of Kirkland Parks Department.  He is really enjoying all three and when his Karate classes ended, we asked him if he wanted to continue and he gave a most definite 'yes' so we signed him up at the dojo for 'real' classes.  In fact, just this last weekend (7/7/12) he earned his first black strip on his white belt! 

He really enjoys his ice skating as well.  He is much more confident now on skates than when he first started the lessons.  I initially signed up for classes as well for the first session thinking he might be more comfortable knowing I was on the ice with him (though elsewhere on the rink in my own class).  By the time the lessons for the first session were ending, I don't think it mattered to him so we only signed him up (and not myself).  (I might add - you might wonder what I could learn in an skating class since I play ice hockey - well - my backwards crossovers needed a lot of work and I actually got a lot of improvement on them in the eight sessions so it wasn't money wasted). 

Jonathan is much more comfortable in the water now as well.  He used to have an aversion to even getting his face wet.  He can now dunk his head under water.  He passed the first level for pre-school and is now in level 2.  Most likely we will skip one session of swimming classes this summer just to give him a break (swimming classes are 4 days a week for 2 weeks and there is no break between sessions and he is currently in session 3).  We'll sign him up for the last session later in the summer. 

In all this, you may wonder what Ethan has been up to.  Unfortunately, he is too young to be signed up for any of these classes (which he keeps asking to participate in).  Ethan is still doing Gymboree every week and he really loves it.  When we practice Jonathan's Karate at home, Ethan is every enthusiastic to join in - and given he's only 2 1/2, he's pretty good!  Ethan is still continuing with his speech therapy and it really shows.  He is talking almost non-stop, his vocabulary has exploded, and he enunciates much, much better.  His snoring has, unfortunately, gotten worse since his tonsillectomy.  It is still far better than pre-surgery, but not as good as it was immediately post-surgery.  He just had a regularly schedule sleep study follow-up just this last weekend (the night of 7/6/12).  Hopefully the results will not be too bad. 

Dina has been keeping busy this summer starting a vegetable garden in the back yard.  While I can't stand to be doing anything remotely related to gardening or lawn maintenance (one wonders why I even bought a house in the first place instead of a condo), Dina really enjoys.it.  She is growing beans, tomatoes, pumpkins, kale, and a host of other things I cannot keep track of. 

I, on the other hand, have been pretty geeked out these last few weeks trying to catch up/brush up on my particle physics and some of my calculus and matrix algebra (I told you it was geeky).  I've also spent some time trying to improve my bass playing skills learning various parts from songs from the movie 'That Thing You Do' and various (easy) parts from various Rush songs (Caravan, Double Agent, and BU2B, specifically). 

- bob

Leading Worship

I had the opportunity and priviledge of leading worship again today at church. This was the third time that I lead worship and I think today was the best experience so far. Kevin Brooks played guitar, Tina played the piano, Bob played the drums and bass, Kevin Williams sang, LeAnne did words, Jaxon was on sound (his first time alone), and of course I sang too. This time I even did a small solo. I'm branching out! I lead because Pastor Mark and Mary Beth are on vacation to celebrate their 30th wedding anniversary in Hawaii. Lucky! We also had Steve Wilkinson one of our missionaries in the Philippines come and speak today. It was a great day at church. Jonathan even did a little dance in front of the congregation during our first song...he usually sits nicely on the first pew waiting to be excused for Children's Church, but I think the Lord came into his heart and made him feel like dancing today :)

I also went and played the second half of my soccer game today since the game started at 11:15am, which is during church. Luckily the game was right down the street from church. I scored my 14th goal of the year between 2 teams. I am on the way to score a record number of goals this year. Even if I don't score any more this year, it will still have been a great year for soccer!


-Dina

Talking To Jonathan's Class About Facial Differences

Today was the Muscular Distrophy Hop A Thon at Jonathan's school. Throughout the week the children have been learning about people with differences. Earlier in the week, someone came to talk to the kids about people in wheelchairs and other ways in which people are different including hair color and eye color. The message was that God makes everyone different in some way, but that means everyone is special in their own way. Today, I got to talk to Jonathan's class about people with facial differences. Some of Jonathan's friends have been asking about the scar on Ethan's face, so today I showed the children pictures of when Ethan was born, showed them what Ethan looks like now in real life since he was there with me and even about how some people have differences in eating. I brought a feeding tube so kids could see one in real life and then I let them ask questions. I love how children think and I love that they were asking questions to show me that they were really listening and taking in what I said. Many of the questions centered around how the feeding tube goes to the tummy.

During the talk, Ethan went to the back of the class where Miss Call was sitting and sat in her lap. I thought for sure he would have went and played with the toys.

Then the kids participated in the Hop A Thon for the MDA. The kids waited for the whole school to gather and then they were asked to get in a circle and they all hopped.

Getting Ready

Jumpy Jump. Having Fun!

Getting His Hop A Thon Certificate

My "Cake"

Making A Windsock

Lunch!

Hugs For Teacher Kerri

Hugs For Miss Call

After the Hop A Thon, Ethan and I stuck around for center time in Miss Call's class. Jonathan had a great time building his tower and doing art. Ethan got to play in the dramatic play area with the food and the kitchen.

Another great part of the day is the impact the Jonathan's teachers have had not only on Jonathan, but Ethan loves the teachers too. He gave Teacher Kerri, Jonathan's teacher from last year a hug and Miss Call a hug before we left. He doesn't give hugs to just anybody!

-Dina

Happy Easter

This year, I thought it might be fun to go to some community Easter Egg Hunts. We started off going to the city of Redmond for their hunt. My mom came with the boys and I since Bob had to go down to a friend's church and rehearse for their worship service that he was going to be a guest drummer at on Easter Service. When we got there, the boys' age groups were split up. There were a mass amount of people. I took Ethan to his field and mom took Jonathan to his field. The hunt kicked off with the mayor, fire chief, and the Easter bunny in a fire truck lift above the big field. They dropped some eggs and the hunt was on. Ethan started crying right before the start and the field filled up quickly. He stood over 3 eggs and refused to pick them up. He didn't like the big crowd. I always said I wouldn't be one of those parents who picked up eggs for their kids, but since he was standing over 3, I picked them up, put them in his basket, and walked away. He was done and all the eggs were probably taken by that point anyways. It was a madhouse. I heard one parent tell their kid "there were a lot more people here then last year". I saw some kids walking out with empty baskets. That's so sad. Jonathan did pretty well on his lawn and got 11 eggs. We might not do this one again next year since it was just too crowded.

The younger crowd

We left Redmond City Hall and drove over the Evergreen Hospital. Across the street is their hospice center where they hold their egg hunt for staff and volunteers. Since I am on a parent advisory board, I can attend. I took the boys last year and it was really fun so this year we decided to go again. They go all out with big eggs and big candy like whopper cartons, egg gum, etc. all over the lawn. Again, Jonathan and Ethan were in different age groups. I took Ethan and mom took Jonathan. At Ethan's level, one parent could go out with their child. At Jonathan's age, no adults were allowed to go out. Ethan and I were right in the front since we got there early. Mom said that Jonathan was in the front too, but as time went by, parents were pushing their kids ahead of Jonathan. She was getting irritated and finally pushed Jonathan back up to the front; that was her telling of the situation anyways. I should be surprised since some cities cancelled their egg hunts due to aggressive parents and someone else told me they saw on the news that some places had video of parents telling their kids to push other kids out of the way. Come on people! Really!!!! Anyways, Ethan went right out and started picking up everything he could. He didn't want the candy though, only the eggs. Fine with me. Jonathan apparently did the same thing. I brought a plastic bag with us since the basket filled up quickly. The boys did really good at this hunt, getting a lot of fun stuff and they even quit early. They both decided they were done even though there was still stuff left to pick up.

The lawn at the Evergreen hunt

Ethan picking up his eggs

Jonathan filled up his basket and decided he was done

When we got home, the boys waited for daddy to get home and then opened up all of their eggs so he could see what they got. Grandpa also came over and was able to share in the egg opening. He spent most of the day hanging out with us too.

Ethan opening his eggs

Jonathan and his eggs

The boys' Easter baskets, although I bought big eggs to put the stuff in

This was the first year we decided to do Easter baskets for the boys. I bought these big eggs and some grass at the after Easter sale at Michaels last year and used those as the baskets. There were Junior Mints, Gymboree CDs, Gymboree shapes, and die cast Cars 2 figures. It was a big hit!

The boys with grandpa

After Easter Sunday service, we also had the annual Easter Egg Hunt. It was outside behind the church since it was a nice sunny day.

Getting ready

Ethan going to town

He has mastered the egg hunt

Jonathan racing for eggs

He has mastered the hunt and was less picky about which eggs or colors he picked up.

Hug from Ellen

After church, the boys and I stopped at the City of Kirkland's egg hunt at Peter Kirk Park. Again, the boys were split up into different age groups, but I brought Ethan to the over 4 section since I was by myself. His section was supposed to be on the playground; the older section was on the baseball field. When we arrived, we were in the front line. By the time the hunt started, we were only in the second row and that was with me continually trying to stay ahead of the line. This egg hunt consisted of little chocolate eggs all over the lawn and not plastic eggs. To keep the crowd entertained, the Easter Bunny and an Easter Duck were walking around taking pictures with kids. The boys were able to get some chocolate eggs and picked me some dandelions.

Jonathan wearing his Easter basket while we waited for the hunt

Ethan trying to wear his Easter basket

The boys and the Easter Duck...Big Foster

In the afternoon, we went over to mom's house for an Easter egg hunt and dinner. Bob joined us. I brought some eggs and Tayla brought some eggs too. Before the hunt, Tayla brought a craft to do that was a bunny mask to decorate. My family, Ryan's family, Dad and Joy, and Mom were there for the egg hunt. The hunt took place in the backyard.

Ready, Set, Go!

Jonathan having a great time

Grandpa was watching

Ethan was an old pro

Here Ethan

After the hunt, the boys and AJ opened all their eggs. Oma Joy helped Ethan open all of his. Everyone had a lot of fun. After we opened all the eggs, Dad and Joy left to go back to Melissa's house. It was wonderful having them with us for a while on Easter to see the kids do their hunt.

Opening eggs

Help from Oma Joy

Uncle Ryan brought the egg dying kit and Jonathan was really into coloring eggs. This was the first year he really wanted to do it. He and Uncle Ryan colored eggs together.

Coloring eggs

Later in the evening, Andy, Erin, and Ben showed up after being in Bellingham. We ate dessert and the kids got to play together for a little while.

Ben

Amanda went to bed and then the boys were left. Eventually, Jonathan and Ethan fell asleep. They were so tired. The pretty much slept for the rest of the night, even when we got them in the car and took them home.

Ben looking at Ethan sleeping

Tired out Jonathan

The next day, the boys opened their eggs from the church egg hunt. They ended up each getting a special cross egg that they were supposed to bring back the next week for a prize which turned out to be bubbles and a box of chocolate eggs.

Opening the last of the eggs

The special cross eggs

What a fun and full Easter we had this year. The boys were really into the Easter egg hunts and Jonathan was a lot less picky then he has been in the past. Holidays just keep getting more fun and eventful every year.

-Dina