Merry Christmas! (and what we're up to now)

It's been a long long time since I was on the ol' blog!  Over two years I guess.  I can't possibly fill in all the details of the past two years, but wanted to post an update to catch everybody up on what we're doing nowadays.

 

I'm still teaching elementary music part time.  I took a leave of absence for a few months when we adopted Ezekiel in 2015, but returned to work in January of 2016.  I love being able to work part time and also have time to be at home with the boys.  TongJie began kindergarten in the fall of 2016 at a small K-5 Montessori-esque school which we LOVE!  He is in first grade there this year and learning and growing so much.  I also teach music at his school, just one morning per week, which is really fun.

After nine years at his old school, Jeff is in his second year teaching music at a different middle school in a different district than he was in before.  Now we both teach in the same school district.  He teaches 6th-8th grade band, orchestra, and mariachi and really likes it.  His students just performed at their winter concert last week and did a great job.

Ezekiel started preschool this year and is really in his element in a classroom setting - he loves it!  When he turned three in February, he transitioned out of the Birth to Three early intervention program that he had been in because of his low vision.  We inquired with the school district about having him evaluated for vision services around that time.  Because he doesn't have any cognitive delays and is extremely good at compensating for his vision impairments, the district did not feel the need to evaluate him or provide any services, but agreed to observe him in the fall when he started preschool.  Fall rolled around, and sure enough, the district TVI (Teacher of the Visually Impaired) went to his preschool class to observe him and saw the need for him to be evaluated for vision services.  It was a long process with a lot of observations and evaluations, but at the beginning of December we had a meeting for Ezekiel's IEP and now he is officially working with the TVI and an Orientation and Mobility (O&M) Specialist.  His TVI comes to our house once a week to work with him, and goes to his classroom to work with him a second day during the week.  She thought it would be a really good idea for Ezekiel to start learning braille, so now he is working with her on tactile and pre-braille activities.  If you know Ezekiel, you would not think he needs to learn braille because oftentimes it's hard to remember he even has a vision impairment.  He compensates really well, and his functional vision really seems pretty good.  However, his TVI pointed out that he's so eager to learn stuff now, like a little sponge, we might as well give him the option to continue with braille as he gets older if he wants to.  It will be nice to have a foundation in it, and nobody really knows what his vision is going to be like for reading as he gets older.  We do know that he needs quite a large font, needs to have the words 2-3 inches from his face most of the time, and needs lots of contrast and specific lighting to make it efficient for him to identify letters, numbers, and pictures.  Because of his nystagmus (involuntary eye movement), it takes much more work for him to focus, and his eyes fatigue much faster than most people's.  If he's already tired or stressed, his eyes move faster, making it even more difficult to focus.  If it's too bright, he pretty much can't see anything, but if the lighting is poor, he can't make out what's on the page either.  Plus, as he gets older, the font that he's expected to read will become smaller and he will need to use tools (magnifiers, iPad, etc.) to enlarge the font.  With the size that he will realistically need to enlarge it to, his TVI compared it to us trying to read an entire novel on post-it notes with only a few words per page, then trying to re-focus his eyes each time he navigates to a new page.  So far, he has begun working with a swing cell to learn the braille letters and how a cell is numbered.  He also has a braille typewriter now as well, which is pretty neat.  Of course, he doesn't know how to actually type the letters to form words or anything, but he likes to type "stories" on it and is learning to get comfortable with using it as a tool.  He and TongJie both like to use the brailler, and Ezekiel's TVI gave them both a stack of paper to use in it over Christmas break, with the instructions that they're each allowed to use two sheets of paper per day! 

Ezekiel using the brailler

One of Ezekiel's "stories" 

Ezekiel working with his TVI on the swing cell

Ezekiel's visual acuity is measured at 20/200 in one eye and 20/400 in the other.  Normal vision is 20/20.  Being legally blind is defined as 20/200 or worse in the better eye, so he just fits into that category.  With albinism though, acuity can change a lot depending on many factors (lighting, eye fatigue, stress, etc) so sometimes his eyesight may be better or worse than this.  This measurement was from his most recent visit to the ophthalmologist at Seattle Children's Hospital in September.

In addition to the new braille learning, Ezekiel is also working with his O&M specialist learning to use a cane.  Again, like the braille, if you know Ezekiel, you would think there is no way that this kid needs to use a cane!  But, looking further down the road to when he is older, there may very well be times that a cane will be really useful for him.  He won't always have me or Jeff or TongJie with him, and he'll need to be independent and walk places on his own.  As fully sighted people, we take for granted things like crossing streets.  He can't see the "walk" signal to tell him when to go.  And he certainly wouldn't be able to see someone in a car waving him across the street.  So a cane would be helpful in a situation like that, especially to identify him to drivers.  Facing into the sun while walking, he is rendered pretty much totally blind, so that would be another situation where it would be helpful to have a cane.  As he gets older, I guess we'll see whether or not he chooses to use a cane, but there is a specific way that it is taught, so it's good that he's learning it now while he's young.  He thinks his cane is pretty cool, and enjoys using it to "find" things.  It has a big rolling ball on the end as the tip so it easily rolls when he sweeps it from side to side in front of him.

So, if you see Ezekiel around town with a cane, yes it's for real, and no he's not totally blind :)

TongJie, you might remember if you've followed our blog in the past, had surgery to close his palate in 2012 shortly after we adopted him.  He had another surgery on his lip in 2015 when he was four years old, and we've known for a long time that the next surgery would be the alveolar bone graft, where they take bone from his hip to fill in the gap in his front gumline on his upper jaw.  Well, that bone graft surgery is going to be happening pretty soon.  We still don't know exactly when, but we're thinking probably in the spring.  We had hoped to get it over with a little sooner, like this winter, because he's not supposed to be very active for 4-6 weeks during recovery and we figured it would be easier to "take it easy" when the weather is cold and dreary outside anyway.  But now it's looking like it will be later than we'd hoped.  I have a phone appointment with the orthodontist from his cleft team at Children's on Jan. 11, so hopefully I'll know more after that.  He needs to have a couple of teeth extracted and I think they need to wait at least 8 weeks after the extractions to perform the surgery.  We're not looking forward to the surgery, but it will be nice to have it over with.  This certainly won't be his last procedure as he'll have several more in the years to come, but it's definitely a big step to overcome for a cleft kid.  According to his surgeon, this surgery works about 90% of the time, so in other words, there is a 10% chance that it could fail and he'd have to do it again.  In other TongJie news, he loves to draw and is really into race cars and the Cars movies right now.  He is also fascinated with geography and tall towers and knows all sorts of facts about which countries have the tallest skyscrapers and how many feet high they are.  He's not obsessed with trains as much as he used to be, but he still has a special place in his heart for trains and spends a lot of time working on the model train set at Grandpa and Grandma's house.  He's constantly on the lookout for miniature things he can use to add to the model set.

The boys dressed up as their own stuffed mice for Halloween!

So that's a little update on our life right now.  TongJie and Ezekiel are so fun and are keeping us very busy!  We hope all of you have a merry Christmas!