Monday, December 18, 2017

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!   

Wednesday, August 12, 2015

Summer Update

Today is Wednesday, August 12, 2015.  It's hard to believe it's already the middle of August!  Ezekiel has been in our family for six weeks now, and we've been home from China for a month.  The time is already flying by, and I know it will continue to do so more and more, so we are trying to make the most of every minute of our family time together this summer.  

Ezekiel is progressing by leaps and bounds in his eating, and now he sits in his high chair and eats meals with the rest of the family every time.  He does not always eat what the rest of us are eating - sometimes he will just eat one of his healthy muffins (we've tried zucchini/banana, carrot/apricot, beet/apricot, and zucchini/carrot, and so far he likes them all) - but it's becoming more common for him to eat a chopped-up version of whatever we're eating.  He still loves his bottle, and we give it to him usually four times a day still.  But the way he's eating is really quite amazing compared to just a month ago - we did not imagine he'd make progress so quickly!

He says several words now: Dada, Mama, gege ("guh guh" - big brother in Mandarin), "uh" (up), "duh" (down, or done), "buh" (this is his catch-all word that usually means he wants something, or wants more), "dodo" (doggie, for Albert), and "nar nar" (bottle - that's what they call it in China),

He gets around really well by walking, but still crawls sometimes, especially if it's in an unfamiliar setting.  He's pretty good at catching his balance if he starts to fall, but he does crash into things sometimes although not as much as we expected for a kid with impaired vision.  Ezekiel has started to wear his hat sometimes, but only if we make him keep it on and he cries for the first few minutes and then resigns himself to the fact that he has to wear it.  It's not always practical to use an umbrella to shade his head from the sun, like if he's in a swing for instance.  Or if we forget the umbrella, ha ha.  We're still working on trying to get him to wear sunglasses, but that's not as important as the hat, since the sunglasses are mostly just for his own comfort in the bright outdoors.  

TongJie, for the most part, has been settling into his role as "gege" (big brother) quite well, and that includes getting jealous of Ezekiel and bothering him a lot (and reveling in the fact that Ezekiel is crying yet again), but also making him laugh, helping him, and bringing him toys.  It's funny how very different their personalities are.  TongJie, although quite competitive, is generally pretty easygoing about most things and it's usually not too hard to convince him to do things that we want him to do.  Ezekiel, on the other hand, is very strong willed and definitely NOT easy to please (at least not yet)!  I'm sure we'll see more and more of his personality come out as we get to know him better and he becomes more comfortable with us.  But I think it's safe to say that he's going to be strong willed.

Here are some pictures of what we've been doing lately:

Ezekiel eating some beet apricot puree - yum! 

TongJie playing in the water in our backyard on a hot day

TongJie likes to play with his train set in the carport where Ezekiel can't mess it up

TongJie and I slept out in our shed the other night - sort of like backyard camping, but without having to set up the tent :)

Jeff and the kids at Smallwoods

Ezekiel on the swing at Smallwood's

On a walk to Wenatchee Valley College - they have lots of nice grassy areas

Ezekiel having fun

TongJie and his car for the zucchini race at the farmers' market

Ezekiel in the swing in our backyard

More swinging - at Pioneer Park

TongJie at Pioneer Park

Both of them can ride in the stroller

Sunday, July 26, 2015

Sunday, July 26 - What we've been up to lately

We've had Ezekiel in our family for a month now, as of Saturday.  He's learning new things all the time, and we're all getting more and more used to our new family dynamic.  Just as suddenly as Ezekiel began walking, he suddenly began eating some real food last Tuesday, much to our amazement (and relief)!  TongJie and I decided to try making some muffins, since Ezekiel seemed to be getting slightly more tolerant of bready things.  I figured we could sneak a lot of nutritious ingredients into the muffins that would give Ezekiel some much-needed nutrients.  Up till then, we could only get him to eat (drink) formula with some rice cereal mixed in, and the Gerber Puffs or Baby Mum Mums which contain barely any calories or nutrients because they're mostly air.  Our first batch of muffins was zucchini and banana, and we broke off some little pieces of the muffin to put in Ezekiels mouth.  After spitting out the first couple of bites, he finally was able to keep one in his mouth, and I guess he decided he liked it.  The funny thing is, after he realized he could eat the muffin, he's been getting a lot better about trying other textures as well.  He's eaten some yogurt, baby food, beans, and peaches, with mild to moderate success.  But the muffins have been his new favorite food, which is great!  TongJie helped me make a second batch and we tried sweet potato, carrot, zucchini, and banana.  I also significantly reduced the amount of sweetener (we use maple syrup), and Ezekiel still likes them!  He's even beginning to be able to pick up pieces of food with his hands and put them into his mouth.

We had an appointment on Monday with Dr. Bledsoe at the University of Washington Medical Center.  Dr. Bledsoe specializes in international adoption, so she is very knowledgeable about children who come from orphanages and their unique medical situations and needs.  She is the same doctor who reviewed Ezekiel's medical file with us over the phone back in November when we were first matched with him.  Dr. Bledsoe has a few other patients who are children with albinism also adopted from China, so she seems like a really good doctor for Ezekiel for the next few months until we transition him to a local pediatrician here.  She was really impressed with Ezekiel's growth and development and thinks he's doing great, so that was good to hear!  He is in the 50th percentile for both height and weight, which is quite impressive for a child who has been in an orphanage in China.  The not so fun part of the appointment was when Ezekiel had to get shots and then get a lot of blood drawn.  We were expecting the car ride to be just horrible, but it actually wasn't too bad.  TongJie stayed with my parents that day, so he had a fun day with Grandpa and Grandma and didn't have to ride all the way to Seattle and back with a grumpy baby.  As it turned out, Ezekiel slept a lot of the way, so he wasn't crying the entire time.  I sat in the back seat with him, so that helped a lot too.  Since that day, we haven't had as much success with the car.  Pretty much every time he gets in, he cries and screams the whole time.  It makes it no fun to go anywhere with him, but there's nothing we can do because he just has to get used to it.  TongJie puts up with it pretty well, but he did ask me on the way to church this morning, "Mama, can you make Ezekiel stop crying?"  . . . I wish I could.  It's the kind of screamy, frantic cry that just puts everyone on edge.  Earplugs do help a little.

Ezekiel is walking really well now, and even walks on his own outside.  It's hard to tell how his vision is.  I think it really depends on the lighting, because sometimes it seems like he can see pretty well, but sometimes it's obvious that he just doesn't see stuff that other people do.  His depth perception is very inaccurate, so usually he can see if something is in his path but can't tell exactly how close it is.  He's pretty good about being cautious when he's walking or crawling.  At first we were watching him closely and always ready to intervene when we thought he was going to hit his head on stuff, but we realized that he doesn't hit things that often so we've become a lot more relaxed about letting him wander around and explore things.

I took Ezekiel to church for the first time this morning and he was a little overwhelmed but did great.  TongJie, who loves to dress up and usually wears ties or bow ties to church, wanted Ezekiel to wear a bow tie to church too.  The bow tie didn't stay on Ezekiel much longer than the time it took for me to take a couple photos of the boys.  I told TongJie he's going to have to work at convincing Ezekiel to like bow ties, ha ha!  TongJie has really been doing a good job of being a big brother.  It's a difficult adjustment for him, but he's been doing quite well, especially the last few days.  He likes to try to make Ezekiel laugh, and he's so helpful to run and bring toys to Ezekiel to try to make him stop crying.  I took a picture of them walking together in our backyard.  Ezekiel still doesn't want to have anything to do with holding hands with TongJie, but he sometimes tolerates TongJie holding his wrist and walking with him.  They're pretty cute together!

I feel like I'm starting to get back into a normal routine again with stuff other than taking care of a new kid.  I've gone running twice now with Ezekiel in the stroller.  The first time was much more successful because I just ran in our neighborhood, so no driving was involved.  The second time, I decided to try going to the loop trail, so that meant putting Ezekiel in the dreaded car seat, then the stroller, and then the car seat again.  That did not go so well, so next time I'll just take him around the nearby streets again.  I've also had a chance to sew two tee shirts for Ezekiel lately.  I've not been brave enough to try the kind with a normal neckline yet because I'm afraid his big old head won't fit through the neck opening, so I've made both of them with the envelope style of neck opening.  I don't like that kind as much, but it looks okay for a baby shirt, and at least I know I can easily get it over his head!  TongJie helped me with the design on one of the shirts.  We taped a random diagonal design on the front piece with strips of painter's tape (after I cut the fabric but before sewing), then dabbed paint all over it by dipping crumpled up newspaper into the paint.  When the paint was dry, we peeled off the tape, and it turned out pretty neat.  TongJie loves to do painting projects, so he really got into it and had a great time.  Now I want to do one for TongJie, but all he wants is a Thomas shirt!  We've also been going for walks as a family and that has been fun.  Ezekiel is hit or miss with the stroller - it depends on what kind of mood he's in if he's going to scream the whole time or be okay in it.  TongJie sometimes gets a little jealous because he wants to be in HIS stroller.  We thought maybe he'd be thinking that riding in a stroller is too babyish now that he's almost five, but that's not the case.  A couple times, I've carried TongJie in the Ergo pack on my back while Jeff has pushed Ezekiel in the stroller, and TongJie likes that a lot.  He looks kind of funny in the Ergo pack now that he's getting taller - his legs look so long dangling down like that.

Here's some pictures of what we've been up to:

Ezekiel at his doc appointment last week
Trying some yogurt - he successfully took a few bites before spitting it out
Dressed up for church in their bow ties.  Ezekiel does not feel the same way about bow ties as TongJie :)
Getting ready to go running
We went to Smallwood's and TongJie had a great time in the "trike track"
TongJie still fits in the bumblebee swing at Smallwood's!
Ezekiel would only go in the wagon if he was on my lap.
Checking out a leaf in the back yard
TongJie and Ezekiel walking together in the back yard
Going for an evening walk
One of the shirts I made for Ezekiel
The other shirt I made for Ezekiel - this is the one TongJie helped me with

Thursday, July 16, 2015

Thursday, July 16 - Already walking!

We've gone for a few walks now, and I think it's safe to say that Ezekiel feels the same way about his stroller as he does about his car seat: he hates it at first (usually lots of crying is involved), but then seems to get used to it and ends up being okay during the trip.  TongJie has been enjoying being outside and riding his bike and stuff; we all really missed that when we were in China.

In the stroller for the first time - this is after Ezekiel had calmed down :)

TongJie on his balance bike

All of us on our first walk together, photo taken by Lisa Stroming as we were walking by their house

We also set up our slack line in our backyard the other day, which is another way for TongJie (and me and Jeff) to get some exercise and work on balance and coordination.  It was a Christmas present from my parents and is really fun!
TongJie walking on the slack line (he used to call it the "snack line," but now he says it the right way)

Ezekiel is wearing the little shoes that TongJie used to wear.  I thought they might be too small for Ezekiel, since he's quite a bit bigger than TongJie was, but apparently his feet are not as big as the rest of him.  If the shoe fits . . .
Ezekiel wearing the shoes - his little legs are a bit chubbier than TongJie's were

This is a photo I found of TongJie wearing the same shoes when we very first bought them.  They looked a little newer back then.  They've gotten some good use I'd say.
The big news from the last couple of days is that Ezekiel is walking now, all of a sudden!  It's kind of weird, like it just clicked for him and suddenly he knew he could walk on his own.  With TongJie, it was like a couple steps at a time between me and Jeff, and with a lot of coaxing he slowly worked up to being able to walk more than two or three steps.  With Ezekiel, I think developmentally he was more ready to walk, but the reason he wasn't trying much was because of his low vision.  Once he got the layout of our house figured out, he got brave enough to walk where he wants to go.  The only place he's walked so far without holding onto someone's hand is in our living room and kitchen.  I'm trying to post a video, so hopefully it will work.
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Speaking of videos, I'm going to try to post one more because it cracks me up every time I watch it.  TongJie got out his collection of musical instruments this evening and put some bells around his ankles and then proceeded to gather up all the jingly instruments he could hold in his hands and was doing a very loud and silly dance.  The funniest part is how Ezekiel is just sitting in the background looking so serious and confused.  He wasn't really scared or anything, it's just funny how he looks in the video.

Finally, a picture of both boys this evening sitting on the kitchen floor, each with a light-up baby toy that plays music.  They were each holding the toy up to their ear to hear the music, and it sort of looked like they were trying to talk to each other on the phone.