Thursday, October 20, 2016

Our Special Guy

Joey is amazing. AMAZING.  He is the most laid-back person I've ever met. By far the easiest temperament of all our children!  Which is such a blessing, because our hands are full!

We had heard that people with arthrogryposis (AMC) tend to be very happy, and that is definitely the case with him. He's content with one toy for long periods of time. He just loves to be with us.  If I have to tell him no, he says "Okay Momma".  He thanks me every time I feed him and help him. He apologizes.  Truly, he is a gem. He is sweet and kind and gentle; he's an example for our other kids, that's for sure!

Although he's Sam's age (only 4 months apart), he is more on Allie's level right now as far as how he likes to play. They get along very well.  He also adores Ben and Ben is unbelievably kind and patient with him.  Academically he has had no schooling, so we're working on letters and numbers with him and Maggie together.  It's not all sunshine, though. He has no concept of personal space and is very touchy-feeling and grabs everything. He's often taking their toys, knocking over their towers, and in their faces.  He also has to touch every little button everywhere we go. In some ways he's like a toddler exploring the world. He also has no problem tattling on them, and them on him. True siblings!

Physically, he's had a lot of appointments trying to figure out his complex needs. We've seen the hand doc, foot doc, adoption clinic (5 hour appointment that included OT, adoption doc and a social worker!), genetics (very interesting appointment), PT, wheelchair fitting, pediatrician (3 times already, thanks to infections), Rehab, Audiology, Ophthalmology... he had 16 vials of blood drawn, xrays and we had to collect stool samples on 3 different days, in between rounds of antibiotics. Now when I ask him to put on his shoes for any reason, he says "No Doctor!!" Poor kid.  It was all crucial to start figuring out his treatment.  We also wanted to get the initial evals done before he starts school so he doesn't miss more schooling than he already has.

Things should calm down quite a bit now (knock on wood!!!) as we're nearly done with all the initial appointments.  We have somewhat of plan in place for OT and PT, and have a series of castings for his feet planned for early next year to hopefully help his feet to be more flat. 

Sometimes he seems excited about starting school, other times he doesn't want to. He wants to be like the other kids, but I think he's also nervous. We're hoping he'll start school in a couple of weeks, and he'll start half days. He gets worn out very quickly (physically and emotionally), so I think half days will be more than enough at first. 

We've spent nearly every moment of every day together since Sept 5. Bonding and attachment is going pretty well. Initially he was overly friendly with everyone we came across. He would sit on stranger's laps out in public and expect them to care for him.  I'm so glad we're taking this time for him to just get acclimated to our family before moving on to school, etc. As much as he and I have both hated all the appointments, they've been a great time for us to bond and for him to learn that I'll be taking care of him, and that we always go home.  We're still careful in public and try to remind him that Momma and Babba are the ones who give hugs and help him.

He's calm and peaceful when we're at home most of the time, but being out in public is still a big challenge. He continues to be pretty wild when we're out and about.  He gets hyper and doesn't mind well when we're not at home for some reason. He gets in the kids' faces, hits them, tells us no and still doesn't stay with us very well. When he's "in their bubble", he sometimes gets tripped up on their feet and falls...and then blames them.  I'm constantly trying to get my phone out for the translation app to give him reminders to keep his hands to himself, watch where he's walking, etc.  Plus he tires out from walking very quickly and can't navigate stairs on his own. A quick trip to the store is exhausting!

Communication improves every day. We use a Google translation app to explain to him things that are going on, but so far we can't get him to speak into it so we know what he's saying.  Most of what he understands is basic commands or ideas... he knows when we tell him to use the bathroom, put on his shoes, time for a bath, get in the car, Ben is at school, etc.

His list of English words he can say is growing rapidly as well. One problem we didn't anticipate is that he and Maggie spend lots of time together in the mornings, and he mimics her speech... which is not good considering most of her words do not come out correctly!  Some of his words so far: Ben, Samuel (always Samuel, not Sam), Allie, Maggie (comes out Meggie), Momma, Babba, Grandma, Grandpa, Uncle, brother, sister ("seester") okay, please stop!, all done, wait, hamburger, dumpling, hot dog, cake, ice cream, rice, noodles, chicken, chocolate (comes out choc-o-lete), Sank (thank) you Momma. "'scuse me" (excuse), "figh five" (high five).  His first sentence was "Shut up and dance with me" and he's as obsessed with that song as my other kiddos. :)  He calls dumplings airplanes and dogs are hot dogs. So, so cute!!! He always wants to make sure he knows where everyone is, he asks things like "Maggie to school?  Bus?  Babba work?" It's really remarkable all that he's figuring out.

That being said, I think he's extremely verbal in Chinese, and we're missing out on regular conversations, thoughts, questions, concerns, ideas etc still. At some of our appointments at Children's Hospital, there has been a translator and he always talks their ear off in Mandarin. That always reminds me of how limited our conversations are thus far, and I can't wait until we can understand each other to that extent! At the last appointment, he was adamantly asking the translator something. Turns out he was asking about 3 of his friends from the orphanage who were adopted before him... he wanted to know if I know them and if he can talk to them. Turns out, I do know where at least 2 of them are and I had the translator tell him that. He said he wants to call them and asked for their number!  :)  I'm working on hopefully setting up a video chat for them! 

I think he's processing everything that's new and at the same time remembering all that he's left. That's got to be a hard place to be. He sleeps very long and very hard at night, I think that's when he grieves and works through things.  Sometimes he's restless and cries out in his sleep. I wish I could talk to him about how he feels, but eventually we'll be able to.

Some of his favorite things: oranges, dogs, playing outside, Spiderman, cookies, rice, noodles, dumplings (he still prefers Chinese food to American), eggs, remote control cars and airplanes, trucks, cars, diggers and his brother Ben.

He is always thinking of others.  Several times when getting stickers after an appointment, he asks for 5, one for each of his siblings. On Maggie's birthday, I asked (via the app) for him to make her a card. He drew her a picture and then disappeared. I found him in the girls' room, copying her name off the wall on to the card. Unbelievably sweet!!  If he sees me cleaning, he comes to help without me asking. He always cleans up after he eats. He's patient with needing help and worried when one of the other kids is upset.

We hit the jackpot, folks!!

Our aging pups.

His first ice cream at the Whippy Dip!

His first time at church. 
Amazing to be there with him after all the love and support they've given us! 
He sat with us the first time, and it was quite crazy. We had to leave the service for him to poop, he fell in the lobby and kept begging for food. It was a long hour!

We are a small parade walking to church.

Flying RC planes with Grandpa.

We use the wagon a ton for walks and getting around in public.

Making pumpkin bread with FIVE helpers. 
I'll not post the one of my expression during this "fun" activity.

Swimming in the front yard on a warm September day. 
The kid loves water!

An outing with my two 8 year olds-I love this age!

Trying out an adaptive stroller that a friend gave's perfect for him!

He often requests noodles instead of the yucky old American food. :)

Our spot on the porch, waiting for the bus to come.

These two remain best buddies.

Working on getting out winter clothes for 5 kids.

Yet another appointment, still smiling.

This girl is now 4 years old! 
Can I get a YIPPEE for being done with the Terrible Threes 
(although she still acts 3, I'm hopeful that some logic and reason will kick in soon)!!! 
And no more diapers!!! Hallelujah!

Lunch at an Indian restaurant with my adventurous eaters. 
We're still working on manners... he still burps loudly in public, slurps food with his mouth off the plate,  touches food on the buffet...we are quite a distraction everywhere we go.

First hayride!

First time going to class at church. Allie stayed with him in the boys' class.

First firepit and roasted marshmallows!

I treated them to Larosas pizza (by myself!) when they were off for Columbus Day. Thankful for a great waitress who helped keep an eye on them, as there were multiple potty trips and lots of messes.

Sometimes a wheelchair is easier, especially when walking long halls at the hospital.

Pumpkin patch! He loved being on a farm for the first time. 
He takes in every new thing with such awe and joy!

Picked up "real" Chinese food after an appointment. 
He stuffed himself silly on fried rice, noodles and dumplings.

Stopped in at school for a few minutes and he insisted on wearing his empty backpack, and put his empty lunch box in it. He wants to do everything just like his siblings.

Allie is a sweet helper for him at church.

This is a great outdoor toy for him. 
He can't do bikes and scooters, so we're hoping to find some more things he can do.

Brother Ben gives him a ride around the yard. 
They really are best buddies.

Maggie goes to school in the afternoon, so these 2 have a 
lot of time together in the mornings. They both love to craft.

Offered to help me clean the garage.

Working on numbers and colors.

1 comment:

  1. The Colemans did hit the jackpot! God is good! Take care and enjoy your family! Love and hugs, Nancy