Buzzing…

Tonight Becca decided to buzz her head.  The hair falling out  - hair everywhere – was not a good experience.  Not at all.  Better to have it short.  She had tried to get it styled to hide her bald patches, and it did for a couple of days, till new patches showed up.  At this point, she’s afraid it’s all gonna go.

Sweet Jessi (while holding sleeping baby Bennett) overheard our phone conversation and verified that Becca was going to cut her hair off.  Yes, I affirmed.  Well then, Jessi wanted to as well, as a sign to her sister that she was with her, that she supported her 100%.

So tonight I buzzed off Jessi’s hair and Becca’s hair.

Two different reasons to buzz their heads – two beautiful daughters of mine that I love so!

Randomness

because life is random..

Ordered Kai some tiles that fit on the leap frog that have braille on them!!!

Intro to the alphabet…

Holding our baby brings us such joy!  Ellie is so cute with him.  She calls him “Bobo” (brother)

What a snow day (really an ice day) looks like at our house..

New glasses!!!!  She loves them!         Sammi is teaching herself to knit

Which I could capture the beauty of the ice encrusted world or the sound that limbs make when the wind blows – so pretty!

Oncology

I’ve been dreading this day – the day I take Kai to the opthalmology oncologist.  I even asked for prayers on Facebook.  Kai and I drove up to Cincinnati to a highly recommended specialist up there.  He reviewed everything I brought from China (in English – yea!) and then came in and talked to me.  He briefly examined Kai, but Kai didn’t really want him to, so he didn’t push it.

Kai has/had bilateral retinoblastoma.  He has received chemo twice.  He has the hereditary kind.  A hundred years ago, no one survived bilateral retinoblastoma.  He isn’t worried about any more tumors in the eye region.  He told me that the average person has a 24% chance of dying of cancer.  Kai has 50%.  He didn’t have radiation – that is a good thing.  The cancer we should worry about now would be aggressive tumors in the long bones.  We would notice those if he started limping.  But at this point, he feels Kai could easily be followed by a once a year check at a cancer survivors clinic or even a very thorough pediatrician.  Yea!  Good news!  We are going to move forward and not worry about cancer.  Yea!

The trip was long and confusing for Kai.  He doesn’t like walking aimlessly nor does he like walking through the cold – both of which he had to do in Cincinnati.  So we had a couple of meltdowns, but we got good news from the doctor!!

We talked about prosthetic eyes.  He felt that Kai should be able to get them when he is ready and when he wants them.  He even said that since his eyelids are closed, if he doesn’t want them, he looks good.  Socially, it might be easier for him with eyes, but only when he’s ready.

(read to the tune of a Llama Llama book:)

Kai Kai mad at Mama.                     

Eats his snacks and doesn’t listen to Mama. (well, Mama’s Mandarin translations)

(Can we say he’s 8.  He’s a boy.  He doesn’t understand the language. Everything is weird to him and he has no idea where I am taking him.)  But I want him safe – so yes, I was the model patient mother, but please no more temper tantrums in the middle of the street or in the parking garage (Yes, valet parking would have been brilliant. Except I had $3 and it cost $5.  So I’ll be more prepared next time!)

The Barrett Cancer Center is covered with great sayings:

Cincinnati – it always gives me a thrill to come around the hill and see that skyline!  (city girl)

Kai’s Evaulations

We are working on getting Kai into school.  Why working?  Well, if I just take him down the street to the local Elementary School, sure they would admit him.  He would be in a third grade classroom with all sighted peers – sounds kinda ideal or horrible!  Sweet guy hasn’t ever been to school – and he is totally and completely blind with no blind skills.  So while being mainstreamed may be my goal for him one day, today is not the day.  So we had to start with a referral for Special Education.  Which means the district meet with me, the vision specialist, a spec ed teacher and a gen ed teacher.  Of course, everyone agreed he isn’t ready for a regular classroom – but they have NO DATA on him AT ALL!  He is a stranger to them.  So we provided the documentation to prove his blindness.  That is one criteria for special education.  But they have nothing else.  So we set up some dates for evaulations at the elementary school that has the VI unit.  We went two different days – once for braille and once for O&M. We also had one in our home.  They are trying to gather information across environments.

The first one at school was on Monday morning.  It was pretty much a meltdown interspursed with some exploration.  She did get some good information about him though.

The second one at school was on Wednesday afternoon.  This time they had a translator, oh the difference a translator makes!  He complied.  He worked with the O&M, even learning some about the cane.

I have to say these ladies have been just so kind.  They are good women who really care about children, I can just tell.  Sweet Kai is starting totally fresh.  He just hasn’t been taught braille or O&M.  But everyone sees how smart he is!!  He is going to do so well.

So now we wait.  Reports have to be written.  Then we will reconvene the committee.  An IEP will be developed.  Placement will be decided.  And our sweet guy will get to start school!

I’m not naive enough to think that once he starts school, he will suddenly understand English and he won’t have any problems transitioning to school.  But he will get started.  At 8 1/2 years old, he will start school!  He will start learning – and that is worth so much to me!!

More Ice Pictures

It rained and rained and then overnight it got really cold…so we got an ice covered world.

Truly beautiful, especially when the sun finally comes out and makes the world sparkle!

Babies in jammies..

Eye Doctor

It’s that time of year again – gotta check those eyes.

Jessi – no change (thank you!)

Lizzy – new prescription

Sammi – new prescription

Joy – the only one who WANTS glasses, sorry babe, you are 20/20

So many people, yes Bennett was there too!  We survived – and no stores were injured!  Yes!

Cardiology

Every year we check out that heart.  And so far, every year we get the news that it’s holding in there!  Puberty is our next worry time for her repairs and her valves, but so far, so good.

She gets so scared, but she is truly so brave!  The doctor was trying to calm her down and say some cute things to her and she just grabs his stethescope and put it on her chest.  I know the routine, let’s do this! She truly is my hero!

I am a sucker for heroes!  So we stopped and got a cupcake!

Sweet girl, I love you and your misshapen heart so much!!

25th Wedding Anniversary

Jason and I didn’t get to do anything special for our silver anniversary – except go to the American Consulate in Guangzhou, but that just really wasn’t what we had in mind.

So today was the day!  The kids babysat and we went out.  It was all a surprise for my Jas – I planned it all.   I had been trying to come up with something special, but we couldn’t go anywhere overnight cause we are too new to Kai.  So when a member of my church was selling Broadway musical tickets, I jumped on them.  Perfect, I thought!  Combine that with one of his favorite restaurants and we should be great!

Well, I guess cause they were being sold by a member at church, I didn’t look into the show – like at all.  But in retrospect, that wasn’t a smart idea!  We were pretty much shocked for the first scene.  Yes, we did end up leaving.  We were pretty amazed, and not in a good way.  (Seriously, how can people yell about sexual harassment and the treatment of women and then go and clap and cheer for that kind of movie?)

We went on to the restaurant, a Brazilian Steakhouse – the kind where you can eat all of the steak you want.  It’s really yummy – and Jason loves it!  But before we got started, Jason and I bowed our heads to pray.  While holding hands, Jason talked to Heavenly Father about the show we had just seen, our shock, and then asked a blessing on the food we were about to eat.  I seriously could not love him more at that second – I know I’m weird and religion is extremely important to me, but Jason is really a quiet guy.  He isn’t one to go on and on about church stuff, that’s more me.  To sit across from this man, who had just walked out of a crazy show, and was now talking to his Father and God about it, I just felt so much love for him at that second!

And yes, the food was great – but we didn’t overeat.  Yeah us!

We decided to take in a movie.  We tried for Greatest Showman, but there were only two tickets left – on opposite sides of the theater, not exactly the way anniversary celebrators should sit.  So instead we saw Jumanji – which was so much better than the other show

I’m really grateful for Jason.  For 25 years we have walked together through life.  Life is crazy and messy.  I’m grateful for you, Jas!

Around the house

“Writing” with Ellie

It finally got warm enough to take Kai outside – we have an entire backyard that he didn’t know existed!  You can tell he hasn’t had a lot of experience with swinging, but oh my goodness, he had fun!

Look at my Bella at therapy – there was a time when she would NEVER have touched that paint with her hands!  So much progress little one!

Been having fun with the Instant Pot – chicken pot pie and French Onion Soup (super yummy!)

Of course, the Ellie pictures…

Sweet Kai will just sit where he is put ALL DAY LONG.  I don’t like it! I’m always trying to figure out how to change that.  Dancing was a hit!

Playing he is not good at, cleaning up, that is a specialty.

Isn’t he so handsome in his shirt and tie!?

Becca has been visiting her sweet boy – he just needs to eat now and he can come home!  Little Miss and her many bags

Kai snuggles                                       

Trevor and Angie came into town to help Grandma and Grandpa get moved in.  G&G just bought a villa home close to the church.  We got to see everyone – it was really nice!  Trevor went to a dance with the girls.  Angie took the girls to a movie.  There was jamming in the car.  They had so much fun getting to know Trevor again!  (and, of course, Grandma’s house looks great too!)

Kai in his customary spot on the couch, listening to TV and eating.

We found a new dentist and poor Jessi had to have a root canal/crown.

Isn’t this the cutest thing ever?  Sweet Jason with a NICU baby :)  Ahhhh…..Ohhh….

Took Kai in for his first appointment with Dr Agan, our pediatrician.  They had a translator on the phone which was great!  He did fine, except for his ears – he did not want her messing with his ears!  But I saw this poster while we were there – the white glow is the sign for retinoblastoma, which is the cancer Kai had.  So grateful word is getting out about it.  Too often it is fatal.  We lose friends on our Facebook group way too often.

Going back to the 15th and more snow.  Sweet Jason – his Dad’s snow blower is in our garage.  Jason was like a kid with a new toy!  He did our driveway, both neighbors and the sidewalks before running out of gas.  He was having so much fun! 

Joy loves the snow too!