Update

Big news about Daniel today. I don’t know if he’ll continue this behavior or go backwards for awhile, but we made some progress with food!

Daniel has a feeding tube, because he’s scared of food. He has had enough choking and sputtering and force feeding for a few lifetimes. We didn’t blame him and he’s been thriving with a feeding tube. We’ve taken a gentle therapeutic approach to food and he’s made great strides. Some things he does now that he wouldn’t do before:

1. Hang out in the kitchen or dining room
2. Watch others eating
3. Play with food
4. Help cook
5. Hold his food that I’m feeding him through the tube
6. Smell food
7. Reflux his food immediately after eating in order to taste it and hold it in his mouth.
8. Smell and touch food held in a spoon

And the big one that came today…. he touched his tongue to a spoon with soup in it three times during a meal!!!! (I was feeding Jordan the same soup Daniel was about to eat and letting him smell the soup in the spoon… desensitizing his reflexive fear to the spoon… and asked if he wanted to touch his tongue to the spoon. And he did!!!!)

This kid is up 10 pounds from a year ago. That’s half again from his body weight of 19 pounds last year. He’s so much stronger. He’s learning how to navigate with his wheeelchair… both the practical bits with bumps and slopes when we go places, but also things like learning he’s supposed to stay near me, understanding instructions and reluctantly learning not to run into people and things. He’s walking so much stronger! He can walk sideways just leaning his hands on the wall… he’s so much steadier than he used to be. He seems to stand for longer than before too. I’m looking forward to finding and showing him videos of how other children with straight legs get from sitting to standing on their own. (Some people just can’t do it without help, but I’m prepping a few things to make it easier for him to learn. Such as watching videos of other people with similar bodies.)

It’s exciting times. The whole family deserves an update… each of my girls, Jordan, Brian and me. But I’m going to settle for this now. Proud of this little boy.

Here are some pictures!

Halloween:

You can’t tell that Anna is a Koala bear. But she was.

Ninjas run in the family. I decided we weren’t doing Halloween this year. Until 5pm on Halloween.

Look…. no ribs showing!

His back 6 months ago… maybe 5 pounds ago?

Holding and smelling a fruit! (And probably tapping it on his front teeth, because that’s what he does with most hard objects)

Awwwwwwwww. Daniel October 2017 in Bulgaria

I wanted to compare him laying on his back to what he looked like a year ago in Bulgaria. It’s a slightly different angle… but take a look at the edge of his ribcage and see if you can see the difference in his pectoral-to-shoulder area. Appropriate padding looks GOOD on him.

October 2017 – Heartbroken eyes and heartbreaking weakness. He easily wore size 24 month clothes and size 3 diaper. Size 6 diapers now and I wasn’t able to zip up a size 3T winter coat the other day.

Soooooo…… my children may have spent their money on stick-on mustaches at the dollar tree. I think they made good use of them. hehehe

Our pretty kitty, Boots.

Anna used hair gel to give Daniel a cute mohawk.

Remember this wan little face from October 2017 in Bulgaria?

Jordan is usually a happy kid when he hangs out by the space heater by my desk!

He did it!!!!

Another first! Daniel participated in some on-paper-desk-schoolwork!!!!! He colored and he did stickers! He tried to do what I told him and was proud of himself!

Carolyn was really excited about Daniel working at the desk when she noticed. He’s never been interested before!

Thanksgiving with Great Grandpa!

Playing a board game on Thanksgiving.

We got our Christmas tree today! These three kids were the primary decorators and it looks amazing!