the book is finally in the USA

There's a book, titled "The Boy in the Moon: A Father's Search for Disabled Son" by Ian Brown. Mr. Brown is the father of Walker Brown, a child with CFC Syndrome. Many CFC parents have been waiting for the book to come to the USA for A VERY LONG TIME.
I've got it on my kindle for Android. I'm on chapter 4, and I just have to share this with you.

Let me backtrack: When Jackson was born, his right eye was shut. He had that mass on the back of his neck and his cheek, eye, and ear were all pulled in that direction, along with his neck. Evelyn always said that Jack was born with "one eye open" and he was sick because of it.

from "The Boy in the Moon": One day, I asked [Hayley] why she thought Walker couldn't walk and talk at the age of two. 'I could walk when I was one because I was born with two eyes open,' she said. 'But Walker was born with only one eye open.' She was four."

This entire book is reality. It's my life. It's Ian Brown's life. It's other CFC parents' lives.

Jack has a low grade temperature and may not be having surgery on Tuesday.

it's official

well...it's official. I can say that jackson says my name intentionally. I can also say that he has progressed to the next stage of sign language, on at least one word. jack now says "mo" (more) for tastes, instead of simply signing "more".
so awesome.
we now focus on signing "please" after saying "more".
sweet!

may 3rd is jackson's eye muscle surgery.

and we have a date

ahhhhhh. we have a date for jack's eye muscle surgery. may 3rd. now I have to try to schedule the sedated echo and, of course, the adnoid and tonsil removal.

oh, and jack likes blowpops!

Good Decision

so. . .I've been waiting, and waiting, and waiting. . .and I've finally given up. I've been waiting for a date for Jackson's two surgeries, but, well. . .you get it. . .I'm still waiting for the dates. . .
Jackson had his eye appointment on Friday. This appointment was the follow-up to look at Jackson's right eye muscle. The result was what we all thought: Jackson needs surgery on his right eye muscle. There is some talk that has to been done with the orthoptist (Dr. Giribaldi, we saw him on Friday), the director of opthamology (Dr. Tychsen, the surgeon that performed Jackson's tear duct probe in Dec. 2009 and can work on Jack in September), and the Attending (Dr. Leider, the surgeon who can work on Jack in May). Once a surgeon works on a patient, he/she usually performs any future surgeries. We need permission for Dr. Leider to work on Jack. I'm hoping for a call with a date Wednesday afternoon.
Once I receive this phone call, I can call the ENT (Dr. Ettema) and schedule the adnoidectomy and tonsilectomy. Of course, there needs to be ample time between surgeries because they are at different hospitals. The eye surgery has a very quick recovery and the ENT surgery can take 3-4 weeks recovery.

And. . .we get to work in a sedated Echo!!! Yippee!!! Yes, I'm being sarcastic, as usual. Jackson went for his echo and, as usual, gave a very entertaining performance, making the echo near impossible for some necessary images. The cardiologist ended up with the probe and at one point, finally decided that it wasn't working. Here comes my vent: I REQUESTED GIVING JACKSON A CALMING DRUG, VERSED, BEFORE THE ECHO SO HE WOULDN'T BE SO STRESSED. THE CARDIOLOGIST DOESN'T LIKE TO DRUG THE KIDS AND SAID HE'D GET IMAGED HIMSELF IF NEEDED. I'VE ASKED FOR SEDATED ECHOS IN THE PAST. AFTER 8 ECHOS, FINALLY. . .ugh! The plan is to have the sedated echo performed during one of the surgeries. If neither surgery happens by the end of May, we'll have to schedule the sedated echo separate.

And, to end on a good note: Jackson had feeding therapy Monday afternoon. Evelyn was eating Oreo cookies and I figured, "what the heck, might as well give Jack one". Good decision. Here are some pictures from today (Tuesday)!

too cute!

 

I'm sure this picture is small and hard to see, but I've got a story to share. That blue circle with the yellow star...the projector? Jack has that. We place it in the crib and Jack turns it on and off. It plays music with the red star and water sounds with the yellow star. Not only does Jack turn it on and off, he also holds onto it and shines the image all over his room! His room will be dark, and we'll walk by to check on him and he'll be giggling and moving the image around the room (on the ceiling, the walls, directly into his face). We'll put him to bed at 8pm and at 9:30pm he's still playing with the projector. It's sooooooooo silly. I'd love to get a video of it to share!

Oh, and I just left Jack's room. I had to give him his CoQ10 and vitamin, along with making sure that he has enough formula and his pump is set correctly, and to make sure that his tube isn't wrapped around him, or has come undone (which has happened WAY to many times).

Jack is cuddling with his projector tonight. The poor thing fell asleep on his side while holding it!

how cute!

tee hee hee

We went out and purchased Jackson a powered ride-on toy. It's very small and for kids age 18-36 months. We charged it overnight and gave Jack the chance to ride it.
This is what it looks like:

There's a problem...
The sound of the motor makes Jackson SCREAM!
I'm going to give it a week. If it's a no-go, does anyone want to buy it from me? It's brand new! ugh...

I've been painting pottery at a local store. I've created two plates for the silent auction at the CFC Conference. Here's a picture of the first one.

I get to pick up the other plate on Friday. I'll share a picture of it once it's home.

Oh, and here's something new about Jack.
Silly Jack: tee hee hee!
Jack was at school, sitting at the table during snack. He continuously pointed to each child and said, "bah-bee," and then giggled each time. There were two kids that didn't like being called  a 'baby'. Jack pointed to them over and over and giggled. Our little Jack is starting to show his personality at school!

I went for a walk, alone, at Lake Decatur this morning. It was wonderful...