Wednesday, April 17, 2013

Quick update (not so short)

Disclosure- typos are at the phone's fault. The writer holds no liability.

Jack went to the eye doctor on Wednesday.  Oh, the screaming!  The mind-numbing screaming!

He had three different parts to the test.
1. Visual Diagnostic Exam. It might have a different name. A board the size of a piece of paper is held up. The board is white with a dark gray picture (outline of a duck). There are three boards with each picture, where the picture is either at the top, middle,  or bottom of the board. A picture is held up. If Jack looks at the picture, well, he can see it! Each set has a different picture. The changes occur with the size and darkness of the picture. The image gets thinner and lighter in color. Jack made it about half way through.  We were told he did just fine with the pictures. (Of course, he cried and screamed, clung to me because he was scared, and ABSOLUTELY HATED getting each eye patched for the final part of the test. Katie thought the pictures were funny and laughed and smiled at each one.
2. The second part of the test included eye muscle measurement to see how Jack's eyes were healing from the second eye muscle surgery.  The OD held up Jack's iPod with his light and did the exam. We also took Jack to the procedure room to look at the blotch on his left eye. Two of us held Jack down while he was looked at. Yes. There was screaming and retching. Eye drops were then put in Jack's eyes to dilate them. Of course, as soon as I sat Jack up on the bed he calmed down and noticed the clock, basket, and blood pressure test! He was dripping with sweat. I bribed him with a snack of BBQ chips. We got some lunch and moved to a quiet, open area in the hospital so Katie could get out of the stroller and snack and crawl and stand.
3. The OD completed the rest of the eye exam. I held Jack on my lap and kept his arms down while someone else held Jack's head in place and opened each eye. Yes. More screaming and retching but Jack was also calmer since receiving the dilating drops (they have a numbing agent). It ends up that Jack has eye pain.  :(  Dr. Tychsen, MD (he performed all three of Jack's eye surgeries) came in and finished on more specific tasks. We took Jack back to the procedure room. Again, two of us held Jack down while his eyes were closely looked at. Numbing drops were also placed in his left eye. Yes. More screaming and retching. Yes. As soon as I sat Jack up he turned off the noise and happily talked about the clock.

The results: Jack will be going back to the operating room this summer for the 'blotch' on his eye we have been following for a while since his last eye muscle surgery. His eye isn't lubricating and his lower lid isn't closing, causing damage to the outer eye. The blotch is over his pupil on his cornea. This can result in more damage, infection, and if damage over the pupil, vision loss. All of his symptoms (red eyes, rubbing them hard, extremely sensitive to all light) stem from the damage he already has. It's cause? CFC Syndrome, his cranial/facial structure. Luckily, we need to head to the OR for a teeth cleaning.

Tuesday, April 16, 2013

More Talkity Talkity

This morning, Jack kept putting Matlock on TV. I'm not really sure if he was just pressing the number '9' or if he intentionally kept returning to that channel!

At this very moment, Jack is putting block after block in his shirt. He giggles with each block!

*More sentences from Jack:

To Jason: "Daddy haircut. Mommy scissors."

To me: "Taste hand." (Jack grabs my arm at the table and licks and kisses it. He then pushes my arm on his cheek). "I love you."

As I'm throwing trash away, Jack tries to throw his Mickey Mouse bib in the can (He sits right next to the trash can). I tell him we don't throw away his bib and I proceed to put it in the laundry room.  Jack then says, "Goodbye bib. Goodbye Mickey Mouse." Then he starts to sing the Mickey Mouse Clubhouse theme song (in his own way).

I'm cleaning up toys and Jack is continuously asking for a Spongebob book. I'm still cleaning and he decides to say, "Bad girl. Spongebob book, please."

I'm feeding Katie and Jack is eating milk with his pump.  "Chocolate. Easter Bunny, chocolate. Mmmm."

Jack reaches up and pulls my hair and says, "ouch."

Jack reaches up, puts his hand on my neck and pulls me close. He hugs me tight and says, "I love you."

Jack grabs my chin and turns my head so I'm looking at him and says, "Hi, mommy." He then touches my glasses and says, "Glasses." If I'm wearing contacts he says, "No glasses."

He also likes to talk about poop and asks if different people, or things, poop. He also says that certain people are stinky!

Watch "Jack sings" on YouTube

Friday, April 12, 2013

Talkity talkity talk

First, I must share that Katie is officially pulling-up. She's 8 1/2 months. We're going to get on Jack to work on pulling-up as well. He has tried multiple times to pull-up at the couch recently. I even tried to bribe him. He worked hard but never made it to his feet. We'll be working more and more each day.

Jack has grown. He hasn't been measured for a while but National Seating and Mobility came and 'grew' Jack's KidKart Xpress. He was practically hanging off the seat. Not very safe for bus transport...

Jack is talking up a storm. I feel like I keep saying this, but he is saying more and more. He has expanded his vocabulary to include some very important words: I, the, a, that, this, my.

Here are some amazing sentences!
I want my braces on.
School tomorrow?
I want bar-b-que chips.
See that?
That is a circle.
That is a heart.

Jack has even been answering some questions!  Huge improvement.

I don't really know if I should say this, but I would rather have a Jack that can communicate and have a general understanding of the world than a Jack that could walk but not participate in his world.

Please send out thoughts and prayers for the CFC Syndrome population.  There are several children struggling with illness or other complications.

Tuesday, April 2, 2013

Now We're Movin'

Wow...
Do you really want to know? So...first Jack was constipated and was probably impacted and now...well...he is going, going, going...
Three times, Sunday. Three times, Monday. Six times, today. I would be happy but, my gosh, the stink...ick!!! The poor trash man. Between Jack and Katie, he'll have to toss out 17 poop bags (just since Sunday! More like 25 since the last trash day).
Anywho...
Here are some recent pictures. Easter, Jack's skinny body (not happy about that), candid picture from school, spring school pics, playing with the iPad (Writing this from my phone so there's no guarantee they are in order or right-side-up!).

Monday, April 1, 2013

Good articles

Here's a link to a recent edition of a great special needs magazine.  I recommend the articles about mental health and medical supplies.

April 2013 Edition