He's so big!

Just being here brings back so many memories--all the worries, all the anxieties and all of God's provision. He was less than a year old when we first stayed at this hotel. We thought he'd have three surgeries and then go on to have a more typical life. Life hasn't turned out the way we thought but God's fingerprints are all over this big boy!

Our Dallas Home

Now Happy Camper

Window seat-check!
Best friends Irish & Elmo-check!
Food-check!
Last pic before they make me turn off phone.

Ready to Go!

We're on the plane!

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Zonked!

We're picking up our hamburgers in the drive thru line at McDonald's and even that didn't wake him up.

Sleepy Pianist

*taken at traffic light*
He is half asleep and still playing his keyboard.

Closer?

I turned the screen slightly to the left and he is still seated slightly to the left of the keyboard. This combination seems to be working for him. It seems that he has a preference for using his central vision is when gazing straight ahead or slightly upward. When he is doing a task that requires him to gaze downward, he appears to prefer using his peripheral vision on the left.

More Hmmmm....

Jack wanted to play one of his computer games so I positioned the chair to the left of the keyboard and screen. He hopped up out of the chair and is standing centered directly in front of the screen and he is only very slightly to the left of the keyboard. Maybe it's only activities where he must reach out that he prefers doing from the left?

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Things that make me go hmmm and doh!

Last night when we ate dinner out on the deck, Jack sat at his picnic table. I noticed that he positioned himself to the left of his bowl and reached out to the right to scoop his food. He ate his dinner with remarkable ease. There have been plenty of other instances where I've noticed that Jack has a preference for not reaching directly in front of his body.

AND we continually have an issue with Jack turning sideways in his chair when sitting at the table. We thought the turning issue had to do with him not wanting to use his vision or turning toward the sound of the music that we usually have playing during meals.

So this morning, I noticed that Jack came up to the table and pulled his chair to the left of his breakfast. Hmmmm....he ate his entire bowl of oatmeal with no difficulties finding the oatmeal and without a lot of spillage. He seemed to have a firmer grasp on his spoon too. And not once did he turn away from the table. I'm going to try experimenting with putting his food to the left of his mid-line and see how this goes.


I'm not sure if this is a vision thing or maybe has something to do with joint fusion related to Apert syndrome.

Asleep?

I'm not sure really but I'm not gonna go pokin' at him. I guess those books on tape combined with soft classical music are good for sleep.

Quiet Time

We're trying quiet time on nap mat "in the library" today. Wish me luck!

Where'd the bridge go?

But they took away our nifty bridge...

Hooray for swings!

They put the swings back up at our favorite local park.

Cautious slider

Jack loves to slide. He just doesn't love to slide fast.

Exploring surfaces

Jack is demonstrating his technique of exploring the ground around him using the cane.

Improper Cane Use

We worked on our O & M (orientation and mobility) skills too. Here's Jack demonstrating how not to use the cane to avoid falling as you descend down into a small ravine.

Balance!

Jack declared that we were working on balance by sitting on these little posts at the park. See? Even Jack knows "Life is Therapy!"

Hey There....It's Been a While

Hey there! Thanks for still stopping by even though the posting has become more than a bit erratic. It's been a busy summer and a busy fall so far and well...we just have a busy life....

Jack continues to have revolving eye and ear infections and congestion. We've treated with drops and oral antibiotics and we eradicate an infection or think we do and another crops up. We've now got him on oral Bactrim (an antibiotic that tends to cover for a lot of different types of "bugs") for now and we're keeping him on it to prevent more infections. Is it Jack's immune system? No, we really don't think so. Jack has what the allergist calls vasomotor rhinitis. Any little tiny particles floating around in the air (perfume, dust, dirt, pollen, etc) tend to irritate Jack's nasal passages and that causes swelling and congestion. Also, Jack's anatomy does not allow for adequate drainage of his sinuses or Eustachian tubes (even with ear tubes) so that's a lot of fluid sitting around waiting to get infected. The Bipap AVAP complicates things too. The Bactrim seems to be working. Our ENT and our family doctor have suggested that Jack having his midface surgery will clear this up.

Jack is in pre-K with Ms. Sunny again this year. Since we opted not to put Jack in kindergarten, Jack will not be receiving any therapy services through our local school district. Ms. Sunny reports that Jack is doing very well. He participates more and more in class. We are all excited to see how rapidly Jack is developing.

Without any therapy services, I have been functioning as Jack's teacher of the visually impaired (TVI). Ms. Sunny and I have covered the classroom with large print and braille labels. I have also been busy polishing my Braille skills and adapting all of Jack's favorite books. Also, I have been making large print-braille copies of the books they use in the classroom for their letter of the week as well as their colors and numbers. So now you might have a better idea of what I've been doing rather than blogging.

We are headed to Dallas for Jack's check-ups next week. He will undergo sedation for a MRI of his brain and the GI doctor will also take a look down his throat into his stomach to check on his reflux. We will then follow up with our Dallas ENT, the neurosurgeon, and Dr. Fearon, our craniofacial surgeon. We'll discuss with Dr. Fearon whether he thinks it is time to move forward with Jack's midface surgery.

We've had lots of goings on so I haven't give the full update of all our activities but just trust me we've been busy.

Thanks for sticking with us and keeping us in your prayers!

Awwww....

Does any mother ever get over the swell of love in heart when she sees her child passing the love on? I know it's just Elmo but that's where it starts...

Crazy hot!

See the big fat sweat droplets rolling off my sweet pea?