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?

And the winner is......

Chantal (aka commenter # 6)! Chantal, please contact me at empwrn@bellsouth.net with your email address so I can tell you how to claim your prize. Thank you everyone who entered!

Doing what he loves

"walk in shade!" Please note that he is doing this outside the indoor playground I brought him to because it's too hot and humid outside. *sigh*

Sleep Study Time Again!

Jack had another sleep study last night. He had little preparation (it was a last minute work-in because of a cancellation) but he handled it like a champ. I took the pictures from my previous sleep study post (see left sidebar) and made a little book telling Jack where he could expect to have wires. We used the word "wires" instead of "stickers" because, in a hospital setting, Jack tends to hear only the "stick" (as in getting stuck for an IV or blood draw).

We reviewed the book before we left the house and then reviewed it when we got to the hospital and once more just before the technician began hooking him up. I used the exact phrasing I used in the book (wires on your face and head and probe in your nose, wires on your chest, wires and tape on your legs, straps on your chest and tummy) as the technician wired him up. The sweet technician realized very quickly that Jack did better if she just did her wiring and let me do the talking. He was so good with just minimal fussing and that was mostly because he was sleepy and ready to lie down.

He slept pretty well even though he is congested. They keep it super cold in the sleep lab and that always helps with his breathing. The pulmonologist wants to increase Jack's maximum inspiratory pressure to 26 since Jack still obstructs a bit even at 24. We'll do that tonight.

AND Dr. Lozano says that once we know a date for the midface surgery, we can come into the lab and adjust Jack's settings so he can wear nasal prongs instead of his usual face mask. He won't be able to wear his regular mask under the rigid external distraction (RED) device so we thought Bipap would not be an option after surgery. His obstructive sleep apnea is so bad that we were concerned that he might have to have a trach until we advanced his midface far enough. Dr. Lozano says that nasal prongs are not ideal for Jack and not a good idea for his general use because he is a mouth breather and his tiny nasal passages will make it pretty uncomfortable BUT the nasal prongs may help us avoid a tracheostomy after Jack's midface surgery.

So all in all it was a good study and we got great information.

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Fine motor work

An exercise doesn't work unless you do it. Jack's fine motor skills aren't gonna get anywhere sorting different shaped chips . It's not that he can't do it. He'll do it if you really push but he'll only do as many as you make him.
On the other hand, add something unfamiliar like pumpkin seeds to his regular dried fruit snack and you'll see some sorting going on.

Gotta Keep Elmo Entertained

We're on a trip and Jack is bringing along his pal, Tickle Elmo. He did not want him to be bored so he's "reading" Cars to him.

Mess maker!

After school today, Jack was dragging all sorts of stuff out and making a big ol' mess and lots of noise!

Sleeping Dream

Long before Jack was born, I dreamed of motherhood. I thought about what kind of parent I would be and how motherhood would feel. Psalm 37:4 says, "Delight yourself in the Lord and he will give you the desires of your heart." God has truly given me the desires of my heart. He planted in my heart the desire to be a mother. And then in his own good time, he made me a mother.

I had no idea what this would be like. I did not know that this evening my little sweetheart would throw a fit because he did not want to go to the bathroom. I did not know he would fuss his way through nighttime toothbrushing and face washing only to surprise me by running down the hall unprompted to his Daddy to say, "Night night".

I did not know what mixture of pride and pain I would feel as my sweet boy told me "Go sleep. Probe on toe." as if he needed to remind me that he needs his oxygen levels monitored as he sleeps.

I do not know what surprises this night or tomorrow might hold but I know that right now my dream is sleeping...

Little Drummer Boy

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Basketball star in the making

GIVEAWAY!!!!

Remember CSN Stores? They are the great folks that sent us our sweet picnic table. They have many fabulous products and brands from le creuset to Little Tykes.

And now they are allowing me to host a giveaway for you! That's right! You can win a $60 one-time use gift code to any of CSN's sites.

All you have to do is leave me a comment letting me know what you'd like to get if you had the $60.

A winner will be randomly chosen on Friday, August 13. Will Friday the 13th be your lucky day?

Dance for Me

During Jack's first outing with his cane, he was in a very dance-y mood. We were watching this video tonight and Jack was repeating David saying, "Get on down!" I got up and started dancing. Jack leaned back in his chair and said, "Mama's funny."

Ham buh guhs....zzzzzzzzzzzz

We just left the pool and are on our way to church. Jack is so tired that he fell asleep on the way. I am making our usual run through McDonald's on our way to church. Jack stirred as I pulled up to the drive thru. He said, "Ham buh guhs!!" And I started to answer him when I heard snoring.

All By Yourself

Because of continued nighttime breathing concerns, Jack still sleeps in a toddler bed next to our bed. That way, if anything happens at night, we are right there next to him to tend to him. It's hard enough to wake up and figure things out in the middle of the night. I cannot imagine having to wake up enough to walk down the hall.

Recently my little brother got a new bed and passed down his twin bed to Jack. We haven't put the bed up yet but we've got the mattress in Jack's room. Yesterday, Jack went in there, knocked the mattress down from where it was leaning against the wall and said, "Lie down, go sleep. Jack sleep big bed." I responded, "You want to sleep on your big bed?"
J: Yes! Jack sleep big bed.
M: No more little bed?
J: No more little bed.
M: You sleep in here?
J: Right here!
M: All by yourself.
J: By yourself [pronouns are still confusing for him]
M: No Mama, no Daddy?
J: [pauses, thinking it over] No Daddy.
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Poolside Snack

I look at him & I think, "Wow, he's skinny" but he weighs 49.5 lbs! AND he's very strong!

Picnic Table Review--FINALLY!

Anybody remember this post way back at the beginning of June? I promised you a review of a picnic table--this table

from CSN Stores, the people that carry everything from toys and games to mailboxes to sofas.

The table arrived not too long after my teaser post about the review but somehow I got "too busy" and it sat in it's neat little box in the garage until the beginning of July.

Once I opened the box, I was very pleased to find that everything needed for assembly was right in the box! Also, instead of having all the screws in a plastic bag leaving you to sort the 7/8 inch screws from the 1 inch screws, the kind folks at CSN stores have the screws all sorted and labeled for you. I wish I had taken a picture of the holder they came in. I think I was too excited about putting the table together!

Here it is fully assembled and placed out on my back deck....

Elise was staying with us at the time so it was a table for two for its first use.

It's just the right size for two small diners. At first, Jack wasn't too sure about sitting at the table

so we pulled up another chair and he sat at the side of the table.

Then Elise complained about too much sun.....

and I remembered we still had our beach umbrella. It fit perfectly in the holes provided. After putting up the umbrella, Jack happily sat at the table. He must have just been trying to stay out of the sun too.

The kids loved the table for outdoor dining and I loved feeling like I had a little cafe right outside my back door.

My only caveat for other buyers is that you must have somewhere to keep your little table indoors. It is labeled only for occasional outdoor use. It is really light and easy to move but it can't be left outside. Thank you CSN stores* for sending us this great little table. We are thoroughly enjoying it!

*CSN stores provided the table to me for this review. However the opinions expressed and the adorable children photographed are mine (well mine in Jack's case and part-mine for Elise since she's my granddaughter, LOL!).

Just wait...

This morning, as we were doing our usual morning roll around the bed wake up & talking, Jack said, "Cookies." I really thought he was asking for cookies & was thinking about the best reply. Before I could come up with anything, he said, "Cookies. N is dot 1, 3, 4, 5." I did not understand the first two times. Patient Jack repeated a third time and I said, "Oh wow! Yes, N is dot 1,3, 4, 5." He has been learning the dot numbers of Braille letters. Ms. Sunny uses his cookies as dots to help him learn....
Anyway if I had jumped right in with a reply I might not have gotten to hear that he was rehearsing for his letter of the week!

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Go store!

The scene: sitting on the deck eating breakfast. Jack is on his last little bit of blueberry waffles. He is using his hand to scan the plate for more yumminess and getting distressed as he finds no more waffles on his plate.

Jack: Waffles! Waffles!
Mama: You ate all your waffles.
Jack: Waffles! More waffles!
Mama: You are all out of waffles. Would you like some fruit?
Jack: Waffles.
Mama: You ate all your waffles.
Jack: (pauses a moment, clearly the wheels are turning) Go store.
Mama: (giggles a little) You want me to go to the store and get some more waffles?
Jack: Yes!

He progresses daily! I am really enjoying his increasing ability to communicate his thoughts!
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Shoes Make a Difference

Please learn from me. I don't want you to have the same "Oh duh" Mama moments that I have. Here in the southeastern United States it is hot hot hot!

It's the time of year for sandals and flip flops, freeing your toes from the tyranny of socks and shoes! Jack won't wear flip flops so each year when it starts to warm up I buy him some crocs. They are oh so comfy and easy to get on and off.

Unfortunately this year his crocs rubbed two raw spots on the inside of his ankles. So I reluctantly put him in socks in his crocs.

Then, one day I was watching him walk in our backyard. He was nearly walking on the inside of his foot, on his ankles. Seriously, I did not realize you could lean that far in on your foot without popping something! That's when it dawned on me just how Jack got those blisters and the fact that the crocs do not provide anything in the way of ankle support.

Time to go shoe shopping again...*sigh*

We love New Balance for their extra wide widths and excellent support. Since he's gotten his new shoes he is much more adventuresome outside. He's not totally a sidewalk kid! He actually is voluntarily climbing up and down grassy, rocky hills!

I worried that his feet would be hot and he'd constantly kick off his shoes. OR he would lose some independence because he could no longer get his shoes off on his own. Neither came true. He is perfectly able to remove the shoes but seems to prefer having them on.

So apparently hot feet can be happy brave explorer feet!

Swimmin in the rain!

Only our third or fourth time in the pool this year (thank you nasty ear infections) so we were not gonna let a little rain stop us.

He actually said take a picture!

Then he said, "Wait, sit down curb, a-a-a-achoo!" Remember we used to achoo to get him to smile for pics.

Learnin from Daddy again

I gave Jack his Prevacid this morning and he said, "Thanks honey."
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My breakfast date!

Just wish this place wasn't Mom-cook, Mom-serve, and Mom-clean-up. LOL!

Have a Good Day!

Did you see my video from last night? You may be thinking....wait a minute, this kid does not really "talk" he just says a bunch of words and phrases out of context.

Well all that talking practice lead to the following conversation this morning...

Me: Well, I've got to go to work! I wish I could put you in my pocket and take you with me. (Kisses and cuddles while Jack is trying to eat his bagels.) You have a good day, okay?
J: Ok, you have a good day too!
Dave: I love you. Be careful.
J: Yeah, be careful.

If your child is not yet conversational, try making sounds or just saying words with them. At first you may feel silly but the results are completely worth it!
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Helping Jack to Communicate More

Here is a video of Jack and I "talking" while he is in the tub. This "conversation" continued for much longer but I only had a 512MB memory stick in my digital camera. In this particular conversation there really is not much exchange of information and some people might not consider this a conversation at all. Basically, I am just repeating what Jack says and sometimes adding on to his ideas a little and singing when he asks me to. BUT there are a couple of very important things going on here. #1 I am learning to understand Jack more and he begins to speak more clearly. As I repeat him, he refines his speech and has more clarity. When I don't understand him, he either repeats himself until I get it or tells me in some other way. Some things I just don't understand but that's okay too. #2 Jack is learning that staying "in conversation" with someone is fun and entertaining. #3 Jack is getting the oppurtunity to practice taking turns in conversation.

Fairytale Day at School

It's Jack and the Beanstalk!

This Mama LOVES Rejection!

When I picked Jack up from school today, the "other" Jack was leaving too. He said, "Hey mom, that's Jack-a-doo. He's funny!" I wasn't too sure of how to take that comment and neither was his mother as evidenced by the way she hurried him off to the car.

They loaded up much quicker than we did and soon the other Jack was waving at us (well I thought us) and saying, "Bye bye!" I called out, "Bye!" and waved as my Jack was climbing into the car. The other Jack then looked at me funny and said, "Oh, I'm not talking to you. I was talking to Jack-a-doo! Bye Jack-a-doo!"

I was a little embarrassed but thrilled! He wasn't talking to me!!! He wanted nothing to do with me. He wanted to talk to Jack and only Jack and he expected Jack to answer! I never thought I'd be so happy to be so rejected! Woo hoo!

And then I read Jack's progress note from Ms. Sunny today. Today the other Jack and my Jack aka Jack-a-doo played for a short while on the playground. And the playing was initiated by MY Jack!!!

Oh happy day of rejection!
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Things that Break Your Heart...

When he woke up this morning, Jack said, "Wake up, Lise." [He tends to drop the first E.] This has been his habit since she's been staying with us. He loved waking her up in the morning. We reminded him that she'd left the night before.

Then when it was time to head out for school, he asked for her again. We reminded him again that she went home and would not be going to school with him.

When we came home from school, he asked for her again. We reminded him again that she went home.

He seemed fine. Ms. Sunny reported that he had a great day at school. He had lots of fun playing with us when he came home. He seemed quite joyful.

But then...bedtime came and he asked for "Lise". We reminded him again that she had gone home.

I thought he was fine until he got into bed and his little mouth just contorted into a frown and you could tell he was fighting it but the tears just poured. I asked if he had an "owie". "No owie," he said. "What's the matter?" "Lise. Lise!" "Do you miss Elise?" "(Sniff sniff) uh, yes"

So we called Patrick and Elise said, "Hi Uncle Jack!" Jack did not say a word but a little smile crept up and after we hung up we did our bedtime prayer and stories and he went to sleep after one more little "Lise. Lise!"

The Three Musketeers

are alone again. Patrick picked up Elise yesterday evening. Jack is enjoying having us to himself again.

Sleepy Math

1 full day of fun in sun + 1 cute niece + 2 sweet neighbor children = 1 tired boy

1 tired boy + a little Beethoven + 2 furry friends = zzzzzzzzzzzzz

Add tiny neighbor

This is awesome!!!

The kids, in their own words, are having a blast!

Poor kids!

If only there was something to do out in the backyard.....

Poor kids!

If only we had something to do out here!

Sweet neighbors

make play time even better!

Zooooomm!

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Chillin with Daddy/Grandad

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Making Ball Angels

Who needs snow? We've got a ball pit!

Look familiar?

I should do a collage from all the years we've been going to Rolen and Brock's birthday parties!

Making a cake?

Sandbox fun

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