Thursday, December 30, 2010

Christmas Wish on the Way

Remember my Christmas wish of having a socially engaged little boy? This morning, David and I sat down to eat our breakfasts. Jack was busily playing and usually likes to play awhile before eating so I did not say anything to him.

He looked up from his playing and saw the two of us sitting at the table eating our breakfast. He came over to the table, pulled over a step stool so he could sit at the table with us and said, "Bwekfast. Sit down. Eat bwekfast."

Sunday, December 26, 2010

The Face of Determination

I don't know why he wanted that step stool upstairs but he was determined to take it upstairs.

Sweeper

But hey, if he's going down there to sweep, that's fine by me!

Mischievious Newly Acquired Skills User

To catch those up that did not know, Jack has recently learned to open door knobs and turn on lights completely independently. I turned my back for about 1 minute and he went down the stairs to the basement, made his way through the dark to the bathroom down there and was climbing in the tub when I caught him. Oh boy!

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Learning Fun on the Ipad

Fine motor work, visual therapy, hand-eye coordination, concentration...this ipad is this mother's dream toy!

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Thursday, December 23, 2010

Merry Christmas Everyone!

I am blessed that God sent his son to pay for my sins. As a mother of a little boy, God's sacrifice means more to me now than it ever did.

Merry Christmas!

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The Tree

really is up now. Merry Christmas everyone!

Sunday, December 19, 2010

Finally Got the Tree Up

It's a Merry Christmas, Charlie Brown!

Christmas Surprises

We were having fun stacking blocks which is pretty much a miracle in and of itself (it's a fine motor and visual task combined plus it requires being still a bit) and suddenly Jack looked intently at this block which was stacked on top and said, "I see a leaf." Just like that. This does not appear to be high contrast to me. I don't know how he made out the shape. He (of course) did not answer when I quizzed him on a couple other blocks. But then there were bricks on one block and a window on another and he did it again.

Oh how I wish he would tell me all that he can see...

Friday, December 17, 2010

Dreams Come True

Jack fell asleep and I put his bipap mask on. He rolled over on his side and I whispered in his ear, "I love you." He gave a little sigh and said, "I love you."

Thursday, December 16, 2010

All I Want for Christmas...

David recently asked me what I wanted for Christmas. My answer? Peace on Earth and good will toward men.

And without being there and having the nonverbal communication portion to know, you are left wondering, "Was she serious/being sarcastic/just kidding around?"

Somewhere along the road of development, you developed a desire to communicate with others. You learned that you had to share attention with another person both to understand and to be understood. Part of that attention sharing meant being aware of non-verbal cues provided by your communicating partner. You began to recognize changes in tone, volume, facial expression, and other body language and it helped you to derive meaning in addition to the spoken words.

You can have a conversation with someone without paying attention to any of the cues/clues listed above. But you are not likely to make your communicating partner feel well understood. Nor are you likely to derive the kind of joy that comes from two people really spending time together.

Jack still has issues with attention sharing. He is paying more attention to others these days but I can't help but wonder if his vision (or lack thereof) is playing a role in inhibiting him from picking up subtle (and some not so subtle) social cues.

So back to the original question...I actually would like to see peace on Earth and good will toward men but don't really expect all of that this side of heaven. What I really would love to have for Christmas is a socially engaged little boy who delights in sharing attention with others.

Jack progresses daily and I expect to see my Christmas wish come true but maybe not this Christmas...
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Friday, December 10, 2010

Shopping Really IS a Pleasure

We had to go to our local Publix tonight--Friday night. Friday night means a crowd and a whole less likelihood of getting one of the coveted rocket ship driving carts. Ah well, I figured Jack would get to work on his orientation and mobility skills and I would get to work on my patience. Little did I know what wonderful things would happen...

Waiting in line at the pharmacy....
There was a little boy about 2 or 3 years old driving one of the rocket ship carts. Jack walked up and said, "Baby, hi baby!" The little boy tried to stand up and Jack said, "Sit down baby" while reaching for the errant little one.

At the bakery....
Bakery worker: Well, hi there! What can I get you?
Jack: Choklit chup coookee peas
Bakery worker: Chocolate chip? Sure! What a polite handsome young man (hands cookie directly to Jack)
Jack: Pank koo
Bakery worker:(smiling broadly) You're welcome. Y'all have a good night!

Going down the aisle:
Another customer remarked how precious Jack was and asked his name. I asked Jack to tell her his name. Jack: "Handsome!"
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Wednesday, December 8, 2010

Picnic Table or Boat?

Jack's ship came in! [Or his picnic table has been turned over]. He is now the captain of his own course!
It's amazing to see the ideas kids come up with.

Thursday, December 2, 2010

Stocking stuffer question...

My neighbors are either going to
A. Thank me for the warning them that Jack is zooming down the street
OR
B. Wonder what the heck I was thinking putting that kind of racket into his hands.
Which do you think it will be?

Rough Patch

We've hit a rough patch here at the All Access Pass to Jack household....this adorably handsome young man is very strong willed. That strong will has kept him going through so much in his 5 years of life thus far. On the other hand, because he is only 5, he does not yet understand the many reasons that a person might be required to do something that he does not want to do right at that moment or that whatever he wishes cannot be granted at the moment of wishing.

For instance, why can't he go outside as soon as it occurs to him he'd like to go? What on earth can I mean saying things like we need to get dressed or we have other things to do right now?

And how, oh how, can I expect him to stop playing to brush his teeth? Surely, I'm not serious!

Monday, November 29, 2010

There goes the power bill...

He just does things on his own time table, ya know? Until today, Jack's light switch fascination meant he would drag you over to the appropriate light switch and tell you, "Light on."

We showed him how to do it himself. We would lift him and let him do it. Tonight, he decided he didn't need any help. He marched over, said "Light on" and switched the light off and on and off and on and off and on and....

Yesterday, he opened a door all by himself for the first time. What will tomorrow bring?

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Sunday, November 28, 2010

The Library

keeps expanding. It just makes my heart happy. We have a diverse collection of print-braille and print books. I've got a long way to go before I get all of Jack's print books labeled with Braille but it is so worth it when I see his fingers feel for the bumps.
How do you organize your home library? How do you decide when it's time for an old book to move on to new little hands?

Thursday, November 25, 2010

Happy Thanksgiving!

We have so much to be grateful for but, more than anything, I am grateful to our wonderful heavenly father who knew each of us before we were formed and created a good plan for us, giving us a future and a hope.

Jack has had some struggles in his life thus far. And there has been pain--physical and emotional.

Yet, how sweet is that smile? He is the most persistent person I know. Yep, God has a plan. I don't know what it is and I don't understand why it has involved so much pain and struggle so far but I trust that it's good.

Monday, November 22, 2010

K is for Cookie

Well no but sometimes C and K make the same sound. It can be confusing. We gave him credit and he got those cookies he requested after spelling it correctly with a C.

Monday, November 15, 2010

Time for Math

I had three cookies. I ate one. How many are left?

He really did count when I asked him ;)

Depth Perception

When you have light perception in one eye and varying vision that tests at 20/320 in the other, figuring out how far away things are from one another can be challenging. Fortunately, the long white cane helps Jack measure distance and helps him to stay safe.

Sunday, November 14, 2010

5 year old Boys

Get their "climbies" out where they can!

Exploring the Back

Hangin Out in the Truck Composin

Jack LOVES our (new to us) truck. He loves it so much that we were playing outside and he asked me to open the truck and get in. I thought he just wanted to play drive. Unh uh. He hopped in the back and asked for his piano so he can work on his symphony.

Saturday, November 13, 2010

Skuut bike riding=Pre-writing Skill

Look at the grip on the right side. In order to effectively ride the bike Jack has to hoild on to the handlebars. Holding on to the handlebars increases his grip strength. Increasing his grip strength prepares him for holding a crayon, pencil, pen, or stylus.

It's a beautiful day. Take your kids out, enjoy the sunshine and work on their pre-writing skills!

Friday, November 12, 2010

Pinch me!

Jack's riding a real bike (w/training wheels) and asking for something from a store!!!

Thursday, November 11, 2010

Skuuting Along

through our favorite tunnel.

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Sweet Relief

When those teeth come in, they hurt! I'm not sure if Jack's got "adult" teeth coming in or if these are still some of the late missing "baby" teeth. Either way, they look they are pushing on the teeth he has. We'll be going to the dentist. It's one medical professional we've sort of put off. After all, he's seen just about everybody else.
In the meantime, vibrating teething toys will be chewed upon while doing computer "work".

Monday, November 8, 2010

When He's Ready....

He's ready and he just won't do it until he's ready. We bought this skuut bike a few years ago and Jack haltingly rode it a few times but tonight he's just ready...round and round he goes.

Sunday, October 31, 2010

Trick or Treat!

Buzz Light Year about to go trick or treating with his cousins in Georgia. He did not care one bit about "trick or treat" until I re-phrased it as "walking for chocolate."

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Tuesday, October 26, 2010

More Writing Fundamentals

We try to incorporate fundamental skills into our day. Here's Jack strengthening his grasp--a skill necessary for both handwriting and brailling. He has to modify the way he holds things because his fingers are different than typical fingers. He loves dried fruit so he is highly motivated to get that fruit out!

Monday, October 25, 2010

Handwriting Fundamentals

We don't know yet how much Jack will be writing versus how much he will be brailling so for now we are working on both handwriting and brailling fundamentals.

To be able to write, there are certain fundamental things you work on first. Straight line tracing is one of the first skills.

Jack is visually impaired so "tracing" a line has to take on a different look. Today I used wiki sticks to form two straight line "templates" for Jack to follow.

First I explained the activity and helped Jack to "trace" the line with his finger. Next, we used a fat blue (color of the day) paint marker to trace the lines.

The line on the left was done with me holding the marker and giving a bit of hand over hand assist. The line on the right was all Jack.

Sunday, October 24, 2010

Saturday, October 9, 2010

Roll Tide Baby!

Well he's not a baby anymore but he'll always be my baby.

Jack finally rode all the way up to the tunnel and trail I've wanted to show him for ages. It's nice and cool on this 90 degree day and has AWESOME echooooooooooooes.

Thursday, October 7, 2010

Please Pray for Natalie

This is not about Jack but completely scary because it could be. Natalie has a craniofacial syndrome similar to Jack's. They share a craniofacial surgeon. Natalie was having her midface surgery--the one we thought Jack was going to need this fall. She began bleeding and required 13 units of blood in a 4 hour period. A body as small as hers only holds about 7 units of blood. It is a miracle that this little girl is still alive. A CT scan yesterday revealed two small bleeds in her brain. She is on a ventilator to assist with her breathing.

Please pray for Natalie and her family. Please pray for the doctors and nurses and various hospital personnel to have not only gentle, loving hands but also wisdom--wisdom to best care for Natalie and wisdom to prevent this from happening again.

Thank you.
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Sunday, September 26, 2010

I'd like to thank...

Jack's uber safety conscious daddy, Dave, Jack's devoted teacher, Ms. Sunny, Dr. James MacDonald and the rest of the supportive communicating yahoo group and Sonic's go-go grape for bringing us this moment...

Mama: Here. (Rolls car on Jack's leg)
Jack: Car. (Takes car and gets on floor to lie down so he can watch it roll.)
Mama: Car!
Jack: C-car. Car starts with C.
Mama: Yes. Car starts with C.
Jack: Everybody sit down in the car.
Mama: Everybody sit down.
Jack: Stay safe.
Mama: Everybody stay safe.
Jack: (chuckles and continues listening to his recorder while rolling car)
Mama: (chuckles and grabs camera before she misses the shot)

Saturday, September 25, 2010

New Cane More Confidence

Jack has grown so much since we got his last cane that he was actually developing a habit of leaning over to use it. His new longer cane arrived this morning.
I was afraid he might not like this new cane because it also has a bigger handle. Jack has small hands and I was not sure how his grip on this new handle would be. Jack surprised me yet again. He grabbed his new cane and took off running AND swinging his cane from side to side with GREAT coverage on both sides of his body. He did not maintain good form the entire time but it was great to see that the extra length makes a great difference.

There's more than one way to clean up!

Don't judge me! If you have not done it, I'm sure you've thought about vaccuuming your kid after a meal. FYI...it works!

Ear Plugs

He doesn't like it when I put them in but he is tolerating them well. He worked one out when David was helping him with his bath the other night so today I made sure to tell him to leave them alone. He's doing good!

Sunday, September 19, 2010

Boundary Tester

I'm trying to help Jack realize all the fun he can have while staying in our yard. He's testing boundaries literally and figuratively.

Friday, September 17, 2010

Blessings in My Rearview Mirror

Often when I look in my rearview mirror, I see blessings. I am blessed to be the chauffeur of a kid that continues to develop.

I remember when going to the park in the afternoon on a hot day took a lot more effort than throwing a couple water bottles in the car. I remember when getting Jack a drink was a lot more effort than unscrewing a lid and handing him a bottle. I remember when going anywhere meant enduring screaming from the backseat. I remember but those days seem long ago.

Wednesday, September 15, 2010

Even More Great News!

This has been a great trip with great news from Jack's doctors. This afternoon, Dr. Fearon said that he was very happy with Jack's MRI, the most recent sleep study, and our reports regarding Jack's development.

After much discussion, Dr. Fearon said that he felt that Jack could wait at least another year and perhaps longer before he has his midface surgery. He did say that he feels that Jack's midface will require more distraction (pulling forward) than most of the other kids because it is so retruded. He said that Jack will probably wear the RED a bit longer than most kids to get as much over-correction as possible.

Dr. Fearon said that the bigger Jack is the less complicated he thinks the surgery and recovery will be. Also the longer we can wait, the less likely Jack will need another midface surgery. We are going to wait as long as we can for this one. Dr. Fearon is a bit concerned about the Bipap preventing us from having as close to a typical life as we all could have. The truth is Jack being on the Bipap does make life a little different for all of us but not in such a way that we are ready to head toward a major surgery sooner rather than later and perhaps cause the need for another repeat midface surgery in Jack's future.

Dr. Fearon told us that sometime after Jack's midface surgery he will do another cranial vault to move Jack's brow bone forward to provide better eye protection. Other than that, he did not project any further surgical needs. That was also great news.

Now my friends, I have a few specific things I'd like to ask you to pray about.
1) In our most immediate list of concerns, we have been informed that because Jack had such a great sleep study back in August, Jack no longer meets Blue Cross Blue Shield's criteria for oxygen. We already had to pay out of pocket to get Jack's Bipap AVAP because Blue Cross does not even have a code to cover the machine. Now we are being told that we will have to pay the monthly rental cost for Jack's oxygen concentrator. Jack does not always require supplemental oxygen with the Bipap but when he gets a cold or has increased congestion for any reason, it is hard to keep his oxygen saturation up without the supplemental oxygen.
2) This next prayer request is more of a right now and over time prayer request. After the midface surgery, Dr. Fearon puts a nasal trumpet in the child's nostril to facilitate breathing during the most swollen state. Jack's nasal passages are VERY VERY narrow and there is a very real concern that a nasal trumpet will not fit. Please pray that the nasal passages will grow large enough for that nasal trumpet to fit in there when it is time.
3) Another prayer request in preparation for Jack's midface surgery--Dr. Fearon told us today that he has only had one child so far who required a tracheostomy after the midface surgery. She needed the tracheostomy only temporarily until the midface could be pulled far out enough for her to breathe. David, Jack, and I have worked long and hard to avoid Jack having a tracheostomy while still maintaining adequate oxygenation during sleep. We would like to continue to avoid it even temporarily. We discussed some options with Dr. Fearon. I am asking that you pray that God will give us and Dr. Fearon clear guidance in what to do when it is time to decide which route to take.

I had somewhat of an epiphany one day when I was worried about Jack and whether his "grumpiness" was just usual kid stuff or a sign/symptom of something bigger. If I truly believe that God is working out his plan in God's life then I also must believe that God will guide me as his mother if I let him. And I also have to believe that everything that happens in Jack's life works for his good even if I can't see it at the time. So y'all remind me of this little epiphany later because I believe God is faithful but, like the children of Israel wandering in the desert, sometimes I forget.

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Tuesday, September 14, 2010

Long Day of Appointments Part 2

That last message sent before I meant it to.

Dr. Hung wants us to go ahead and get Jack fitted for some ear plugs too. He wants Jack to wear them even in the bath tub.

Dr. Hung said if these measures don't stop the infections he may remove Jack's ear tubes and replace them with a tube made of a different material. He said that some people actually react to something in the tube that creates these chronic cycles. Also, he said that the tubes themselves are probably colonized with bacteria and taking the tubes out and rinsing the ears with an antibiotic solution may take care of it all.

We were encouraged that he seems to believe that we can resolve this chronic cycle medically.

Our final appointment of the day was with Dr. Price, the neurosurgeon. We got good news there too. She was very happy with the MRI. She had it all ready for us to review. There is a remarkable difference between 2007 and now. The ventricles are so much smaller. Compared to last February, the ventricles are slightly smaller. Jack's head circumference is exactly the same as last February but he is 18 month's older so the gap between Jack's head circumference and the growth chart is getting smaller. Jack has no chiari malformation (a condition which occurs when increased pressure causes a portion of the brain stem to be pushed into the spinal canal). All of this means that Jack's VP shunt is doing it's job.

Jack still has a large cranial defect on his right temple. Dr. Price says that she may close that up in a future surgery but she does not feel that it is necessary to do surgery for that alone.

We'll see Dr. Fearon tomorrow and get his take on everything.

It's been a long, tiring but very good day.

Jack was so great with the whole day. He said he wanted chicken for dinner. We stopped at the first chicken place and got that big boy some chicken.

Long Day of Appointments Done

We're all very tired but also very encouraged. Jack recovered quickly from the anesthesia this morning. He was up and running within an hour and a half post procedure. The intubation (and extubation) did not seem to bother him a bit.

Dr. Hung, the ENT, was very encouraging. He wants us to try using Atrovent nasal spray again to help dry up Jack's secretions. We can give it several times a day or back off to once every few days--whichever works best to help decrease the secretions but not make them so thick that they obstruct his nasal passages.

He has given us more aggressive ear irrigation instructions and Jack will get another round of antibiotic drops to clear up his current infection (that we did not know he had).

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Tests Done!

Jack has made us very proud this morning. He handled the vital signs like a champ. He got nervous just before being sedated for the MRI but when it was time, he kicked off his shoes, hopped up on the table, and took nice deep breaths from the mask just like we talked about.

We were a bit surprised that Dr. Davis, the anesthesiologist, decided to actually intubate (put a breathing tube in) Jack this morning. We like having all diagnostic procedures done at Medical City because Dr. Davis usually doesn't intubate. But Dr. Davis thought it was safer for transport from the MRI suite to the GI lab and thankfully Jack quickly recovered. He did not even need his Bipap after his procedures.

Jack's a bit woozy but he's up and around again.

We'll get Dr. Price's (neurosurgeon) impression of the MRI this afternoon. Dr. An said that the endoscopy looked good. He has sent off tissue biopsies and will call us later this week with results.

ENT appointment is next.

He's Ready!

He was so sleepy that I actually got him dressed even shoes on while he was still asleep. Then suddenly he woke up and was all ready to go. We're off to the hospital for Jack's MRI and endoscopy followed by follow up appointments with his ENT and his neurosurgeon.