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. 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.

Monday, September 13, 2010

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!
Last pic before they make me turn off phone.

Ready to Go!

We're on the plane!

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Sunday, September 12, 2010


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.


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.

Saturday, September 11, 2010


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.


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!