Friday, June 29, 2007


Jack, ever the trooper, is adapting well. He has dressings on his left hand and right foot so they have messed up his balance and he is unable to walk on his own-quite frustrating for a fellow who quickly accomodated to being able to swiftly walk away from Mommy and Daddy when he wanted to. We think that he is focusing on things better but I can't get out of my head what Dr. Stager said about Jack's central vision being affected by the pigmentary changes on the retina. I googled it on the hotel computer last night and it seems that pigmentary changes are associated with macular degeneration. Imagine having a spot right in the middle of your eye so that you can only see things around it-that's macular degeneration and macular degeneration gets worse with time. I am anxious to get home and see Dr. Cogen as soon as possible. It just so happens he is a retinal specialist and he has been seeing Jack since he was born. If he did not mention seeing retinal changes before now maybe !
they have been present since birth and it means nothing. God has known Jack since before he formed him in the womb. He has good plans for Jack. I don't understand everything and that's frustrating but God is teaching me that I really don't need to know or understand everything. No matter what, he will take care of Jack, David, and me.

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Thursday, June 28, 2007

Pediatric Day Surgery

Here's the big boy sleeping it off back on the Pediatric Day surgery floor. Jack's breathing seems to have stabilized so they are planning on discharging him once he wakes up well.
Dr. Price, our neurosurgeon stopped by. Jack's head has grown 2 cm since she put the subdural shunt in in January. Now it looks like he will also need a VP shunt or an endoscopic third ventriculostomy. More surgery.....


Jack is in recovery now. He is on oxygen because he is having a little difficulty waking up from anesthesia. He apparently scared the staff a bit with holding his breath. He is not holding his breath now but he is obstructing his airway so David has gone back to the hotel to get Jack's Bipap mask so we can keep his oxygen saturation level up.

Unexpected findings

Dr. Hung's part of surgery went easily. He replaced Jack's right ear tube because it had come out. He cleaned up the left tube and left it in. He said that Jack had some thick, snot-like stuff so we will be treating with ear drops for a few days. Dr. Hung could not pass the nasal retractor so Jack's adenoids are still intact.
Dr. Stager said that Jack was missing his superior oblique muscles on both eyes. We did not quite take in the rest of the information because it all came out so fast. He weakened a muscle that apperently was pulling Jack's left eye downward.
So the unexpected news......Jack has pigmentary changes on his retina. Dr. Stager said that he does not know for sure what that means in terms of Jack's vision and we need to see a retinal specialist. He said that Jack's central vision may be fuzzy. He cannot be 100% certain that Jack did not have the retinal pigmentation at birth. I don't like not knowing what stuff means. I am a bit frustrated right now.
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Mouse Story

Here's a great story I received via email this morning. Thanks everyone for being "in this with us."

Mouse Story ...
A mouse looked through the
crack in the wall to seethe farmer and hiswife open a package.

What food might this contain? The mouse wondered -
he was devastated todiscover it was a mousetrap.

Retreating to the farmyard,
the mouse proclaimed the

There is a mousetrap in the house! There is a mousetrap
in the house!

The chicken clucked and scratched, raised her head and
said, Mr. Mouse, Ican tell this is a grave concern to you
but it is of no consequence tome.
I cannot be bothered by it.

The mouse turned to the pig and told him, There is a
mousetrap in thehouse! There is a mousetrap in the house!

The pig sympathized, but said,
I am so very sorry, Mr. Mouse,
but thereis nothing I can do about it but pray.
Be assured you are in my prayers.

The mouse turned to the cow and said, There is a
mousetrap in the house!
There is a mousetrap in the house!

The cow said, Wow, Mr. Mouse.
Im sorry for you,
but its no skin off mynose.

So, the mouse returned to the house, head down and dejected,
to face thefarmers mousetrap-- alone.

That very night a sound was heard throughout the house --
like the soundof a mousetrap catching its prey.

The farmers wife rushed to see what was caught. In the
darkness, she didnot see it was a venomous snake
whose tail the trap had caught.

The snake bit the farmers wife.
The farmer rushed her
to the hospitaland she returned home with a fever.
Everyone knows you treat a fever withfresh chicken soup,
so the farmer took his hatchet to the farmyardfor thesoups
main ingredient.

But his wifes sickness continued,
so friends and neighbors came
to sitwith her around the clock.
To feed them, the farmer butchered the pig.

The farmers wife did not get well; she died.
So many people came
for herfuneral, the farmer
had the cow slaughtered to provide enough meatfor allof them.

The mouse looked upon it all from his crack in the wall with greatsadness.

So, the next time you hear someone is facing a problem and think itdoesnt concern you,
remember --
when one of us is threatened,
we are allat risk.

We are all involved in this journey called life.
We must keep an eye out
for one another and make an extra effort to encourage one another.


One of the best things to hold onto in this world is a friend .

Waiting for anesthesia

Dr. Blakely is running late so we are hanging out in the holding area watching Baby DaVinci. He has had his "goofy juice" and is all marked up for surgery.
Isn't technology awesome?

More from Yesterday

We got to meet another Mom and Dad from the Apert listserve yesterday. Their little girl had to have her great toes straightened with pins because they were growing at an awkward angle causing her problems with walking and wearing shoes. She also had some more eye muscle surgery. We did not get to talk to her because she was still knocked out from surgery but we did see her toes and she has the cutest little toes ever! Everybody says that Jack has great fingers and Dr. Fearon did such a wonderful job. I think Dr. Fearon ought to hang pictures of Jack's fingers and this little girl's toes in his office. They are wonderful testaments to his skill as a surgeon.
We were especially excited to hear from this little girl's parents that the eye muscle surgery that Jack is about to have made a BIG difference with her focusing, walking, everything. We are excited and nervous, of course. Well, I better go get ready. Thank you all again for caring enough to check in and pray and think about us.

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Surgery today

Good morning! In a little over two hours, Jack's surgeries will begin. Dr. Fearon will deepen the web spaces between Jack's right great and 2nd toes and the left index and middle finger. Dr. Hung will replace Jack's ear tubes and attempt a partial adenoidectomy. Dr. Stager will perform eye muscle surgery. Our anesthesiologist is Dr. Blakely. Please be in prayer for each of these highly skilled gifted doctors today especially.
Yesterday, we had serious discussions with Drs. Mandujano, Hung, and Fearon about Jack possibly needing a tracheostomy. The consensus is that right now Jack appears to be developing well and we will try the adenoidectomy and try the new Bipap machine I had asked Dr. Lazano to order. If Jack does not do well on his next sleep study, he will need a tracheostomy. When I say, "Do well" that is defined as having no apnea or having apnea that can be managed using Bipap or CPAP. I am sharing these details with you hoping that you will join me in praying quite specifically for these things.

Wednesday, June 27, 2007

We have a walker!

I KNEW he would walk into Dr. Fearon's office. Jack has finally decided that all this hand-holding and cruising is just not for him. He has really taken off today. Whatever balance issue he had recently seems to have worked itself out. Jack did not enjoy all the pre-op appointments today. He was quite frustrated by the idea of javing to sit still. More details later-it's pool time!

Tuesday, June 26, 2007

Wish we could package the rain

They are having flooding here while the drought continues back home. Sure wish we could send some rain back home. We are finshed with today's appointments. Good reports but it was a tough day for Jack. Doctors just don't work around baby's nap schedules very well. Tomorrow is actually a longer day. Well it's pool time again. Jack got so excited when I asked David, "Do you want to go get in the P O O L? " It's like he can spell already.

Monday, June 25, 2007

Pool time

Guess who likes the hotel's indoor pool? We are enjoying ourselves this evening before we begin our round of appointments tomorrow. Jack thinks he can swim. We really have to watch him in the water.

We're here

We're here! If you want to email us while we are here, please address it to We will not be checking the other email addresses.

About to take off

They are just beginning the safety announcements. Jack is seated comfortably enjoying the view. He really liked watching all the people boarding. I don't know if you can see him but Jack's little buddy Baby is making his first trip. Big two year old Jack has to have his own seat. Baby gets to travel as a lap infant. :)

Friday, June 22, 2007

Some Old Pictures

I was browsing some old pictures and they were so cute that I had to share...
Here's Jack loving on one of our cats on the bed in our old apartment.

Jack on his first potty. It's a Winnie the Pooh throne type potty. We used to keep books about pottying sitting next to the potty and we'd get him to sit there and "read" until he relaxed enough to go.

I just liked this outfit. Helooks good in those colors.

It's Jack on goofy juice! They give the kids Versed before they are taken down to surgery.

Jack and I met David at the shoe store to find David buying the same shoes that Jack was wearing! Too cute!

Jack loves visiting his cousins.

First haircut.

Thank you to everyone who has prayed and continues to pray for us. Life is really good these days and we are very excited about surgery this next Thursday. We think that Jack having his eye muscles in balance and keeping his eyes in sync will have a tremendous impact on his development. Thanks to everyone who has stuck by us through these first two very tough years. I hear that it gets easier and things do seem to be slowing down. We are hoping to begin enjoying "normal" family life soon.

Sunday, June 17, 2007

Happy Father's Day!

Here's a tribute to the best daddy in the whole world--my husband, David, proud father of Jack!

Tuesday, June 12, 2007

Behind on Blogging

I am very very behind on blogging and I just accidentally deleted several paragraphs. So what's new?

We are sleeping!!! Jack is breathing much better during the night. We adjust the pressure settings on the Bipap throughout the night and Jack's saturation levels are staying up. David has somehow turned into a lighter sleeper and when Jack wakes up, he wraps one arm around him to keep him from pulling the mask off, he pulls him in close, and he lulls Jack back to sleep. It's amazing to watch and it happens much faster than me trying in vain to keep Jack from pulling the mask off, then getting Jack calmed down and back asleep, trying to put the mask on, waking Jack up in the process and starting all over again. Jack really does seem to be tolerating the mask much better these days, too. I honestly think that he is now just waking up because two year olds don't really sleep for 10 hours straight. Only most two year olds don't wake up with a tight mask on their face and high pressure coming at them. I'd wake up upset too if I was Jack! Thanks so much for all your prayers for sleep and good breathing. It's time to praise and thank God for the work he is doing!!!

Jack had his two year birthday party Sunday, June 3. It was a great party at a local park. We had lots of friends and family. Jack, like any other two year old, really did not "get it" but he enjoyed being able to walk around the park. He got a little scared when we all sang Happy Birthday. I think he thought we were all yelling at him but we got him calmed down and happy again. He got lots and lots and lots of presents. Thanks everybody. You guys are very generous.

We are heading back to Dallas the last week of June. We will be out there a week for pre-op appointments, surgery on the 28th and one follow up appointment on the 29th.

Ready for some pics? I'm behind so here's a bunch!

Jack has taken over my computer so he can play "Boowa and Kwala".

I have been reduced to squishing myself up in a corner.
Here's Jack at his birthday party trying to enjoy some birthday cake and be on the run at the same time. The next few pictures shows the typical scenario: Mom or Dad opens gifts, baby plays with few gifts, gets tired, wants to go play, and Mom/Dad finish opening gifts...

Here's a crowd shot where you can see a few faces. There was a much bigger crowd than this shot captures. All the kids got water guns, whistles, sunglasses, and bubbles to play with at the party and then take home with them. You know we must have been popular that evening at the homes of the children who had been filled with soda, hot dogs, cake, and popsicles and then sent home with noisemakers and water guns!
Here's my very sweet little brother who watched over Jack and kept him safe while he walked and walked and walked. I actually had a few adult conversations at the party. It was nice!
Somebody said and everybody agreed that it looked like Jack could get a summer job mowing the grass at the park. :) Well that's all for now. Hope you enjoyed this update!