Out of surgery

It was a quick surgery but Jack was in recovery for quite a while. He scared us again. With each surgery, it seems like it is harder for him to recover from the anesthesia. This time we were ready with the Bipap machine but Bipap alone wasn't enough. Jack actually has nail marks on his chin from where Dr. Blakely and the nurses were applying a chin thrust to keep his airway open. Once he got a dose of Narcan (to couteract the effects of narcotics given) and a racemic epinephrine treatment (to reduce any inflammation in his airway), he woke up a bit and by the time we got here to the floor he was breathing okay without the Bipap-very noisy but keeping his oxygen levels up. He is still VERY sleepy. Right now, his soft spots are sunken in more than they ever have been. Dr. Sacco says that will fill back up a bit and then slowly sink in. It will take several weeks for them to sink back in
and Jack will be monitored with MRIs periodically.
Thanks again for all the prayers.

We met Baby Wade!

We did not expect to see any of our Apert listserve friends this trip. But this morning when we arrived to check in for surgery, Baby Wade's dad (guess we could call him Big Wade) recognized Jack and we got to meet Becky, Wade, and Baby Wade in person. Baby Wade was a cute, happy little guy. This was a sharp contrast to mad Jack who realized that we were back at the hospital. This picture was taken after Jack got his "goofy juice". He really needed it this morning!

Dream Come True

We've stayed at the same hotel for all but two of our stays in Texas. This hotel has a "sport court" that Jack has always looked at it longingly especially when he saw children laughing and playing on it. Today was Jack's day. He was out on the sport court laughing and running around. (Well, he was walking fast not actually running.) He loved it! We got a basketball from the front desk and you should have seen him going after the ball. I love the sound of Jack's laughter and today I was a little "high" from all the laughter that I got to enjoy. I got some pictures of him going after the ball with our other camera. I will post those after we get home.
We got new instructions from the anesthesiologist tonight. Jack will get to eat solids until 5:30 am. He can drink Mommy's milk until 8:30 and clear liquids until 9:30. Then we will have to be at the hospital at 10 am so there will be lots going on and it should not be hard to keep him distracted.

Tourist Jack!

The MRI went fine this morning. He had no problems with the sedation. We decided to actually do a little sight-seeing this evening. We went to the 6th Floor Museum. We saw photos and read all about the assassination of President Kennedy. It was very interesting but it kind of makes your heart hurt to relive it. I had not realized that Jackie Kennedy had lost her infant son in August and then her husband in November of the same year. What tragedy and to have to live it out in front of the whole world!
Back to tourist Jack. He definitely has his lower molars coming in. The tip of the left side is poking through the gum. No wonder he woke up crying in the middle of the night.
Tomorrow we are planning on getting together with David's cousin who lives in the Dallas area.

MRI done!

We are done for the day. A nurse is going to call us later to collect some information over the phone. Other than that, we are free for the weekend. Jack did great with being NPO this morning. We got our instructions for Monday morning and Jack can have clear liquids all the way up to 9:30 am so that will be great!
Jack is walking all around again!!! We went to this authentic Mexican food place last night and he surveyed every inch of the place. He's really enjoying independent walking. David says he's a big boy now but Jack and I know that he's still Mommy's baby. :)

sent from my Palm Treo
Please send replies to jackupdate@bellsouth.net.

What to Say

Our family is so fortunate. We are surrounded by a loving family, church, neighbors, and friends so we don't get ugly comments about Jack like some other children with craniofacial syndromes have experienced. People who know us love Jack and just know him as Jack-that's just who he is. I've discovered that when we are and out about parents just don't know what to do or say. Their children, all children, just say out loud, sometimes very loudly what they are thinking such as "Mommy, that baby has a BIG head." and "Daddy, look at his weird eyes." Before I go on, let me issue this little caveat, the feelings I am about to describe are mine and mine alone. I cannot tell you how parents of other children feel.
David and I are not attempting to shelter Jack from your children's honest observations. We would rather that you not try to hush your children and quickly escort them out of Jack's presence. We know that he has a big head and his left eye protrudes a bit. If you look closely at his fingers and toes, you will find that they look a bit different, too. I think Jack knows that he looks a bit different from other children. We want him to know that he looks different but he is still essentially the same. We would prefer that when your children make their honest observations that you allow us to acknowledge or you yourself acknowledge that, "Yes, that baby does look a bit different but he is still a little boy who might like to play. How about we go say, Hi?" When Jack is older and he's on the playground and some little kid runs up to him and says, "You sure do have a big head." I would like to see him say, "Yep, so do you want to play?" No fuss, no muss. There's nothing wrong with being different and he is different. So, don't hush those kids, allow them their honesty, and come on over and say, "Hello." Your children don't require special preparation. They should treat Jack the same as they would any other child. When you come say, "Hello" you'll see that, like any other child, sometimes Jack will be in a great mood and flash a beautiful smile and other times he won't even notice you are there. Like I said, he's just like your kids. He just looks a little different. :)

More Jack Fun

He's just so cute that I had to post some more pictures of Jack having fun.

First up, we finally put together the Thomas the Train set that Santa brought for Jack at Christmas. You'll recall we spent Christmas Eve night/Christmas morning at Children's ER so we were in no shape for toy assembly when Jack got his gifts. We just kind of set it aside and well, we couldn't stand it any longer and it looks like Jack really enjoys it.

Next, who says recycling can't be fun? I took our old baby pool that doesn't hold air so well anymore added a less than $10 bag of balls from Wal-Mart and voila, it's a ball pit!

Well I hope you've enjoyed the latest installment of World's Best Cutest Baby According to His Mom! :)

This is the life

Ain't it great? Jack is slurping on an "Alligator ice" while watching Baby Signing Time as he is being chauffeured to "the boundless playground" at a local park. This is the way life should be. Happy Jack having a happy day....aaaaahhhhh, oh the blessings in life. :)

Not feelin so good but lookin so cool

Jack has a cold or allergies acting up or who knows what but he just does not feel good today. His little nose is running and running and running. Loud noises and high pitched voices really bother him, too. We are really getting more worried about the pressure in his head. His soft spots are very soft but you can feel them pulsating--that's not a good sign. He is just not a real happy camper. We tried to go out and have fun yesterday evening at this family event held by the folks who do Jack's home therapy but it was just too noisy for Jack and he really did not have much fun. We had to leave school early yesterday too. The only thing Jack seems a little excited about is the clip on sunglasses that I found that fit his glasses. I did not know they were made that small. As you can see, he looks very cool. Say some prayers for Jack. He does not feel like doing much and keeps rubbing his head. We need for this cold not to turn infectious and delay surgery.
Thanks for the prayers.

Surgery Scheduled

The neurosurgeons called yesterday and Jack is scheduled for surgery on July 30 at around 11 am. He will have to have a MRI on July 27 to determine exactly which surgery he will have. Bottom line is Jack has too much fluid in his ventricles better known as hydrocephalus or "water on the brain". We need to do something to prevent all this fluid from causing too much pressure on his brain. Fortunately, Jack's noggin has just given way and his head has continued to grow bigger so as far as we can tell right now we have avoided any brain damage from the pressure so far.

Dr. Sacco will be performing either an Endoscopic Third Ventriculostomy (ETV) or placing a Ventriculoperitoneal Shunt (VP shunt). The way to relieve the pressure on Jack's brain is to help the ventricles drain the CSF—this is the job of the ventricles. Jack’s ventricles just don’t seem to be doing their job all that well.
We are hoping that he can just perform the ETV. If he does the ETV, he will poke a hole in the floor of Jack’s third ventricle. Ideally, this will help the CSF drain out into the subarachnoid space and eventually get absorbed into the bloodstream (no big anatomy lesson today). There is a possibility that if he does this it will not work. Jack may have an absorption problem as evidenced by the CSF that has already collected around the brain. If he does, it does not matter how easy he makes it for the CSF to flow out like it is supposed to. The other thing that could cause the ETV to fail is if there are bands beneath the floor of the third ventricle that prevent the CSF from flowing out. In most cases, neither the surgeon or the parents (or child) can know for a couple of months whether the ETV was successful. Just doing the surgery releases some CSF so you get relief for a while from that and the CSF has to build up again for the child to become symptomatic. Knowing all this, we would still prefer to try the ETV first. There is no hardware left behind that can clot off or get infected or get kinked or malfunction in any other way. Jack will have a MRI of his brain on Friday, July 27 at 7:30. He will require sedation for the MRI. The MRI will help Dr. Sacco further evaluate the anatomy of Jack’s ventricles. Based on the MRI findings, he will determine whether he is a candidate for the ETV.
If Jack cannot have the ETV or if the ETV fails, he will get a VP shunt. The VP shunt would divert CSF from the ventricles into the abdominal cavity. Basically a tube with a valve is inserted into the ventricles and it lets the fluid out into the abdominal cavity where it gets absorbed. We know and know of many children who have had a good experience with VP shunts but we would just rather not have to deal with the VP shunt because it requires hardware being left in the body. The hardware can become infected or malfunction. As Jack grows into adulthood, he would have to have another operation because the tubing that is initially put in will not be long enough as he grows.
Jack's niece, Elise, spent Saturday and Sunday with us this past weekend. They had a good time. Elise is a super easy going baby. Anybody else ever have a 2 1/2 year old volunteer to go to bed at 7:15 pm when she usually stays up until 9 or 10? We all had fun but I could barely move Monday morning.
Here are some pictures from this weekend and other recent pics....
We were trying to help Jack see that he is not the only baby that wears CPAP so notice the "baby" with a CPAP mask...

Two cuties in one tub!!!

Isn't she adorable?

A little playtime on the deck...

Jack riding a ride on toy in the kitchen, doesn't he look proud of himself?

Jack is....

1. learning more signs while we aren't looking. I noticed in the car today that he is doing signs for bird, grandma, and dog at the appropriate times during his signing time video.
2. enjoying himself tremendously. He has chuckled and laughed so much today!
3. telling Mommy when he has to go potty. He actually did the sign for potty and did go when I took him. We've been relying on timing alot lately and our timing has been off.
4. breathing much better most nights. Other than when he is congested because of weather or allergies there seems to be no rhyme or reason to his breathing "issues". We are still adjusting the Bipap S/T manually throughout the night. We are not having to do much. Either we are getting good or Jack's just doing so much better. We are all getting a bit more sleep.
5. sleeping again. I am almost afraid to type that because he may wake up at 3 am again tomorrow.
6. saying [This one is phonetic. You have to sound it out.] "a woov ooo". Hey it sounds like "I love you" to David and me so we are going with it!

Must get sleep...that's all for now!

An old fave

This is one of my favorite pics. Jack was just a tiny tike when he started wanting to get on my computer. Now he has his own computer game that he plays. He still likes to get on my computer though. He may take after his Opa and be one of those people that jsut knows how to make a computer do things that keaves others scratching their heads.
Jack is recovering well but he keeps waking up at 3 am for some reason. We are trying to fix that problem but keeping an active 2 year old in bed when he thinks it is playtime is quite a challenge. We are open to suggestions.

Home Again, Home Again

We got back this morning. Jack, the little trooper, is doing great. I'm really busy trying to get caught up on work so I'll try to post more later. It's good to be home.

In the meantime, enjoy this old picture of Jack and Elise. It's so cute.

adapting

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.

Please send replies to jackupdate@bellsouth.net.

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.....

Recovery

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.
Please send replies to jackupdate@bellsouth.net.

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
warning.

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.

REMEMBER:
EACH OF US IS A VITAL
THREAD IN ANOTHERPERSONS TAPESTRY;
OUR LIVES ARE WOVEN TOGETHER FOR A REASON.

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

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.

Please send replies to jackupdate@bellsouth.net.

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.

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!

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.

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 jackupdate@bellsouth.net. 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. :)

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.

Happy Father's Day!

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

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!

Progress?

What's been going on with Jack? Where are the updates? I am behind on just about everything. The continual sleep deprivation is having its effect. Since the last update, we have had some serious disagreements with Dr. Lazano who had changed from saying that Jack might need a trach to insisting that the ONLY option was to trach Jack. We had another sleep study and were given yet another machine with even higher pressures. They now want us to use a Bipap Synchrony because if these new pressures don't work out, it can do pressure control ventilation. In the meantime, Jack managed to breathe without support of any kind Sunday night. He only dropped his saturation level a few times but only as low as 70 and he bounced right back up. Last night he spent most of the night without the machine because he simply did not tolerate the excessive pressure. Again, he did pretty well off the machine. So it appears that Jack is making progress. The problem is that its not 100% consistent and!
I still don't get to sleep. Pray for us.
Oh yeah, the big boy is now 2 (since Sunday). I think he is enjoying being two. We will have a party next weekend. I hope to post pictures soon.

Happy Mother's Day

Happy Mother's Day to all the moms out there! It seems that my little almost two year old is very good at picking out and ordering jewelry. Those of you who know me personally have seen my first Mother's Day necklace that is a little book that says, "To the best mom" and you open it and it says "I love you." You've seen it even if you did not notice it. I wear it everyday. Now it seems I'll have to decide which necklace to wear. This year, Jack bought me a beautiful locket. I scanned it so you could see it.

It came with a little fingerprint kit and I am going to put his right index finger fingerprint in one side of the locket and I am going to see if I can manage to take a picture of him and shrink it small enough to fit the other side.

I have wanted to be a mother as long as I've remembered. It has been harder than I thought it would be but it has also been a lot more rewarding than I could have imagined!

Here's a little article that a friend sent along to me that I know you moms out there can identify with:

>> Anna Quindlen, Newsweek Columnist and Author:>>>> All my babies are gone now. I say this not in sorrow but indisbelief.>> I take great satisfaction in what I have today: three almost-adults, >> two taller than I am, one closing in fast. Three people who read the>> same books I do and have learned not to be afraid of disagreeing with>> me in their opinion of them, who sometimes tell vulgar jokes that >> make me laugh until I choke and cry, who need razor blades and shower>> gel and privacy, who want to keep their doors closed more than Ilike.>> Who, miraculously, go to the bathroom, zip up their jackets and move >> food from plate to mouth all by themselves. Like the trick soap I>> bought for the bathroom with a rubber ducky at its center, the baby>> is buried deep within each, barely discernible except through the >> unreliable haze of the past.>>>> Everything in all the books I once poured over is finished for menow.>> Penelope Leach., T. Berry Brazelton., Dr. Spock. The ones on sibling>> rivalry and sleeping through the night and early-childhood education,>> have all grown obsolete. Along with Goodnight Moon and Where the Wild>> Things Are, they are battered, spotted, well used. But I suspect that >> if you flipped the pages dust would rise like memories. What those>> books taught me, finally, and what the women on the playground taught>> me, and the well-meaning relations --what they taught me, was that >> they couldn't really teach me very much at all.>>>> Raising children is presented at first as a true-false test, then>> becomes multiple choice, until finally, far along, you realize that >> it is an endless essay. No one knows anything. One child responds>> well to positive reinforcement, another can be managed only with a>> stern voice and a timeout. One child is toilet trained at 3, his sibling at 2.>>>> When my first child was born, parents were told to put baby to bed on>> his belly so that he would not choke on his own spit-up. By the time>> my last arrived, babies were put down on their backs because of >> research on sudden infant death syndrome. To a new parent this>> ever-shifting certainty is terrifying, and then soothing. Eventually>> you must learn to trust yourself. Eventually the research will follow.>> I remember 15 years ago poring over one of Dr. Brazelton's wonderful>> books on child development, in which he describes three different>> sorts of infants: average, quiet, and active. I was looking for a >> sub-quiet codicil for an 18-month old who did not walk. Was there>> something wrong with his fat little legs? Was there something wrong>> with his tiny little mind? Was he developmentally delayed, physically >> challenged? Was I insane? Last year he went to China . Next year he>> goes to college. He can talk just fine. He can walk, too.>>>> Every part of raising children is humbling, too. Believe me, mistakes >> were made. T hey have all been enshrined in the, "Remember-When->> Mom-Did Hall of Fame." The outbursts, the temper tantrums, the bad>> language, mine, not theirs. The times the baby fell off the bed. The >> times I arrived late for preschool pickup. The nightmare sleepover.>> The horrible summer camp. The day when the youngest came barreling>> out of the classroom with a 98 on her geography test, and I >> responded, "What did you get wrong?". (She insisted I include that.)>> The time I ordered food at the McDonald's drive-through speaker and>> then drove away without picking it up from the window. (They all >> insisted I include that.) I did not allow them to watch the Simpsons>> for the first two seasons. What was I thinking?>>>> But the biggest mistake I made is the one that most of us make while >> doing this. I did not live in the moment enough. This is particularly>> clear now that the moment is gone, captured only in photographs.>> There is one picture of the three of them, sitting in the grass on a >> quilt in the shadow of the swing set on a summer day, ages 6, 4 and>> 1. And I wish I could remember what we ate, and what we talked about,>> and how they sounded, and how they looked when they slept that night. >> I wish I had not been in such a hurry to get on to the next thing:>> dinner, bath, book, bed. I wish I had treasured the doing a little>> more and the getting it done a little less.>> >> Even today I'm not sure what worked and what didn't, what was me and>> what was simply life. When they were very small, I suppose I thought>> someday they would become who they were because of what I'd done. Now >> I suspect they simply grew into their true selves because they>> demanded in a thousand ways that I back off and let them be. The>> books said to be relaxed and I was often tense, matter-of-fact and I >> was sometimes over the top. And look how it all turned out. I wound>> up with the three people I like best in the world, who have done more>> than anyone to excavate my essential humanity. That's what the books >> never told me. I was bound and determined to learn from the experts.>> It just took me a while to figure out who the experts were.

Bad Blogger

Ok so I realized today (with a little help from my daughter-in-law) that I have been remiss in my duties as a blogging mom and grandmom. I completely neglected to include pictures of Jack's playdate with his niece, my beautiful granddaughter, Elise. To be fair, if you look back there was nothing blogged between April 28 and May 7 so I must have been busy doing something...oh I don't know...taking care of Jack...working....doing all the mundane daily tasks associated with keeping a home, who knows but I think I was busy.

For those of you who do not already know who Elise is, she is the daughter of my stepson Patrick and his wife Holly. She was born on Thanksgiving Day 2004. We were all very thankful for her arrival.

Anyway, she and Patrick came by and David, Patrick, Elise, and Jack hung out by the pool while Honey/Marie/Nana/Mommy (that's me) worked. Do you know how distracting it is to have two absolutely adorable munchkins right outside your door while you are trying to get some work done? David got these great pictures:

First up, here's Elise saying, "Quit being a cranky pants, Uncle Jack! Come get in the pool."
[We were trying to get Jack to stay up later before his nap each day. It was an arduous process and we finally decided that it was just better to get him to sleep longer when he does nap and whaddya know--he started getting sleepy later once we gave up trying to force it.]

Here's Elise contenplating taking on the giraffe as Jack handles the snake (yes, we are from Alabama but no snake handling is not part of our worship).


Sadly, it was time for Elise and Patrick to leave. Elise and Jack embraced...
You should have seen the huge smile on Jack's face after Elise gave him this big ol' hug. He loves his niece!

Here's a photo of the Daddy and his two tiny tots...
Okay so one of them appears to be much taller than Dad in this photo. I don't think Patrick is that much taller than David. I'm really not sure that he is taller than David at all but this photo makes Patrick look like a giant!


Our little town has this festival that they do every spring to raise money for the Kiwanis. It's really grown into a pretty big event. I have been planning to take Jack ever since we moved here last October. We almost did not go because I had really imagined that he would be more independently mobile by this time. I was not sure how much he would enjoy it. I decided to take the plunge and off we went. We enjoyed listening to the music and dancing together [so it was more of a hold me and bounce me, Mommy, who cares I call it dancing]. I took the camera and thought I'd get a few shots of Jack doing some cute stuff. This is the only picture that I was able to take... I am going to hire a photographer to follow us around and get some good pictures.
Hope y'all enjoyed the catch up on the blog.
Nighty night!

Pictures from Our Weekend Get-together

I did not post any pictures from our weekend's activities because [audible gasp] I did not take any. I had the best of intentions. My camera was charged and I had plenty of space on my memory stick. BUT it was just one of those weekends when I could not manage to manage everything, know what I mean? ;)

Here are some great pics that a dear friend took for us and just sent to us. The first one is a a group shot right before the cake was cut. Up next is Jack enjoying cotton candy for the first time. Do you think he liked it? Finally, we spent a few minutes doing some relaxing swinging before heading back home.

Specific Prayer Requests

Jack’s pulmonologist here at home, Dr. Lozano, just called. First, let me say that I truly believe that he cares about Jack and has his best interests at heart. We are not scheduled to follow up with him again until August but he’s been worried about Jack so he has called a few times to see how Jack is doing. Jack is not currently using the Bipap only because he is super congested and is unable to tolerate it. Once we get this cleared up, we are going to put it on again. Dr. Lozano is concerned because even with the Bipap, Jack drops his saturation level to as low as 13 usually at least once a night and sometimes 5-7 times a night. He is concerned that Jack will suffer heart damage from the low saturation. Now, Jack does not drop and stay down. In fact, he will drop down as low as 13 but he will move right back up to 97-100%. Sometimes he will stay at 97-100% and sometimes he will begin dropping again immediately. For now, Dr. Lozano is talking about frequent sleep studies to try to optimize the settings on his Bipap and to monitor him. He has mentioned several times now that we may need to consider a trach. We will get copies of the sleep studies and get Dr. Mandujano’s (our TX pulmonologist) opinion when we go back to Dallas at the end of June.
We need everyone to pray very specifically that Jack not drop his oxygen saturations while sleeping at night. If he does continue to drop, David and I need wisdom in making a decision regarding a tracheostomy. Pray that our ears will be open to hear what is best for Jack. Pray that God will give Jack's doctors wisdom in coming up with a plan to best care for Jack. I know that God has a plan for Jack. I don't know what it is and I don't know all the steps along the way. He has taken us down roads that I have not wished to travel but I know that it is ultimately for our good. Please pray that God will continue to provide the strength for this journey.

Antibiotics vs. Sinus and Ear Infection Round 3

So I am a bit behind on the blog. Jack has still not completely recovered from that sinus and ear infection that he developed about two weeks ago. Turns out that we should not have kept putting the Bipap on him when he has a known infection. If only someone had told me that two weeks ago, we might not be on round 3 of antibiotics. He has never been so pitiful when sick. He has been sicker than this before but never this pitiful. I think he is old enough now that he is able to think about the things he would like to be doing but he is also able to realize that he does not feel well enough to do them. His throat must be pretty sore. He squeaks when he cries. It's terrible. I am very glad that Jack knows that Mommy is there for him. It's really touching the way he just reaches out to me and just wants me to be nearby. I am going to be real here and say that it also gets frustrating because it's hard for me to get much done that way but what's more important than heaping love on my little guy anyway? So tonight he is sleeping upright in his car seat with 2 liters of oxygen by nasal cannula. So far (he's been asleep less than an hour) he has not had any obstructive or central apnea. We'll just see how the next few days go.

In other news, we had a pretty good weekend especially when you stop to consider how bad Jack must have felt and I did not know it. Looking back, he did complain of a headache alot this weekend. Anyway, on Saturday, Jack and I did our first solo road trip. We traveled about 2.5 hours away (took us a little over 3 hours actually) to get together with some other children and adults with Apert syndrome. Jack did so great on the ride down and believe it or not did not sleep. He just watched his Signing Time video and a Baby Galileo video and snacked and just kind of hung out. So about the time we arrived at our gathering Jack was way ready for a nap. He was very clingy after he woke up but we were still able to enjoy ourselves and chatted briefly with just about everyone at the get-together (if we missed talking to you, I'm sorry but you saw that I was busy keeping up with busy Baby Jack). On Sunday, we missed church because Jack took a great 2 hour long nap! He did wake up in plenty of time for us to go to Springfest at my in-laws church so that was good. It was hot and Jack again complained of headache and was very clingy (YES, I am clueless sometimes) but we still were able to have fun. Jack and I got in one of the bouncy things together and he just loved it. I should buy one of those things because boy was it a workout. It was very very hot so we went inside where Jack got to walk around a bit and we hung out with his Grandma, my wonderful Mom-in-law. I was so glad that we went to hang out with Grandma. When Jack gets clingy he likes to nurse ALOT and I was a little nervous about nursing in public at their church. Jack was squirming around in my lap and she looked over at me and says you nurse that baby right here and now if that's what he needs. She continued Nobody will know what they're looking at and if they do and they don't like it well too bad! Yay for the support from Grandma!!!

Well, Jack is no longer sleeping upright in the carseat. He woke up and he wasn't going back in the seat. Hope he sleeps well the rest of the night in the bed. I better go and get some sleep.