Back to TX but First some pictures

Jack really loves the pool. You can see that he is not afraid to put his head or any other part of him in the water. The final picture is Jack having a snack. Usually the pocket bibs are great for catching food that he drops. In this case, it worked as both a catcher and a dish. :)

Jack’s head is still growing and the neurosurgeons are worried about his head so we got the call yesterday afternoon that we need to return to Dallas next week for possibly more surgery. He will have a MRI Monday morning and we will know more after that.

The Apple of My Eye, His Eye, and an Apple Pie

Jack continues to amaze us. We are fortunate enough to live in a swim and tennis community in the southern United States where the summer sun does not even begin to set until after 7 pm. Jack absolutely loves the water. After work this evening, while supper cooked in the crock pot, we headed out to the pool. After about an hour of just generally splashing around, we decided to see if we could get Jack to float on his back (wearing his float suit). It took a few tries to get him to relax. Then suddenly he was floating for a few seconds at a time with no hands on him or under him. The awesome thing about this is that is exactly what he needs to learn to do in case he ever falls or jumps into the water by himself. I think if we work on it we can get him to jump in the pool and turn over on his back all by himself before the pools close for the season in October. (Yeah, southern summer lasts forever once it comes.)
As dusk approached and all the other swimmers headed home to get supper started or to get ready to go to school in the morning, we removed Jack's float suit and let him play on the steps. This is pretty much the only time of day he would get those steps all to himself. He crawled and floated around the steps for about 15 minutes. He was actively putting his hands on the steps and allowing his lower body to float up as he lowered his face in the water and breathed out blowing little tiny bubbles in the water. Once he actually lost his handhold on the step and he was completely floating in the water. Did he panic? Absolutely not. He just breathed out and regained his hand hold and lifted himself back out of the water. Remember when I said, "he thinks he can swim"? Maybe he thinks that because he just about can.
Okay so before everybody who loves and cares for Baby Jack or is concerned about children and water safety in general begins commenting on how we should be very careful in the water, please know that Jack was extremely closely supervised during all pool activity and while we may think he is a natural we are not planning to allow independent pool time anytime soon. Now, feel better?

Jack saw his ophthalmologist today. He slept fitfully last night so he was really not in the mood for an eye exam this morning. Still he was a little trooper and made it through the exam with a minimal amount of squirming and fussing. Dr. Cogen did not see any signs of increased pressure or at least he did not tell us of any thing like that. He pretty much said that that left eye has always stuck out a little more than the right and Jack has grown and the eye is just kind of more prominent because his orbital bones have not kept up with his growth. We will see an occuloplastic surgeon on Wednesday to talk about what we can do to make sure that Jack's eyes don't become overly dried out by their near constant exposure to air. Dr. Cogen was more worried about some dryness and irritation to the lower portion of Jack's eye than anything else. So that was basically good news.

We have been working on getting Jack to take bites out of pieces of food rather than us cutting everything to bite size. Well it's going a little slow. We've had some success with crackers and rice cakes. Today, we treated him to a hamburger for lunch and I tried cutting it up into thin strips hoping he'd take bites since he could not shove each strip into his mouth or so I thought. He sure can get a lot of food in that little mouth all at one time. Anyway he had to have help biting off the strips of hamburger. But look what he did when given an apple pie!







Looks like he knows how to take bites after all.

Hope you've enjoyed this little update. I know that you've all been praying for Jack and I want you to see how happy he is and the wonders that God continues to work through him.

Fun with Cousins

Hey everybody, I am sorry that I have not mentioned Jack's eye again since the worried about it popping out comments. His eye is really looking a lot less swollen. He has an appointment with his ophthalmologist tomorrow so hopefully he'll be able to give us some answers.

We invited Jack's cousins over to swim today. As you can see from the pictures below, he was very excited to see them. He loves his cousins. Jeanie and McCahill are two of his most favorite people in the world. Look at the way he just about tackled Jeanie with this kiss and hug.
Did I mention that he was happy?

Pictures--some old, some new

Full update

Sorry everyone. I have been very busy with work and just have not had the chance to update. I'm replacing my earlier note from today with the more full update you were all looking for. Hey, it's not easy being the press agent for Jack along with my other duties. :)
Jack's MRI showed that he had the "right" anatomy to attempt a third ventriculostomy so that's what Dr. Sacco did. The procedure went very smoothly apparently. Dr. Sacco came out telling us that he was very happy with how things went and we should be called back soon to see Jack. A short time later the recovery room nurse called into the family waiting room and asked me to come in and set up Jack's Bipap. They were maintaining his airway with a chin thrust, frequently trying to arouse him to breathe, and keeping his oxygen "wide open" and still he was dropping his oxygen levels pretty low. We put the Bipap on his maximum settings and they kept the oxygen wide open but we just couldn't keep his oxygen levels up until after he had a couple of respiratory treatments and some Narcan to counteract the effects of the anesthesia. Slowly but surely his oxygen levels stabilized and they transferred us to a room. He slept all afternoon and woke up just in time for supper. So, of course, he stayed up a good bit of the night. The every 4 hour neurochecks were not all that bad since he was pretty much awake anyway. He did not appear to have much pain after the surgery. Dr. Sacco said that the surgery is not a painful one. But Jack is getting more teeth in so we were giving him Tylenol not really knowing if he was having surgical pain or mouth pain.
Jack's teeth appear to be coming in on top of each other. It looks pretty painful.
Dr. Swift who made rounds on Jack's discharge day told us to expect Jack's soft spots to fill back up and then slowly recede. He said that Jack's head should definitely not continue to grow and we should call if we noticed it getting bigger. He also told us to watch out for increased sleepiness and irritability. It took a few days for Jack's balance to return and he was more irritable than usual. But again, the question was is the balance issue just because he was kept in bed while in the hospital and is the irritability caused by the teeth? Either way, his balance and irritability pretty much sorted itself out by this past Tuesday morning.
Jack is walking all over the place and we are still not used to seeing it. He also seems to be playing with sounds a bit more lately. He seems really happy to be home. I think he enjoys the freedom of walking. He still likes to push his push toys but now he does not depend on them. He smiles such great big smiles while he is walking around. Man, is he ever busy busy busy. Naps are more of a challenge with the recent schedule flip flops and his new found freedom. Also, bedtime has gotten to be pretty late. We are going to have to work on that. Even super babies need their sleep!
One thing we are worried about is Jack's left eye. It almost popped out the night he had the ventriculostomy and again Wednesday night. Our surgeon wants us to send him a profile and head shot so he can kind of evaluate the eye long distance.
I am sure that I left some stuff out and I'll add pictures later.
Thanks again for all the prayers.

Poor Jack?

Man, life is tough when you are reduced to laying in bed eating a "smiley fry". Seriously, Jack is finally awake. He must feel a bit dizzy because he does not want to sit up at all. He is enjoying his dinner. This is actually a first for Jack. He doesn't usually take bites. He either shoves whole pieces of food in or he pushes the food away.
Jack needed me so I had to stop before sending this post. Jack's bottom teeth are coming in and he was a little cranky. We've given him a little Tylenol and he is sleeping peacefully now. We'll be having neurochecks every 4 hours so I don't know how much sleep we are actually going to get.
Thank you all again for all your prayers. God continues to watch over Jack and David and I.

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.