The Amazing Owen
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Details on the Good News!
OK, so now I'm home I can put in a few more details.

The first appointment this morning was with Owen's audiologist.  Holly was kind enough to squeeze us in to run a diagnostic on his implant just to be 100% sure that it was still working after the MRI.  She hooked it up to the computer and found that it is just fine - so our calculated risk with leaving the magnet in worked.  We have our images, the implant is intact and we don't have to take his temperature three times a day for the next six weeks worrying about an infection.

The next step was to head over to the neurosurgeon's office and get the verdict on the Chiari.  This was the last real big step in being in the clear from his cranial vault reduction last year. We know that it has increased his mobility greatly - but we needed to be sure that we didn't aggrevate the Chiari by making his head smaller.  And the great news is that we did not!  This is definitely one of those times when it is easier to tell the story in pictures.

Here is a side view of Owen's head taken last week:


And here it is with some useful labels on it:


So, you can see that Owen's cerebellum pushes down below the yellow line, which would be the normal stopping point.  It's not pushed down very far, but it is father than normal.  The part that is outlined in green is the bit that is out of place.  What is really good to see is the fluid pocket - the whitish space next to the green outlined part.  This is not a fluid pocket that would signify a dreaded syrinx (read my two previous posts for details on all these terms) - it is one of the normal pockets around the outside of the skull that you see on all CT's and MRI's of the brain.  It's just there cushioning things - and these are the first things that start disappearing during a shunt failure or any other time that pressure has built up.  The presence of this fluid pocket means that there isn't a lot of pressure in the area with the Chiari - and that means we don't need surgery!!! 

This is a HUGE deal.  We have gotten used to surgeries in this house and yet this would have been devastating.  To get to the area would mean compromising the ligaments and tendons in Owen's neck - all of that hard won head control would be lost at least for a time.  It would leave part of the back of his head unprotected by his skull, at least for a time.  It would have been touchy and dangerous surgery.  It would have been another summer in the hospital.  We are VERY Thankful that Owen will not have to endure such a thing!

So we are very happy campers here in our house tonight.  I will have to get more pictures and video to show all of the amazing progress he has been making in recent weeks.  But for now I'm just going to bask in the happiness that is no surgery!
The MRI is Done!
Constitutional amendments have been passed with less work and effort than was required to obtain this MRI, but it is done! 

As I have blogged in the past, Owen has a Chiari malformation - where the cerebellum is pushed down out of the base of the skull.  This has always been so mild in Owen as to not cause any symptoms. After he had his surgery last fall to make his head smaller, we increased the risk that the cerebellum will push further down onto the spine causing all kinds of problems, including pockets of fluid in the spinal columns called syrinxes.  A syrinx will not show up on a CT scan so he needs an MRI.  MRI's and cochlear implants do not mix well.  Normally they remove the magnet before doing an MRI, but this requires an incision.  Incisions mean possible infections in any patient.  With a shunt in your head - a shunt that attracts bacteria like a back porch light attracts bugs on a summer night - the risk of infection is considerably higher than normal. 

Owen's cochlear implant surgeon, Dr. Buchman, did some research and found that a fair amount of testing has been done with leaving the magnet in for a 1.5 Tesla MRI with the internal magnet immobilized by hearing aid molding material. They have found that the worst that happened was to have the magnet flip or move out of its socket.  And if the magnet flips you just flip the magnet in the external piece too and everything goes back to normal.  While there was some hypothetical risk to the device, the risk for Owen of an infection from an incision was far greater. 

Dr. Buchman and his nurse B.J. Squires moved Heaven and Earth to make this happen.  I cannot thank them enough for all of the work that they did to make this happen.  They have argued with insurance companies and standard protocols and rallied every troop they could find.  They have gone above and beyond.  And we will be eternally grateful for their efforts.

Yesterday was the big day.  Dr. Buchman met us in the prep room with an audiologist and a big pile of hearing aid molding material.  They made a big block to fit over the implant.  Then they knocked him out.  I had to leave then.  It was a bit weird because I've always been able to stay with him for MRI's in the past, but the policy at UNC is that parents have to wait in another room.  I waited for just over an hour and they came to get me. 

Dr. Buchman said that despite the molding the magnet did move and ended up on its side.  He said that he just popped it back in and figured that he had a 50-50 chance that when he put it back that it was in the right direction.  So we quickly headed down to Owen and put the coil on his head.  Yippeee!!! It attached perfectly on the first try.  Then we turned the implant on to see if the speech processor recognized the implant and Woo Hoo! it also worked.  Owen was out cold at that point and we couldn't see how he reacted.  He did have a bit of a red spot over the magnet at the time.  And the good news was that we had the MRI images that we needed!

After he woke up in recovery I put the coil on and he looked around.  I said his name and he looked at me.  The red spot was already gone.  He was still groggy and just in case it was sore we took it off. 

By this morning we decided to try it for a little longer.  We let him wear the implant during meals when he wouldn't roll around on it on the floor.  He waved when I said Hi, smiled and signed for Itsy Bitsy Spider and followed other commands.  So it would appear that the implant is working just fine.  We are going to take him in on Monday to have the implant tested more fully. 

On Monday we will also meet with his neurosurgeon to go over the MRI to see if there are any problems.  I looked at the images but I really am not sure what I'd be looking for.  I looked at the brain and I'd say that the shunt seems to be working because I'm used to how those look.  But I haven't looked at the spine ones before and I'm not sure what to look for.  Owen certainly isn't showing any signs of any problems so we are hopeful that all will be well.  For now though I am just grateful that this part is over!
As I have mentioned in previous posts, in our living room we have a big computer monitor set up that cycles through all 12,000+ pictures that we have taken since our daughter was born.  It's a nice conversation piece and at least once a day one will catch someone's eye who will point it out to the whole family.  This is cool. 

Yesterday a picture went by that really showed the incredible growth that Owen has had since his surgery to make his head smaller. The picture was this one:


taken on May 20, 2009.  Now I know that this picture is just over a year old and you would certainly expect a fair amount of growth in that time, but I'm not talking about just any growth.  Take a look at Owen's legs in that picture, and then in this one:


which was taken on June 17, 2009.  Look at how tiny his legs are in comparison to the rest of his body.  They are seriously out of proportion.  He was just starting to stand up a bit and was bearing full weight on them for the first time ever and that really showed in his growth.  Despite the stander, bouncer and walker which all allowed him to put some weight on his legs, it still wasn't enough to get them to grow to a normal length - bones grow in direct proportion to the weight that they bear. 

Now take a look at the picture I took tonight:


Not only do you get a nice view of the head size/shape change, but look at the difference in his legs. Owen's surgery was on November 3, 2009.  In early October of 2009 I measured him for his stroller.  I measured him again on April 10th of this year.  The results were rather amazing. 


Measurement October 2009 April 2010
Top of Head to Seat (1) 25 24.25
Top of Shoulder to Seat (10) 14 14.25
Actual Seating Depth (3,4) 8 9.5
Lower Leg Length (12) 7 8
Foot Length (5) 4 5

All measurements are in inches.  The first measurement is interesting because it actually got .75 inches smaller - that is how much they took off the top of his head.  The second measurement shows that he only grew .25 inches in his torso during that time.  Now, unfortunately I didn't take just a plain old full leg length measurement, but based on those measurements and his height you can surmise that his legs grew between 2.0 and 2.5 inches in that time.  Compared to the quarter of an inch for his torso that is quite a lot of catching up that his legs are doing!  He also had tiny feet and you can see that their length has increased by a full inch.  These measurements are all confirmed by the fact that I had to buy him all new clothes and shoes - thanks to Nacol for all the hand-me-downs from Noah, they were a lifesaver!

I remember how hard it was for him to stand up in those earlier pictures.  It was such a struggle and he could only keep it going for a very short time.  Tonight I just put him in front of his bed in a crawling position and told him to stand up.  He reached up and stood up in a matter of seconds with ease and stayed up there while I took the pictures.  Of course when he saw his sister in the bed he did something else he couldn't have done last year and just got in with her:




He was more interested in his sister's stuffed bear than he was in Mommy trying to get him to look at the camera, but that's OK.

I will have to do all of those measurements again soon, but it's easy to see just by looking at him how much his legs have grown - and having bigger legs is just what he needs to get walking!  Owen now weighs 33 pounds 7 ounces.  Just after his surgery he weighed 30 pounds even.  Three and a half pounds in seven months, that's not bad!
Downs and Ups

It has been a couple of weeks since my last update and a lot has happened both awesomely great and not so great. 

As always, we'll get the not so great parts out of the way first so that we can end bragging on all the progress he has made.  After three seizure-free months Owen finally had another one last week.  Owen has only ever had one of the TV-Classic, previously known as Grand Mal and more modernly relabeled tonic-clonic, shake and jerk all over the body seizures.  Instead Owen usually follows a pattern of vomiting, choking and then losing conciousness for a few hours.  In the past, before the Keppra, Diastat and home oxygen, Owen would also lose his ability to regulate his breathing right after he threw up - which would land us in the ER with a breathing tube.  The Keppra is an anti-seizure med that he takes twice a day that is supposed to prevent the seizure from happening.  The Diastat is an emergency anti-seizure med that you give after a seizure starts. 

So, last Tuesday (December 1st for my record keeping) he was coming home from school and Tessa heard him choking in the car seat.  She pulled over and hit him on the back to clear his airway and he started breathing again just fine, but he then lost conciousness.  She was only about a mile from the house so she brought him here and we hooked him up to the pulse-ox. (BIG Kudos to Tessa for quick thinking) His oxygen was fine, but he wouldn't wake up for anything so we gave him the Diastat.  Now the general idea with the Diastat is that you give it to him if a seizure lasts more than 5 minutes, then wait five more minutes and administer it again if he is still seizing.  The problem is that Diastat puts him to sleep, and so does the seizure so I'm not sure how you're supposed to know if you should give him the second dose.  However after the first dose his reflexes were more responsive so we didn't give him the second one. 

He was being monitored on the pulse-ox the whole time and his vitals were perfectly stable so we just called the neurologist's office instead of 911 (per the neurologist's instructions).  He said that it's normal after this type of seizure to sleep 2 to 3 hours and to call him back if he didn't wake up in that amount of time.  After two and a half hours he woke up and started signing for food as if nothing had happened.  The neurologist upped the Keppra dose to 2 ml twice a day from 1 ml twice a day. 

Which brings us to problem #2 - Owen's GI tract.  There have been many discussions of poo on this blog and I suspect there will be many more. As I figure this blog is mostly an educational tool, I tend to describe the situation more than I would in polite company. It's honestly Owen's biggest problem and has held him back more than anything else.  Constipation is very common in kids with hydrocephalus partly because they have limited mobility and so don't stretch out the body and spend as much time upright as other people.  There can also be muscle tone issues inside as well as out.  We have been battling the poo wars since Owen started solid food.  A few weeks ago he was fed some bananas at school - we had never thought to put that on the list of banned foods because he isn't allergic to them (like he is to everything with milk or eggs).  But they do have the effect of stopping up the whole works and that they did.  After several days of enemas and massive doses of Miralax we did finally get things moving again, but only for a day or two.

Since then he hasn't been able to produce anything on his own without the help of an enema.  The worst is that this is an incredibly painful situation for Owen.  He cramps and then just cries and's really quite painful to watch for Mommy and Daddy.  And when you are in pain you don't want to do therapy or anything at all.  We are somewhat worried that it might be the increased dose of Keppra that may be doing it - since that is a known side effect.  When we were down at Duke yesterday for a CT (that will be covered in the good news section) we also had them do a shunt series - which is a series of x-rays that shows the entire shunt tract, and also incidentally shows the entire GI tract.  I sent those images to Owen's GI doctor today and he should get them tomorrow to tell us what he sees and what we can do. 

OK, so onto the good stuff!

Yesterday we took Owen down to Duke for his follow-up CT scan from the big surgery.  And the good news is that his current shunt is keeping things nice and stable!  There is no need to have a shunt revision!!!  And a few more !!!!!  As a parent, the worst fear is that you will make a decision that will somehow make your child's situation worse than it was and that was certainly a possibility with this surgery.  It is an incredible relief to know that all is well inside his head - and with all of the progress he has been making with his mobility we are completely sure now that we made the right decision.  So we have a lot of !!!!'s about the way that this has all turned out. 

The CT scans look just about the same as the ones that were taken right after the surgery, so there isn't anything new to post there.  The shunt series though did have two interesting x-ray images that I thought were worth sharing.  They show the lines in his skull where they took apart the bone and put it back together. 



The big circle with the dot in the middle attached to a bunch of electronics is Owen's cochlear implant.  The other wirey thing across the top of his head is the shunt.  You can see how they pieced everything back together. 

And now for the benefit of all this surgery.  Owen's mobility has just increased by so much.  The other day he was sitting on the floor next to me, next to the couch.  He saw a toy that he wanted which was sitting on the couch.   He turned around, pulled himself up and grabbed the toy as easy as could be.  He has done this many times since.  I did get a video of one of his attempts.  This isn't one of his more graceful attempts, but it is the one that I managed to catch:


Owen's vocalizations have really improved too.  He's saying "na na na na" for no now.  And he is saying "da da da da".  He did not have either of these sounds until after the surgery.  And he is putting them together with all of the sounds he had before to make much more complex "words". 

Owen can now transition from a sit to a crawl without falling over almost every time now.  This is huge because it means we might actually be able to let him sit by himself soon without needing to be right next to him the whole time.  I'm going to try to get a video of that manuever soon.

So, all in all, it's going quite well.  We couldn't be more pleased with his recent progress.  I'll close with a picture of Owen and his sister checking out the train that goes around the Christmas tree:


Measurements, Meetings and Messes
First, let's start with some measurements.  Before Owen's surgery I took a bunch of measurements so that I could compare them later.  Here's how we are doing so far:

Well, this is harder than you might imagine since right after the surgery he had gained weight from all the extra fluid and swelling.  Now two weeks later the swelling is all gone, but he has also grown enough to make his sleepers too small on him again.  So I have taken my best guess.

Before surgery: 13.96 kg (30 pounds, 12 ounces)
After surgery: 13.62 kg (30 pounds, 0 ounces)

So he lost at least 12 ounces during his surgery.  I really couldn't quite think of what 12 ounces really meant, so I started going through the cupboards and weighing things on my kitchen scale.  Here is what 12 ounces equals:

These three tangerines:

Or these five wooden blocks:

Or these two cans:

Now imagine only weighing 30 pounds and strapping those to the back of your head and trying to sit up!

Distance From Top of Nose to Base of Neck:

Before Surgery: 46.5 cm
After Surgery: 45.5 cm

From One Ear to the Other Ear Over the Back of the Head at its Furthest Point:
Back View:

Side View:

Before Surgery: 38.6 cm
After Surgery: 36.0 cm

Head Circumference:
Before Surgery: 56.5 cm
After Surgery: 54.5 cm

A few centimeters might not seem like much, but it really adds up when you are talking about volumes.  If you pictured a perfect sphere with a circumference of 56.5 cm, then the volume of that sphere would be 3046 cubic centimeters.  If you change that circumference to 54.5 cm, the volume of that sphere goes down to 2734 cubic centimeters - a difference of 312 cubic centimeters with just a 2 centimeter change in circumference!  Of course Owen's head isn't a perfect sphere, but it give you an idea of how much of a change these measurements mean.

The numbers will likely settle down a bit more during the next few weeks - we were told 6 weeks to get your final results - but these give you an idea of why we are seeing such good results in mobility already.

Remember Avery from yesterday's post?  If you don't, scroll down and read it, and then come back.  Ready?  Josephine sent me her pictures this evening and I wanted to share two of those that were really cute.   In this one I think it looks like Avery is telling Owen a secret that he is listening to intently:

2009-11-20 001.JPG

But this one is my favorite.  You might not be able to see the kids faces, but you really get a sense for the awe that they had of this Christmas tree:

2009-11-20 008.JPG

Avery's Mom shared her wonderful thoughts about this visit here. Owen just couldn't take his eyes off Avery during our visit and we're both looking forward to future get togethers!

OT has not been going very well for Owen lately.  His beloved therapist Vesna left to pursue a job teaching other OT's.  We were incredibly sad to see her go, but we hoped for the best.  Unfortunately Owen has not been able to bond with his new OT at all.  Owen responds best to happy, bouncy, really outgoing people who aren't afraid to be incredibly silly.  This just isn't the personality of the new OT and while I think she is very intelligent, she just isn't getting through to Owen.  Most of his sessions these days are spent with him making his angry face and refusing to do anything useful.  So, while we sort out that situation, it's up to Mommy to pick up the slack. 

Our biggest OT challenge at the moment is tool usage.  Owen is somewhere behind the cat in his abilities to use tools.  If you hand him a washcloth he will examine every fiber in detail visually, feel the texture of it, and then eat it. If you hand him a mallet he will do the same.  He does not push cars along the floor, he inspects them and then fiddles with the wheels.  Spoons, toothbrushes, combs, crayons, etc are all just objects to be observed and tasted, but he does not connect them with any real purpose.  This is the problem that we tackled today.

Attempting to place a crayon or paintbrush in Owen's hand, and then getting him to put it on a piece of paper generally results in a lot of screaming - so I decided to start small.  If you are going make any progress with a toddler, you need to be prepared to get messy so I broke out the fingerpaints.  He needed a bath anyway, so it seemed like a good time to make a mess.  I really just wanted to calm him down with the whole process.  When I first put his hand in the paint he got pretty upset.  We did manage to get one handprint on the paper:


But he rather quickly found out that not only could you turn the paper blue, but you could also turn your feet blue and your hands and belly and THAT was FUNNY!


That picture also shows a benefit of his new mobility.  There is no way he could have sat there and looked down at this own feet that way and seen the results of what he was doing before the surgery.


He no longer fought when I put his hands in the paint, he kept saying more(and yes I mean SAYING, he can now clearly vocalize "More") and happily spread the paint everywhere.  Afterwards though, I think he may have had second thoughts.  In this picture I think he is asking "Mommy, are you sure this says washable?"


And yes, it was washable paint so up my little smurf went to the tub to wash it all off.  He left a trail behind him where he crawled as I was running the bath:


But the water turned blue and slowly the paint washed off:




I think we gained some ground in him not being so upset when you try to work hand over hand with him, and I think we had some fun too!

OK, that was a long one, but there's just so many exciting things happening right now!
Meeting Avery
Things continue to go well in Owen's recovery.  If you didn't know that he had been through major surgery just over two weeks ago, you certainly wouldn't know by looking at him.  The only effects that we are still seeing is that he still tires a bit more easily.  He started back in school on Tuesday, and he went in on Wednesday too.  Normally he would go for Thursday morning as well, but he was pretty tired after Wednesday and so we decided not to push it.  He was happy to be back with his friends though.  He also resumed therapy this week, but they all took it pretty easy on him.

Today we got a special treat.  Owen got to meet Avery.  We found Avery and her Mom Josephine rather accidentally through their blog which you can read here. I had read her blog and she had read mine.  We had passed each other in cyberspace with comments on different blogs that we both follow for the last few years.  Recently though, I was reading Josephine's blog and noticed that some of the doctor's names were very familiar, and so was the name of the hospital that she was taking Avery to - they are the same ones that Owen has seen right near our home.  So I sent her an email asking if they lived in the area and as it turns out they live rather close by and I pass right near their house every time we head down to North Carolina.  So we just had to get together in person.  Avery had a doctor's appointment right near us today, so we decided it was a good time to meet.  We were also hoping that Jen from the blog The Lollipop Kids would be able to join us as well as she lives in the same town where we met, but she couldn't make it today.  Hopefully we'll be able to catch her on a future meeting.  Maria, if you're out there and you'd like to join us in this local hydrocephalus group - I don't have your new email address yet and if you send it to me I'll make sure you get an invite.  I also have some friends whose children's have other disabilities - not hydrocephalus - maybe we should organize a bigger group too.

Anyway, it was a great visit.  It's always good to get a chance to sit down with another Mom who understands the trials, tribulations, joys and wonders that you are experiencing with your special needs child.  And Avery is just as cute as a button!  We met at the mall which has a big open area with a fireplace and couches and, at the moment, a big Christmas tree.  The kids had fun looking at the tree and crawling around while we chatted.  Miss Tessa was kind enough to watch the kids while the Moms got a chance to talk. Josephine took a bunch more pictures than I did, and I'll post more when when she emails me hers, but I just couldn't wait to get up at least a couple of pictures of these two cuties:



I'm so glad we managed to pull of the meeting because it made for a very pleasant morning!

I also thought I'd show off some of the progress that Owen has been making.  Check this out:


This is a rather big deal.  You see prior to the surgery, Owen would attempt this little maneuver endlessly, always with the same result - he'd reach up, grab for the beads and then the weight of his head would make him tip over.  He can now play with the toys on this panel with ease by propping himself up on one arm. 

And then there is this:


He is pushing up with his arms fully extended.  This is also something that was impossible three weeks ago.  He simply couldn't be stable enough with his head that far off the floor - and this is the first step to getting him to crawl with his tummy off the floor. 

And here's another wonder:


See how far down he is looking?  And he is sitting fully unsupported.  Attempts before the surgery to look this far down would eventually result in a toppling over - he would instead usually bring the book up to look at it.

And finally just a few more pictures for comparison to previous posts to show that the swelling is completely gone now.  There may be some internally that will take a few weeks to go away completely, but there is no longer a puddle anywhere on his head:



Not bad for just being two days past two weeks since the surgery!  
Back Home in Virginia
Well, we've been back home for five days now actually.  You know how it is though, when you're in the hospital there is nothing to do but take care of the kid.  When they are asleep - which is alot during the initial recovery - there isn't much to do but knit and update the website.  Once you're home there's laundry, meals, siblings and all that sort of thing to keep you occupied.  Unfortunately we have also had a sad event in our family in the last week - my father-in-law suffered a stroke a few days ago.  I have been blessed with the best of in-laws.  When the comedians get up and start making fun of their in-laws I never get the joke - in the 14 years that my husband and I have been together they have always made me feel welcome and loved in their family.  We are hopeful that Grandpa will make a good recovery - but as most of my readers know, those first days with medical issues are full of unknowns and are the most difficult.  I would ask that you keep these wonderful people in your prayers as you go about your week.

On a similar note I'd like to point everyone to Owen's friend Matthew who has had a rough few weeks.  Matthew and Owen met when Owen was at Duke with a shunt infection and Matthew came in for his cord blood infusion.  His Mom Jill has been a great friend throughout our journey and I'd like to funnel some well wishes and prayers their way too.  You can read about Matthew here.

So, it's time to update on how Mr. Owen is doing - and he is doing fabulously!  As you could see by the pictures in my last post, the swelling was already going down before we left Dallas and it has only continued to improve.  The day after we came home he looked like this:


There is still a good bit of swelling there, but things are beginning to take shape.  After he got home we started putting him back in his walker to get more upright time. This picture was taken on the 13th (surgery was on the 4th):


As you can see, it looks a bit different when he is upright.  The puddle all settles down to the back instead of being evenly distributed as it is when he is laying down. 

And here we are tonight.  The swelling is almost gone, there is only a small puddle left.  The top looks a bit pointy at the moment because the incision goes right across the top of his head and now that there isn't any swelling to keep it even, the line of the incision is making his hair stand up.  That will settle down when the stitches disolve.  And, of course, it still looks bigger when he's sitting up because what swelling is left still pools up at the bottom.




And then there is the mobility.  The day after we got home we stood Owen up at a baby gate that has some toys on it for him to play with while he is in his walker - it's the same one in the picture above on the 13th.  As you can see, the toy that he is playing with in that picture is set a bit low on the gate - this is so that he can reach while he's crawling.  Owen stood up all by himself with no support, let go with one hand and reached down and played with that toy for the better part of a minute.  He also looked down at the toy while he played with it.  Owen has never been able to look down while he was sitting or standing because he would lose his balance.  He has never been able to let go with one hand without losing stability very quickly and it was just as natural as could be - as if he'd always been able to do it.

And here is another wonder.  Take a look at this picture:


I couldn't get the camera into video mode quickly enough to catch what happened next.  He was sitting up tonight playing as I took the previous pictures. Then suddenly he put his hands down, scooted his feet out from under him and transitioned to a crawl.  He has been able to do a variation on this in the past, but it took all of his energy and generally resulted in a faceplant at some point.  Tonight it was just effortless.  While sitting up he has been able to reach way out to the side, to where he's almost laying down, and then use his hands to walk himself right back up to sitting.  Crawling was difficult for Owen, as was tummy time playing, because if he leaned too far to one side he would fall over as the weight became too much.  He has crawled endlessly in the last few days and he hasn't fallen over sideways once.  So, all in all it has been a very positive outcome for Owen.  We can't be more pleased with how well he is doing with his new head. 

Now that I am home on my regular computer I also thought I would get some more before and after pictures - I didn't have my full collection with my in Texas. 







And finally I thought I would close with a couple of pictures that were just plain cute.  Owen likes making fishy-faces:


And seems to be enjoying himself immensely:


Our Last Evening In Dallas
First we'll start with the morning picture of what Owen's head looks like today:


Each day the swelling goes down more and more.  There is still a good bit of fluid at the back of his head, but it doesn't seem to hurt anymore.  In fact Owen spent most of the day feeling around on the back of his head and squishing it.  It's just got to be weird!  Owen was much more energetic today.  On Saturday he slept most of the day, on Sunday he took two very long naps and today he only took one short nap.  He hasn't run a temperature today either for the first time. 


Tonight is our last evening here in Texas.  Owen was getting seriously bored with being in the hotel room and we thought that he was up to a little outing.  So we met his Uncle Tom and Cousin Ryan at our favorite Texas restaurant - Uncle Julio's.  Read the family blog in about a week when I finally update it if you want the whole background on why that is our favorite spot, but for now I'll just post a few pictures so you can see how Owen is doing.  He spent most of the time at Uncle Julio's doing his "happy dance".  I have a great little video of it, but alas I do not have my video editing software with me.  So here's a still picture to give you the general idea of him dancing with Daddy.  He waves his arms and giggles alot:


I'll post the video when we get home.  It was a nice visit and it was great to get out of the hotel for a little while.  It was really awesome to be able to have a chance to reconnect with my brother-in-law and nephew who I haven't seen in two years.


Uncle Tom and Cousin Ryan (along with his Aunt Lori and Cousin Shannon who are still at home in Colorado) gave Owen a stuffed Curious George.  When we got back to the hotel we put it out on the bed.  Owen immediately crawled over to it and put his head down on it with the world's biggest smile.  I didn't get the camera out in time to catch the smile, but it's so awesome to see him able to motivate himself like this:


I know that it's going to be a little while before I can post again once we get home and get back into the normal daily routine, so I want to make sure I say my Thank You's now.  A surgery like this is requires a great deal of logistical planning and a tremendous amount of help from others - it just isn't possible to do it all on your own. 

So, we'd like to thank Grandma and Grandpa Q for moving down to Virginia for a couple of weeks to take care of our daughter Sammy.  Thanks Mom for helping me get the house clean and laundry done before we left.  Without their help this simply wouldn't have been possible.  And we thank Uncle Richard and Aunt Christie for helping with Sammy while we were gone too.

We want to thank our amazing daughter Sammy for being such a good girl for Grandma and Grandpa.  I also wanted to share some of the things that she did for us.  We think so much about the child that is going through the surgery, but we have to remember that it is difficult on the siblings as well.  As worried as she was about her brother, she was also worried about her Mommy and Daddy.  At one point I had commented that it actually gets pretty boring just sitting and watching a kid that is sedated and recovering.  She didn't want us to get bored, so she spent countless hours making worksheets for us to do while Owen was sleeping:




She hand-drew about 10 pages of these worksheets that she copied from books that she has, or made up on her own.  It took her days of hard work.  Sammy is an amazing little girl and we can't wait to see her again tomorrow.  Thank you Sweetie for all your hard work - we were never bored thanks to you!

Owen's aide Tessa gets a big thank you for taking such great care of Owen in the weeks before we left so that I could make the countless phone calls and fill out the miles of paperwork that were necessary to make this happen.

Of course Uncle Tom gets a huge thanks for ferrying our stuff around and helping to provide distractions while Owen was in the hospital. 

The pictures on these updates have been made possible through the kindness of my bestest and oldest friend Val who rushed this memory card reader:


to us when she found out that mine quit working while we were in quarantine and couldn't get out to buy a new one.

The doctors and nurses and support staff here at Medical City have all been amazing and worked so very hard to make both Owen and us as comfortable as possible and did such an amazing job with his surgery.  We couldn't have asked for better care. 

We received great support from Owen and Sammy's teachers at Tall Oaks Montessori school as well and we very much appreciate that. 

Finally we want to express our deep gratitude to everyone who prayed for Owen or sent him well wishes.  The constant flow of support from friends and family through email, blog comments and phone calls really made a huge difference.  We know that all of these positive thoughts contributed greatly to the success of Owen's surgery. 

I'll still be posting in the days to come of course, but I really wanted to make sure that these thoughts of gratitude were not lost in the hussle and bussle of everyday life.  With all of our hearts - Thank You!
Having a Good Day
Last night Owen snuggled up with his favorite bear right after his bath:


Today has been a good day.  This was the view of Owen's head first thing this morning.  He's looking so handsome with the extra hair being trimmed. 


His head still feels like a waterbed, but the swelling is going down quite a bit every day.  Owen seemed much less sensitive to his head being touched today, and he was in a good mood so we decided to take him out for a walk.  It was in the mid-seventies here today and partly sunny so we just couldn't resist getting him out into the fresh air.  Just two blocks away there is a Boston Market.  Daddy really likes Boston Market and we used to go when we lived up in NY, but there aren't any in VA so we decided to walk there and pick up some lunch. 


Tonight he's sitting up in his chair just babbling away and having a good time.  He has only taken two naps today and so has been awake most of the day, for the first time since the surgery.  Owen's mobility improves by the hour it seems.  His crawling is already better than it was.  This afternoon he woke up from his nap, crawled across the bed and put his head in my lap.  He's never done that before because he's never been able to get his head that far up.  It was the sweetest thing ever.  Setting up surgery half a country awake and dealing with the stress of major surgery - a complete hassle.  Having your son crawl over and curl up in your lap - priceless!

I also wanted to send out a quick shout-out to our daughter Sammy.  I know she's been reading these updates with Grandma and Grandpa and I wanted to say Hi!!!  We miss you and can't wait to see you on Tuesday.
Catchin' Up
All is going well with the recovery.  I realized that I have a bunch of pictures from the last few days that I haven't had a chance to put up.  Our laptop is rather antiquated and it takes some real time to process pictures on it and I just didn't have time yesterday.  So I'll pick up where I left off with the pictures as I tell what's been going on.

I posted some pictures from Thursday (the day after the surgery) morning.  But there were some more from that afternoon.  Owen made his first excursion out of the bed to take a little nap in the sun on Daddy:


Later that evening we had a nice visit from Owen's Uncle Tom who has been so helpful on this trip:


Moving on to Friday I got a few pictures of Owen's head with the swelling at its height:


You can compare this with when he came out of surgery:


The back of his head feels like a waterbed - it's all squishy and when he moves you can see it sloshing around.   Here is a view of his head with him sitting up, which he was able to do by the afternoon:


And here's a picture of Owen trying to eat with his hand all bandaged up to keep the IV in place:


Shortly after this picture we gave him a bath, which is required before you leave the hospital - and we have to carefully shampoo the incision every day for a few weeks.   Once his bath was done they deemed him fit to leave the hospital and we headed back to the hotel.  This was a day ahead of schedule, but since the swelling wasn't nearly as bad as it usually is with this surgery he didn't need the extra day in the hospital.

Which brings us up to today.  Today we had a minor bump in the road.  Owen threw up part of his breakfast, then slept for a few hours.  At lunch he threw up a bit again.  And finally I tried to feed him some Silk (Owen is allergic to milk) in the afternoon and he threw up part of that too.  So I called the doc because it seemed that every time we sat him up to eat he would get nauseous.  Dr. Fearon was awesome and called us right back and set up a CT scan just to be sure that everything was functioning.  We walked the two blocks over to the ER and got him scanned.  Dr. Fearon looked at the scan and then had the neurosurgeon on call (Dr. Sacco) take a look as well.  They both agreed that his ventricles looked smaller - which is expected as things calm down from the surgery - but that there was no sign of overdrainage.  It appears that Owen is still adjusting to the pressure changes in his head, and they are magnified as you sit him up and lay him down.  The doc in the ER gave us a prescription for some stuff that should help with his nausea while he adjusts.  We haven't used it yet though, I tried my old faithful remedy of peppermint tea and that seemed to settle his stomach well enough that he ate dinner without throwing anything up.  We'll save the prescription in case the peppermint doesn't work, but it has never failed me yet.

So, here is a picture of Owen sitting up before dinner tonight:


He always perks up after you've run him to the ER and gotten all worried :-)  The swelling is way down today and he has really increased his mobility so the pain must be considerably less in his head.  He still doesn't like it as you lay him down, but he was resting his head on us when he was sitting up and resting his head against the stroller without minding it - which he couldn't do yesterday.  So all is well and he is recovering nicely.  I think tonight I will give him a haircut.  They wanted the hair long for the surgery so that the incision wouldn't show as much, but those curls on top are really getting out of hand.  It's time to tame them down just a bit!
Just Sleeping

Not much new to report.  Owen is still doing well.  We moved from the PICU out to the regular floor yesterday in the late afternoon.  Unfortunately it was just as he was falling asleep and he woke up as they moved him - so no nap.  He ate a light dinner and fell asleep around 6:00pm and slept until 3:00am.  I fed him at 3:00am and then he went back to sleep around 5:30 am with a bit of Atavan.  He woke up and ate some breakfast around 7:00am but was really out of it.  He went back to sleep after breakfast and we haven't heard from him since.  The Atavan is out of his system by now and it seems to just be a nice healing sleep.  I think his pain levels have lessened to the point where he can achieve a deep sleep finally. 

His temp has been up and down today, topping out at 102.something and then heading back down a few times with tylenol and Motrin.  They have actually suggested the possibility of letting us out of the hospital tonight - but I think he needs to wake up and show them the alertness that I saw at 3:00am for us to do that.  If we don't leave tonight then it will probably be in the morning.  We are in Texas until Tuesday either way so it doesn't really matter. 

So, I been knitting and watching TV this morning and Daddy has headed down to get us some lunch.  There is still a good bit of swelling in the back of his head, but it will take weeks for that to disappear.  Usually they swell so badly that their eyes close and such, but that didn't happen with Owen.  We saw another kid here that had their head done just a couple of days before Owen and their eyes looked like golf balls and the skin was stretched tight with the swelling.  We expected the same for Owen, but thankfully it doesn't appear that it is going to happen. 

We are in the "exciting" phase of the recovery where you just sit back and watch....

CT Scan Comparison
Owen continues to become more and more alert and his pain seems to be lessening as the day goes on so all is well.

I just finished what I thought was an interesting little project.  I took the images from the CT scan that they did a few hours ago and put them side by side with the images taken before his surgery and lined them up as close as I could with them being from two different scanners.  The change is rather remarkable...

You can see these images by clicking here. Enjoy!
A Quiet Night

Last night was a pretty quiet one.  Owen slept on and off all night long.  He started to run a fever in the late evening so we've been giving him some Motrin to stay on top of that.  A temperature is expected within the first few days after any surgery that requires general anesthesia and isn't an issue. 

Owen is definitely sore, but he's needing less and less morphine now.  He went from 1:00am to 10:00am without any morphine, but they gave him some at 10:00 because they were taking him down for a CT scan and moving still causes him quite a bit of pain.  The scan went fine.  Dr. Fearon (the plastic surgeon) said that it looked good and cleared him to go to the regular floor.  Dr. Swift (neurosurgeon) just called and said that he agreed that the CT looked awesome. 

Owens numbers all look good.  He's keeping his hemoglobin up on his own so it doesn't look like he'll need another transfusion.  They took his cather out this morning and he's very happy about that.  They took out his arterial line (an IV that is hooked into an artery rather than into a vein.  It is used to continuously monitor blood pressure.) in anticipation of being released from the PICU.  Owen ate a good breakfast and has kept it down.  Last night he had some juice and then thought better of it and returned it back from whence it came.  He seems to be over that now.  At the moment he is resting comfortably.

Right now he only wants to lay on one side.  They have told us that we will have to start being meanies and forcing him to turn over so that his head doesn't end up oddly shaped.

We have had a number of people ask "where are the bandages?".  They don't use bandages here.  They believe that covering up wounds just traps bacteria and promotes infection.  Since they have an incredibly low infection rate here I am inclined to accept their word on that.  They just come along every few hours with some peroxide and Bacitracin to put on the stitches.  They also don't cut any hair when they do the surgery, so he isn't missing a big strip down the middle.  

I'll close with a couple of pictures that I took this morning.  The swelling is starting to increase (as is expected) so his head is looking a bit bigger and his left eye isn't opening quite as much as the left.  He's still looking great for what he has been through and the nurse tells us that he has less swelling than a lot of kids do at this point. 

Here is Owen signing for breakfast, or trying to with his bandages:


And some current views of his head:



But in the end,  he's still the same affectionate little boy:



We have been into see Owen and he looks great.  He's obviously a bit uncomfortable but they are managing his meds well.  He has signed for food and is sucking on his finger in a very typically Owen fashion. The amazing thing though is his mobility.  Even drugged and uncomfortable he obviously already has better mobility.  I joked a few weeks ago that when he woke up he'd probably try to sit up and end up vaulting out of the bed because he was used to lifting such a heavy head.  I was joking but it turns out to not be too far from the truth.  He's been able to haul himself all over the bed much more easily than he's ever been able to move before.

So now for the pictures.  I wanted to get a few before the swelling set in so that you can get an idea of where we'll end up.  There is a fairly good puddle there in the back of his head already, but the results are still amazing.  Here are two pictures from this morning before the surgery:



And here is a side by side of Owen in May, and Owen now:

2009-05-30-0139.JPG  2009-11-04-0018-after.jpg

Yeah, I'd say they managed to take a bit off!  We were amazed because we just weren't sure how much they would be able to take off, and honestly whether or not we'd even be able to tell.  And the back will go down a bit more in the weeks to come as the swelling goes completely down. 

He is sitting up drinking some juice now and he's doing really well all things considered. 

The Surgery Went Well
Both Dr. Fearon (plastic surgeon) and Dr. Swift (neurosurgeon) came out and spoke to us.  They said that the surgery went very well.  They were able to take off just about an inch from the top and took out about 150 ml of fluid.  The Chiari didn't seem to present as big of a problem as they feared so they didn't have to take out the extra bone at the base of the head that they were planning to.   They did have to give him a small blood transfusion, but that was to be expected.  Owen is already starting to wake up and move around and we should be able to see him soon. 

Dr. Swift has already called Dr. Grant, Owen's normal neurosurgeon to give him an update as well.  I'm happy that he took that step since Dr. Grant will have to take care of Owen long term. 

So all is well and we can't wait to see him.  The next few days will be a bit rough for Owen.  We are told that it isn't really painful, just uncomfortable.  There will be a great deal of swelling that will peak in about 48 hours and then start to go down.  It is expected that his eyes may swell shut, but that shouldn't last for long.  They are looking more like their normal selves within a week, but start looking much better by 72 hours. 

We'd like to thank everyone for their prayers and kind thoughts through this time, I am certain that they helped.
Surgery is done
We haven't talked to the surgeons yet, but I called in and they have closed him up, turned him over (the surgery was done with him on his stomach) and they are washing his hair.  We expect that we'll be able to talk to the surgeons soon.  Thank God.
Surgery is going well
I just called in for a checkup.  The nurse said that he's nice and stable and they are "on the home stretch".  He said they are irrigating now and that they expect him to be out and up to the PICU within the hour.  We'll update after we've talked to the surgeons.
Surgery Continues
And that title will probably persist for a while as the surgery will last 4 to six hours. They actually made the first incision at 9:23am. I'll probably give it at least another hour before I call in again because there won't be much to report.
Surgery is about to start
I just called in. He has all of his lines in, he's in position and he's getting his final hair washing. They expect to start the surgery in five minutes. It's great, you can call into the OR anytime and talk to the nurse. They also have computer monitors throughout the hospital that are updated with what they are currently doing. We should get our next update in 45 minutes.
He is in the OR
They have taken him back to the OR. It will take about an hour and a half to prep him. We expect our first update around 9:00am.
At the hospital
We have arrived and checked in. They said that they will come in about a half an hour to get him.
A Long Day
Well our long string of pre-op Dr. appointments is over.  The first three quarters of the day went quite well. They did the usual of height, weight, blood pressure and explaining where to go and what to do tomorrow.  They took the usual blood for testing.  They also did some things that we hadn't experienced before.  They took detailed pictures by a professional photographer for use during the surgery.  Then they measured every possible aspect of his head with different sets of calipers.  When all that was done we went to meet with the plastic surgeon Dr. Fearon.  That meeting went well.  He explained the procedure in detail again and checked out Owen's head.  We left in a pretty good mood.

Then came the meeting with the neurosurgeon, Dr. Swift. He brought up Owen's MRI and CT scans that we had brought with us and began to discuss the complications that he saw.  We thought that he had already seen the scans a month and a half ago when we asked if Owen was a candidate for the surgery, but as it turns out he saw them for the first time today.  He explained that Owen has a Chiari malformation, which is something that we had never specifically discussed with Owen's normal neurosurgeon.  Before today it didn't really matter - Owen does not have any of the symptoms that are usually associated with a Chiari.  Like everything else with hydrocephalus, a Chairi malformation can cause everything from severe symptoms to none.  So up until now it wasn't really all that important I suppose to know this.  However it does make a difference for cranial vault reduction surgery. 

If you follow the link above you'll get a more detailed explanation of what a Chiari malformation is.  Basically the problem is that when they change the shape of the head it is possible that they could put more pressure on the parts of the brain that are already too far down in the skull.  So he is planning on removing some bone at the base of the skull to allow the base of the brain some room to compensate.  This, of course, increases the risk of the surgery. He said that these problems would happen within a day or two of the surgery if they were going to happen.  If they do, then they would have to go in again to fix them. 

This was a very long appointment because Dr. Swift took a great deal of time to describe everything to us in great detail.  We considered the possibility of just going home.  After much soul searching though, we decided to go forward.  Owen's frustration with his inability to get up and go has been increasing daily.  We really feel that his quality of life is being heavily impacted by the size of his head and that there is a possibility of a great deal of benefit for him from this surgery.  But we really wish that this had been found a month ago rather than today at the last appointment 12 hours before the surgery. 

So the plan is for surgery to start tomorrow morning at 7:30 am. I'll be updating the progress from my phone tomorrow.  Keep us in your thoughts and prayers tomorrow please, it's going to be a rough, but hopefully rewarding day.
We Made It To Dallas!
It's been a long day, but it went very smoothly.  Big kudos to American Airlines for the smooth process through the airport and on and off the plane.  Owen did really well on the flight here:


He enjoyed looking out the window and seemed to be happy to be seeing something new after a week and a half quarantined at home. 

Much of the ease of the trip here was made possible by Owen's new stroller.  It's a Bingo IUS stroller from Kids Up. 


It's big enough to fit him, unlike his old stroller that I just bought at Target.  It also has an abductor so he can't slide down all the time.  You can remove the grap bar and replace it with a tray so that he can eat.  It also fully reclines so that we can change a diaper and so his little belly can get relief on days when he has to be in the stroller for a long time.  When I get back I'll explain the long saga of why it has taken so very many months to get this stroller, but we are just happy it got here in time for this trip.

Uncle Tom met us on our way down from the airport and delivered the packages that we had sent out last week.  We can't thank him enough for doing that for us.  It really helped not having to lug a lot of stuff through the airport in addition to Owen and all of his gear.

Sammy is at home, likely being spoiled rotten by her grandparents :-)

Finally you can see Owen's sleeping arrangements.  Owen is now too big for the porta-crib, but he's not ready for a plain old bed in a hotel room - he'd fall out.  So I got him a kid's air mattress.  It's a nice size, but he is a little Houdini and he tries (and succeeds) to climb out - the sides are only a few inches high.  So we have taken the cushions off the sofa and put them under a blanket to make a barrier all the way around:


Tomorrow we have a full day of doctors' appointments.  We have to meet the plastic surgeon, neurosurgeon, billling people, registration people and an anthropologist.  We're not exactly sure what the anthropologist will do - I was told that it has something to do with taking detailed measurements of Owen's head.  There is also an appointment called Photography and Media and I'm not quite sure what that's all about either.  Looking for nice before and after photos I guess. 

I'll post again tomorrow after all of our appointments to let everyone know the final plan. 

And, of course, I have to say Thank You so much to everyone that has sent us prayers and well wishes.  We believe in the power of positive thoughts and we can't thank you enough for your support of our little boy!
Almost Ready to Go
We're just about packed and ready to go. The 200 pages of forms from the doctor, flight, hotel and car rental confirmations and all such are in the bag.Owen's new stroller arrived on Friday so he'll be able to travel in something that actually fits him and suits his needs. Tomorrow morning we leave here at 6:00am to catch an 11:30am flight out of NC. This post is a final test of the software so that I can post from my phone. We have the laptop for posting pictures, but I'll use the phone to post during the surgery. Surgery is scheduled for 7:30am on Wednesday morning. Now the fun really starts!
September and October

Oh I have lots to update about!  This is going to be a long one, but I promise there are pictures and videos with this one!

Where to begin??  Well, let's get through the medical stuff first and then work our way to the fun new things Owen is doing.

A Pester of Doctors
There was a cute little anecdote that I wanted to share when I finally got back around to discussing Owen's seizures.  Owen's last seizure was much less severe and he was back to himself by the time the ambulance got to the hospital so we weren't in a panic when we got there.  We brought him to Roanoke Memorial Hospital, which is a teaching hospital and so you expect there to be some extra bodies in the form of students and residents, and this time was no exception.  There had to be 8 different people in the room all at once, with a doc, a resident and student from three different specialties all in at once.  We are generally patient with this sort of thing - everyone has to learn sometime.  This time I did get a bit testy when there were two different people actually trying to put their stethescopes on him at the same time while another was trying to examine him.  I kindly explained that hospitals are stressful places for children and that perhaps only one person should be examining him at a time :-)

Anyway, after they all filed out of the tiny room in the ER I turned to my husband and said, "If a group of geese is a gaggle, and a group of cows is a herd, what is a group of doctors?".  He answered, "I don't know, maybe a Pester?".  And so from that day forward I will never be able to see a group of doctors making rounds without smiling and thinking of them as a "Pester of Doctors".

OK, so before this August Owen had only had one known seizure and that was as a result of an incredibly high fever during a shunt infection.  On August 23rd he once again had an incident where he threw up and stopped breathing properly.  His O2 sats dove - we had seen this once before on April 12, 2008.  Both times when we found him he was limp and unresponsive and required intubation for about 8 hours before his body started picking up the slack.  He showed no sign of his body shaking as if in a seizure until hours after the initial incident.  In the April incident they *thought* that maybe he was having a seizure a few hours later because he was shaking, but it was so mild and it didn't *look* like a seizure, it looked like he was shivering.  This August there was no question that a few hours later he had a full blown grand mal (these days known as a tonic-clonic) seizure and it took ALOT of meds to stop it.  In the past few months Owen has also had a few minor incidents where he has thrown up a bit and then soon after gone to sleep but they were so mild and it was at nap time anyway and he woke up happy that I assumed it was reflux and late naps.

When he had another seizure on Sept 9th we started looking back at things in a different light.  This time there was no vomiting and no breathing issues, but it was a fully involved (meaning the entire body, not just one side or part) tonic-clonic seizure.  In both of his previous incidents we assumed that the breathing problems were due to an aspiration, but in both cases the chest x-rays were clean.  We were forced to accept that perhaps it was a seizure that caused the vomiting his breathing problems, not the other way around with the breathing problems causing the later seizures.  In all cases he was asleep when the incident occured.

We also looked at the fact that the last two seizures were associated with the onset of a virus.  In some kids the ramping up of the body's immune responses can trigger a seizure.  Given that we were entering cold and flu season, and every other virus season, it seemed that it would be prudent to put him on a low dose of anti-seizure meds to try and prevent this from happening.  Since Dr. Wilson, Owen's neurologist, had been so against medicating him in the past for a few isolated incidents we really valued his opinion when he said that he thought it was time.  So, in addition to the emergency Diastat, pulse-ox sensor and O2 that we had before - we have added a low dose of Keppra.

We were worried about side-effects but Dr. Wilson assured us that this is a very safe medication that has an extremely long track recond.  And seizures are bad, and in Owen's case infrequent but usually life threatening.  The thing is though, the Keppra seems to be agreeing with Owen.  He has made some sudden leaps in his physical abilities.  We know that he might have just been ready to do that anyway, but it is rather remarkable how far he has come since that last seizure.  So it certainly isn't hurting him anyway!

Cranial Vault Reduction Surgery
OK, I want to end with the fun stuff, so I'll get the surgery discussion out of the way here.  All of the plans have been made.  We have shipped everything we will need for the 10 days out to Dallas.  The airlines want $20 for the first checked bag, and then $30 for each bag after that.  Given the fact that we have to bring Owen's food since he's allergic to milk and eggs this would have gotten expensive to bring it with us.  Plus you run the risk of them losing the bags.  We figured it would cost at least $60 and probably $90 to bring our clothes and supplies with us.  It only cost $50 to ship it out (thank you Uncle Tom for storing it and bringing it to us when we come out!) and now we don't have to fuss with it in the airport.  Getting Owen through security is going to be interesting with all of his hardware.  The cochlear implant will set off the alarms nicely I should imagine - though it's fairly obvious what it is. 

This week we are in quarantine - nobody in or out. If Owen has even the smallest temp or sniffle they won't do the surgery so we're not taking any chances.  Sammy and Owen are experiencing a week of home-schooling.   We run a risk on the airplane but it's three days of driving from here to Texas and that just isn't realistic.

So in just over a week we'll be sitting in Dallas awaiting surgery again.  It's not easy to think of going back to the worries of infection and such, but when you see the videos further down you'll know why we think it's worth it.  Owen is working sooooo hard toward moving on his own and this will hopefully make that much more possible. We will be posting during and after the surgery from my phone and laptop so that you can keep up to date.

OK, Now the Fun Stuff
We had a dinner with his Aunt and Uncle, and then a few days later we did a cake with some family friends:



Sitting Up Like a Big Boy!
Owen's sitting skills have improved to where he can now have a snack in his green cube chair without sliding down onto the floor:





Mmmm, pretzels and juice - with a side of architectural training!

Remember how I said that he's made huge progress in his physical abilities in the last month, well here's the proof!  Owen is a tiny little guy.  He's below the charts on height, but his head is bigger than mine - so progress in self movement has been slow.  Suddenly though he decided he was going to do this, he was going to get to his toys under his own power and he wasn't going to roll to do it.  He started with the register in the little upstairs bathroom.  I have no idea why the register holds so much fascination for him, but if you put him down in the room he will do everything in his power to get to it.  And here is a video of him doing just that:


He has now gone from just crawling a few feet across the bathroom to crawling from the living room, through the office, down the hall, through the bathroom and into our bedroom.  He doesn't get his belly off the floor - it's more of an inch-worm kind of thing - but it's effective!

And now for the big kahuna.  For Owen's third birthday his Uncle (with design tips from his Aunt) made Owen a set of parallel bars that are fully adjustable.  They started out like this:



And ended up like this:


He took them apart for moving them to our house and he and Daddy assembled them in Owen's room:


And a few days later he was giving them a try in physical therapy!


And you can see the results here:


It has been a crazy, exciting month for Owen and we can't wait to see what he will do next.  I'll close with two pictures of Owen and his sister:



We Have a Surgery Date!
We have our surgery date!  Owen's head will get smaller on November 4th.  It's a bit farther out than we would have liked, but it's not too bad.  They did offer us October 12th, but that is a Monday.  You have to meet the surgeons the day before the surgery - so for a Monday the previous business day would be Friday.  However the neurosurgeons don't work on Fridays so we'd have to meet them on Thursday.  Since the pre-op tests and meeting take most of the day, we'd have to fly to Texas on Wednesday for surgery the next Monday.  That's 4 extra days of rental car, hotel, exposure to peoples in restaurants and such that might give him a cold so we couldn't have the surgery, and 4 extra days away from Owen's sister.  So we decided on the next possible date which is November 4th - a Wednesday.  We'll fly out on Monday, meet the surgeons and do pre-op on Tuesday, have the surgery on Wednesday.  Out of the hospital by Saturday or Sunday and fly back on Tuesday.  I hate to wait, but he's had the big head for three years, three more weeks isn't going to make a difference.

The bummer here is that both kids will miss Halloween.  Owen can't have the surgery if he has a sniffle or the blood work shows any sign of infection - so it's out of school for both kids for the previous week.  Owen's sister loves Halloween, so that's going to be a bit of a blow for her.  I have arranged for a Halloween party here at the house for some of her friends two weeks before Halloween though - which should help make her happier about it because she loves parties. 

Two months seems like a long time away, but I'm sure the time will fly with all the school stuff coming up.  The timing is good too in that he should be mostly healed before the big holidays hit. 
Owen is Going to Get a Smaller Head!
Just wanted to do a quick update tonight to say that we have finally made a decision on the cranial vault reduction surgery.  We talked to Dr. Fearon, the craniofacial surgeon at the Craniofacial Center in Dallas, on the phone this morning.  We had a long list of questions and he took the time to answer every one. 

It does not appear that Owen's cochlear implant will have to be moved at all.  The worst complication that he reported with this particular surgery was a child about 15 years ago that was very sleepy for several weeks after the surgery.  While that child recovered back to their baseline eventually, he said that it taught them to do several smaller surgeries rather than one big one with radical changes.  They have not had an infection with this surgery.  He also uses a technique that saves most of the child's own blood that is lost during the surgery and gives it back to them - vastly reducing the need for transfusions.

The basic idea is that they use the "bubble" (aka the reservoir) on the shunt to pump out some of the CSF.  If there is a lot of fluid they may tap the shunt (put a needle in the reservoir) but they try to just pump it down.  As the CSF is drained the ventricles become smaller and the brain will compress down.  Once they have drained the CSF that is safe to remove, they take the skull and reshape it to match the new shape of the brain.  They will work on the back of Owen's head for the first surgery - which is the area with the largest amount of extra weight. Then, if he needs it, more surgeries will be done in future years. 

The surgery takes about 2 hours, though they are in the OR for about 4 hours - there is a lot of prep time.  Dr. Fearon already has all of Owen's latest CT's and MRI.  We'll go down the day before the surgery to meet Dr. Fearon and the neurosurgeon to ask final questions and for them to have a last look at the actual Owen to make sure everything is as it should be. He'll be in the hospital for about 4 days. 

In a stroke of Providence my brother-in-law Tom is currently living in Dallas with his son Ryan who is on a AAA hockey team there for the year (Ryan is a very good hockey player and has traveled all over North America to play).  They are staying just a few minutes away from where we will be at Medical City Hospital.  We don't get to see them very often because normally they live in Colorado with the rest of their family.  Tom has offered to help us with airports and transportation and such which will be very helpful.  Plus it's always a good time to hang out with Tom - maybe I can even convince him to make some of his famous wings while we're there!  And I'll get to be an Aunt for a few days, which is rare because all of my nieces and nephews live in other states. 

This hasn't been an easy decision to make - it was even harder than the cochlear implant surgery which was a much smaller procedure but we spent ages agonizing over that one anyway.  Once again, however, we feel that we have to give Owen the best chance possible for development and it has become clear that his head size is really holding him back.  My husband and I have joked that when Owen wakes and tries to sit up he's going to fling himself forward because he's so used to moving that huge weight!

We don't have a surgery date yet. It takes some coordination between the craniofacial team and the neurosugery team to find a date when they can all be there so we expect to hear back in a few days with a final slot.  Then we'll have to make plane and hotel reservations.  There is still a lot to do, but at least now we have made the decision and feel that we can just get on with getting it done.

Did I say a quick update?  This is what happens when a computer programmer that types well over 100 words per minute sits down at a keyboard and writes a "quick" update.   Have a good evening!
Normalcy and the Next Step
Owen is pretty much back to his normal, happy self again.  He's still taking a bit longer of a nap than usual, but he slept through the night last night for the first time since his "incident" so we're happy about that.  He's back to terrorizing the house in his walker and causing general mayhem.  :-)  Here he is today with his sister:



He's due to start preschool next week and I don't see any reason he can't go ahead with that.  He'll be going to the same school as his sister.  He'll be there three days a week to start so that we still have time for therapy and doctor's appointments, and he's just going for the mornings.  Last year he went there one morning a week and he loved it.  I think it will be absolutely wonderful for him to spend more time with other kids, and the teachers in that classroom are really amazing with him. 

So, now that things are back to normal it's time to get back to the big question we were working on before our little stay in the PICU, and that is, "Can we make Owen's head smaller?".  We have gotten wonderful advice from several Moms on where we might go.  My heart wants to start in Nebraska because that's where my hydro-cyber-mom friends Sherri and Jill live.  If you click on the link for Sherri you'll see her son Miles who went through this surgery recently and their surgeon did a great job. And it would mean that I could hang out with Jill and Sherri while Owen was in the hospital.  I've also gotten help from Gage's Mom who has been very helpful and has suggested a center near her. 

In the end though, we have decided to start with the Craniofacial Center in Dallas, Texas.  Tabitha, my oldest hydro-cyber-Mom friend went there with her son Brandon a few years back and she was impressed. The plastic surgeon at Duke also highly recommended Dr. Fearon, who is the craniofacial surgeon at the Center in Dallas.  The Craniofacial Center is a rather unique place in that they do not do any cosmetic surgery - no face lifts, breast implants, nose jobs, etc.  They only work on congenital craniofacial abnormalities.  Almost all other centers in the US and the world make their money on the cosmetic stuff and then do a bit of the abnormalities to keep it interesting.  Dr. Fearon has dedicated himself to just helping people with congenital problems.  And our first responses from them have been very promising.

When I first started seriously thinking about this surgery I tried to contact Dr. Stelnicki in Florida after reading this article.  It was intriguing and I thought it was worth a look.  I emailed the office and his assistant sent back a message that yes, they still do this surgery but no, they wouldn't talk about it over the phone.  Even to ask basic questions I would have to make a trip to Florida - not a quick trip from Virginia.  This did not give me a warm and fuzzy feeling.  Things couldn't be more different so far at the Craniofacial Center.  I called a few weeks ago asking if they did this surgery.  Cindy, the nurse practitioner there, talked to me on the phone at length about how they work there, how to send images and such via email so that they could do an initial assessment without the need to travel and how they handle insurance.  Oh, and yes, they do in fact do the cranial vault reduction surgery there.  She said that most of their patients are from out of state or out of country and they do their best to do as much as possible before you come out so that you don't waste a trip if you can't have the surgery or can't afford multiple trips.  I was feeling much better about our reception there.

So after we got Owen back home from the PICU, I sent the images of Owen's last CT and MRI, as well as some recent photos out to Dr. Fearon.  Within a few days he had looked at the images and sent back a message that from the first impression it appears that Owen is an excellent candidate for this surgery.  He was up front right in his first email that they have done 8 of these surgeries in the last 5 years.  He explained his initial thoughts for tackling the back of his head first and then possibly doing later surgeries for the top of the head so that each individual surgery was lower risk.  He wrote that if we were interested we should call Cindy back and she could set up a phone consultation where we could ask all of our up front questions.  I really liked his tone and his up front offering of experience levels and such. No hemming and hawing with vague terms like "we've done lots of them" or some such.  And if you look at his website it really appears that he encourages people to ask specifics and to expect clear answers.

And that is where we are now. I'm going to call on Monday to set up the phone consult so that we can ask all of the questions that we have running around in our minds. No decisions have been made yet on whether or not to actually do the surgery, but I feel we're getting a lot closer to having the information that we need to make the decision.
No Answers Yet...
We are home, yippee!

The upshot of today's meeting with the plastic surgeon was basically, "We haven't ever done that surgery here and we don't really feel comfortable in doing a case like Owen's as a first attempt.  You should look elsewhere for more experienced people. " While I appreciate any doctor that admits that they might not be the right one when they don't feel comfortable with a procedure, I think we probably could have accomplished this discussion with an email.  He did suggest some other doctors that have a good reputation and made suggestions for the questions to ask. I have also received great feedback from a few cyberMom friends and I'll be pursuing all of these leads in the upcoming weeks.  Owen's neurosurgeon has also kindly offered to help us with our search. 

So our feet are just on the very beginning of the path and we will see where they lead us in the upcoming weeks.  I have faith that we will find the right answer for Owen - throughout our journey we have always seemed to end up where we needed to be.

On a lighter note, I thought I would post a picture related to yesterday's post.  I said it was too hot to go to the zoo, so Owen had to settle for the tank at Red Lobster.  It was a lively bunch and Owen sat there for a half an hour - with completely rapt attention - watching them crawl around:


I'll keep everyone posted as we take our next steps, and as always I thank you all for your words of encouragement!
Busy Week
This is going to be a busy week for Owen and I.  We are in Durham, NC right now (3 hours from home).  Today we had speech therapy in Greensboro (2 and a half hours away) - which he wasn't very much in the mood for.  But even his worst sessions these days are producing way more than his best sessions a year ago. 

Tomorrow morning we will be at Duke for a CT scan - his 6 month checkup for his new shunt, and then we'll meet with his neurosurgeon afterwards for the results. 

Wednesday we have a free day at the hotel and then Thursday we will meet with the pediatric plastic surgeon at Duke.  We are looking into the possiblity of cranial vault reduction surgery for Owen.  This is the surgery where they reduce the size of the head.  We had looked into this surgery a year and a half ago and dismissed the idea due to the risks involved.  Certain things have changed to make us revisit this decision again. 

The first is that his head size has continued to increase much more than we had hoped for.  His head circumference is now 56cm, but that doesn't really tell the whole tale because it's really the height of his skull that is adding the most weight.  It was one thing to wait for him to grow into it when we thought he'd catch up by the time he was three, but now that he's almost three we are realizing that he still has a long way to go.  It is also true that while he seems so big to us, he is only in the fifth percentile for height - and some of that height is several extra inches of skull.  I had hoped that he would get his Daddy's height (he's 6 feet 1 inch) but instead it looks like he's taking after his Mommy who is only five feet tall.  So it's taking him even longer to catch up because of that.

The second is that we are realizing how much development is really being held up by his head size.  We never realized how much physical abilities are tied into intellectual development until recently.  I have written about this in the past as explanations for why Owen isn't able to do many things - for instance you don't learn to use your two hands independently of each other until you have to use one to stabilize yourself and the other to do an action, which you normally learn while holding onto something to help steady yourself as you stand.  Each time he manages to reach another physical milestone, we suddenly see leaps in intellectual ones.  If this could help speed up his intellectual development along with his physical development then it becomes even more of a consideration.  And if it means that he could gain a few years of running with his sister and the other kids, that's worth something too.  Owen can stand up and he can sit up, but only if you overcome gravity for him and get him upright.  He is still unable to push up from the floor to a sitting postion, his head is just too heavy. 

Finally I have met several parents that have been through the surgery and I have seen the benefits that it has brought them and so we have resources now that we didn't in the past to draw on.  It's less abstract when you can actually talk to someone about what it was like.  A big thanks goes out to Sherri and Maureen for putting up with all of my questions and answering them so willingly and thoroughly!! 

We haven't made any decisions yet.  This is a major surgery and there are a lot of things to consider.  We are just starting the process, but hopefully we will get some answers this week that will at least tell us whether this is worth pursuing given Owen's specific anatomy, or if we should just stop thinking about it.  I'll keep you posted as the week goes on.

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