The Amazing Owen
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Owen's First Steps!!
Could you hear our screams of joy all the way to your house/office?  Because in therapy today Owen decided to take his first steps.  He did this several times, but this is the one that I caught on video.  What is there even to say about this?  There just aren't words...

and a smaller version for those who don't want to download 59MB...

Oh Yeah!!!!
Giggling and Walking
Earlier this week Owen got his shiny new AFO's.  Actually, they are an AFO/SMO combo pack.  Here are the AFOs (Ankle-Foot Orthotics for those who don't live special needs acronyms) with the shoes on:


and here they are with the shoes off:


Notice the busy bees - those were Owen's choice and he loves the color yellow.  And finally, you can take the AFO part off, and have just the SMO left behind:


This way he can build strength with just the SMO, but have greater support for walking.  And check out his greater abilities and confidence with the walker.  You can see where we started with the walker after his Chiari surgery here, but check out below to see what he can do now: (53 MB)

Or in a smaller version:

And just to make your absolute day, I will share Owen having a fit of giggles (possibly because Kathy the PT is tickling his belly while she holds him).  Guaranteed to make you giggle too!

Large File (88MB)

Smaller Version:

Forever Days
There are some days that you know will stick in your mind forever - that you are certain you will recall vividly when you are 90 and be able to remember every detail.  Every parent carries around a collection of these days in their pocket and brings them out every now and then.  We have a large assortment from our daughter - she was our firstborn and everything was new: the first time I was called mama by my own child, her first steps, her first day of school, her first set of straight A's and so on.  I'll admit that when we had our second child that I was afraid that things wouldn't seem as amazing as they did the first time.  I was wrong.  If you read my last post you saw that Owen has finally achieved independent walking with his walker.  I was amazed the day that we saw that and could not wait to post it to share with the world. 

But somehow it didn't seem completely official.  There was still one last step to make it real.  You see there have been many, many people that have helped Owen along to get him where he is today.  Each and every one has been vital to improving Owen's quality of life: Dr. Kurtzberg who gave us our first hope with the cord blood, Nacol the physical therapist that has been with Owen since he was a month old and has never given up, her boss Kathy who is ever the optimist about Owen's future, past aides, other therapists that have come and gone, Pat the special ed teacher who can bring out the best in him, Julie the music therapist that always makes him smile, Angel in OT (and Vesna before her), speech therapists like Melissa who have known him for years and keep up the effort even through enormous setbacks brought on by seizures, Dr. Fearon in Texas who takes on the kind of surgeries that other plastic surgeons don't want to deal with because there isn't enough money in it - but whose efforts in making Owen's head smaller have had a life changing impact, along with Dr. Swift who did the neurosurgery portion of that head reduction surgery, Dr. Buchman who placed a cochlear implant for Owen when many others would have said it wasn't worth it because the odds were that due to his brain damage he would never talk - he understood that the unbelievable value of the human connections made through hearing are worth it even if speech isn't possible, Dr. Gallentine who has finally gotten Owen's seizures under control and without whom we would not have intellectual development at all, Barbara the nurse who has worked wonders in the last months to push Owen to his greatest potential.  And that doesn't even mention the support staff for all of these people that help with getting appointments, scheduling surgeries and everything else and other therapists that have come more recently.  Owen has a ginormous support staff that boggles the mind when you stop to think about it.

But still there is someone missing from that list.  Farther back than all of them but Dr. Kurtzberg who was our first contact at Duke - there was Dr. Grant.  Dr. Grant has taken care of Owen since the day he was born.  Through all of these tough decisions he has been there to help us know when it was time to wait, and when it was time to go for it and commit to another surgery.  And many times it has been he who has taken that risk on personally and performed the surgery.  He has cared for Owen and about Owen from the very beginning.  When Owen went under the knife for the last time in March it was with the hopes that perhaps the surgery would help with Owen's walking.  Yet another leap that we all took together hoping for the best, but not knowing what the outcome would be.  And so it seemed that somehow the progress wouldn't be official until Dr. Grant got to see it for himself. 

Today we went down for a checkup and I brought Owen's walker.  Sammy set the walker down out in the hall and I put Owen in it.  He grabbed on and headed straight down the hall as confident as could be.  He tried to get into the doctors' workroom and I had to turn him around.  He headed all the way back down the hall and went straight to Dr. Grant and put his arms up to be picked up.  There really aren't words to describe the feelings in that sort of moment.

I only got a few seconds of video because he took off so fast.  I have debated on whether or not to post it because it's so short compared to the walk that he took, and yet it seems sad not to at least post that little bit and so I will. 


This is definitely a forever day.  Seeing Owen walking down these halls where he has been carried since birth was really something.  Each and every step that we have all taken to get here were worth it to see the steps that Owen took today.

I also can't close without a mention of the Hydro Family Gathering that happened on June 23rd.  This deserves an entire entry all its own and I will try to get through all my pictures and put one up soon.  It was an incredible day.  18 families met up in Nashville, Tennessee.  They came from Virginia, Georgia, Washington State, Nebraska, Oklahoma, Missouri, Wisconsin, Ohio, Texas, Idaho, and Kentucky.  (If I missed your state email me and I'll add it).  This is another one of those things that is really hard to describe in words. To spend time with people who really understand your way of life, to feel truly at ease with your child who is "different" from the norm because in this group they are normal.  And it is awesome for the siblings too - to meet others that share their lifestyle and understand what they have been through.  I will post lots of the wonderful pictures that we took in the coming days, but for now here is a group shot:


And a link to the Shutterfly page with lots of pictures on it: Shutterfly Share Page (created by Josephine Anderson)
Oh Yeah, The Surgery Was Worth It
I'm trying to get this up really quickly to share with family, but let's just say that Chiari decompression surgery was worth it.  Owen has NEVER been able to propel his walker on his own without someone stabilizing it for him.  Below is Owen in his walker today, it took him a minute to get going, but then he really took off!

Or in full HD (148 MB)

With huge thanks to Nacol (Owen's PT) who has never given up on him and to Barbara his nurse that has worked with him every day for months to get to this point.
New Wheels at Last!
OK, we'll get to the wheels in just a second. First though I suppose I should update on the recovery from his Chiari decompression.  The incision had been healing nicely but in the middle of the night about a week or so after the surgery Owen thought that it would be fun to tear off his bandages and scratch at his incision causing it to open back up in one area.  Not a good choice.  Despite our best efforts to keep it cleaned out it got infected so we tried giving him Keflex to fight the infection but it just didn't go away.  So last Friday we headed back down to Duke where they cleaned it out and stitched it all back up.  They also changed his antibiotic to Clindamycin.  The incision is now looking much better and I think we're nearly there now.  We have to go back on the 24th to get the stitches taken out.

Otherwise he is doing very well.  The Clindamycin has made his tummy feel icky despite large quantities of probiotics, but we only have a few days to go.  The choking on liquids has now completely disappeared unless he's just gulping his drink too fast.  He was really in a great mood until his tummy started feeling sick.  He thought very hard about having a seizure yesterday, but thankfully Jigsaw was on the job and helped us to head it off.  He is just now getting his strength back so it's still going to be a good while before we can tell about the walking.  He is getting more and more daring about what he is willing to try though, so we're hoping that is a good sign. 

So, onto the wheels!

As you may recall we started the process of getting a new wheelchair back in January.  We wanted something lighter that he could move on his own if he so desired.  Well today it finally came.  It's a Ki Tsunami Little Wave.  I should have thought to take a picture of it next to something with some scale because it is seriously elfin in size.  Here he is today giving it a whirl:


And he even played with the wheel a bit. I don't think he has any idea how to actually make it move yet - but at least he's curious about it rather than screaming about it. And when Daddy did wheelies with him in it he squealed with laughter!


Here are some views without him in it:



This thing is ridiculously light, I just can't believe how easy it is to push along.  I'm going to love it I just know it. 

We had originally thought that we might donate his old Bingo stroller but I don't think that's an option.  As much as I'm hoping his new one will save my back and provide opportunities for independent mobility, the old one still has too many uses.  For instance, here is Owen last week after getting his new stitches:


The Little Wave doesn't recline and it doesn't have a full back so pushing him around after sedation won't work.  We also found that while the Little Wave goes like gangbusters on flooring or concrete, it's not so great on our gravel driveway where we go walking every day in warm weather.  So we will keep the Bingo for those times when the Little Wave won't be able to do the trick. 

It's going to take a bit to figure out the logistics of how to haul what we need on a smaller chair too.  You can put enough stuff to survive for a week on the cargo bag I made to fit under the Bingo. There isn't anywhere near as much room on the Little Wave but I think I can make it work.  His oxygen tank fits nicely behind the seat:


I will probably make a small bag to tuck that all into so we don't have tubing and a mask falling everywhere, but it is convenient how it fits in there. I have a temporary bag that I have hung on the back for now, but I'll need a smaller one so I'll make that in the next few days.  You can buy them of course, but insurance won't cover a bag (it's a convenience item apparently, rather than a necessity to carry diapers, meds, food and toys) and they are really expensive to buy.  So tomorrow I'll get some cool fabric and make something that fits and looks appealing to a five year old. 

Zoom, zoom, zoom!
Recovery Update
Once we get home it is always harder to update since we have so many everyday things to distract us, but I wanted to put up a quick update before I went to sleep.  

Owen continues to get better each day.  He still sleeps a lot and the incision site is still tender if you touch it in just the right way, but overall he is doing much better than we had expected at this point.  He isn't eating at his usual level either, but then again he hadn't been eating and drinking all that well before the surgery - we are beginning to suspect the Depakote on that.  

The good news is that even though there is still discomfort and a lack of stamina, he has actually been in a good mood.  We had been through a few months of severe crankiness before the surgery and for the most part he seems to be happier now.  And if he's happier now I can't wait to see what he'll be like when he has completely healed.  We have also noticed that he isn't choking and spluttering his way through his drinks now like he did before the surgery so that is another hopeful sign.  It will be a while before we can really tell anything about the walking though.  He has pulled himself up to stand twice, but it really wipes him out and unless he does it himself we haven't been pushing it.  

So, if you are going to need to recouperate, it's nice to do it when it's 80 degrees out and bright and sunshiny!  I brought out the blanket and we hung out in the sun yesterday.  In between naps Owen was feeling a bit more lively and you can see below that he was in a good mood. 

Today we took off the bandages and gave him his first shower - no laying down in the tub in the water for 6 weeks, but we can use the hand sprayer for a shower now.  I had given him sponge baths to clean him up when we got home, but today we started washing the gunk away and that has to feel better.  It's going to take some time to get rid of all the glue and stuff, but at least maybe it itches less now.  

So, all in all things are going well and we just need time for everything to heal.

Well, there had originally been some talk about sending us home today, but Owen was still not putting out quite enough in diapers and he was running just a slight fever and he woke up this morning rather upset from pain.  So it was decided that he needed one more day to be sure that he was ready.

Yesterday we had the fun of a few visitors.  Dana Cotten and her wonderful son Blake came to visit.  I'm really sorry that we didn't take any pictures, but Owen was not in a good mood at all.  Still though, we were getting stir crazy and sit was good to have a distraction.  Later that evening my brother and his family came over.  They brought us dinner from our favorite local restaurant - Spartacus.  It was soooo yummy! And we did attempt a picture, but Owen was only sort of cooperating


It was great to see them again, and we really enjoyed dinner. 

Owen has perked up considerably this afternoon.  I think that it really helped that PT came by and got him out of the room for a bit to stretch out.  He also got his first try at walking.  One of the big things that we were hoping to get out of the surgery was some improvement in his balance so we were anxious to try it.  We know that it will take time to help even if it does help out a lot in the long run, so we are trying not to read too much into today's experience.  But we both felt that he *might* have had some better balance today than he has in the past.  I took a little video so that we'd have something to compare to later.

So hopefully things will progress and we'll get to go home tomorrow.  He has done much better since getting him somewhere where he could walk and stretch his legs.
Happy Friday
Yesterday they moved us out to the floor and he had a good night.  Today the pain seems to be peaking, but we are starting to ask more of him.  He was supposed to get PT yesterday and to sit up, but they never got around to it.  So this morning we sat him up ourselves and let him eat some breakfast.  He did well, but only lasted about 15 minutes.  They are encouraging us to take him for walks around the floor today and PT will be coming to see him.  They have come in with hefty pain meds and we hope they will take effect before they try to move again.  

When we had him on Daddy's shoulder to move him from the PICU yesterday I snapped a picture of his bandages:

And here is one of him eating this morning:

So things are going along as well as expected.  Hopefully the worst of the pain passes after today and we start the upswing tomorrow, but we are getting the occasional smile and we are headed in the right direction.

Good Morning from the PICU!
Owen did well through the night.  He has had a fair bit of pain, but they are being generous with the pain meds.  This morning they have taken out his arterial line and his catether.  There has been a bit of a question about his hemoglobin which apparently is borderline for a transfusion, but since his oxygen and blood pressure are fine they are just going to wait and see on that for a while.  There hasn't been any drainage from the site which is good.  His dura was so thin that they had to use a pretty big patch in order to get out to stuff that was thick enough to attach to so we're watching for leakage.  Dr. Grant says that he stitches it up under a microscope so it shouldn't leak.

He is on Vancomycin as a preventative antibiotic and toradal and oxycodone for pain - along with morphine if needed, but he seems to be holding his own without it now.  

Here is a blurry picture from last night, you can see that he was still pretty puffy from the fluids, but he playing with his book and not doing too badly:

I have downloaded a nifty photo editing app for the iPad and got a little artsy with the picture that I took this morning.  It's dark in here so it came out grainy, but with it smoothed out and made black and white it's not too bad:

He's just quietly watching cartoons and hanging out in between snoozes this morning.  The plan is to move him out to the regular floor sometime today.  

Details While We Wait
The surgery is done, but they tell us that it will be a while before we can see him so I thought a good use of the time would be to post the details of what Dr. Grant found while he was in there.  

He said that Owen's anatomy was really abnormal in the back of his head, more so than you would had thought from his obviously abnormal MRI.  Normally the cerebellum is centered over the spine, and normally the two sides of the cerebellum are about the same size.  Apparently everything back there was skewed and rotated, and one half of his cerebellum was much bigger than the other.  There is a piece that hangs down from each side of the cerebellum and these are called the tonsils.  Apparently the left tonsil was much larger than the right one, and it was seriously squished down into the spinal column. It was also discolored, which is a sign that it was under a fair amount of pressure. He also said that there was so much pressure there that the dura (the membrane that covers the brain) was stretched so thin it was transparent he could see through to the cerebellum. This bodes well for the surgery helping him. If he had gone in there and found that there wasn't any real pressure, which can happen, it would mean that we wouldn't be as hopeful that it would help.

Dr. Grant feels that the surgery was a success and that he was able to open everything up and relieve all the pressure. Owen will spend tonight in the PICU, but he isn't up here yet. Dr. Grant still needed to go back in and help with the finalities, and they hadn't even gotten the breathing tube out. He just wanted to come out and let us know all went well, and now they need to wrap things up before he gets brought upstairs and we get to see him.

We can't thank everyone enough for their prayers and well wishes today, we know they helped with this wonderful outcome!

He Is Done!
All went well.  Details to come tonight, but he did well!
Surgery Has Begun
They started the actual surgery at 3:50 pm.  It'll take about 3 hours from then.
He's Out!
He is unconscious now and they are starting their prep.  They will let us know when they actually start the surgery.  
Moving on to Preop
We have moved to pre-op.  Still have to meet with surgeon and anesthesia, but hopefully he'll go back soon.
More Features, Surgery in One Week

This post is honestly mostly to test that I didn't break anything when I uploaded the new code tonight.  You will note now that at the bottom of most entries there is a list of tags.  If you click on one of those tags it will bring up all of the posts that contain that tag.  So if you want to see everything about Owen's Chiari that he's about to have decompressed, click on the Chiari tag at the end of this post and you will see all of them since we found out about it.  One of these days I will have to take my earliest entries which are not in blog format and change them over so that you will be able to search those as well, but for now you can get most things.  You will also see that there is a list of tags on the right menu under the heading "POSTS ABOUT" and you can click on any of those to take you posts about any of those subjects.

Owen's surgery is one week from tomorrow (or today by the time most of you get up in the morning and read this entry).  Time has really flown by and it's almost here.  I don't have any pictures ready for this post, but I did think it might be helpful to post a link to a very nice description of the surgery that they are going to do on Owen.  If you are interested in learning more about what they will do to fix his situation, click here.

Thank you all for your thoughts and prayers as we head into the home stretch!

Surgery Dates and New Features
So firstly I realized that I had never updated the blog with the actual surgery date.  Owen will have his Chiari decompression surgery on March 14th.  While I understand that it is a totally unrealistic idea - I just wish that when you decide to have surgery that they could put you on the schedule for the next day.  The month and a half of waiting is really hard to do, but I think that over the years I have gotten at least a little bit better at it.  It at least gives us some time to prepare and get things in order so that we can concentrate on just the surgery and the recovery if we have all of the other daily stuff taken care of.

Part of the preparation is putting in a bit of time upgrading this blog.  It doesn't really look much different, but emails have not been going out with the updates lately (who knows what they did on the servers to make that stop working) and I got that fixed (I hope).  I also have really wanted to add the ability to have the blog show up in News Readers and to have the update times work properly for those using a Blog List in their Blogger Blog (say that three times fast).  I have finally managed that.  You can follow the link on the right that says "RSS Feed" and copy the address from there into your Blog List widget on Blogger, or into your News Reader or you can just copy it here: 

Otherwise we're just hanging out and enjoying the wildly swinging weather. One day we're laughing in the sun:


And even getting to have our lessons with Ms. Pat outside:




With big thanks to Ms. Pat for being a good sport and joining in the outside fun!

But then in the blink of an eye we were out playing in the snow...


Not a bad way to pass the time!
Must Have Been Missing the OR
OK, this one is going to be brief by my standards because I'm seriously needing my bed, but I know that family and friends are waiting to hear the results of today's exams and I wanted to get something up here tonight.

As mentioned in my last post we were headed down to Duke today to do a detailed CT of Owen's cerebellum and upper spine.  Owen has a Chiari malformation which I've mentioned before (read about it here) which is where his cerebellum pushes down into his spine.  We have known about this for years, but since it didn't appear to be causing any problems we have not done any surgery on him to correct the situation.  When he had very little mobility before his head reconstruction we really couldn't tell if it was affecting his legs or not, but now that he is upright the evidence would suggest that perhaps it is causing an issue. We have also had a lot of problems recently with him choking on liquids.

So today we did a detailed CT scan of his upper spine and cerebellum (Owen can't have an MRI due to his cochlear implant).  The scan showed that the Chiari has not worsened from previous scans, but it has also not improved.  The hope has been that with the pressure lowered in his head after shunting that the cerebellum might move out of the spinal column on its own.  This has not happened. 

After much soul searching and talking with Dr. Grant today, we have decided to go ahead with the surgery to decompress his cerebellum.  There are no guarantees that this will make it possible for him to walk, but it is his best hope.  Owen also has a lot of unexplained pain, and Chiari's can be quite painful so we are hoping this might help him with that as well. And maybe he'll stop spluttering through his juice. It is a fairly major surgery that will take 6-8 weeks of healing and will require some therapy to get back to the head control that he has now as they will cut the muscles in the back of his neck to get to the upper spine.  But in the long run we are hopeful that this will improve his quality of life.  His surgery will be in mid-March and I'll post more details as we get closer. 
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!
All Good News
I`ll post the details later when I`m home but the neurosurgeon says no surgery is needed for the Chiari. Woo hoo!
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!
We're Still Around
So, it has been just one day short of a month since my last update and just a few things have happened :-)

On April 19th we headed down to Durham for a whole round of appointments.  The first was more for fun.  We got to see Dr. Kurtzberg and she gave us a tour of the stem cell facility.  This was incredibly cool and I really wish I could share lots of pictures, but alas while my camera was with me, my memory card was not.  So the best I could do was a couple of not-so-great pictures with my phone.  This is one of the storage tanks for the cells:


These freezers contain liquid nitrogen that keep the cells frozen.  There are quite a few of these freezers, but if you have cells stored at Duke, maybe your kiddo's cells are stored in this one!

We got the full tour and got to see the machines that separate the cells from the rest of the blood, the ones that count the cells, the ones that inspect the cells and all kinds of other things.  This was incredibly interesting and honestly the next time I'll bring my camera and my memory card so that I can share it with you.

We spent the night in Durham and then headed out first thing in the morning for the audiologist.  That went really well.  Owen was in a good mood and they were actually able to do some real testing for the first time in a long time.  They found that he is still responding to voice down to 10 dB, which is great.  However they found that he was responding to low tones much better than the higher tones, so they gave him a new mapping with the higher ranges boosted by a bit.  We have actually seen a noticeable difference in the noises that he makes.  He has definitely added a number of new high pitched sounds to his repertoire since then.

We had a few hours between that appointment and the one with his neurosurgeon that afternoon.  To pass the time we headed down the street to a mall where they have an indoor toddler playground.  Everything there is sized for toddlers, and the floor is made from thick foam.  Again, my camera wasn't in working order so I had to take pictures with my phone.  If you are taking pictures indoors then your subject has to remain perfectly still in order to prevent blurring.  Owen is never still, so the pictures are always blurred.



Owen was particularly keen on a fun-house mirror that they had on a wall:


It's a great place to let him get out and crawl for a while instead of just sitting in the stroller all day.  Eventually the fun had to end and it was off to Duke for the neurosurgeon.  This was just a checkup, and we didn't need a CT scan this time.  The purpose was mostly to let the neurosurgeon see all of the great progress that Owen has made.  Unfortunately they were running really far behind and by the time Dr. Grant came in Owen was fast asleep.  But we did discuss what is next for Owen. 

Owen has a Chiari malformation, which means that his cerebellum has been pushed down through the base of his skull by a bit.  This hasn't ever caused any problem with his spine in the past, because his huge head gave lots of room to keep the pressure on the cerebellum low.  When we made his head smaller in the fall, we also increased the chances that the Chiari might cause problems with the spine.  If the cerebellum starts putting too much pressure on the spine you can get something called a syrinx - which is kind of like hydrocephalus of the spine.  With a syrinx the CSF builds up in pockets in the spine and can cause all kinds of problems including problems moving ones legs, problems with swallowing and other issues.  We knew about this risk when we did the cranial vault reduction, but they felt that the risk would be small given that Owen's head would still be fairly large.

A small risk is still a risk though, so we need to monitor the cerebellum and spine.  The problem is that in order to monitor this situation you need an MRI.  MRI's and cochlear implants do not play well together.  In the USA the magnet must be removed from a Nucleus Freedom implant to have an MRI.  In other countries it does not.  Why this difference?  FDA approval.  Same device, but different protocols in different countries.  The removal of the magnet is, in theory, a fairly simple thing.  You make a little incision, remove the magnet, slap a band-aid on it, get your MRI, put the magnet back in and go on your merry way.  The reality is that this is two sessions in the OR to be coordinated with an MRI which turns out to be next to impossible to arrange.  We were several weeks into attempting to get this scheduled when our implant surgeon found out that there has been quite a bit of testing in the US on MRI's with the magnet in place.  They have found that it can be done quite safely with the magnet immobilized using hearing aid molding material.  We are in the process of getting all parties on board to attempt this - with all of the waivers signed for a non FDA approved procedure.  A CT will not show a syrinx, removing the magnet risks infection to the implant and shunt, this new procedure is the least risk and hopefully we can get it all arranged. 

Yeah, we still have 'em.  In addition to the one on April 15th from my last post, he had one on April 29th which did cause some breathing issues, but they weren't severe enough for him to go to the hospital.  That one was associated with a nasty stomach virus.  And he had another one today.  We were having an absolutely wonderful playdate with Owen's friend Mya.  We had just come inside for some lunch when he seemed to be having trouble sitting up all of a sudden.  He went from woozy to just plain wilted and then he couldn't sit up at all.  His eyes were open but nobody was home.  Then he started to shake in one arm.  We got out the Diastat.  Just after I gave him the first dose he threw up a bit but the shaking stopped almost immediately and then he just went to sleep.  He never had any trouble breathing.  So, this one was not nearly as severe as most of them because it resolved itself with just one dose of Diastat and he never had breathing issues.  He woke up after about an hour with a bit of a headache, but otherwise just fine.  Big thanks go out to Mya's awesome Mommy for her cool head and help during the seizure, and to her Daddy for taking Mya so that her Mommy could help me.  Big thanks also for being understanding about Mya's wedge which unfortunately caught Owen's lunch.  I thought I'd get the bad news overwith so that I could post the fun that the kids had today.

Today Mya and Owen had a good time playing with Mya's musical instruments:


And Mya was kind enough to share her old tricycle with Owen so that they could ride together.  These bikes have been adapted nicely and Owen just had a blast.  Their feet are strapped to the pedals so that they get the motion of pedaling, but you can steer and push with the handles on the back. 


It was a really fun visit - even with the seizure.  Once we got home though he was back to his normal self.   It was a nice day so we had a fire and cooked outdoors.  Here is Owen being his happy little self:



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.

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