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!
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!
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!
Swings and Things

Things are chugging along here.  The school year is winding down, the days are warmer and we've spent a good bit of time in the pool in the last few weeks.

I took this cute picture on May 11th:


of Owen eating snack with his classmate at school. You can see that he has graduated to the big boy chair and can now eat from a plate.  In the past Owen has considered a plate to simply be a tool that allowed him to dump more food onto the floor in one motion than his hands alone could accomplish. We are getting closer to civilization - now if only we could get him to figure out what a spoon is for.

May 22nd was the open house at our local rescue squad. We decided to bring Owen down so that the EMT's could see him when he was actually concious and breathing all by his little self.  They were giving tours of the ambulances, but we felt that perhaps we had seen enough of the inside of this one already and just took a picture of it:


The best part was Owen snuggling with Angel and Melissa, the two EMT's that have responded most often to Owen's little incidents:



These guys do all of their work on a volunteer basis and we can't thank them enough for all their hard work!

Let's see, what else has been happening?  Well, we have been having some success with our quest to find effective seizure meds.  He has been having a seizure every two weeks almost like clockwork for a while now.  Each time we up the meds, and each time the seizures get less severe.  Last Sunday he had one that we almost didn't notice.  I went upstairs in the morning and he coughed a bit and threw up just a little - which considering he had a cold wasn't all that surprising.  He seemed fine but when he tried to drink he had a real hard time getting it to his mouth and he had trouble standing up - he was just uncoordinated for an hour or so and then he was fine.  No convulsions, no breathing problems, no long nap - much better than the previous ones had been. 

Our biggest issue with the meds right now is that while they seem to be making the seizures less severe - which is great - they are also keeping him awake for hours at night and then he's tired and cranky and aggressive the next morning.  We had an appointment with the neurologist today and he thought that since the meds were working on the seizures that we should try to keep them.  Since we do need to get him sleeping at night however, he did suggest that we try giving him a dose of Melatonin before bed.  Melatonin works with your body to tell it that it is time to go to sleep in a natural way.  He prefers this to sleeping pills that can interact with the other meds and cause other issues.  We tried it tonight and he was asleep by 8:15, which is much better than the 10:00 or later that he had been doing since we upped his Zonegran a few weeks ago.  Now we just have to see if he sleeps through the night.

The Swing
Back in March I posted this picture on our family blog:


This is Owen in his Fisher Price Aquarium Take-Along Swing.  It was his favorite thing in the whole wide world to do.  He would crawl across the whole house to get to it.  I highly recommend this swing for infants, it folds up to a tiny package, when you pull the fishies on the sides it plays music and lights us, there are floating fishies in the side panels, it cradles them in a way that supports big heads and there is even a fishy on the strap to play with:




I would not, however, recommend this for your three and a half year old.  Sadly, the plastic arms cracked a few weeks ago.  While I give Fisher Price credit for it holding up for so long, and for it failing in a way that Owen didn't even really notice let alone get hurt by, it was clear that it was time to replace the beloved swing.  So, I headed out to the workshop to make him a bigger swing that could support a growing boy.  And here it is:


This is a still shot of Owen clapping when I put him in it!  My apologies for the mess visible around the swing, I was so excited to try him out in it that I didn't clean up the construction mess first. 

I kept the old seat cushion complete with fishy on the seat belt:


And here he is checking out the floating fishies that I embedded in the supports:



A side view:


And his sister enjoying swinging him with some of the rope that was leftover from stringing on the canvas:


I still have to mount the light/sound bar to finalize the effect, but when I tried to take him out of the swing he held on to it and didn't want to leave so I think that it will be a hit. There is plenty of room for him to get taller so he should get a few years of use out of it.

I will leave you with a few pictures of Owen and his sister in their pajamas the other night:



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