The Amazing Owen
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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:

Chiari-Plain.jpg

And here it is with some useful labels on it:

Chiari-Labeled.jpg

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!
 
Seizures 101
I have gotten a lot of questions lately like "Why did Owen go so long without seizures and suddenly start them?", "Is there anything I can do to prevent them in my child?", "Why don't you take him to another doctor that might be able to stop the seizures since this one obviously can't?"   I have been meaning to add a seizure page to the website forever, but I haven't had the time.  So I thought I'd do a quick blog entry to cover the big items rather than responding to each email individually. 

So, we all know that children with hydrocephalus are prone to seizures - that is hammered into our head from day 1 by all of our doctors.  The question is, "why, and why don't they always show up right away?"  I've heard a number of explanations from a number of different sources, but this is how I think of it in my mind:

Picture a scenario in which you are asked to light up a large room.  You are handed a brand new spool of wire and 50 light bulbs.  You merrily go along connecting the wire to power and then hooking up each light as you string them around the room.  The room is beautifully lit when you are done and the task is accomplished with relative ease.  Now picture a situation where you are asked to light up the same room, but are instead handed a big box full of a nest of old wire.  The insulation is cracked in places and the wires are all tangled up and you can't straighten them out.  You go about hooking up the first light, it's not too difficult to get a wire that works all the way to the light.  Now you hook up a second and a third.  Not too bad.  By the time your get to the tenth light, it only comes on dimly and the second light now seems to be dim too.  The cracked insulation has allowed the wires to cross and you have a power drain.  Bummer, unhook the tenth light and try again.  By the time you hit the twentieth light things are dimming and shorts are causing lights to pop.  Each light becomes more and more difficult to get going without things going haywire.  You do finally get to 50 lights, but any sudden movement or disruption could cause the whole thing to malfunction.

So you get the idea.  On the left is a CT of a normal brain, on the right is a CT of Owen's brain (the shiny thing is his shunt).

ct-normal.jpg   ct-owen.jpg

The wiring in a brain that has been damaged by hydrocephalus is going to be a bit different.  When the children are very small and there are only so many neural pathways present, it is easier for the brain to map those functions without causing any problems.  As they get older and there are more pathways, it can be harder for it to find ways around the damage.  This is why our neurologist has warned us that during times when Owen is learning things at a more rapid pace, we need to be more watchful of a seizure.  This is also why so many people outgrow seizures as there isn't such a rapid creation of pathways when we get older.

There is a second reason why you don't always see the seizures in younger children, and that is because they are harder to spot.  A grand mal (now known as a generalized tonic-clonic) seizure in an adult can be strong enough for them to knock stuff of tables, fall off a bed and do serious damage.  In an infant they just shake a bit all over.  Why the difference?  Muscles!  Young children do not have the strength in their muscles to produce the big movements that they can later.  But you still tend to notice these types of seizures, even in infants because it is a movement that they wouldn't normally make.  But there is another issue - not all seizures involve body convulsions.  In Owen's case he rarely has convulsions, though they do sometimes occur.  For him, he usually just vomits and then passes out.  This is something that any child could do as young children often sleep after vomiting.  It wasn't until they became more severe and he actually started losing the ability to breathe that we could say 100% that these were seizures, and these days he often has convulsions with them.  So in reality he was probably having them for some time, we just didn't realize it.  Seizures can take so many forms that it's very difficult sometimes to pinpoint whether or not a seizure has occured unless you catch it on an EEG.

So that takes care of the why in general and the why not until they are older.  Now for the can I do anything to prevent them from starting?  No, you can't (please keep reading to see the whole explanation, even if you disagree with the statement because it is more complicated than that).  You cannot fix the wiring in their brain when it has been damaged like it may be from hydrocephalus.  But, you say, there are diets that can help people with seizures!  And yes, there are.  The ketogenic diet can help many people with otherwise uncontrollable seizures, and there are other diets as well.  But the thing of it is, these diets work in much the same way as the anti-convulsant medications do - they alter the body chemistry in such a way that the messages that are fired between the neurons in the brain are affected.  But do they prevent your child from having epilepsy?  No.  In the same way that having a cochlear implant does not prevent my Owen from being deaf - if you take off the implant he still can't hear - the drugs or the diets only prevent the seizures as long as they are affecting the chemistry of the body.  Sometimes you get lucky and the diets or meds will "teach" the body the right way to go about things and the chemistry will stay the same once they are removed, but it is just as likely that removing them will cause the seizures to reappear.  The body may also reach a point where the nest of wiring is stable enough that it can light all 50 lights without needing outside maintenance and then you may be able to go off the meds or diet. 

This all helps to explain why seizures are often so much more difficult to fight in children with hydrocephalus than they are in the general population.  A person with normal anatomy may have seizures because of a chemical inbalance - find the way to restore the balance and walla, you control the seizures.  A person with normal anatomy could have seizures for any number of reasons, but finding the seizure med that lets the neurons communicate normally will likely take care of the whole problem.  But when the wiring is all messed up it's a matter of having so many different issues.  Find the answer to one seizure type and suddenly something else appears because another wire crossed somewhere else. 

And finally, why don't we switch doctors since the seizures haven't stopped?  Well, the brain is an immensely complicated thing that we honestly barely understand.  Fighting seizures is an art form, not a science.  Our neurologist is a very good one.  He was slow to prescribe medication when others have wished to force it on us even when Owen wasn't having seizures, he has prescribed vitamins instead of meds in the past because he knows those work too in some circumstances.  He has taken a very thoughtful, methodical approach to Owen's seizures.  The truth of the matter is, that seizures cannot be easily controled and that the best doctor is still making their best guess as to where to go next.  Obviously if they continue and we feel that his current doctor is out of answers we will seek other opinions, but at the moment we are confident that what can be done is being done.

I hope that this has helped a few people - either those new to seizures or maybe family members of those with seizures to understand a bit about how this all works.  And for those parents that might be feeling guilty that their child is having seizures because they didn't feed their child the right things, I give you my permission to leave your guilt at the door. 
 
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 cries...it'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. 

shuntseries-side.jpg

shuntseries-front.jpg

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:

ImageStandIn


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:

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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!
 
CT Scan Was Fine
Just a quick post to say that yesterday's CT scan showed that all is well with the shunt.  There is always a blissful little period around a CT scan when you know that the shunt is fine and you can relax a bit.  Dr. Grant was pleased with how Owen looked in general - Owen was in a good mood and was very interactive - and with how relaxed everything looked on the scan. 

Today we just hung out around the hotel, watched TV, put our feet in the pool and just generally relaxed.  I had originally thought I'd take Owen to the Natural Sciences Museum to look at the animals on our day off, but it was 95 degrees this afternoon.  He had to settle for looking at the lobsters in the tank at Red Lobster instead, in the air conditioning.  95 degrees is too hot to be pushing a stroller around in, and Owen isn't a huge fan of the heat either, so even with our southern blood we opted to stay in for the day.

Tomorrow we meet with the plastic surgeon and the neurosurgeon to get their views on the cranial remodeling.  We discussed it briefly at Owen's appointment yesterday, but tomorrow will be dedicated to the subject.  I am anxious to hear what they think.
 
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.
 
CT Scan brings Good News!

Today Owen went for his post-op exam and CT to make sure that the new shunt is behaving itself.  It's always more fun to go to these things when Owen is doing well and is happy.  Dr. Grant was very happy with the way things look in Owen's brain.  The tissue has expanded out nicely and is adjusting well to the lower pressure. 

Below are two copies of CT scans.  The first was done at the local hospital ER in January, and the second was done today at Duke. It's a little hard to compare them because they were done on two different CT scanners in two different orientations and slightly different slices, but you can see that at the top there are now two nice, narrow channels - instead of the wide open space in the first one.  In the lower left you can also see where the tissue has gotten thicker. 

CT-2009-01-09.jpg

CT-2009-02-03.jpg

So it was a good visit and the biggest worry was that Owen couldn't eat just in case he needed sedation for the CT (which he didn't and never has). He was a bit cranky about that, and he has decided that he does not like any doctors and will wail whenever someone in a white coat gets near him.  But it's still worth it to see the much improved scans and well healed incisions.

That's all for tonight, I just wanted to share the good news!

 
A little bit of drama

Every now and then Owen likes to remind us of how much we should enjoy and appreciate the smooth days when there is nothing wrong.  Owen had been really cranky for about a week.  By Wednesday and Thursday he wouldn't really let you put him in his walker or high chair, he just wanted to be held.  I had also noticed a raised spot on his skull - as though the bone had been pushed up - during his bath a few days before.  So I had sent an email to Dr. Grant, our neurosurgeon, and we both thought that it might be worth coming down on Monday (that will be the 12th) for a quick CT to make sure that all was well.

It seemed that his shunt was working, his posterior fontanelle (the one in the back) is still open and there would be a puddle when he laid down which would disappear when he sat up - which is as it should be.  We also knew that he had been quite constipated again for most of the week.  We thought that we had cleared that out, but  his mood hadn't improved.

So on Friday I put Owen and Sammy in the car to head down to Greensboro (just over 2 hours away) for speech therapy.  We made it about a half an hour out when Owen threw up all over and then went right to sleep - and didn't wake up when I opened up the door and let the cold air in to check on him.  He seemed to be breathing OK, so thankfully I don't think he aspirated!  With all of the other signs the past week though I felt that I had reached my limit of what could wait to be checked out.  As it happened I was only about 10 minutes away from the hospital with the PICU so I detoured into the ER there and called Daddy to come meet us.  I was not chancing another aspiration by trying to take him all the way to Duke.  They could airlift us if he needed surgery.

When we took Owen out of the car and put him in the stroller he finally woke up and seemed fairly alert.  They took us in right away and we had a CT within 20 minutes.  They have just rebuilt the whole pediatrics area and it is now a really nice facility.  No more waiting in curtained corrals like at the old ER, now you have private rooms to wait in.  They had a copy of his last CT scan (these are important little details to remember, have a copy with you in the car of the last MRI or CT, and also make sure your local hospital has a copy if your primary care is hours away like ours is) and when they compared it everything looked the same.  They also did a shunt series and found that the shunt system seemed intact.  The ER pediatrician was just awesome, we really liked her. She called Dr. Grant and he said that if everything looked OK to send us home, but that we should keep our appointment in his clinic on Monday.  By this time Owen was more or less his happy little self so we packed up and headed home.

We still felt that something wasn't quite right, but at least we were narrowing down the possibilities.  We thought we had cleaned out the intestines earlier in the week, but it was becoming clear that perhaps this wasn't the case.  By Friday it had once again been several days since the last poo and he was doing a lot of arching his back, having reflux and wanting to lay out flat.  So it was time to break out the Milk of Magnesia to make sure that there wasn't anything blocking up the works.  You see, if there is enough backed up into the intestine it not only makes the kid miserable and can cause damage on its own, but it can also put pressure on the end of the shunt catheter that is in his belly and cause it to stop up intermittently. 

The last time he got really blocked up the GI doctor told us to give him 2 tablespoons of milk of magnesia spread out over the day and to keep this up for about a week, slowly weaning him down to just a teaspoon a day.  So out came the big blue bottle and down the hatch it went.  He loves the cherry flavor, go figure because I can't stand the stuff.  It was dinnertime by the time we started giving it to him, so he didn't produce anything that evening.

On Saturday I started giving him doses bright and early.  By three o'clock in the afternoon I had given him 4 teaspoons (1 tablespoon plus 1 teaspoon) when the dam finally broke.  We changed diapers from then until about 8:00 pm with only a few small breaks.  When he finally slowed down at about 7:30 pm I put him in his walker and he didn't fight me at all.  He loves his walker, it means freedom, but he had been cramping so badly that he wouldn't sit in it for the previous two days.

So hopefully that's it.  We're going to keep our appointment tomorrow, because if I have a CT scan I will most certainly want Dr. Grant's opinion on it.  The ER pediatrician was awesome and made sure that we left with CD's of the CT and shunt series and also films of both, just in case they couldn't read the CD at Duke.  Hopefully he will see the same as the ER docs did and it will turn out that he was just really backed up.

Have a wonderful Sunday and I'll write more tomorrow evening after our appointment.

 
Our Story - Blog Style

It has been almost a month since my last update, and from the looks of the website you can see why.  I have been busy updating the look of it again to get ready for a reorganization and some new features that will happen in the coming months. I have also decided to bring the "Our Story" section into the 21st century and turn it into a blog style page.  This will make it much easier to update - I won't have to create a new web page for every few updates - and it means that you will just have to add this page to your favorites to see the latest news, rather than having the newest page change every time I add a new entry.  I guess when I started out with this whole thing I didn't realize that I'd still be doing updates two and a half years later!

So, welcome to the new Blog Style Our Story!  It has been a while, there are lots of things to update you on so let's get started.

Cochlear Implant

I'm sure this is at the top of everyone's list, so it's where I'll start.  Things are going great with Owen's cochlear implant.  Over the last few weeks we have really noticed that his babbling has changed.  He has always babbled a lot, but now there are new tones that we have never heard before.  He has also started whispering for long periods of time, which is something that he really didn't do much of - he was always loud.  We have noticed him turning his head towards sounds more and more often. 

He will sometimes even try and imitate the sounds that we are making.  It isn't very reproducible, but it does happen.  Yesterday he was playing with a shoe - he loves his shoes - and quietly whispering "sh" "sh" "sh" over and over again.  So I quietly said "shoe" and he started saying "oo" "oo".  Last weekend he was laying on the bed next to me while I was sitting on the edge sewing his sister's Halloween costume.  I got up to grab something that was on the other side of the room and he said "Ma Ma" as clear as a bell.  Not the "m" "m" "m" that he used to do, but two distinct syllables with the correct duration and inflection.  He hasn't done it since of course, but it was nice to hear the once anyway.

Today we took Owen down for a new set of mappings and to get his first audiogram since the implant was turned on.  An audiogram is basically a graph that shows which frequencies and sound levels that a person can hear.  The sound (hearing) level is measured in decibels (dB) and the quieter sounds are at the top of the chart and they get louder at the bottom of the chart.  The frequencies (tones) start low at the left of the chart and get higher towards the right.

Below is a picture that shows where common sounds fall on an audiogram:

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Owen's last audiogram before getting his cochlear implant was pretty much a flat line at the bottom of the graph.  As his surgeon described it, they were playing sounds that were as loud as a jet airplane taking off next to him and he wasn't even flinching. That audiogram looked like this:

Audiogram-GraphOnly-2008-07-14.jpg

The circles being at the bottom of the graph with downward arrows show that he didn't respond even at the loudest noises.  Today's audiogram, taken just one month and five days from when the implant was turned on, was much better. You can see marks now right in the middle of the graph, rather than sitting at the bottom!

Audiogram-GraphOnly-2008-10-17.jpg

And there is more. The full audiogram page has more than just the graph. 

Audiogram-2008-10-17.jpg

You can see that there is a circle around the letters SAT, which stands for Speech Awareness Threshold, and then a 45 written in that row.  This means that he was reliably responding to speech at a mere 45 decibels! 45 decibels is within the norm for conversational speech. The dots on graph are from tones that are played in the sound booth. They would get him to concentrate on a toy and then play a tone to see if he would look up.  He was responding to those reliably aound 55-65 decibels.  Then they just started talking into the microphone and he was responding at 45 decibels.  The problem with testing him is that he doesn't know to listen for the sounds and to raise his hand or tell them "I heard that" yet.  We are working on that in speech therapy, but for now they have to rely on looking at him to see if they think he is responding. So it is possible that he is hearing even more, but it is too much a part of the background at the lower levels for him to notice it.

The audiologists were very pleased with this level of response.  They said that it often takes three months to get to this level of hearing and here we are at just over one month.  Needless to say, we are very happy tonight!

Visits

Owen had a CT scan done locally about a month and a half ago which we sent down to Duke for his neurosurgeon, Dr. Grant, to look at and it showed that everything was fine.  We waited to schedule the office visit for a while though, so that he could see Owen after his cochlear implant had been turned on.  Dr. Grant may not have done the cochlear implant surgery, but he was still very instrumental in making it happen.  He was willing to do the necessary shunt surgery to make it possible for Owen to have both a cochlear implant and a shunt.  This is something he didn't have to do, he could have just told us that since Owen had a working shunt his job was done.  Instead he worked with the cochlear implant surgeon (Dr. Buchman at UNC Chapel Hill) to come up with a plan and went the extra mile to see that Owen had this chance.  We can't thank him enough for this. 

I realized that we had never gotten a picture of Owen with Dr. Grant.  How this happened I will never know, but it was definitely time to fix that problem.  So here is Owen with Dr. Grant:

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I never did get a picture of Owen with his cochlear implant surgeon. I'm sure we'll see him sometime in the next year and I'll try to fix that then.  After we left Dr. Grant's office we headed over to see Dr. Kurtzberg - the doctor that did Owen's cord blood infusions.  She was also helpful in the cochlear implant effort in many ways.  As always it was great to see her again:

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Physical Therapy

Next up is his progress in physical therapy.  He has been making progress by leaps and bounds.  Owen has started pushing his head up off the floor to look at things on a regular basis now. He has been able to do this in therapy sessions for some time, but it was so much work that he rarely ever tried it otherwise.  Now he does it all the time.  Unfortunately he never seems to do it when I have the camera, so this is the best picture that I have gotten yet of this skill:

09-29-2008-0018-headsup.jpg

He has learned to sort of army crawl a bit with his head up now when he can't roll to where he wants to get to.  It won't be long now before he's really crawling about. 

Some progress has been made in the sitting area.  He can now sit up for over an hour at a time in his Bumbo seat.  He can sit for a few seconds at a time without any support.  I suspect that he is capable of sitting up without help for longer periods of time, but he is just used to having something there to support him so we are working on that.  Below is the best picture that we have so far of him sitting up on his own:

09-29-2008-0023-sitting.jpg

He has also made progress with standing up.  Here you can see him standing with the help of his therapist Nacol:

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This effort has been helped by two new toys.  The first is that we got him a bigger bouncer that hangs in the doorway.  We used to have a smaller one, but he outgrew it.  Between the fact that he wasn't in the bouncer anymore and being out of therapy for surgeries all summer, he had stopped pushing up to stand.  So now he's back in therapy and we got him this new bouncer:

10-01-2008-0007-bouncer.jpg

You can also see the hat that he wears most of the time now. The external pieces for the cochlear implant fall off all the time when he rolls on the floor or knocks it on one of the supports in the bouncer or his feeding chair. He was probably spending a few hours a day with the coil off because of this, so I crocheted him a hat to keep it on.  The hat also makes it possible for him to wear his implant in the car because even if he somehow manages to get the coil off, he can't get to it to eat it. 

The second new toy was Mommy's birthday present to Owen (we'll get to the birthday party later in this post). You may recall that I had previously modified a store bought walker for Owen so that it looked like this:

10-12-2007-0008-walker.jpg

Well, as you can see in that picture he was already almost too tall for that, and that picture was taken almost exactly a year ago.  This walker also has another problem.  He sits in it, he doesn't stand.  This is not the best for teaching them to actually walk. So I made a new one that uses the seat from his old bouncer, which is made so that he stands up in it.  The poles are much higher on the new one, so that if he needs the head support it will be tall enough for him.  I haven't added the head support yet, because he seems to be able to stand upright without needing them.  The final feature is that I spent more that the 50 cents that the toy company spent on their wheels, so the new model rolls much more easily. And here it is, my latest creation:

09-23-2008-0003-walker.jpg

 

Birthday Party

Woo hoo! Owen turned 2 years old on September 25th.  Last year on his birthday I wrote that if only we had known while I was pregnant how well he would be doing at a year old I wouldn't have worried so much.  I would say the same this year, only doubly so.  He has made so much progress in this year that it's hard to remember the frail little baby we brought home. He's now a strapping 25 and a half pounds and so full of life that you can't get him to sit still for even long enough to put a diaper on!

For his birthday he enjoyed the requisite cake.  He also spent some time playing his favorite game of peek-a-boo with the cloth that was supposed to be keeping his food from falling on the floor!

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And that is what we have been up to for the last month.  It has been a crazy one, but oh so rewarding!

 

 
 
 



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