Owen is feeling much more like himself today.  He doesn't have quite the stamina that he did, but it's not far off. 

Yesterday he ran a temp of about 100.4 for several hours, even with the Tylenol.  Then it seemed to go away.  He's still running a bit warmer than normal, around 99.7 for most of the day - so we are keeping a close eye on it.  Of course we are always paranoid for about a month after any shunt placement anyway.  One shunt infection should be enough for a lifetime, let's not ever have another.

Today though he is back to lots of laughs and smiles.  He had whined for the last week and a half straight. Now he is back to playing and getting into trouble.  It has been really good to see.

I have also noticed that his eyes have stopped wobbling.  Wobbling eyes (nystagmus) are a sign of pressure, or brain damage, and Owen's eyes have always wobbled - the iris rotated slightly back and forth. I assumed it was brain damage because they have never done anything else. It wasn't severe, but it was always there.  On the way home from the hospital Owen was gazing up at me as I changed his diaper and I realized that his eyes were looking straight on, with no wobble. This wobble never seemed to bother him, but I have to wonder if he will have better coordination now that the wobble is gone.  I can hope that this will help with some of his grasping and such.

So Owen is a happy baby.  I won't really breathe a sigh of relief until we cross the one month mark without an infection.  Then I'll feel much better about life.  But for today, it's nice to see him laughing and smiling.

He loved watching the fish! And you can see his sister looking at the bubbles too. 

Thanks for all the well wishes and we'll be home soon!

Well, the milk of magnesia this morning didn't do anything so they upped the stakes.  Let's just say that the more aggressive methods worked.  About 10 diapers later Owen was feeling much better.  He drank a full thing of Silk and he even let us leave his cochlear implant on for a little while and started to babble again.  He has been playing and laughing.  I'm so pleased to see my happy Owen back.  I hated to see him in pain and it's like a ray of sunshine to see him smiling!!  Let's hope he keeps it up so we can go home soon.

Hi All!

I have computer access finally. Daddy brought down the computer so that I am now connected to the world again! A big thanks goes out to my brother for blogging while I was disconnected!

When last I blogged on Sunday I had explained that Owen hadn't been acting right so I had made an appointment for a CT on Monday because he hadn't been acting right and we had had a detour to the ER on Friday because he had thrown up in the car. The ER radiologists had said that they thought the CT scan was unchanged from the last one so we were just headed down for confirmation on Monday from his regular neurosurgeon.

As it turns out, it was not to be just a quick visit. When his neurosurgeon, Dr. Grant, looked at the CT scan he felt that the ventricles had definitely begun to enlarge. They hadn't gone really far yet, but they were definitely headed in the wrong direction and it was time to do something about the shunt. Either the shunt was failing, or the pressure setting of 70 mm H20 was too high now that the big fontanelle (soft spot) in front had closed up in the last few months.

While the fontanelle is open it acts as a pressure relief valve. The fluid can press up into this space without pushing on the brain and it causes no problems. However, once it is closed this relief valve doesn't exist anymore and so a pressure setting that had been fine for two years may suddenly be too high. This is one of the biggest arguments for programmable shunts in infants, because it is not unusual for them to need a different pressure setting as their head fuses together. We had taken out Owen's programmable shunt to replace it with a fixed one so that the magnets from his cochlear implant would not be able to interfere with his shunt. So, a pressure change requires surgery.

By this point Owen was almost inconsolable. He was definitely in pain. Dr. Grant had us admitted to the hospital on Monday afternoon. If I hadn't fed Owen lunch he could have had surgery on Monday, but unfortunately he had just eaten before we saw Dr. Grant so we had to wait until Tuesday. Tuesday was Dr. Fuchs' (the other pediatric neurosurgeon here at Duke) day for surgery, so we got a slot with him. Dr. Grant offered to do the surgery after his clinic hours, but that would have meant doing the surgery after two kids with shunt infections had been operated on, and that increases the risk of Owen getting an infection. We've been down that road before and had no desire to do it again.

So on Tuesday Dr. Fuchs went in to see what was happening. If he went in and saw that the pressure was at 70 - which is what it should be - then he would know that the shunt was functioning and 70 was too high. If he went in and the pressure was above 70 then he would know that the shunt was failing and 70 might still be OK.

As it turns out, the pressure was right at 70. The catethers were both flowing, so the shunt system had not failed. This meant that 70 was just too high now that his head was becoming solid. So Dr. Fuch's put in a new shunt whose pressure is 40 mm H2O. He also replaced the catheter that goes into his brain because he thought that maybe it didn't flow quite as freely as the one going down into his tummy.

That was all yesterday. By the time Owen was back to his room he was in a great mood. He was the happiest he had been in ages. Unfortunately it didn't last. After two hours of eating a great dinner and playing in a high chair, he had a meltdown. It took an hour and a half and a lot of oxycodone to get him to calm down. But we figured he had had a long day and it that was it.

He slept through the night just fine - keeping the oxycodone flowing to make sure he got a good night's sleep.

At 6:30 this morning he woke up and was not happy. I figured he was just cranky because he was hungry. Owen believes that food should magically appear - fully prepared and ready to eat - the moment that his eyes open in the morning. So it is not unusual for him to be cranky. Dr. Fuchs came by while I was feeding him and we just agreed to wait until after he ate to see what his mood was. Unfortunately his mood did not improve. He was kicking and angry and upset for most of the morning. He ate two granola bars but I couldn't get him to drink anything. His throat is pretty sore from the breathing tube, so that might be why he doesn't want to drink. He is still getting IV fluids so he isn't thirsty and may not be motivated enough to drink while his throat is sore.

By the time Dr. Grant came in to check on him he was in a pretty good fit. Even with the oxycodone he was still kicking and thrashing around. So they canceled our departure for today to see if they couldn't figure out why he is so upset. Dr. Grant recommenced his Milk of Magnesia because it has been three days without a poo again, just in case that is what is causing him pain. He was pretty upset until lunchtime. At that point a friend that I had met through this website was at Duke to get a second cord blood infusion for her son came to visit. They live in Idaho so I haven't seen them in almost a year and a half, when they came for the first infusion. She and her son Jameson came in for a visit. Jameson is 18 months old and was just the distraction that Owen needed. While they were here we were able to put Owen in his high chair and he and Jameson sat and ate Cheerios and Jello. Owen was actually in a good mood for most of the time that they were here. He did start to melt down just before they left, but at least he spent a good hour up and happy. Then he went to sleep and took a good nap. He is just waking up and hopefully he will be in a good mood.

So that's where we are now. Hopefully his mood will improve and it's just that he was sore today. We'll keep you posted!

They just called out, they have just started the actual surgery.  It will be about an hour from now.  I forgot about the incredible amount of prep time they have.

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.

And Merry Christmas and Happy Thanksgiving and I think that about covers it for the holidays since the last post!  I figure that while I only post about once a month or so, it probably takes about a month to read one of my long posts so that makes up for it.

So where to start?  On the Monday before Christmas we went back down to UNC for a new mapping for Owen's cochlear implant.  We were very pleased with the last mapping that we had gotten in November. We started hearing lots of new sounds from Owen and he seemed to be understanding more than with past mappings.  So with great anticipation we headed in for the testing that comes before every mapping. 

I had been driving down the same day as the mapping for the previous ones, but after three hours in the car Owen was always cranky when we got there.  This time we all went and stayed overnight so that he would be fresh and rested for a morning appointment.  It paid off because while he still hated being in the sound booth, he did a lot better than he has in the past. 

On his last audiogram he had tested with tones down to 55 dB and with speech down to 45 dB, which was the same as the audiogram before that.  This time he did better.  He tested down to 45 dB with tones and 30-35 dB with speech! 

The ellipse type shape is called the speech banana. That's where most of the normal speech sounds fall when speaking in a normal tone of voice.  The dots and stars are the tones.  The reactions to speech are not on this graph, but if you put those on there you'll see that we've filled most of the speech banana. You can see his speech results here:

We also still believe that he hears better than they can test for.  He can't tell us when he hears something, so we have to watch for his reactions.  Sounds softer than 30 dB may simply be too quiet for him to stop playing for. 

So the audiogram was good news.  They did give us one slightly louder mapping, but Owen didn't seem to like much while we were there, so we'll give him a while before we try it.  The audiologist said that what we need the most now is time for Owen to just hear and learn.  Therefore our next mapping is not for three months. 

At the moment his babbling is definitely becoming more purposeful and with a much wider range of sounds.  He has actually said Mommy and Daddy a few times, clear as day, but it is still not reproducible.  We don't really expect that yet anyway.  While we were in the waiting room for Owen's mapping we met a nice young girl and her Mom and Grandma. The girl was 12 years old and she had received her cochlear implant when she was 2 years old.  Her Mom asked if we had noticed anything different with Owen yet.  We said that while it was clear that he was hearing, he certainly hadn't spouted any words yet.  She said that it was the same with her daughter, that it was a lot of small, incremental improvements for the first year.  At the one year mark though, she said it was like magic and she just started blossoming with her speech.  Her daughter is now a straight-A student with perfectly understandable speech - even though her cochlear implant wasn't on when we met her because it had just been replaced and the new one wasn't turned on yet.

As for progress, Owen now reliably understands "No", "Up" - and will respond by putting up his hands, "give that to me", and "take this".  He also seems to know his own name and knows to pay attention when he hears it.  I'm pretty sure that he also understands "eat" and "milk" but that's harder to tell since he doesn't have to do anything when you say them.  We have also been able to get him to give his stuffed animals a kiss when we say "kiss the bear" or "kiss your owl" on a somewhat regular basis - though mood affects this greatly.

Eating
Owen has now graduated to the big boy high chair.  Until mid-December he had been using his blue chair:

This chair was the absolute best for getting him in the right position for feeding - long before he could sit at all on his own.  It has one big drawback though.  The straps that go over his shoulders to keep him from falling over also keep him from reaching very far across his tray.  This was limiting his range of motion and therefore his progress with spoon feeding.  He finger feeds just fine, and he has the coordination for spoon feeding, but it's hard to do with your arms held back. 

Now that he can sit up for longer periods of time with minimal support, we thought we'd give a regular high chair a try.  I also thought that this would encourage him to sit up more on his own as well.  It has been a wonderous success:

Not only has he been able to eat better, but now he has started sitting for longer periods just out in the middle of the bed.  We practice our sitting on the bed so that if he falls over he doesn't hurt himself.  Yesterday we had him sitting on the bed and he got distracted by the TV and sat for a full five minutes, completely unsupported!

Walking
In my last post I promised some video of Owen in his walker so I will make good on that promise with this post.  First however we need some background.  You may recall that for Owen's birthday in September I made him a new walker because he had outgrown his original store-bought one. 

This walker was absolutely wonderful in that it rolled very easily and so he finally got the idea that he could really get around in this thing.  He went from moving inches at a time to cruising around the room.  The problem?  Well when I designed it I thought that I should go for a wide wheel base to prevent it from tipping over.  Perfectly reasonable.  I made it just wide enough that it would fit through a door with an inch to spare.  The flaw in this thinking became apparent the moment I set it down in the kitchen - it was way too big to be used anywhere in our house but our bedroom! 

It also had another little issue.  The seat was so far back that he couldn't walk up to something and reach it to play with.  So it was back to the drawing board.  It was going to be a while before I could get around to doing a rebuild what with the holidays and such, so we let him go back to using his old commercial walker in the other parts of the house:

It was good in that he could even go through doors easily, but one day he tried to reach something on the ground and managed to get himself out of it.  If Mommy hadn't been standing right there to catch him he would have landed on his head.  Luckily my brother and sister-in-law helped up with an interim solution in the form of a commercial walker that was taller than our original one:

This was great because it was small enough that he could use it in other areas of the house, but the tray was so big that he still couldn't reach anything in front of the walker.  The two rear wheels also don't swivel, which made it somewhat difficult to navigate.

So once the Christmas rush was over I headed back out to the workshop to slim down the homemade walker.  Below is the re-worked Sports Coupe model of Owen's walker:

It is several inches narrower than the old model so that it fits in our tiny kitchen and goes through doors easily.  I also cut down the sides so that they didn't bang into things as much, and I moved the front all the way back to the tray.  It does not appear to have any stability problems, and Owen seems to like it.  He has actually worn out the wheels on it and I'll have to buy more next week.  The other benefit to the walker is that he is working on standing up.  He can now hold a stand for several seconds - even long enough to get a picture:

And now for the promised video.  There are three little segments of Owen cruising about in his walker - you can also see his sister scooting through one of the scenes - and then a quick video of him sitting up on our bed.  You will see that we have hung toys on some baby gates so that he can play with them in his walker, and put toys out on small tables for him.  Just click on the picture to see the video:

I have added a new feature to the blog. You can see a new menu item to the right called "Progress - See Owen's Measurements and Milestones Since Before He Was Born".  Almost every new Mom I meet who is still pregnant wants to know the ventricle sizes for Owen during my pregnancy.  I finally thought I would get around to posting them on the website so that I wouldn't have to copy and paste them into emails anymore.  I have also posted a milestone chart with indications of which milestones have and have not been met and when.  Every child is different and I do not like the idea of comparing one to another, but for those just starting their journey with hydrocephalus I thought it might be helpful since I am asked about these milestones all the time.

2008 brought so very much progress for Owen, we can only hope that 2009 will be just as amazing.  It's a very exciting time to see him finally able to explore the world on his terms and learning how to communicate through sound and voice.  We can't help but be optimistic about what this year will bring.

Finally I will close with a picture of Owen and his sister hanging out in their Christmas best: