I know, I know - a month at a time with no posts, and then suddenly we get several days in a row. Well, when it rains it pours!

Today Owen went to the audiologist for another hearing test and cochlear implant checkup.  The results were just awesome.  We are now 6 months post hook-up and today Owen's speech threshold was only 10 dB!  That's a very quiet whisper! 

Above is the audiologist's report from today.  You will note the completely blank audiogram.  When Owen first got there they hooked him up to the computer where they play tones directly into his brain.  He loves this and it makes him laugh.  But then they put him in the sound booth to listen to normal sounds through the microphone and he just freaks!  I don't know why, maybe it's because everyone is staring at him, or because it's 200 degrees in there, or because the two year old in him senses that he is expected to do something on demand and he just doesn't do requests. 

Either way it was looking like a pretty big waste of a three and a half hour drive.  But then Lisa, the audiologist, started to sing "Itsy bitsy Spider" to him through the machine that lets them output their voice at a specific decibel level.  She had done it earlier in the session at a louder level and he seemed to like it.  So during a fuss she tried it again, but at a very quiet 10 dB.  He missed the beginning of the song because he was too loud, but when he stopped to take a breath he clearly heard her singing and he stopped fussing and settled down to being perfectly quiet in just a second or two.  When she got to the part where the spider goes up the spout again he put his two hands together and twisted his wrists to make the spider - right on cue! 

We all kind of sat there and stared at each other as if to say, did he really do that?  But it was just as clear as day and Owen absolutely loves The Itsy Bitsy Spider and makes that sign all the time when we sing it at home.  If I ask him, "Do you want to sing a song?" he generally responds by making the sign of the spider. 

For a reference on what 10 dB is, I'll post the chart of familiar sounds again:

She was singing very quietly and yet he not only acknowledged that there was a sound, but he could identify it properly as his favorite song and knew exactly when to make the spider sign.  I think that officially means that he is hearing very well!  You can see on the report that she writes "Did Itsy bitsy spider down to 10 dB".  And then she circled SAT (speech awareness threshold) and under aided sound field (meaning with his implant turned on) she wrote 10.  At his last exam he only tested down to 35 dB. It was the same mapping, but he just needed more time to get used to hearing I guess.  We have definitely noticed at home that he hears very quiet noises and responds to them, but it's nice to have it confirmed during a controlled test.  And 10 dB is the lowest that they can test down to.  In my reading I have found that "normal" hearing is considered to be anyone who can hear down to 15 dB.  Many cochlear implant programs say they consider a success to be hearing down to at least 25 dB, which allows hearing at normal conversational tones (the red "speech banana" in the picture above).  And Owen can hear down to 10 dB!  We've made it!

Owen also now recognizes quite a few verbal commands such as "Up", "No", "No teeth" (meaning please stop gritting your teeth before Mommy goes insane), "Give that to me", "Do you want to sing a song?", "All done", "Eat","Sit up" and probably a few more that I'm not thinking of at the moment.  I asked the audiologist how Owen is doing compared to other children who are 6 months post hook-up and she said that he is doing very well.  She actually said that there are many children that aren't doing this well at only 6 months. For once, Owen may be ahead of the curve! 

You'll also see the letters IT-MAIS toward the bottom of the report, with an 80% next to it.  This stands for Infant-Toddler Meaningful Auditory Integration Scale.  It's basically a set of questions that they asks the parents about what a child appears to be able to hear and not hear - because the little ones don't do the best at testing.  You can read more about this test here.  Before the implant his score was 5%, and I'm not sure how he even got that high to be honest. Today his score was 80% - an amazing improvement in just six months. 

So we are very happy.  If you look at yesterday's post and watch him playing that piano, you can start to understand how much this has meant to us.  He can hear us, he can understand us, and we can finally share our love of music with him.  Music is huge in my family - I play the flute/piccolo/recorder/penny whistle, my brother plays piano, bass clarinet, guitar and anything else he can get his hands on, my Mom plays piano, my grandmother was an excellent violinist, and even those that don't play an instrument all love to listen to music.  My daughter Sammy loves any type of music.  Not being able to share this with Owen was a big hole in our ability to relate to him. Seeing him at that piano and watching his face light up when you sing to him is just priceless in so many ways.  Being able to hear has changed every aspect of our interactions with Owen and we couldn't be happier that it has worked out this well.

Have a great night!

I already posted this on the family blog, so my apologies to anyone who sees this twice.  I have thought of consolidating down to one blog, but I figure that there are a lot of people who might be interested in how Owen is doing with his hydrocephalus, but do not in any way care about watching his sister learn how to ride a bike.  I also like to page through the family blog just for fun, and I'd rather not see the stories of the hospitalizations and such as I try to enjoy a wander down memory lane.  So without further ado, here is what Owen did today:

After dinner this evening Owen treated us to a serenade on his absolute favorite toy: his little piano.  He just can't get enough of this toy, he plays with it endlessly.  Below is a little video that is just packed full of exciting things. There are all kinds of accomplishments in this one and a half minute video:

• The first thing to notice is that in the very beginning Owen waves "Hi" to me when he sees me sit down with the camera.  It looks a little like he's milking a cow, but that is his wave.  I have been working on this with him for a while now, and now he thinks that it is required every time he sees me, it's just adorable. 
• Next you will see Daddy get his attention to play the piano - not by grabbing his hand as we would have had to have done in days past, but by playing a sound on the piano.  That is an amazing thing in and of itself.  The sheer fact that he likes the toy is a testament to how well he is hearing.  He never used to be interested in toys that made sound, now he loves them.
• The fact that Owen can push the keys hard enough to make a sound is an accomplishment as well.  Since Owen has not crawled and therefore spent huge amounts of time bearing weight on his hands, his hand strength is a bit lacking.  When he first tried to play with this toy a few months ago he couldn't push the keys down hard enough to make a sound, now he merrily bangs away.
• You can't miss the fact that he is sitting up on his own for the entire concert (which was actually much longer than this video clip).  He doesn't sit back on Daddy until the very end.
• After the little transition in the video you will see just how much more interactive he has become.  He finishes his song and then hits his hands on his lap - which is him signing "All done".  Then he sees me and waves "hi" and then for some unknown reason he signs "more" (putting his two hands together with the fingers touching).  He did go back and play at the piano again after that, so maybe he was saying that he was just resting and was planning on doing more.  Either way, it was three bits of communication in short order. We used to beg for a single sign at mealtime!

All in all, a very good day!

This week is going to be very busy.  Tomorrow we will go to the audiologist in North Carolina for a hearing test and possible new mapping on the implant.  He obviously hears very well, so maybe they will just do a check-up and leave it as-is.  On Tuesday we are having a "T" party where his PT (physical therapist), OT (occupational therapist) and ST (speech therapist) will all be here at one time for a brainstorming session.  On Wednesday we have to be at the hospital bright and early for a lower GI test for Owen.  Thursday is Owen in school in the morning, then I drive home and drop him off and go back to Sammy's class to teach ASL.  Friday is speech therapy in Greensboro, NC.   Should be an interesting week!

OK before I get to the doctor story, I wanted to write about my post on the  on the family blog a few days ago where Owen was saying "Mom".  I had a few people ask why I wasn't more excited about it since we've worked so hard for it.  I guess the reason is that it's so hard to know how much importance to put to it when it's something he only does once in a while.  Given the proper usage (he only does it when I am there) and the fact that it is a combination of sounds that he does not make when he is just babbling we are fairly certain that he knows what it means and is doing it intentionally.  My heart certainly soars whenever I hear it, it's just that I hate to get too excited when I can't be sure that it's real.  The real excitement is that he is making more and more sounds that sound like real speech and less like aimless babbling. 

All right, it's been a while since I've put a good rant on the website, but today it's time.  Prepare yourself...it's a long one and there is a lot of discussion of poo...you have been warned...ready?  Owen has reflux.  Really, really bad reflux that has gotten steadily worse as time has gone on.  He also has really, really bad problems with constipation - if you have been following us for a while you have read about these issues before.  The reflux had been reasonably well controlled after we started the medicine last summer, but it has never gone away and lately it's just a constant thing.  We also suspected that his constipation was so bad that it was actually causing problems with his shunt this past January.  His shunt drains into his belly and the poo was taking up so much room that it was causing an intermittent blockage of the end of the catheter. His shunt also had too high of an opening pressure and needed to be replaced anyway, but the constipation was aggrevating the situation.

The pediatric gastroenterologist - who will henceforth be known as the GI so that I don't have to type all that - has been very responsive when we have called with an issue, but his answer is always the same - give him more medicines, enemas, suppositories, etc.  Sometimes the regimens are quite extreme with enemas every day for days on end and huge quantities of Milk of Magnesia and magnesium citrate.  It always works to clear him out, but then he backs right up again in a few weeks even with maintenance doses of Milk of Magnesia.  They did do an upper GI study last summer where they saw the reflux in action and noted the constipation, but they have never done a lower GI or bowel study to find out why he is constipated. 

Lately we've been in a routine where Owen will do just fine and poo every day for about a week and then he will back up.  At this point he won't be able to sleep and will spend half his time arching his back and writhing in agony for a few days until we can get it cleared.  He is missing therapy sessions because he's just so miserable.  So I called and got him an appointment with the GI, which we had to wait three weeks for.  Grrr....

So today was our appointment.  Owen hadn't pooed yesterday despite getting his maintenance dose of Milk of Magnesia plus an extra one.  He woke up at 4:30 am and couldn't go back to sleep and seemed to be in pain.  He was very cranky and miserable when we got to the doc's office.  The doc listened to my description of Owen's issues and then immediately began to talk about more drugs and more enemas and such. 

The doc thinks that he is just never clearing it all out, even when he does poo.  That it was like a hose with a rock in it where water might be able to get around the rock, but that the rock is still in there.  I said that's a nice analogy, but it doesn't explain how the rock got in there in the first place.  I explained that I felt it was time to be a bit more aggressive about finding out why it was that Owen was so constipated.  He proceeded to show me a picture of the last shunt series that was done in January - which also happens to show the whole abdomen so you can see the distal catheter - and pointed out all of the poo in Owen's intesine and said, "See, he was really backed up." To which I replied, "Yes, we know, they had to give him an enema before they could discharge him from the hospital for the shunt revision because he was howling in pain and they couldn't tell if he was OK to go home or not.  The question is WHY was he so constipated???"

And then he did it.  The absolute worst thing that a doctor can say to this particular Mom.  He said that he hadn't bothered with any further studies because children with Owen's "neurological status" often show these types of problems and he is used to treating them with this regimen.  GRRRRR!  I calmly explained that this particular line of reasoning has been used in the past to tell me that he needed seizure medication (because all kids with hydrocephalus have seizures, right? ), to tell me that he'd be a vegetable and to tell me that he was going to die.  All of which proved to be untrue of course.  So I explained that medicating a child to the point where the medication itself is causing massive cramping and pain without making sure that this particular child is in fact suffering from the general problems that you have seen in others is, as I put it, "unwise". 

They are assuming that he has low muscle tone in his intestine and therefore can't move it through.   He doesn't have low muscle tone anywhere else, why would he have it there?  You need a lower GI study where you watch the muscles in action to verify this.  My bigger fear is that there is something else happening that he is missing because he is making an assumption.  He may be absolutely right, but then again he might be missing something that needs to be taken care of.

And even so, the current medicinal regimen is unacceptable.  We have to give him 1 ml of Erythromycin 15 minutes before he can eat or drink anything.  If we don't then either he refluxes it terribly or he outright throws it up.  We can only give him Erythromycin 4 times a day.  So what do you do when it's latein the day when it's 80 degrees out and he is madly signing for a drink but has already had all the medicine I can give him?  Do I let him dehydrate or do I let him have reflux all night? This little scenario happened just last week and it's not going to get better as we head into summer.  In the end I gave him a small drink and split the difference.

In the end I got the study that I was asking for.  Owen is scheduled for a gastrograffin enema next Wednesday so that they can watch things move through.  The doc was polite, but I definitely got the impression that he felt he was just humoring me.

In my experience with the plethora of doctors that Owen has seen, there are two categories of medical professionals.  The first says, "Look, he has hydrocephalus, he has brain damage, there is only so much you can expect for his life anyway so we'll just do the easiest thing and move on."  The other group is more like, "Yup, he has problems but we are going to make sure that we are doing the absolute best we can under the circumstances."  Group A doctors get booted fairly quickly by Mommy and the GI just moved into Group A today. 

So I called down to Duke to see if we can get him in there for another opinion.  Duke prides itself on Group B type doctors and we owe a lot of Owen's success to them.  They said that the first available appointment is in June, but that we should have his records faxed down now and if it seems like there is something they need to do sooner then they will try to get him in.  I will get the records sent down next week, after his test.  I know I can't get him to Duke sooner than Wednesday so we might as well see if there is anything obvious there before making it clear that we are going elsewhere by requesting the records.

Mommy will not accept that her little boy has to suffer because someone thinks it's not worth the effort to make sure they are doing the best they can for him.

OK, rant over.  Thanks for reading.  I promise to keep the rants to a minimum, but we all have these days.

In better news I will post a few pictures that I took about two weeks ago when we had a beautiful warm spell.  It was perfect weather for getting outside and I got a few pictures of Owen and his sister.  As you can see, Owen's sitting skills are getting better every day.  We used to have to take a quick picture and hope he didn't fall over.  He would also try very hard to lay down as soon as you set him up.  Now he will usually sit for a few minutes before even attempting to get back down.  Have a great night!

It seems these days that each day brings something new. There was a long stretch there for a while where it seemed that we weren't making a lot of progress - and now suddenly everything is happening all at once.  Last week Owen stood up entirely unsupported by another person for the first time.  He was holding onto a chair for balance, but no one had their hands on him. 

A few months ago he would just let his knees collapse whenever we tried to stand him up.  He would occassionally push up if you put his legs over your knees, but if you just tried to put his feet down he would just collapse.  I think the hours on end in his walker where he can stand up with all of his weight on his feet but still having a bit of trunk support has really helped him build up his strength.   

This morning I got a couple of pictures and a short video of his newest abilities:

His sitting skills have definitely improved

Owen is looking out at the snow on the first floor roof.  His PT Nacol isn't holding him, she's just ready to catch him if he falls.  He's using his elbows to support himself.

Click the picture to play the video:

Other than that he continues to make new sounds every day.  And he loves to talk to us now.  He has also started vocalizing when we sing his favorite songs, as well as making the signs that go along with the words.  His favorite song is "Itsy Bitsy Spider" and the other day when I said "Do you want to sing a song?" He put his hands together to make the spider.

He has also broadened his range of communication.  He really only used the signs for eat, milk, cookie and sleep on a regular basis.  He also used "more", but only for food.  Now he has started using the sign for "more" in relation to other things that he wants.  His sister has a slide that comes off of her bed.  The physical therapist tried sliding him down the slide during therapy a week ago and he clearly signed "more" to do it again and he did it several times.  His Daddy was playing with a flashlight the other night and Owen just loves to watch lights.  His Daddy was moving it back and forth for Owen to watch and when he stopped Owen signed "more" to get him to do it again. 

Obviously we want him to vocalize these choices, but signing was his only form of communication for two years and we're hardly going to cut him off from the only form of expression he knows while we teach him something new.  Each time he signs we always say the word that goes with the sign before we give him what he has asked for. 

One more thing for tonight.  Owen has a care giver that comes and stays with him for a few hours on Monday, Tuesday and Wednesday so that Mommy and Daddy can get some work done.  Her name is Rose and she and Owen get along very well.  However either myself or Owen's Daddy are generally around all day because Daddy works from home.  Now that Owen is mobile in his walker and can go wherever he pleases, he has taken to wandering into the office every little while throughout the day to check on us.  Usually one or the other of us is in there.  Well today Daddy went to do some shopping and Mommy was in the shower when he roamed in there, and this did not make him happy.  He fussed for a while and required some real snuggling by Rose to be happy again.  I realized that while he has been left without Mommy and Daddy before with other care givers, that was before he could move and go looking for us.  Today was the first time that he made the choice to find us and we weren't there.  While it was sad to see him upset, it made us happy in the sense that it requires a certain amount of social awareness to miss someone and to seek them out.  So it was a milestone in its own way.

Finally I have to mention two little ones that have had a rough week.  I have met so many wonderful people through this website, and some that I have really come to consider good friends.  Two of their little ones have been in the hospital this week.  The first was Elisabeth, whose Mom Lisa blogs at: http://www.donaldandlisasorensonfamily.blogspot.com/  She had a rough week and is finally headed home today.  The other is Matthew whose Mom Jill blogs at: http://www.soldatke6.blogspot.com/  I have met both of these Mom's and their little ones when they came to Duke for cord blood infusions.  They are wonderful families and I ask that you keep them in your thoughts this week.  I look to them for strength when Owen is in the hospital, so I'm hoping to help lend them some this week as their kids get better.

Have a great week!