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:

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:

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!

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

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:

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:

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:

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:

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

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:

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:

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:

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!

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