The Amazing Owen
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What an awesome video! He can really get around! And he looks so handsome and grown up in the photo where he is standing. Thanks for being an inspiration for us!
Comment By Sherri At 1/4/2009 9:57 PM
I am completely giddy about Owen's hearing results, his sitting, standing, etc. He's doing so good!! His friends from Ohio are so proud of him!!
Comment By Kristen At 1/7/2009 12:31 AM

Original Entry:
Happy New Year!

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! 

Audiogram-2008-12-22.jpg

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:

Audiogram-2008-12-22-st.jpg

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:

BlueChair.jpg

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:

2009-01-03-0007.jpg

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. 

09-23-2008-0003-walker.jpg

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:

10-12-2007-0008-walker.jpg

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:

12-25-2008-0254.jpg

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:

2009-01-01-0029.jpg

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:

2009-01-01-0032.jpg

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:

Thumb-OwenCruises-Jan-3-2009.jpg

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:

12-02-2008-0088.jpg

 

 
 
 



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