Before the Birth
   Background
   The Diagnosis
   Doctor Switch #1
   The Tests
   The Roller Coaster Ride
   Doctor Switch #2
   The Final Switch and Hope At Last
 
Updates After Owen's Birth
      The Birth
      At the Hospital
      Home At Last
      Shunt Replacement
      Progress (5/3/2007)
      Progress (8/4/2007)
      Progress (10/28/2007)
 
 
      Progress (11/26/2007)
      Progress (12/6/2007)
      Progress (1/21/2008)
      Progress (2/20/2008)
      Progress (3/20/2008)
      Progress (4/14/2008)
      Progress (5/9/2008)
 
 
      Progress (6/2/2008)
      June 2008 Infection
      Progress (8/17/2008)
      Progress (9/12/2008)
      Progress (9/16/2008)
             
 
Progress - March 20, 2008
WOW!!! WHAT A MONTH!!!!

Can you tell that we have had a lot of excitement here with Owen? I want to begin at the beginning but I just can't, so we'll start with this week and work our way backwards so that you can get to the video. Starting about a week ago I thought I saw Owen making the sign for "eat". I've shown him this sign at almost every meal since he started eating solids at six months old, sometimes more than 20 times at a feeding. He had never done anything that I could remotely consider an actual repetition of this sign, or any of the other signs that I had been using. I had taught my daughter, whose hearing is normal, to sign and by 12 months old she could sign eat and cracker and drink and cat and many other things. But at 17 and a half months Owen had never made any attempts at all to sign. So when he started putting his hand to his mouth a little less than a week ago I started feeding him Gerber Snack stars each time I thought I saw the sign for eat. Within a few days it seemed like he was really "getting it". By the day before yesterday there was no question, he had it. Today we were confident enough that we tried video taping it and we caught it all on disc.

To add to the excitement of the video you will also see Owen drinking from a straw. We had been trying for a long time to get him to do this because he can't drink from a cup while sitting in his blue chair since he can't tilt his head backward. Owen's occupational therapist gave us this great little helper which is a honey bear with a tube in it. You can push the liquid up to help them get the idea that you can get a drink from this gizmo and walla, he learned it.

The learning process for the straw was amazing as well. We've had trouble in the past with teaching Owen because when you try to reward him by getting all excited and waving your hands and such, he just didn't get it. He didn't seek the reward, so he didn't repeat the behaviour just to get the reward, and therefore he didn't learn. This time though, when he would succeed in getting some liquid from the straw, we would start waving our hands and he would start joining in and waving his hands wildly (Owen is deaf and cannot hear you clap, so we make big hand gestures instead). After he had been working for a while and we had gone through the drink a little bit/get big hand waving cycle a dozen times, the adults started to talk about the schedule for next week and didn't do the hand waving after he drank. He looked around for a second to see if anyone was paying attention and then started to squeal and wave his hands until we joined in. It was so much fun and it has been so much easier to try and teach him things when he joins in.

Life since the second cord blood infusion has been a whirlwind. He has been learning new things left and right and we're just so excited. Yes, we know that we can't scientifically prove that it was the cord blood, but to start signing after soooo many failed attempts for so long really does have to make you seriously consider the possibility that it has helped. So without further ado, here is the video of Owen's latest achievements (and for the uninitiated, the "eat" sign is simply putting your hand to your mouth):


Owen's New Achievements


So the other news, as you may have gathered from above, is that during Owen's last set of hearing tests last week the audiologist said that she does not believe that Owen has any hearing left at all. It was odd because after he got the hearing aids he started saying "Mama" and "Dada" and "No" again. So we thought that he was in fact hearing something. But during the testing they played sounds that were, as Dr. Buchman put it, as loud as standing next to a jet engine at full throttle and Owen didn't even blink. Of course he also has had his cord blood since he got the hearing aids and his greatly increased interactivity might also account for the words. He has not gained any other words and those really are just elemental sounds that can easily be reinforced by rewards.

So Owen has now officially been transferred to the cochlear implant program. Dr. Buchman, who is the cochlear implant surgeon, has been at every one of Owen's audiology appointments though, so it is nice that there will still be one familiar face as we move to the new group. The next steps are a speech and language evaluation that is scheduled for March 31st, and an MRI that we are currently trying to get scheduled. The MRI is the last physical hurdle we have to clear for getting the cochlear implant as it will determine whether or not Owen has enough intact nerve endings for an implant to work. We have also found out that Owen will be able to keep his existing shunt even with an implant. Further testing by Dr. Buchman's group has shown several models of cochlear implants that are not capable of reprogramming his shunt. This makes the decision to move forward much easier.

So it has been a wonderful few weeks here and we couldn't be happier. I will close with two pictures that I took of Owen and his sister today. His sister just got that gymnastics leotard yesterday from a friend and she has insisted on wearing it all day :-)

    
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