Sunday, March 18, 2012

Video from morning after ABI was activated

video
For those of you who are not on facebook, this is a video of Amelia the morning after her implant was activated.  What a difference from the day before!!
They're home (March 15th)
Tom picked up some very weary travelers at the airport late last night and we feel like we can breathe a little easier now that they are safely back home. Kristina said that Amelia was extremely anxious going through the airports and security screening and whimpered the whole time, but once she was settled in the airplane she did great during both long flights. Maybe she thought that the airport was still another hospital where she was going to get hurt in some way. Amelia has always been so completely trusting and accepting of everyone around her and we hate to see that this ordeal seems to have broken that trust. However, she is very young and I'm sure this experience will fade in her memory.
I just returned from a quick visit to the Heston home to return some of Siena's clothing and they were busy unpacking and trying to get get their house back in order. They are planning to pick up Siena from school today and I know she will so excited to see them.
Amelia was still in her pj's and was wearing her new hearing device. It looks like a button that is attached to the back of her head (on the right side) with a little wire leading to a small device which is clipped to her collar. She seems to have accepted this new addition to her person and does not seem to mind it at all. Her hair is growing in again and she looks like a little boy with his summer buzz cut. The scar behind her ear looks huge but seems to be healing nicely. She was happy to see me and she picked up right where she left off six weeks ago, hanging up my keys and making sure all the buttons on my sweater were fastened. :)
These past six months have been such a whirlwind of activity for all of us, that we hardly know what to do at the moment. We are thankful, awed, relieved and more than a little tired. I guess we'll have to allow some time for settling down and then tackle the next chapter in Amelia's life which this learning to interpret and process sound.
Stay tuned and please keep on praying. God is listening!

Monday, March 12, 2012

Activation Day

Phew....what a day! We are all exhausted so I'm going to make this quick.

 Amelia on the way to the hospital this morning....

so cute!!
 
We arrived at the hospital at 7:45 this morning. All 4 families were told to come at the same time (as usual) so Amelia was second in line to get her ABR (or BAER - auditory brainstem response). It is a test performed under sedation where electrodes are placed around her head to measure brain waves in response to various sounds. The test took about 1 hour and Dr Carner told us that she was responding to low levels of sound which makes him very happy because it means she has lots of potential. If it makes him happy, it makes us happy too since he knows what all of that means :). It was almost 1130 by then and he told us to return at 2:30 for her activation.

After a quick lunch at our apartment we tried to relax a little bit before returning to the hospital (didn't really work).   Amelia didn't get a nap which is never a good thing.  She also is getting worse and worse about going to the hospital.  All we have to do is cross the street on the way to the hospital (and away from the park) and she starts crying and tugging to go in the opposite direction.  Activation took about 45 minutes.  There were 2 audiologists in the room as well as a representative from MedEl.  Everyone was incredibly nice and there were many toys in the room to try to keep Amelia entertained.

Her device was hooked up to the computer and they went through the electrodes one by one according to her response in the ABR.  Amelia cried the entire time!  She responded very obviously when the electrodes were activated but usually that just meant crying even louder.   She could hear for the first time!!  It was a crazy mix of emotions for me as I was excited to see her respond but at the same time my heart was breaking while she was crying.  The audiologists payed close attention to Amelia's responses and would turn the volume up and down as necessary.  The device has 12 electrodes and 9 of them were activated (all 12 of them were tested and then the last 3 were turned off).

 We took the device off and another MedEl representative went over all of the details of the device (batteries, charging, tiny pins that hold the device together... lots of little details).  It took ~1/2 hr and Amelia cried during that as well (did I mention that she doesn't like the hospital - poor thing - too many shots, IVs and bandage changes).

I can't even imagine how different and scary all of this must have been for her.  Her world is changing! We waited to put her device on again until later at our apartment when dinner was almost over.  We were hoping some dessert might distract her.  She was scared and did not want to wear it at first but she was much calmer than in the hospital.  We left it on for about 20 minutes.  We turned it off but left it on her head and we could immediately tell she noticed a change.  She was very still for a few moments and seemed to be processing her newly acquired sense.  We know she has an insatiable curiosity about the world around her so we are hopeful that leads to an eagerness to learn about sounds as well.

So much for making this quick......... My mind is very full and I have a lot to process so I will leave it at this for now.

Thanks to all of you for supporting us on this journey!

Friday, March 9, 2012

Our last week in Italy

It's hard to believe we have been in Italy almost 6 weeks already! This last week we have spent relaxing and exploring Verona (well....DJ has been doing a lot of school work and maybe not as much relaxing as Amelia and I). On Monday Amelia's ABI will be activated and if all goes well, we will be leaving Verona on Tuesday afternoon. And giving Siena a big bear hug on Thursday :).

There are some seriously cool playgrounds around here:





Amelia enjoying the bus ride:


Found some delicious gelato in the city center:


Tomorrow morning we are planning on checking out the farmer's market down the street.

Monday, March 5, 2012

One day at a time

We were able to go to the Dolomites in Northern Italy for a few days (in between hospital visits). We stayed in Castelrotto (or Kastelruth) in a beautiful hotel with amazing views all around.



One day we took a cable car to Alpe di Siusi. It is a vast alpine meadow with all different types of recreational activities available - skiing (downhill and cross-country), snowboarding and lots of hiking esp in the spring and summer. The weather was unseasonably warm while we were there but they were expecting more snow in a few days.



The Dolomites are very close to the Austrian border so most everyone there spoke Italian, German and English but German seemed to be the favored language. All of the names of places and menu items were written in both German and Italian. It didn't even feel like we were in Italy anymore. The architecture was completely different and we were able to get different types of food such as tyrolean dumplings (yummy!), sausages, strudels and delicious breads. It was a well-needed mini-vacation for us and we felt rested and rejuvinated when we returned to our apartment in Italy.


- fun swing near our apartment-

Today Amelia had her stitches removed :). The incision is healing nicely. We were hoping the bandage would be removed permanently but the doctors put a new one on again. It will be removed Thurs so we can deal with it for a few more days. Her skin is getting very irritated from the tape being put on and removed so many times (it is very sticky!) but hopefully her skin will recover quickly.

Her activation day is now scheduled for Mon the 12th. We are leaving for Milan on the 13th and flying home early on the 14th so hopefully it all works out. We are anxious to get home and see our family and friends (esp Siena - we miss her so much!).