Friday, August 27, 2010

One Year at Home

Hope tucked in for the night

It's so hard to believe, but Hope has been home and out of the hospital for a year now. It has been a wonderful and adventure filled year that included:

* Weaning off many of her medications. When she came home from the hospital, she was on about 50% more medications than she is now. She needs half the breathing treatments that she was getting when she came home.

* Seeing fewer doctors and seeing the ones she does still need less often. Hope no longer needs to see the neurologist and she sees her kidney doctor, urologist, developmental pediatrician and ear, nose and throat doctor only twice a year.

* Getting into a real bed time routine and sleeping through the night. It was a long time in the making but Hope now sleeps through the night. Since she has a nurse with her at night she often thought it was playtime whenever she wanted. Now she has a solid bedtime routine and knows when it's time to go to sleep.

* Lowered ventilator settings. Although it's been slow progress Hope has made steady progress this summer getting her ventilator settings lower. She hasn't struggled with the lowered settings at any point and we continue to shoot for getting rid of the ventilator all together.

* Lowered oxygen. When Hope came home she was still experiencing the occassional desat episodes that scared us so many times in the hospital. She hasn't had one of these in many many months and is on only a trace amount of oxygen (and really doesn't need that).

* Growing big and strong. Hope was measured today and is 30 inches long! She's growing longer and leaner every day.

* Staying healthy. Hope only had one re-admittance to the hospital. She was able to stay cold and flu free all year!

... And one of the big accomplishments of the past year.....

* Hope can hear! Having the cochlear implant done in July and activated last week, Hope has done really well adapting to hearing.

It has been such a wonderful year. We all feel so blessed to have Hope home with us each and every day. We are looking forward to the many accomplishments of the next year!! :)

Wednesday, August 18, 2010

Hope can hear!

After Activation
Hope can hear!
We got a call first thing Tuesday morning (the day of the activation) and learned that the audiologist that was going to do Hope's activation was out of the office sick. We were given the option of either waiting until Thursday or the director of the program was offering to do the activation at 2:30 (just a little later than the originally scheduled appointment). We decided to do it at 2:30 because Andrew had taken the day off and we didn't want Hope to have to wait any longer than she already had.
We had smooth sailing until we got to Brighton where the expressway was closed due to an overturned semi-truck that had apparently spilled battery acid all over the road. We called the office to let them know our situation and thankfully they were willing to wait for us. Finally we arrived (2 hours later than the scheduled appointment).
The external portion of Hope's implant was put on her head and connected to the computer. Dr. Zwolan then ran some tests to see at what levels we thought Hope might be detecting sound. The computer would play three beeps and then we would look for a response from Hope. We weren't sure what we would see, whether the sound would surprise her, scare her, make her laugh... well we definitely got a response..... She cried and screamed. Hope didn't not like sound at first.
Once we determined what level Hope was detecting the sound at, her implant was set at a lower level to allow her to adjust to sound. We will slowly and gradually increase these settings over time to get her used to sound.
Hope is also working on improving her fine motor skills. She has made a game out of reaching up, grabbing the processor and coil and pulling it right off of her head. She definitely knows how to get what she wants! :)
We are all so thankful and happy and want to thank everyone for all of their prayers. We go back to Ann Arbor on Thursday for a programming adjustment and will let everyone know how Hope does figuring out her new world full of sound!
(Grandpa Robinson took video of the activation but I haven't figured out how upload it onto the computer yet. As soon as I do I'll post it.)