Moving Right Along

Yum - squash!

Loving being vent free!

Hope and Daddy hanging out

Hope has continued to make great progress with more and more time off of the ventilator. She is now up to 3 1/2 hours twice a day off the vent and today we will go up to 4 to 4 1/2 if she tolerates it. She loves being vent free and sometimes gets mad when we put her back on the ventilator. Like a typical 2-year old she will often grab the tubing, disconnect it and throw it on the floor!

Last week we went for a cochlear programming appointment. When they tested Hope's nerve response we found that Hope loves sound LOUD. The louder the test got the happier Hope got. She started out smiling, then giggling then outright laughing at the louder sounds! We tried her in the sound booth again (something we haven't done since she's had the implant). Prior to getting the implant when they put her in the sound booth and played sounds Hope didn't really respond at all. This time she laughed at every sound they played. What a remarkable difference!

February has been a month of many trips to Ann Arbor. Two weeks ago we went to U of M for a video swallow study. Hope had an appointment earlier in the day with her cochlear implant surgeon. He was happy with how everything looks. By the time we got to the swallow study though, Hope was ready for a nap and just wanted to sleep. She struggled with the swallow study. To do the swallow study they give her barium by mouth and watch on x-ray what happens. Since Hope was so sleepy she didn't do well with thin liquids. We are going to keep practicing with some thickened liquids and pureed foods and try the study again in the future to see if she will do better next time.

Hope was scheduled to have a video EEG done earlier this week but a snow storm kept us home instead. We will be rescheduling the test for sometime in the future.

For now we are all looking forward to warmer weather when we can get outside and run around without the ventilator! Hope thinks a tree swing sounds like fun!!