Thursday, July 12, 2007

OUTING!



Madi (and Mom) were going a bit stir crazy, so earlier this week we took Cuz KC along for a tourist day at Alex Bay!
Madi had never done the Uncle Sam Boat Tour and Boldt Castle Tour, so off we went.
Of course, the heat that day was outrageous, but we went "turtle speed" :) all day for Madi
KC was quite the gentleman, holding doors for Madi...helping her up and down stairs...it was sweet to watch!
It was a great mental boost for her to get out and about!
She is having some breathing issues with the humidity and we often stick her head in the freezer. Yep, really. It seems to help her breathing and certainly cools her off since she can't get wet yet.
TODAY is her "bird bath day" which means she can sit in a small tub and clean up and wash her hair. YIPPEEEE!
Incision is healing well and we are certainly on track to recovery!

Wednesday, July 04, 2007

Update!



Sorry that we haven't been online...I didn't have access to a computer the entire trip...and couldn't leave Madi.
She had her old device taken out on the left and replaced with a new one. She is very happy because the old device was the big "bump" on her back before and that is gone! She also had an expansion on the right side.
Her pain level, from my perspective, was much more intense the initial three days after surgery than ever before. She would cry and say that she was "just uncomfortable". Ya think?
I think.
Once she was off the morphine and the IV antibiotics, she really seemed to come around.
An outbreak of RSV led her surgeon to push...and get her outa there.
SO, we are home. Probably, a bit too early. So...no visitors, yet, please. She is just laying low and requires constant care through til Monday:)
She loves getting emails and a few phone calls would cheer her up. Her pain is still pretty intense and the meds are making her very sick to her belly. Yuk.
Madi had a complete hearing screen this trip. As those of you who know me know, I have constantly worried about her hearing. With good reason; again, unfortunately,Mom knows best. They discovered that she has lost almost all of her left inner ear hearing. Most likely this is from long term IV antibiotics. Something that we cannot avoid, obviously...but Dr. Deeney is trying to get her off from them after surgery and onto a strong oral IV asap. We are screening every three months and watching to see if/when a hearing device would be of assistance for her. For now, they noted that she compensates extremely well.
Madi had a wonderful experience...again...with the Child life specialists. This time, the music therapist, Nichole thrilled her by having her make her own CD! Madi wrote the lyrics and created the tune and Nichole brought in the instruments and the recording device and TADA...Madi's first (certainly not last) song was created! Don't worry...I am sure all who know her will have the chance to hear it over and over and over again. You may even get your VERY OWN CD! WOW!
Personally, so glad to be home and can't wait to get back to dance class...and all my friends and family:)
Thanks for your love and support and prayers!
Rhonda and Madi