"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Thursday, July 12, 2012

Long Over Due Update

We got back home from Baltimore from Katya's check-up in the early AM hours of Friday, June 29. Later that day, towards evening, a powerful storm slammed our state, and we lost power and did not regain it again until an entire week later on July 6! When all the dust had settled, and we were trying to return to "normal" (whatever that is!) we discovered that in addition to losing multiple surge protectors, our DVD player, Video Player AND our TV screen, our main computer tower was also fried. We fortunately were able to get it repaired and working on Tuesday of this week, so now I can blog again! A used TV screen was given to us, and we are still trying to be patient and wait until we can find a used DVD/VCR player. I will be glad when we can, as Katya uses them to watch her Signing Time Videos and DVD's, and her signing has recently just really taken off--something I credit in large to her using Signing Time. It's sooo fun to have her pull out a sign and use it appropriately when we didn't know she knew it!

Katya's check-up went well. Her plastic surgeon said that the damage from her plate dislodging does not appear to be too severe, and at this point there is nothing to be done but sit tight, and wait and see what time does with her head shape. It is slightly worse than before the plate dislodged, but not significantly. And since her head shape was not completely typical pre-or post-surgery ANYWAY I don't feel that we have lost very much. Her Doctor said that this is not usual, but hey, what HAS been "usual" about Katya's process with this?! Her whole case is very unusual--so unusual that there will be a whole article about the case in a medical journal! So none of us are terribly surprised that something more is unusual. The good news is that we are back on schedule to not return for another check-up until March 2013 unless something more crops up.

After we were done with the follow-up, we walked around the new Children's Hospital part for a bit. We were trying to assess Katya's comfort level in the new area. She seemed really comfy (not recognizing it as a "dangerous" part of the hospital) so we found the patient services office and enlisted their advice and help in getting permission to see if we could take Katya to the new PICU to say "Hello!" and "Thank you!" to the staff there! The Patient Representative who we most dealt with during Katya's stays in PICU, Rebecca, was on duty that day, happily for us! She remembered us and told us to come on up, and she would show us around! It was a happy, happy reunion!!

Some of the staff didn't recognize Katya right at first, so changed (for the better!) is she! There were happy hugs, some almost tears . . . lots and lots of emotions all over the place for ALL of us!! Sadly, a couple of the Drs who we really were hoping to see--Dr. Carina and Dr. Nelson--were not available right then to come say, "Hi" so Rebecca took photos of Katya after she rounded up a photo and promised to print them out and post on the bulletin board in the staff lounge. One nurse, who we had especially loved, Mary Lou, said, she had been thinking about Katya lately and wondering how she was doing so she was thrilled to get to see with her own eyes how happy and healthy she is now! Katya seemed clearly glad to see Mary Lou, and happily hugged her a few times, so I think the visit back was a good "closure/healing" thing for all of us. The staff who got to see Katya who had cared for her were really grateful we brought her back.

Since the new PICU is all private rooms now, unlike the old PICU we were in with Katya, there was not the concern about exposure to illness/patient privacy like there would have been if they were still based in the old PICU. Also, I am NOT sure that taking Katya back to the old PICU would have been emotionally healthy for her. But the new PICU is sooo vastly different a realm from their old PICU that she was basically fine with it. The only time she started to get worried was when we were taken to another area to meet some other nurses, and she could see a little boy in bed. She went closer to the doorway, and stared with a interested look, then became mildly agitated and looked worried. We quickly assured her that she was well, had NO OWIES and did NOT need the hospital and we were going to go HOME! Those words sent her off into a joyful fit of jumping and flapping with glee. ;--) She clearly understood.

Unfortunately, we did not have a working camera on this trip (the battery charger went missing on the previous trip) so I have no photos from the visit to share. Even though the visit to PICU made us get home a lot later than was nice, Paul, Charity, and I all agreed it had been well worth the time and effort to go back and say, "Thank you!" Chad was with us that trip but he chose to spend the hours at his "old stomping grounds" at the little Christian School/Day Care. He had a great time there with his friends, and enjoyed himself much more than he would have dragging around the hospital for the hours we were there.

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