KT@CHoA (Katie Update #25)

Okay, so the majority of the readers of this site have probably already given up hope for an update and have thus stopped checking, but I figured I'd post an update anyway. Katie has made so much progress in her recovery over the past week and a half that I've really had a hard time putting a stake in the ground and writing, but here goes...

We were originally scheduled to move from MCG to Children's Hospital of Atlanta at Scottish Rite on Tuesday of last week (the 8th), but we had a minor setback. She had a few seizures (thankfully only focal seizures resulting only in staring and lack of consciousness, not the grand mal variety that she originally experienced) on that Monday evening and we got a bit spooked. The doctors readjusted her medications and things stabilized enough that we were able to transport her to CHOA on Thursday the 10th. She was taken by ambulance at around 9AM on Thursday and she moved into Room 402 of the Comprehensive Inpatient Rehabilitation Unit (CIRU), where she remains today.

As reported in the last update, her recovery continues to accelerate quite rapidly. Monday prior to her departure from MCG, the occupational and physical therapists decided that it was time for Katie to try and walk. Of course, Katie was all for it and, with the aid of a walker, took her first steps at around 1:15 in the afternoon of the 9th. This was obviously very stressful and perhaps led to the seizures that she had that evening, so we didn't really try and walk again until Wednesday. But she's been walking regularly since. In fact, for the past couple of days, she was able to walk without the aid of a walker (requiring only a steadying hand to help with occasional balance problems). However, yesterday, the physical therapist fitted her legs with casts to help stretch out her Achilles tendons, which had become severely constricted during her weeks in bed. Thus, she is once again unable to walk without help, but this is only temporary as they should be removed on Friday.

Her physical strength is improving rapidly, as well. She is now fully capable of getting in and out of bed on her own, which is probably one of the more difficult tasks given the amount of atrophy that generally occurs in the muscles of the upper and lower torso when one is bedridden for so long. She can now also perform most of her daily tasks, including bathroom related activities, grooming, and dressing herself, all very significant strides forward. She did sustain what appears to be nerve damage in her left arm which has resulted in marked weakness on that side. However, she is working hard and we feel like it is only a matter of time before she has recovered most if not all of the strength in that arm as well.

The doctors finally removed her feeding tube on Monday, which was very exciting for Katie. Aside from the casts on her legs, there are now no remaining medical devices attached to her whatsoever. This is amazing, considering that less than three weeks ago, numerous machines and drugs were required just to keep her alive. She is now able to eat and drink almost regularly. She has had some trouble with thin liquids slipping into her trachea, so she has to put a thickening agent into her drinks. She will have a "swallowing test" (swallowing barium infused liquids in front of an X-Ray device) on Friday to see if this is still necessary, which we feel she will probably pass. Aside from this, she has progressed from the grits and pureed spaghetti of late last week to fruit and a chicken wrap last night. Needless to say, this has greatly improved her spirits.

She is very aware of her situation and has a very good outlook. She believes that God saved her and that she needs to use this experience to help others. Her attitude simply amazes me. I'd be angry and asking "why me?!?" She is accepting and asking "how can I grow from this experience?" She is truly an inspiration for all of us. She is currently scheduled for discharge from the inpatient facilities at CHOA on Wednesday the 23rd. We expect that she will remain in Atlanta at least during the week receiving outpatient rehabilitation support for some time after her discharge, though for how long we cannot know. Regardless, however, she will be able to return home on the weekends, which will be a blessing. Any return to normality can only help move her forward in her recovery process. I know she is anxious to return home and to see all of her friends and I'm sure her friends are anxious to see her, as well. Oh, and I promised to let you know when she was ready to receive visitors. Well, when she comes home, she most certainly will!

Thanks as always,
Paul