Friday, April 30th will be Lauren's last day at the Children's Seashore House. Which, by the way, is nowhere near the shore. It's in west Philadelphia, right behind Children's Hospital. It did have its beginnings at the shore though, Atlantic City I think.
Since we have not really trailed Lauren for the past two weeks while she has been home, we decided it would be a good idea for me to follow her today through PT & OT to see how she has progressed, discuss things with her therapists, and try to determine what issues we may want to discuss with her doctors. We have follow up visits scheduled over the next several weeks with the Opthamologist, Neurosurgeon, Neurologists and the Physiatrist (rehabilitation doctor). Sandra will trail her on Friday and see to her discharge from the Day Hospital.
Both Kate (OT) and Ashley(PT) rave about Lauren's progress. This morning in OT they tested her eye/hand coordination, which they said she did very well with. It is mostly to test dominent hand ability, which was never an issue for Lauren as she is right handed. The test also provides hard test scores which they can use later if they need to. She did some more hand bike exercises, and in the second half-hour session she did arm and upper body exercises with dumbbells. Kate said once she is discharged, Lauren will not need any outpatient Occupational Therapy.
Ashley said that she is very impressed with Lauren's progress. She said that she will discharge her with an articulated ankle-foot orthotic (AFO), but that Lauren really may not need to use it all the time. She said she could see Lauren not needing to use it at all one day, or as one of the Physiatrist's said, she may use it at her discretion. Perhaps if she is going to be hiking or playing basketball, but not necessarily when she is going to the beach or wearing a dress. Ashley said Lauren has regained her ability to flex her ankle up and down (like pushing on or off the gas pedal in a car) and that the tone (stiffness) in her left calf is almost all gone. She is still a little at risk for twisting her ankle, as she tends to roll to the outside of her foot, but Ashley said that they could continue to work on that in outpatient therapy. The fact that she has come so far in other areas is a great sign regarding her ability to overcome this rolling too. Ashley is going to recommend Lauren get outpatient PT 2-3 days a week, and both Ashley and Kate are going to release her with home exercises/activities.
I asked Ashley if we were done brain mapping at this point and were now just working on the physical aspects of Lauren's injury and she confirmed that while brain mapping (healing, reconnecting, reallocating command) will continue to take place, the lions share of it was done. Now it is just a matter of continuing daily activities and becoming as strong and as fluid as she once was.
Regarding seizures, she had a small one last weekend when she missed her medication one evening. She told Sandra about it, that it was a small one in her leg, but no one saw it. James was sleeping with her and it didn't wake him. We were a little distraught, but Barbara Beck, our neurology nurse practitioner said not to worry about it. She said that we did the best we could regarding the resection, addressing the problem with the least amount of damage. Now we need to rehabilitate Lauren to get her back to normal with her mobility. The last piece will be evaluating where we stand with the epilepsy, her seizures, and what medications she will need to take and for how long. As it has been for the last nine years, this is a long process with no certain outcomes.
Lauren is back to school on Monday, May 3rd. Her reintegration to school and her routine will take time, but I am confident the school will do an excellent job accommodating her. The more we get back to normal, the more Lauren will develop the strength and skills to resume her life as normal.
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Great news!
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