Lots of updates

A lot has happened over the past month - exciting surprises mixed with some bitter sweet realities.  I'll concentrate on the joys and surprises and not dwell on the details that could easily wear us down in body and spirit.

Darlene and I were very excited a few weeks ago when our insurance company approved Laura visiting a world renown specialist in Pittsburgh. We drove to Pittsburgh the night before the appointment and saw Dr. Escolar from 9am to 4 pm the following day.  Laura received a thourough examination in multiple areas and we gained an incredible amount of knowledge along with a lot of helpful hints.  Laura's profile and baseline levels are about complete now which will allow us to gauge her progress.

Lately she's been in a lot of pain which we attributed to nerve pain and pressure sores.  This pain was compounded by an outbreak of shingles in a few areas.

One of the challenges Darlene and I have experienced is the need to have Laura stand upright for at least 2 hours a day.  This has been accomplished by holding Laura up  in 10 minute intervals throughout the course of the day.


Another challenge we've had is making sure that Laura is properly hydrated.  On average we've been able to hydrate Laura at about 30 oz. per day, which is short of her needs.  We've been offered lots of suggestions, but have not found any practical solutions yet.  While on her shingle medicine, Laura needed to drink twice as much as normal so we had to really ramp up our efforts.  Between the standing ( 10 minutes per hour) and assisting with the liquid intake (requiring an additional 10 minutes per hour), you can see how this was turning into a full time operation.  And because of the pain, Laura would frequently wake up 1 to 2 times a night and require to be turned/re-positioned.



None the less, it's not all gloomy.  Last week we were given an Up-and-Go walker from another family at Kennedy Krieger that no longer needed it.  This allows Laura to stand on her own and even take a few steps.  The Up n’ Go is a device that combines the best features of traditional gait trainers and partial weight bearing “lifters.” Individuals with moderate to severe lower extremity disability can use the tool to improve their lower extremity strength and balance while gaining confidence and hope.

In addition, Laura has been approved to receive a "Stander" which would simply the whole sit-to stand motion and support her so she can stand unassited for however long she wants.

So here's hoping for blue skys, warm weather, and the start of spring training.  The Orioles flag will [temporarily] replace the Super Bowl champion Baltimore Ravens flag that is over our front door.  And the birds will soon be singing and flowers blooming.