Post-Thanksgiving Update

Isabella has felt better over the last couple of days.  She’s actually been able to walk around the house (with assistance) and has been able to go up stairs (again, with assistance).  Her speaking has also improved somewhat as she tries to speak sentences now, although it is still difficult to understand what she is trying to say.  This usually leads to a lot of crying since she gets frustrated at not being able to communicate, but we’ve gotten better in trying to figure out what she is trying to say.  We’ve thought about using picture boards so she can point to common requests (hungry, thirsty, bathroom, etc.) but just like with muscles, we want to encourage her to speak so that she doesn’t lose the ability completely.

Treatment-wise, Isabella is on a low dose chemo regimen.  With the low dose chemo, we don’t have to spend a week in the hospital and we don’t suffer from some of the more serious side effects, such as neutropenia (low blood counts) and hair loss.  In fact, Isabella’s hair has grown in nicely and is starting to develop their representative curls.  We still have her on a minimal dose of steroids to minimize the effects of swelling in her brain, but we hope to taper her completely off the steroids soon.  Tapering off steroids needs to be done in a slow and controlled manner, otherwise Isabella could have severe reactions.  A couple of times when we dropped the steroid dose, Isabella began to exhibit some neurological symptoms (not being able to walk, talk, etc.) until we raised the dosage.

Over the last couple weeks, we’ve kept busy around the house.  We took advantage of the great Fall weather here in CT and repainted the front porch and railings, which were in bad need of a refresher.  We also got a head start on Christmas and decorated the outside of our house.  I believe this is the earliest we’ve ever had our house decorated.  We’re going to wait until this weekend for the tree since we don’t want it to dry up and die before Christmas.

Speaking of the great weather, we spent one last night roasting marshmallows before we prepped the deck for the winter.  Here’s a picture of us sitting on the deck.

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