Haley’s Giggle

This trip to the Sloan team had a specific goal: to give Haley another CT scan, and see what if any changes have been for the past two years. The cause for concern was the little “injury” that the neurologists spotted two years ago immediately following Haley’s transplant.  They said that it was an injury that is common among kids with low platelets (and also preemies).  What they didn’t say was what kind of injury and where it was.  (or they did and I had forgotten because they told us it was nothing to worry about, so because there were so many other things to worry about, I let this slip out of my mind).  Haley has calcifications by the periventricular disutribution (where you make spinal fluid). Major calcifications in that area can cause a number of things, from heart failure to cerebral palsy.  This injury was not caused during the chemo/transplant or as a result of either. This injury was caused by the fact that she had low platelets, and occurred either at birth or in utero, when her platelet count was too low to prevent such an injury.  This injury was the point of concern, as Haley’s walking has been at issue, and it was unclear if her “movement disorders” were acutally a result of that injury or any other neurological cause.

We’re happy and grateful to report that the CT scan showed the exact same injury, not any bigger nor more prolific. This means that while there has been “injury,” the damage does not appear to be related to her walking issues (or her intermittent body shaking).  Clearly, there is a movement issue, and as the neurologist said, it all starts with the brain.  Nice Neurologist did a few cognitive/intelligence questions to determine any issues in that way, and concluded that Haley is advanced for her age when it comes to cognitive function and her injury should not cuase any future issues. Nice Neurologist asked if we would be OK with the diagnosis; the truth is, it was all I could do not to hug him.  The only thing going forward is to give Haley alot more physical therapy, and to introduce occputional therapy. She will be fitted with orthotics, which shoudl at least minimize any weird hip development, etc.

Since we’re on a roll with good news, Haley has ained two pounds in 3 months. OK, as far as feeding tube kids go, it’s not a lot of weight gained, and they would like to see her gain a lot more.  She’s also gained in height. But we’re in the right direction. So hooray for bacon, which we firmly believe is the cause for her hefty success.

On the two year mark of starting her chemo, Haley was seen by none other than Dr. B (he’s usually not there when we come up for a visit).  Awesome Nurse was there too. As always she wowed them with her charms and giggles. Aunt Bea came to spend the day, and of course we had the pleasure of being with Lori, Len, Sam, Jonah, and Alex, who make us always feel welcome.

There’s so much more to the visit, but this entry is long enough. The hunt for a new PT continues, and now it is paired with the hunt for an occupational therapist as well.  But we are not complaining. For the first time in a very long time, we consider Haley a very lucky girl.

An ode to bacon was promised. still working on it…

By the way, in case anyone remembers, it was excatly two years ago today,  March 5th 2007, when Haley’s chemo started.