Tuesday, November 8, 2011


We have finally finished all the assessments for Scarlett's therapy services.  She has been evaluated at every hospital by each doctor, plus by each of the different services, both public and private, that we have had involved in her care.  They do regular assessments to see how she has changed and to make new goals for her continued treatment.  Now that she is regularly seeing a physical therapist and an occupational therapist, they did their own in-depth evaluations and have set new goals for Scarlett (and, really, for us).

Physically, Scarlett is getting stronger and stronger every day.  She is still on the verge of rolling from her stomach to her back, can hold a crawling position with some slight support and can hold her weight on her legs.  She will reach for toys she wants and is beginning to use both hands and lift above her head.  She is so eager to be independent, we can hardly keep her contained any more - normal for other babies, but new for us!

Her fine motor skills have greatly improved, too.  She can get anything she can reach into her mouth.  She chews on graham crackers - yea!!!  She is beginning to pass things from one had to the other - a long-awaited improvement - and is using her left hand much more than she used to.  Feeding...well, that's a whole post in itself (Chris is working on it!)

What was really interesting when we saw all the evaluations together was that her skills are all circling around the same age range - 5-7 months, usually.  Yes, feeding is much lower, and some are higher, but her development is hovering around the same point.  If we subtract all the time she spent so sick and in the hospital - basically, January through July - from her 12 month age, we get...5 months!  It is a good sign that no single skill (besides feeding) is much more delayed than any other.  Her doctors and therapists are all hoping that as she continues to grow, her skills will continue to develop equally so that, eventually, she may not be so far delayed at all (the difference between a 3 year old and a 3 years-and-6-months old is not as vastly different as infant months).  This is optimistic, so say the least, but we have no reason to think otherwise right now.

One of the challenges we have encountered is accurate cognitive testing for a baby with physical, hearing and vision delays.  The routine tests for cognitive ability require her to do things that her muscles aren't ready to do, but that doesn't mean doesn't understand.  For instance, the test required her to have something in her right hand, and grab the second thing with her left, but her left hand is much weaker.  So, since she didn't grab with he left hand, she didn't get credit, so she "scored" cognitively younger.  

I don't care if she is cognitively delayed; we are prepared to help her with whatever challenges she may have.  My problem comes with assuming she is cognitively delayed when the test is not accurate.  It's probably a teacher thing - I hate giving tests to my students that don't test their actual skills (especially in kindergarten, where most tests I am forced to administer really test their listening and sitting-still skills).  I don't want her labeled as "cognitively impaired" unless she actually is.  

I don't think we will be able to get a clear answer on her cognitive capacities until she is older and can communicate what she sees, hears and understands.  Because her brain is "hard-wired" differently than any other brain, there is no real way to know what her brain is getting from the outside world.  Even if her eyes work correctly, she may not "see" correctly, and likewise, even if we improve her hearing with aids, her brain may not process auditory input the same way we might expect.

It's a waiting game that I am impatiently playing.  Every day, I am looking for a sign that we are moving into a new stage or that she is learning something new.  It is crazy-making, especially when combined with my constant vigilance for neurological issues that could signal tumor growth, but I can't stop myself from wanting more for her.  It is like I have had a 5-7 month old baby for months, and I am so eager to see what comes next.  But, like everything else, it will happen on Scarlett-time, not mommy-time.


heather said...

as i've read your blog, i've often thought about how hard this aspect of your lives must be. that's the way it goes for us parents, i think: we can't wait for our kids to do the next big thing. sometimes, when i find myself looking ahead instead of enjoying the right now, i try to remind myself that our babies will someday be done with all of the baby stuff. and then we'll miss getting to hold them so close. looking into their eyes and knowing we're their entire universe. hang in there, mama. know that we're all out here cheering for scarlett and all the amazing things that she's accomplished already.

Abs said...

I know exactly how you feel about the cognitive development. DS has severe hypertonia and can't really move much. However, we've learned to use his abilities to test him. He's not going to be able to get the ball if we ask him to get the ball because he can't move. But if we put a ball in one hand and a book in the other and ask him to reach for the ball and he does it counts.
Or if he's sitting(assisted)playing with a ball popper or another electronic toy we'll say press it and he will do it.
You just have to figure out how to manipulate the test questions to her skill level. Once you manage to do this, you'll be blown away. I'm so shocked at how much DS knows because we've always just assumed he doesn't understand

evsmarie said...

I missed this post before... sorry for the late comment/question. :-) As a vision teacher, I was just wondering about something that you said (and I can't recall having read about it in a different post) - when you mentioned her possible vision/future vision and not being able to process... are doctors bringing up the potential of Cortical Vision Impairment? It certainly isn't something that I'm asking in order to concern you, to have you bring up to your doctors or have to do a Google search - I'm just wondering because of your wording and because the teacher in me is curious!

Scarlett is such a beautiful little lady and you two are doing a TERRIFIC job! I am willing to bet that you are a favorite among the therapists/teachers. We may say that we don't have favorites (ah hem), but let's be real. :-)