Appointment Week

It was not easy to keep up this week.  Our house and my hobbies fell behind, but we did focus on health, therapy, and friends!  Really, that is all that matters anyway. 

Gabe recently had his first urodynamics study and kidney ultrasound, which will serve as baseline norms for him.  At this point both of those tests are showing appropriate results for an infant with Spina Bifida.
We were also glad to finally meet with the pediatric orthotist.  She was encouraging with her reactions and conversations regarding the strength and movement in Gabe's legs and feet.  Interestingly, she is the first to give a "defect level label" to Gabe's lesion based on his sensation.  The orthotist also spent a bit of time talking with us about therapy and things we will watch for in the future.  Although I have still been struggling with Gabe's AFOs she agreed with the prescription and encouraged us to use them during his nap times.  Basically, he will only wear them when he is not actively moving his ankles.  This will be less time than was originally recommended and I'm a little more okay with it.  A little. 

Our in home PT visited this week and felt like we were making good progress with the tightness in Gabe's upper body. 

Near the end of the week we had a visit from our Early On nurse who updated Gabe's IDA and found him to be meeting the expectations for his adjusted age.  More encouraging news.  We spent a bit of time talking about what services will look like for Gabe in the months and years to come.

Overall, the week brought many good answers and plenty more questions.

Baby Steps

Gabe has had his AFOs (ankle-foot orthoses) for about a month, however he wore them for the first time last night (hangs head sheepishly...).  Having these made is a bit like watching an artist work on a masterpiece.  The mess of the plaster, the cutting, the molding, the pushing, the cutting.  Then trying them on, adding more, cutting more, trying them on again.  It is quite an involved process, but we have complete confidence in the able hands who created these. I am certain they are the perfect fit for Gabe's chubby little legs. 

The purpose of this pair is to hold his ankle in a 20 degree flex in an attempt to keep the motion he currently has for pointing and flexing his toes.  I wasn't sure that I agreed completely with this prescription, nor was I overly excited to brace Gabe's feet which have good active motion.  However, we've agreed to try them for 6-8 hours each day while he is sleeping.   

Well, so far we've tried them for 30 mintues.  It's a start...right?!