My littlest love at 9 months!

Anna Kate is 9 months now.  How time flies!  She is so precious and adorable!

In November and December we had appointments with ophthalmology (eye doctors) and neurology (brain and nervous system), an MRI of the brain, and follow ups with our pediatrician for some developmental delays. 

 

The ophthalmologist that we saw specializes in genetic disorders of the eye (which is what Ocular Albinism is).  He was really nice and thorough which may explain why we had to wait forever...  Moving on: he didn't find a typical presentation of Albinism and questions that diagnosis.  So, we'll be going to his research office in Bethesda, MD in March for a specialized (non-invasive) test to confirm this diagnosis.  If she does have OA, then he said it's "subtle and mild". 

This being said, for the sake of being thorough, our pediatrician ordered an MRI and a consult with Neurology.  The MRI was normal.

 

Our neurologist was really great too.  Other than the nystagmus (wobbly eyes), she found that Anna has "mild hypotonia" which is low muscle tone.  This explains why we're finding that she has some delays in her motor skills.  Hypotonia can be associated with a lot disorders or can be non-specific.  It's not related to the Albinism and with an otherwise normal neuro exam and normal MRI, there's nothing to attribute it to.  So, she should meet her developmental milestones, just at a delayed schedule.  And she may fatigue more easily, e.g. if she writing a lot, her hand may fatigue more quickly.  She did recommend Physical Therapy and reported that building up her muscle strength will help her compensate for the poor muscle tone.

I gave up trying to get her to sit up.  She would get so excited and fall over!

So as of this week, we have finally completed all the steps to setting up Physical Therapy.  I am choosing not to pursue Vision Therapy at this time for a few reasons.  1) Early Intervention doesn't have a Vision Therapist on staff, 2) her needs for Vision Impairment at this time are minimal, and 3) her needs for PT are greater.  We will reassess the need for Vision Therapy after she makes progress in PT and becomes more mobile.

She loves her bare toes! 
When she's wearing socks, she doesn't have as much interest in these little guys.

Here are the details of the Early Intervention Assessment which was based on 2 hours of playing with her and listening to my terrible historical accounts of what she can/can't do...

 

Receptive Language: 7 months

Expressive Language: 8-9 mos (verbal), 7-8 mos (gestures)

Blowing a raspberry.  She just started saying "ma-ma". 

Adaptive/Self-Help: 7-9 mos

Social/Emotional: 8-9 mos

Cognitive: 9 mos (Yay!)

Gross Motor: 5-6 mos

Fine Motor: 7-8 mos

So we have a plan to start PT within the month every other week.



Note my foot in the pic.  I had to sit close to her to catch her when she tipped over.  Unfortunately, I missed her since she fell away from me after this pic and she bonked her head.  Photo session over.

So at our 4 month check-up, we found the Nystagmus (and Ocular Albinism).

At our 6 month check-up, we found a Developmental Delay (and Hypotonia).

So, to keep things interesting, at our 9 month check-up last week, she had Poor Weight Gain.

 

She was at the 25th percentile at one point, and is now at the 8th %ile.  Her current weight is 15 lb, 4 oz.  Her length is tracking just fine along the 50th %ile curve at 27.5 inches.  (I take reassurance in that evidence that she is growing.)  But I've been tasked with improving the fat and protein content of her intake.  So far she loves canned chicken, avocado, Pastor Ray's famous Beef Brisket, and my homemade mac-n-cheese which the rest of kids don't like.  This would be a good time to get her hooked on cheese grits!  Wonder if I can snag any leftover brisket from the church's lunch yesterday?  You know, for Anna, of course.

 

I want to give a shout-out to my hubbie for my new camera that he bought me for Christmas.  It's a Canon SD1, which is a light-weight digital SLR.  I've been really pleased with it so far!  So fun taking pictures of my sweet babies with it!