Phoebe is 3!!

We celebrated Phoebe's 3rd birthday last week with root beer floats and a cake!  Our little Phoebe is three already....and what an interesting and life-changing three years we've had with her.  We're so happy Grandma (Greg's mom) could be here for her birthday.  Grandma left that day after helping us out for a week while Eden and I visited family in Clemson.  We squeezed in a quick trip to Temple Square before she left.

I thought I'd give y'all an update on what Phoebe is up to lately.  Slow and steady would descibe her progress over the past year.  She visits her physical, occupational and speech therapists regularly and checks in with her neurologist, geneticist, ophthamologist, developmental pediatrician and audiologists twice a year.  No diagnosis can yet describe the collection of neurological abnormalitles she has, but we have a better handle on the big picture and what works for her.  She remains seizure-free on medication (21 months and counting)!  

She saw her geneticist today.  As follow-up, she'll have a combined overnight sleep-study/EEG to see if she has sleep apnea (we've wondered about this for a while) and a micro-array, the most comprehensive detailed genetic study that currently exists.  I wanted this study done 2 years ago, but her geneticist wanted to try more conservative paths first.  Nothing has come up abnormal yet so we'll see what the micro-array tells us.  We are at peace if we never know what's caused her issues, but I suspect she does have a minor spontaneous genetic mutation that has not been discovered yet (does not have a name).  There currently is a lot of focus in the genetics world on Rett & Angelman's Syndromes.  Researchers are discovering alternate forms of the traditional MECP3 mutation which I wonder if her case may fall into.  You may be asleep by now - sorry!  I find this fascinating!     

In her therapies, we're working on walking, going up/down stairs, eating independently, accepting textured food, playing functionally, decreasing her stimming, choice-making with vocalizing, learning cause and effect and communicating.  She's showing improvement in all these goals and has mastered stair-climbing!  We're getting her a recordable switch, battery interruptor and some switch toys for her birthday so she can operate her own music and adapted toys.  Her favorite things in life right now are music, her baby sister and her Daddy!   

She has good days and bad days - this summer has been a real mix.  Lately she has been doing very well and many friends and neighbors have commented how much she has progressed.  We thank the Lord for her progress and joy.  We celebrate all her accomplishments.  Just watching her roll down the sidewalk on her scooter tonight gave Greg and I huge smiles.  Seeing her sense of humor emerge is a highlight of my day.  Any words of encouragement or acts of kindness you've given on her behalf have been so uplifting and heart-warming.  We know every child is a gift from the Lord and love hearing from those whose hearts Phoebe has touched in a special way.     

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Posted by Anonymous

I wish you could mail her to me so we could hang out for a few days.
<3
That's so great that she's progressing! I knew she would! Every time I saw her she was impressing me with something new.

mariss

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