yesterday we went to see dr. filloux (pronounced few) again at primary children's hospital for a follow up visit. i am always apprehensive about going to these appointments for fear that something may be worse, never in hopes that something will have improved. i never think "wow, this is may be last time i will be here. she's all better!". i am not sure if the pessimist in me or the realist. either way, today things were better and worse.
grets was her adorable charming self today and i think dr. filloux officially fell in love with her and its high time if i do say so myself. after about an hour of examinations dr. filloux was still as baffled about her condition as he was when we walked in the door. although, greta is making leaps and bounds cognitively (talking, problem solving, social) she still is significantly developmentally delayed with her gross motor skills and has stunningly low muscle tone..... she will give shawn johnson a run for her money with her flexibility, not sure if anyone should bend the way our gigi does. her ocular motor apraxia is still in full swing and as we suspected and will probably not get better over time. the good news is that her ataxia (shaking) has lessened and she seems to be a little bit more in control with her movements.
the bad news is that when testing her reflexes (you know the ole' knee taps?) greta had none or at least all or most of them were completely diminished. when greta was in last, at 7 months, and also at 8 weeks, her reflexes were fine and dandy and now at 11 months they are gone. so what does that mean? no one knows. dr. filloux told us her was very concerned and once again was baffled by this finding.
so we are set for more testing. more blood labs were done on greta yesterday and once again we were faced with the horrid sight of getting blood from greta's scalp, its a long and i would assume painful process. next friday we are scheduled for another MRI but this time it will be an MRI with Spectroscopy which greta will have to be under general anesthesia for again. dr. filloux also said he will be contacting some of his colleagues there that specialize in neuro-muscular disorders and that grets will most likely have to have some sort of electrical nerve testing done which is a very "uncomfortable" procedure as he put it.
long story short..... no answers and more tests to be run. i guess i am okay with it, i don't think i really have a choice. regardless, i am just glad that greta is here with us. i adore her. she is wonderful and amazing and every other word that describes love. grets is a tough cookie and runs through all of these tests and procedures like a seasoned pro (wait she is). i will update when i know more.
p.s. i am so glad that i get to go out of town with these chickie-babes this weekend. this girls only weekend only is much needed and is guaranteed for some laughter.
nova's 4 life!
3 comments:
Sometimes I wonder why it's "wrong" to be different...really! So, she's super flexible, doesn't have reflexes, will probably never be this or that. But she's a beautiful, happy, loved child, she's an incredible addition to your family, she's a gift from God. So what if she's not "normal" what is normal anyway? Give her my lovies!
Sweet Gretsie continues to be our mystery child. But it's no mystery why she has stolen all of our hearts! Can't wait for my Friday with her! XOXOXO
You are such a strong person Kennan! I completely admire you! I love hanging out with you and your family. You can come over anytime to hang out with me before I get brave enough to take Mylee out into the world. So, come over and let's hang out!!
Post a Comment