Update on Gracie-Girl, and miscellaneous things…

90 daysWell, it’s been 90+ days since Gracie’s stem cell therapy. Nothing significant to report in behavioral changes… I think.  She’s been really happy, is in very good health, is doing much better in school this year, and has been very affectionate lately.  Last night I thought I was hearing voices, and it turns out Gracie was vocalizing.

Is it because of the stem cell therapy?  Or is it because of the cumulative effect of all the other interventions?   Who knows?

Amazing how word of Gracie’s stem cell therapy gets around.  Not something I really shared with my coworkers, yet one of them (with whom I rarely speak) asked me how Gracie responded to the stem cell therapy.  I was surprised she knew anything about it.

Foogoo sippy cups.  They suck, I’m sorry to say.  I couldn’t understand why Gracie didn’t like it, that is, until I tried to drink from it.  Taking a sip from it is like sucking a golf ball thru a garden hose.  Still thinking of tethering her sippy cups to the dining table, though.

Door slamming episodes have ceased, thankfully.  Another coworker of mine suggested putting strips of Poron along the insides of the door casing, the part that stops your door.  I kept placing strips and testing the door by slamming it shut myself, until I was satisfied Gracie will no longer be able to scare the bejeezus out of any visitors.  If slammed, the sound amounts to a moderate, dull thud.  Unfortunately, in my testing zeal, one of Gracie’s Pooh letters (that spell her name) above her bedroom door fell from its place and broke.  The broken pieces sit in her dresser, waiting for me to glue them back together.

Dr. Brian Udell agreed to reduce the number of medicines and supplements Gracie is taking, from 12 different medicines/supplements down to 6 now.  I still want to get Gracie off the Buspirone HCL and Risperidone, but Kristine isn’t too keen on that idea.  One thing at a time, I guess.

Kangen water, another thing we’re trying, in an attempt to improve Gracie’s overall well-being (and ours too!).  I got in touch with a former distributor of Kangen water machines, a very nice lady named Carol.  She generously provided the water at no cost to us for two months, so we could make an informed decision to purchase one of our own.  Speaking for myself, I have never enjoyed drinking water so much.  Thanks so much, Carol!  Now I just have to make the time to contact my seller and buy one.

Finally, the chromosomal microarray analysis, or the CMA, testing for disorders of childhood development.  Dr. Udell put is in touch with Lineagen, a company that performs CMA testing.  Lineagen handles everything, from performing the genetic analysis, ensuring coverage by your insurance company, providing the specimen collection and transportation kits, etc.  The costs are around $5,000, and Lineagen confirmed our insurance with cover these costs.  We received our kits this past week.  Specimen collection is slated for today.  The hope is that if Gracie has any sort of chromosomal defects, Gracie’s doctors can tailor her treatment to address specific needs.

About graciesautism

Father of Gracie, who is autistic, and her sister Gabrielle (who is a typical). Sharing our stories in Gracieland.
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2 Responses to Update on Gracie-Girl, and miscellaneous things…

  1. Katie Deaton says:

    Love reading these updates on Gracie. Glad to hear she is vocalizing! You’re such a dedicated father, Denny. She’s lucky to have you guys.

  2. Christy McDonell says:

    I imagine waiting for some type of “sign” is the hardest to do. Know that I’m rooting Gracie on to a happier and healthier life– as well as your while family. Always keeping you all in my thoughts a d prayers!
    Your high school Hunter ‘hood friend
    Christy

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