Friday, October 5, 2012

Need a Little Help From My Friends…

OK, a couple of things I need your help with.


First is that our Precious Princess Chrissie’s 7th birthday would have been is this Monday, October 8.  While Chrissie is dancing with Jesus, we’re sure missing her on this earth.  We always will. 


In memory of Chrissie’s 7th birthday, we’ll be hosting a virtual birthday benefit.  This is something new for us, but I believe God is in the process of stringing the details together.  While we originally hoped to host a benefit in “real life”, I don’t think God had that in mind for this year.  He has something bigger and greater with more eternal impact than my original idea.  He’s just good at planning things like that! :-)


So, I would love for y’all to pray for this virtual benefit—that God would pour His blessing upon it.  Be sure to check back Monday for details because we’re going to need YOUR help to spread the news and help us celebrate the life of our Serbian Sensation!


OK, the second thing I’d love your help with is in regards to Selah.  We met with her neurologist yesterday.  He recommended we try Vyvanse (and ADHD medication) for Selah during the day to help her brain regulate.  Well, today we tried this, and, yes, after just one dose, we’re afraid to ever give her another one!!!  It’s made her even crazier than her normal!!! 


There truly are not words to even begin to describe what Selah’s day looks like.  I want to help her so badly, as I know she doesn’t want to be so out of control.  She actually tells us (in a screaming and crying voice), “Oh, NO, no, no, no, no, no!!!”, followed by a ginormous meltdown, which means she’s not happy about whatever choice she just made, but for some neurological reason, she was unable to control herself. 


Selah is a delightful girl who is such a tremendous blessing to our family.  Every single doctor and specialist who has ever witnessed her in action (in their office) is overwhelmed with how we’re making it through each day.  They say things like, “Is she always like this?”  Or “Is this what she does often?” Or “How are you surviving?” Or “She sure is a miracle, but someone needs to figure out how to help this child.”  Or “Wow, you’re a super saint.  I don’t know how you do it!”


OK, those are all not things we need to hear.  What we need is medical help for Selah so that she is happy and content, and we are able to make it through each day more easily.  I believe wholeheartedly that ALL children are a blessing, ALL are precious in His sight.  I do not mean to convey in any way that I don’t feel that way when I’m asking for help for Selah.  It’s the same concept as getting an antibiotic when your child has a bacterial infection.  Or pain medicine after a surgery.  Selah needs medication to help her feel and act more “normal”.  And I mean that in a good way.


The problem is that there’s no case study of a child like Selah.  There’s no research to examine.  There’s no book to open to give the answers.  Selah, for us as her family as well as for medical professionals, is a new case, an original case, a God case.  What a living miracle this girl is!!!


So, Selah’s neurologist told us that ADHD meds would either make Selah “better or worse”, and we’d know really quickly.  This was his first guess at figuring out how her brain works.  He said the next step would be to try Risperdal, a neurotropic medication, but he’s never used it in a child as young as Selah.


My plea for help from y’all is to spread Selah’s story and see if you can find someone, anyone, with a child—or who even knows OF a child-- with Selah’s diagnoses and/or Selah’s symptoms (sleep disorder with daytime “craziness” (as everyone refers to it)—meaning her brain can’t regulate independently and her behavior looks similar to what you might find in the crankiest child you’ve ever been around multiplied by 100,000, a child who bangs her head a lot and cries and screams a lot, melting down countless times per day, yet she’s a delightful little blessing from God who can have “normal” moments.


If we can find another child like Selah whose parents have found success with medications and/or with other methods, we would have a wealth of helpful info to go by!!!  Please help us in our search!  Thank you so much!  You can contact me privately at BossYourHeart (at) gmail (dot) com or leave a comment on this post. 

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