Wednesday, April 25, 2012

To our Golisano family :( We miss Y'all!!

Been thinking about y'all up north there. :( Miss you guys, not the events surrounding our meeting though. LOTS of doctor visits, and therapies, trying to set up Medicaid coverage for her, and SSI disability $$. (We'll see what they'll give her) 

I quit the day job since I've been home and  it feels like we am doing 1-2 appts. every weekday!!   I think I'd go crazy if I was supposed to be working on top of that. Trying different ways to give her the meds as she does NOT, NOTNOTNOT like the syringe way. Got the Keppra in pill (yes huge pills and bitter) form and am currently getting all pills in for the last two days in peanut butter.  It is scary adding it to her bottle as, "What if she doesn't drink it all?" crosses my mind. So I probably always put it in too little as I don't want to have to syringe the rest in. SOOOOOOOOOOOO yah....

She is sooooooooooo happy to be home - the first night we were home we ate at Fazoli's with brother, Joey, and Dad, Joe too, Well she kept getting entertained by her brother and was shrieking with joy quite loudly!

Eating is still an issue - we are coming in way under appropriate levels (20oz a day give or take). However the swallow study yesterday (very cool to watch on video by the way) showed partial penetration on thin liquids so we are now thickening up her fluids a bit with the thickener and other random food items. We won't get to see the Neuro. Genetic doctor, until July 13th. however I believe we will be able to get into the feeding clinic in June for an evaluation.  Until then, I get to investigate what to do to rehab a child who has suffered... to eat again? (I should e-mail Melissa)

We'll see where God takes us next on this adventure with Cianna.  If we need to do a G-tube, we will, though you can bet I'm going to try my darnedest this month to get more in daily, hopefully with time and less appts. every day.  (After all, it took her 2 weeks to eat normally again after the flu three months ago.)

Anyway I hope all is well in your personal lives as I am sure there are new patients with bad crap happening in theirs which makes work emotionally challenging for you.
Take care,
    
    Lin Devine

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