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 are 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

Laughing, again

Mimi, Lin and Cianna are at the Ronald McDonald House near the Upstate Galisano Children's Hospital.  The other couples staying there have preemie infants in NICU, and there's a woman from Guam who is there with her son, daughter-in-law and grandchildren (ages 1.5 and 2.5).  Her son was in a car accident and the daughter-in-law called and said they were in Syracuse and that she had to go in for an emergency c-section.  So the woman had 4-hours to get from Guam to N.Y.  Both the son and d.i.l. are out, but now their baby (2 lbs) in in the NICU. 

I was on the phone with Mimi tonight and heard this screech and she said, "You hear that?  That's Christianna."  I thought it was an unhappy screech, but she's been laughing and enjoying watching the above mentioned grandkids run around.

And rocking on lions.

The gang plan on leaving tomorrow morning, stopping in Akron, OH and being HOME by Saturday!!!

OK I'm Going To Get The Car!!

So we will stay at the Ronald McDonald house for two nights then leave town on Fri. We will spend the night in Akron, Ohio, then home on Sat. to give me plenty of time to buy all types of long awaited chocolate. Of all the Lents I've had before, why did he place on my heart to give up chocolate this one??? It sure has been great focusing a lot of time on/with God! Thanks for all of the prayers.

Finally!!

Blessed be God!! We are checking out today!!! According to the DR.s no GTUBE more to come.

Prune juice and milk? :-P

So, Lin had pretty much accepted that Christianna was going to have to get a g-tube.

But then Christianna started eating again.  She's had about 17.5 oz today and is currently drinking a bottle of milk and prune juice.  (oh, yuck!) 

This morning, Lin gave Cianna her meds via a syringe (well, 3) and a crushed pill in grape juice.

The docs are now thinking that they can hold off on getting the G-tube.

Yay!

(Tonight's movie choices are: Patch Adams, 10 Things I Hate About You, August Rush or Emma)
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Now she's eating Lin's vanilla pudding.