We still have not beaten our record nine days at home but so far all is going well. Amber is enjoying being home, playing with the girls but most of all being carried. I can't stop holding her every chance I get but I have to wrestle her from my mom or mother-in-law because they like to hold her too. Not to mention Kyana and Taylor are always asking to hold her too.
She eats via g-tube 75 cc every 3 hours which means a little over 2 oz every 3 hrs. She gets some type of medicine each time she eats too (Lasix, Diuril, Sodium Chloride, Multivitamin, Prevacid and Simenthicone - meds to release fluid, replenish electrolytes and prevent gas/acid). I take her for a little sun out in the backyard and for her doctors’ appointments. Her first set of vaccines are scheduled for the end of July.
We have to follow up with Neurology, Geneticist, Ear/Nose/Throat specialist, Endocrinologist, Cardiologist, regular Pediatrician, Gastro Intestinal specialist and Opthalmologist. Then physical therapy and oral therapy… I have to take a breath here, oh wait that would be it :-). The Cardiac Surgeon has signed off on her which is one less person I need to follow up with unless her cardiologist feels we need to for some reason. Well as promised I hope you enjoyed the updated pictures.
She eats via g-tube 75 cc every 3 hours which means a little over 2 oz every 3 hrs. She gets some type of medicine each time she eats too (Lasix, Diuril, Sodium Chloride, Multivitamin, Prevacid and Simenthicone - meds to release fluid, replenish electrolytes and prevent gas/acid). I take her for a little sun out in the backyard and for her doctors’ appointments. Her first set of vaccines are scheduled for the end of July.
We have to follow up with Neurology, Geneticist, Ear/Nose/Throat specialist, Endocrinologist, Cardiologist, regular Pediatrician, Gastro Intestinal specialist and Opthalmologist. Then physical therapy and oral therapy… I have to take a breath here, oh wait that would be it :-). The Cardiac Surgeon has signed off on her which is one less person I need to follow up with unless her cardiologist feels we need to for some reason. Well as promised I hope you enjoyed the updated pictures.
The girls look great! They seem so happy together! Glad to know you are busy at home. That is a good thing. When Amber has on her glasses, she really looks like Kyana! Keep having fun!
ReplyDelete