Sienna is having complicaitons after having the surgery to have her bladder augmented in March 2014. Since the surgery Sienna now has anal and vaginal stenosis. We are going to try again, with a newer procedure, that uses skin from her inner cheeck to create a vagina. This way Sienna will be able to have the experience other girls/women are able to have. We deeply hope this improves the quality of her life. Despite the other surgeries having been a fail, we have renewed hope that this will be the surgery that works for her.
Sienna is eligible to start pre-school through the Peoria Unified School district, and get some socialization, and improve her skills in the classroom, so that hopefullly we can by-pass needing any special intervention. Sienna is cognitively intact, and functions like most 3 year olds. With the exception of having a Gtube for night time feedings, a mitrofanoff that we cath every 4 hours, and a colosotmy. Due to her condition, Sienna have a neurogrenic bowel and bladder, and will not have control over either. Because medical technology is so advanced, our little mama gets to have "social continence" and not be confined to a diaper or training pants. She is able to void now through a catheter that we insert in her belly button, and into her "poop bag" (as we like to call it at home.)
One day, we hope to get rid of the gtube and have her eating 100% of her intake. Until then, we will keep trucking along, taking one day at a time.
None of this has been easy, but with the help of our nursing agency, Ryan House and my parents/grandma, we have been able to make ends meet. Unforunately there are no services available to assist when you meet middle income requirements. I file for FMLA, and give notice on dates that we need off for appointments and other incidences of incapacity. I have applied for programs, but get turned down due to our income. I feel there is no way to truly get caught up due to frequent hospital stays and emergency room visits.
Lauren and Sienna.
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