Another busy, but semi-productive day in Andi Bean land. First, we went for our formality appt. with the ENT Dr. to get her hearing aid referral. For us, a total waste of time and a stupid Oregon law, as all kids under 18 have to see an ENT Dr. and have to get that referral to get hearing aids. But, once he met with us, we were in/out, and on our way back home for our next appt. The community nurse from the county health dept. came by to meet us. She evaluates us and acts as a sort of social worker that puts us in touch with different services from which we might benefit. She gave me the number of two additional places to call, one of which, if we qualify, might be willing to help us pay for Andi's respite care. It's yet another call, another waiting game of getting in the system, and another evalation, I'm sure. More hoops, but one that might be worth being a circus performer for, if we qualify. We received a call back from Developmental Disabilities Service and have someone coming out at the end of November to evaluate us, our situation, and see if we qualify for assistance with her care. This morning, we also ran into the pediatric social worker at Kaiser we met with yesterday, and she said a referral has been submitted for home health nurse. I guess I'm awaiting another phone call. The ENT Dr. said we will be referred back to OHSU for the hearing aid, which is different from where we were told we'd get the hearing aids from. Is your head spinning? I know mine is!?! Trying to keep all these people, phone numbers, who does what, and who is helping us with what is a big ol' chore. I need to spend a rainy Saturday afternoon organizing all this, in all my copious free time that is... But, I think one way or other, help is soon on its way! I still have about four people to call, including the friend of a friend recent graduate from OHSU...
The nurse today said we need to work on balancing Andi's time on each side. Andi spends most of her time on her back or on her right side. Because of the g-tube, where the stomach is and the direction it processes food, Andi spends a majority on time on her right side, especially when feeding. When she lays on her left, the g-tube leaks moreso. Leakage means less calories for the Bean. Obviously, less calories means an underweight Bean. So, we need to work on getting Andi to spend time on both sides -- so she doesn't favor one side over the other, and we need to work on getting her to spend time on her back - concentrating straight ahead of her, centering herself. When I lay her in her crib - with the mobile above her head, she rolls to one side. Oh yeah, she's starting to roll -- afterall, Butterball's roll. So, we have some additional things to work on. She also suggested I make sure that Andi is medically cleared for tummy time. Considering her recovery from heart surgery, and the g-tube, she suggested I make sure it's okay that she starts working on it. She's also not yet strong enough for the bumbo chair we bought, because she can't yet hold her head on her own. So, I've sent her Dr. an email making sure tummy time is okay for the bean, and also get the ok for us to finally go to the beach. I've been promising Andi a trip to the beach since her first surgery, and we haven't been out of town since early this year, so I think we're due for a road trip and a change of scenery.
Post a Comment