Thursday, May 27, 2010

Anyone need a little suction?

Cicily has been very interested in playing with her suction machine lately. She started out suctioning her doll that has a trach. Then she moved on to suctioning her dog Lucy. Now she likes suctioning Daddy, Maya or whoever will let her! She also likes to hold on to the tubing and help us when we're suctioning her. I remember when she was a baby hoping that she'd never have a trach long enough to suction herself. But honestly now I think it's really cute. I love that her life is full of things most people never have a chance to learn about and that she can make pretty much anything a fun game.

Wednesday, May 12, 2010

Cicily's 5 focus words


Something Cicily's speech therapist said a few weeks ago got me thinking. Cis' brain has a hard time getting all those complex mouth muscles to work in just the right order to say words. (And not even to mention the repaired cleft palate, trach, small jaw, open bite, and hearing loss - sometimes speech for this girl seems impossible! Thank goodness she signs!!) Sometimes Cicily will say a near-perfect version of a word and we'll get all excited and ask her to say it again and she'll smile huge and try and nothing much comes out. So, I asked her speech therapist what she thought about maybe just focusing on getting Cicily to say (verbally) 5 words at a time. That way maybe her brain and muscles could get some "memory" going on and Cicily could be successful with at least 5 words. Her therapist thought it was a good idea, so we came up with 5 words that started with similar sounds and were important to Cicily. For the next few months Cis will be working on these 5 words: bus, bye, book, baby, mom.
So, next time you see Cicily, try to get her to SAY bus, or say bye to you! She always gets really excited to try!!

Monday, May 3, 2010

Riding the Bus!

Cicily FINALLY got to ride the bus to school today. She's been very excited all weekend to ride in her "bus chair" on the bus. We've been attempting to get her a stroller/wheelchair that is bus-safe since October. She can't sit on a bus seat alone because she's not steady enough, so she needs a chair that can tie down safely to the bus. The chair is medical equipment, so we've tried to order it through her medical supply company that supplies all her trach stuff. Due to an incredibly incompetent person on staff, the order was lost for a few months, and since January it's been approved by our private insurance but fought over by both of her government insurance companies. (I LOVE that we have those government run insurances for her, I really do, but why does everything go horribly wrong when the government gets involved??) So finally a couple weeks ago, Cicily's lovely teacher at school said someone donated this nice chair Cis could use until her insurance companies can finally decide to help a little girl like they should instead of arguing over who's responsible. (If I sound a little annoyed, it's because after I've spent over 60 or so hours on the phone over the last 4 months, Cicily still doesn't have what she needs.) But anyway, thanks to a great family for donating Cicily's loaner chair and to Cis' teacher Miss Marli for matching Cicily up with it!!!
On the bus this morning. After boarding the bus, Cis got a little nervous. I told her to smile for a picture, and she tried, but all she could muster were funny grimaces like this!

Cicily's all tied down and set to go. This is her wonderful nurse Tami that takes care of her at school. She helped Cicily to be happy about her first trip on the bus.
When Cicily came home from school Maya, Lucy and I were waiting outside for her. She saw us through the window and smiled huge and waved. Then as we were eating lunch, we were talking about her riding the bus and she signed "phone" and "grandma". She wanted to call her Grandma and tell her about her bus ride.