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.

Cicily's 5 focus words

bye
bus
book
baby
mom

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!!

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.

stroller for sale

Last year we bought this stroller: http://www.babytrend.com/sit_n_stand_dx/SS74740.html It's a stroller with a seat for a small child and a sitting platform for a larger child. Our thinking was that by the time Cicily had a smaller sibling this year, she'd be steady enough to sit on the platform of this stroller. Unfortunately she is not more steady and still cannot walk on her own. So, I asked a couple of my friends who have also had non-walkers and a baby, and they said a small double jogging stroller is a must! For us to get into doctors offices, therapy offices, etc. without making more of a commotion than we usually do, we'd like to buy one of these: http://www.philandteds.com/upload/index.php/push/46 A Phil and Ted's double stroller that Cis could sit in for years to come. (Never, ever thought I'd spend $500 on a stroller!)

If any of you out there know of someone who would like a Sit and Stand stroller, we'd love to sell them ours! It's been used a total of 3 times, so it's pretty much new. Thanks

Straight hair and a note

We straightened Cicily's hair just for fun yesterday. She thought it was funny when she looked in the mirror and was very excited to show off her straight hair to Daddy when he came home.

Have I mentioned how much Cicily loves school? She has a fabulous teacher, nurse and therapists. The kids in her class all get excited when I drop her off. Her friend Emma comes over to talk to her and a couple of the boys in her class get her wagon ready for her to sit in. She loves the attention! On Thursday she had occupational therapy and her therapist sent the following progress note home about their session: "Great working - except her social nosiness keeps getting in her way - she is just too cute!" That's pretty much Cicily in a nutshell - social, nosy and very cute!

New Teeth

I told Cicily to show me her teeth so I could get a picture of them. I'd say she obeyed quite nicely!

Here are some pictures of Cicily's new front teeth. (Compare these 2 pics with the ones from Cicily's first day of school to see the teeth difference.) Dr. Carter put crowns on her 4 top front teeth last Friday in surgery. They look so good. We were expecting more "chicklet-like" teeth, and these really look natural. Once again, we got a great doctor who did a great job with our girl! Sadly she still seems sensitive to cold foods, but we'll see how that ends up.

Baby Love

Cicily has been LOVING babies lately!! Fortunately for her she has two new baby cousins, Liliana and Monique. Here are two pictures of Cicily adoring Monique. They both came to visit over Christmas time and Cicily wanted to hold them all the time. None of the hold for 1 minute and I'm done either, she would sit and hold them for a long time just looking at them and smiling.

I think she must recognize a fellow pure soul when she's around them. We're glad she's getting some good practice being a big sister. Come June, Cicily will get all the baby girl snuggles she will ever want, and she's quite excited about it!