We had a HAPPY 4th of July!

Cicily and Sophie in their 4th of July outfits. Cicily's cousins made her shirt for her last year while she was in the hospital. Cis loves sitting in her purple chair and holding Sophie!

The last 2 years have been pretty bad 4th of July's. I was honestly getting nervous this year! In 2008 Cis was just barely home from the hospital, sporting her jaw distraction jewelry. The 4th was the first day of torture, when we started turning her screws. July 4th 2009 was the day after Cicily's heart stopped beating. We spent the day in the hospital's ICU, worried about the possible lasting effects of the previous day's episode (there were no long-term effects fortunately). Cicily had pneumonia and didn't come home for 2 weeks.
But July 4th 2010 was very lovely!! Cicily got to go to church, play with her sisters, have a barbeque at Grandma and Grandpa's house, and watch fireworks. The last 2 years made this 4th even better!

Difficult to Accept (a note from Mom)

Acceptance - it's the 7th and final stage of grief. I don't know that I've been through each of the infamous 7 stages in the past year and a half since we learned that Cicily had brain issues in addition to her craniofacial symptoms. And, I'm quite certain that I'll randomly travel back through the irritating 7 stages in the years to come. However, I have started to feel the first honest feelings of true acceptance.

Accepting that Cicily, due to the lack of white matter in her brain, is not improving in how signals are sent to parts of her body.

Accepting that her gross motor control is not improving and she will very likely need a wheelchair to get around (sadly you can't crawl everywhere).

Accepting that Cicily may never learn how to breathe without a trach. This one is much easier to take now for me after seeing how hellish her life could be without a trach. I also do think she could still learn to cough and swallow and breathe without a trach, but don't see it happening until she's a lot older.

Accepting that her brain may never solidify the correct pathways to obtain speech. I'm SO happy we taught her sign language and she uses it.

Accepting that eating via your mouth is over-rated. Cicily doesn't feel she's missing out by only getting to taste food, why should I care?

These and others are things I've begun to accept. Some days it's easier to do than others. Other days like when I read a report detailing how Cicily is not meeting any of her therapy goals, or when her big sister Maya asks if Cicily will ever talk like we do, or when Maya goes to a friends' house to play and I wonder how or if Cicily will ever do the same, or when I worry about how Cis will feel when her baby sister can start walking away from her.

-Ok, I'm back. I started writing this post a couple weeks ago and then started crying and didn't feel like finishing it. That's why I try to stay positive. It's much more fun to focus on good things in life instead of miring in the not so good things.

So I'm accepting that this is the way my Cicily was meant to live. She'll have a trach, g-tube, and wheelchair. But, she'll also continue to be happy and determined. Watching Cicily live her life and taking care of her with all her extras has taught me a billion and one things. I'm honored to be her Mom and to hopefully make her life a little more enjoyable.

animals, colors, and shapes - oh my!

Next time you see Cicily you'll have to ask her to demonstrate her vast knowledge for you. She's known animal names for a year or more now, but recently we just discovered she definitely knows all her colors and shapes. Around a year ago she could get the right color or shape about 50% of the time you asked her, but now she can identify them all and sign the correct sign for them. It's not something we've overtly "worked" on. Most of the adults in her life (mom, therapists, etc.) just point them out as she plays and she's officially picked them all up now.
As we've said before, Cicily's mental abilities seem to be right on track. It's nice to have her prove that every once in a while with things like this though.
Other smart things she's demonstrated lately - Cicily can tell you which emotion should go with which situation (ie. happy when you see Sophie). She also can identify some letters. She's also great at remembering books. She'll sign something that's going to happen on the next page when we're reading. If you recite a line from one of her books just randomly as you're playing with her, she'll get a knowing smile on her face and laugh.
It's nice in the midst of all the things she's not doing well to remember all that she can do!

Big Sister Cicily!

Introducing Cicily's new baby sister - Sophie
The first of MANY kisses for her little sister.

This is the first time Cicily got to meet her little Sophie. Cicily couldn't quite smile big enough to show how happy she was! She wanted to hold her immediately and hasn't stopped wanting to hold her since. Occasionally Cis will get to hold Sophie for over 20 minutes and finally she'll say she's done and want to go play.

Yesterday I was feeding Sophie on a chair and needed a blanket for her. Cicily was wanting to come see Sophie, so I tried to distract her and asked her to get Sophie's blanket for her. Cicily was quite happy that I had asked her to help. She crawled right over to the couch where the blanket was. On her way there she had to crawl over a pillow and toppled on her head. She lost her hearing aids and started crying (not sure if she got hurt or she was upset to be deterred from her task). She brought me her hearing aids so I could re-place them for her. Then she crawled right back over to the couch and got the blanket down. About 5 minutes after I had asked her for the blanket, Cicily held it up to me. She was beaming! She had succeeded in helping her baby sister and her Mommy. It was so sweet and took so much effort, I cried.

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.