Monday, April 20, 2009


"Yeah" - It's Cicily's favorite word. It's the only word she consistently says all the time, and never signs. She loves to say, "yeah". Whenever she's asked if she wants to play with something, go somewhere, she usually answers with a, "yeah". If she's asked if she wants some food, most of the time there is an odd absence of her standard happy, "yeah" and we have to say, "you can sign 'no' Cis".
Chris commented a few weeks ago that Cicily's yeah is a great demonstration of her personality. Most 2 year olds can't get enough of the word no, and here's our sweetie living it up being a "yeah" girl. She's pretty much interested in trying anything new and she's happy almost all the time (exceptions are when she's in pain, when she's told no, and when Maya cries).
I recently pulled out all of Maya's old clothes that will fit Cicily for the coming spring, summer, and fall. It was a difficult thing for me to see all the cute outfits Maya wore at 2 years old and remember how when she wore these clothes she could run, speak in paragrahps, count to 10 in English and Spanish, knew what all the letters said, etc. I had to say a prayer because I wanted my sad, bitter feelings knowing those things may be a few years off for Cicily to go away. I did feel better and realized that both Maya and Cicily will get to the same destination, they're just on different paths. And I'm happy to have 2 girls on such different paths. I told Chris about it when he came home and he reminded me of what a friend also told me recently. -Cicily is an extremely happy girl. She doesn't care much about all she can't do yet. She tries so hard, and does SO well with what she has. When all is said and done, what more does a parent want than to know that their children are happy? I love our happy girl that makes so many people happy and is always ready with a willing, "yeah".

Monday, April 13, 2009

Outlined path to living trach-free

Problem #1. A jaw that is too small
Fix - 3 month jaw distraction surgery

2. A granuloma grows in the trachea
Fix - surgery to excise the granuloma

3. Granuloma surgery is cancelled numerous times
Fix -reschedule and be patient

4. Infection inhibits granuloma surgery from being completed
Fix - reschedule, wait, antibiotics like crazy

5. A hole develops in trachea from granuloma surgery
Fix - wait 10-14 days for hole to heal

*new 6. Contracts pneumonia 10 days post-op
Fix - hospital stay with IV antibiotics, home antibiotics for 2 weeks and then cap again
Seriously, now it just feels like a comedy of errors or something like that! I am feeling more patient now though.

So Cicily's tracheal scar tissue removal surgery went well. Dr. Mancuso excised all the granuloma and stitched her little neck back up. Then she went to the PICU and her trach was capped for 24 hours. During the 24 hours of capping she was breathing EXCELLENTLY!!! Her oxygen saturations were completely normal while she was sleeping, eating, playing, everything.

There was a minor snag in the plan however. There is a leak in Cicily's trachea from surgery. When her trach was capped and there was more pressure to get air from her lungs to her nose/mouth, the air would leak out of the hole in her trachea and fill up her cheeks. She looked like a swollen balloon! So we took off the cap, swelling went down and Cicily came home from the hospital. Now we have to wait 10-14 days to re-cap and make sure she doesn't become a balloon again, and then we can pull the trach.

Mom's note: I'm very excited about Cicily breathing so well with her trach plugged. It's more than I expected from her at 2 years old. I can't describe the thrilling feeling knowing she could start to cry loudly, talk better, splash in the bathtub, not have to cough all the time. . . .
I'm also freaked out about not being able to suction the stuff she coughs up, hearing her breath differently, and other things. I don't know how to describe what a mixture of emotions it is.
When Cicily was in the hospital with her trach plugged, we made plans Tuesday night to pull out her trach Wed morning. Chris stayed with her Tues night and I went home to sleep. I'm in bed, almost out when the phone rings and Chris tells me it's not going to happen Wed. morning. I was tired, angry, sad. We have a plan in place now for decannulation and I feel good about it. I do feel like it will happen soon most of the time. Sometimes though, I feel like there have been so many curve-balls thrown that I don't know what to expect next. I try to focus on being grateful that her jaw distraction went so well and that she is capable of breathing without her trach now.

Saturday, April 4, 2009

Fun times before and after surgery

Mom and Cicily playing in pre-op. They gave us the toy room this time around. Cicily was well entertained for the 2 hour or so wait!
Dad and Cicily driving around the pre-op floor. These cars are a staple of the pre-surgery routine. Cicily loves doing her rounds in her car!
Later that night, both of Cicily's Grandmas and Grandpas came to visit her in the PICU. She was SO excited to see them, it really cheered her up! And they even brought presents to keep her entertained during her hospital stay.
Here she is playing the pillow game made up by Grandmas and Cicily! Grandmas make everything better!!
Grandpa Norm and Cis playing away!
Happy girl with her Grandma DeEtte!