Saturday, July 17, 2010

Kiera's First Broadway Musical (in ABQ that is)

We ventured out last Sunday and took Kiera to see the Beauty and the Beast musical at our local performing arts venue. It was quite a logistic adventure with limited handicapped seating, of course only in the expensive seats. We opted for regular seats since there weren't 3 together in wheelchair, and Jer went to great lengths to get us aisle seats with the understanding that we could keep kiera's stroller with the vent and equipment on it in the aisle. However, upon arrival, the aisle was clearly too narrow for that with fire codes, so we ended up transferring her equipment to one seat and had her alternate laps to seat in which actually worked out quite well. We silenced alarms for the show so that she wouldn't alarm if she cried or laughed or yawned (always fun alarms). Since she's been feeling pretty well, we haven't had to suction much so we got away with suctioning only before the show, during intermission, and after. Honestly, I think her favorite part was the walk around the lobby during intermission. She did seem to enjoy the show since she absolutely adores Beauty and the Beast. It was a good FIRST show to take her too since she knows the whole movie and whole soundtrack. She has sensory issues with applause and cheering, so she did cover her ears and cry a bit during applause, but she recovered quickly since it would be followed by a song she liked. She also wasn't scared during scary parts since she knows the outcome already. She seemed a bit "concerned" during a wolf chase and when the beast gets injured, but you could tell that she knew things would be okay. Kiera probably would have done even better had I been successful at making her take a nap earlier in the day as I had tried. We had preferred a matinee, but hadn't been able to find acceptable seats during that show. Luckily, I did come prepared with pacifier in tow for coping with all the input. If only the trumpet had toned it down a bit...he was a little over the top. :) All in all, I really enjoyed being able to take her to the show. Her awed stare at the stage during the opening sequence was just priceless!

Monday, July 5, 2010

"HAPPY" Independence Day!

Kiera was leagues better with the sounds and festivities of Independence Day this year. She did pretty well last year, too. If you recall, 2 years ago she just cried and cried over the noise. She has been getting better with the choir at church, as well. For the louder fireworks she just covered her ears but there was no crying at our house this year. We have a great view of the whole city, so while we set off very tame fountains and such, we were able to enjoy all the illegal fireworks around town from our front porch without taking part in their purchase. :) They served as a great backdrop for our show. This bodes well for later this month. We bought tickets to see Beauty and the Beast (The Musical) at Popejoy since Kiera loves Beauty and the Beast so much. Hopefully, she will enjoy the songs so much that any noise from applause will be overlooked on her sensory board. :) It was quite a trick to try to get seats where we could park the stroller with all her medical equipment. The wheelchair seating would only allow us 2 seats, so we would have had to split up. I really felt like making a little stink over equal access, but Jerry managed to get us an aisle seat on the wing, so we'll make due and hope for the best. That's all for now. I've got some grading to do.

Sunday, July 4, 2010

Back to CPAP trials...FINALLY!

Hey there! I have still been so, so busy! I agreed to teach both sessions of summer school which has consisted of 9.5 hour days and trying to cram 6 chapters of Algebra or geometry into 3 weeks of 4 hours a day classes. Little high school brains are exploding everywhere. Now the first session is over Tuesday, and the next one begins. The 4th of July holiday has provided a teensy break to try to catch up on important things like mopping the floor in my kitchen and breathing. :)
Kiera finally got to start her CPAP trial up last week and is doing GREAT! She is full of energy and very BUSY. I turned my back for just a bit about 30 minutes ago, and the following picture is evidence of her busy-ness.
I wonder how often the health care equipment companies get ventilators returned with purple crayon scribbles all over them? i haven't cleaned it yet cuz I think it's freakin' hilarious! Plus it gives her a personal touch, don't you think?

I will try to start planning Kiera's 4th birthday party soon. It should be the weekend following Aug 12th, but I haven't even glanced at a calendar yet. I am in a bit of denial over the fact that she will be 4!!! (It reminds me of the NICU nurse practitioner who said she thought a worst case estimate could be that Kiera could be trached till she's 5. I remember thinking it was a bit extreme, and now she probably needs a pay-off on that bet.) It will be a Little Mermaid themed party. I framed some Little Mermaid posters that I have had since the movie came out (20 years ago!). In fact, I think one was the free poster I got for going to see Little Mermaid on it's release date! :) They were kind of beaten up and rolled up in a box in the garage, but Hobby Lobby did a fantastic job of fusing them to a board and making them look like new. I pulled down some of her nursery decor and started transitioning her room to a "big girl" room. I found a great Disney princess toddler bedding set at Other Mothers (thrift store). Kiera loves seeing her favorite princesses on her sheets and pillow cases. I hung the posters last night, and it was so cute to see her gazing at them fondly this morning. She is such a doll.
She is learning lots and lots of sign language, but still only makes airy sounds at best verbally. Kiera is also more interested in exploring food finally. She likes crumbs! Her favorite food lately is parmesan cheese. She also enjoys breaking crumbs off graham crackers. She will also chew on a bottle nipple with about 10 cc's of juice or milk in it to get tastes. It certainly doesn't qualify as drinking by any means, but it does help distract her from her more destructive chewing.

Well, I guess that gets us up to date, and pretty much where we were ventilator-wise in October! C'est La Vie! Cross our fingers, say some prayers, and keep on chugging along toward that ventilator free day in the future.