Party Girls

Well, the holiday season has certainly led Zoe to believe that each day is another party.  She thinks each car trip should end at a party (preferably at “Ish” (Aisling’s) “house”).  They started with the Down Syndrome Ass’n’s Christmas party.  True to form, they spent most of the time climbing the play equipment, until the music started, and then they were off to watch two funny little old men play carols.  Unfortunately, the wilder one was dancing so much that he almost stepped on Sophia, but she got over it until a few minutes later when she got trapped in the middle of the hokey pokey and couldn’t get out.  That experience, however, didn’t stop her from heading right for the middle during Trailer Trash’s Family Concert the next day.  I had to stand on the sidelines to watch her so wasn’t able to see where she got the idea to shake her “bottom side” when they said to “put your best part in…”

At the DSAM party, the girls got to sit next to Santa (on my lap), and they got their picture taken with the Roller Girls who were volunteering at the activity tables.  (We didn’t tell them that we thought about being the “Stroller Girls” for Halloween). Zoe stopped at the cookie decorating table long enough to put frosting on a cookie and lick it off.  That was actually pretty surprising as “cookie” has become one of her favorite words (she both signs and speaks it to be sure we understand what she is requesting).

Trailer Trash was their first live band, dance in front, pay at the door type show.  We think Zoe was pretty overwhelmed as she really just wanted to be held as if she were really sleepy. Sophia had a blast dancing, though, and we had to keep trying to follow behind her as she roamed the dance floor, occasionally plopping down on the floor to watch other kids dancing.  She quickly caught on to the idea that you are supposed to clap at the end of the song, and pretty quickly she was initiating the clapping.  At one point, she’d decided she’d look for John and was walking around signing “Papa” (touching her forehead w/ her thumb).  She’s really started using her name signs a lot, lately.  Papa and Zoe are her favorites, but she uses Mama, Grandma, and Siobhàn, too.  She’s also started really wanting to be independent, so she’ll wave “bye bye”, blow you a kiss, and want you to leave her alone to run or read or whatever it is that she is doing. Zoe is similarly demanding “self” a lot more lately.  Apparently, they are in agreement that I hover.

We stopped quickly for breakfast before the concert, and Zoe learned to drink from a straw; Sophia did a great job drinking orange juice from Papa’s spoon; and Zoe (luckily quietly) said “hiney” as the server walked away. (Probably better than saying (arm)”pits” to her teachers).

At their last ECFE class before the holidays, the kids had a little “concert” as the parents returned to the classroom (shaking jingle bells while the teacher sang and played Jingle Bells on his guitar).  My attendance at their first concert was limited to the brief couple of seconds it took to identify that yes it was Zoe whose diaper smelled so badly.  Their special ed teacher had great praise for their day; Zoe is becoming more social and sticking around when other kids come over to play at the same station, and Sophia is starting to actually do the actions to the songs she knows even when there are other people to watch.

Zoe went to the next party (at “Auntie” Kirsti’s house) without her sister, since Sophia had to go to bed at 4:00!  Sophia has been getting up between 4 and 4:30AM for the past two weeks, so when she took a 10 minute nap the day of that party, she had to go to bed extremely early.  Although it would be logical that if she went to bed later, she’d sleep later, that is not the case.  It’s 4 something no matter when she goes to bed. One morning she actually went back to sleep with me in our bed…amazing!  I actually got some sleep, too.  She hasn’t repeated that again, but it would be really nice if we could get her out of this 4AM cycle.  Zoe is finally out of her 4:48AM pattern, so it would be nice to have them both sleeping in a little longer.  Zoe did have fun at the party, mostly playing with Lily, her little buddy who is about 6 months younger.

Sophia has been going down to bed much easier lately without moaning to sleep.  Right around the time things started looking better, she began demanding online clips of Sesame Street before she went to bed.  At first it was a special treat when Poppy put her down, but it quickly became pretty clear that she thought that should be her new bedtime routine.  I guess it’s not too bad to watch a little to relax, even though the Muppet mouths don’t do anything to help her watch speech patterns!  It’s also nice to have something that she really looks forward to other than bubbles.  Oscar seems to be her favorite character in the books, but not always online.  The piggies clip is her favorite episode so far.    Zoe hasn’t really been too much into it, but really liked little John John today.

After that, there were “parties” every day:  Christmas Eve at Grandma’s, Christmas Day at our house, the next day a party at “Ish” and “Vonne’s” house, the next day sledding, the next day Mayo/Grandma; the next day swimming at Nanny Kelly’s and Macy’s 8th floor; the next day the Zoo w/ friends Jenell and Hannah, and New Year’s Eve, the Children’s Museum, phew!  It’s going to be a cold weekend, so I think we need to get them used to staying home for tea parties.

Zoe was very anxious to get to Grandma’s and walked around saying “house” all day.  A couple days later, she was even more anxious to get to “Ish’s” party and walked around saying “Ish,” “house,” and “tights.”  The whole way home from the Zoo, she whined about going to “Ish” … “house”.  She was mad at John when he took her out for errands before Ish’s party, and they went home first instead of going straight to the party.  She was thrilled to find “toast” as well (carrot ring at Grandma’s, and fancy Rice Krispie bars at Ish’s).  (When you ask her what she is going to get at the store, she’ll say “toast.”)  I’m not sure how that developed, but she loves her toast.

Sophia got a little guitar for Christmas, which she loves.  She keeps wanting us to play, but so far she seems to accept singing and strumming without actual playing.  Zoe must have remembered that her ECFE teacher plays “If You’re Happy and You Know It” on his, so she points to the guitar and says “happy”.  Her most frequent request, however, if for “Rosie” (Ring Around the Rosie).  She is hysterical when she decides that is what she wants to sing, and she’ll march over and grab Sophia’s hands (who just kind of laughs and goes along with it) and our hands and walk around in a circle, but only fall down if she can fall on an adult.

Sophia’s also had a couple of doctor visits amidst the parties. She went to the eye doctor again right before Christmas and they still saw some crossing intermittently when they tilted her head the opposite way she tilts it. We are to keep going back every two months, and if they continue to see it, he will want to fix it sometime during 2010. He seems to be most concerned about the head tilt itself, since she really has made adaptations so that her vision is fine.

We also had our trip to Mayo and unfortunately, that doctor confirmed the recommendation for another open heart surgery. I guess we expected it, but still had some hope. In between appointments for the echo-cardiogram and with the cardiologist, Sophia had a good time wandering the fancy Barnes and Noble and the public library. I think she has a future as a candy striper; she loves going up to patients in wheelchairs and was chasing a little boy who was using a walker, which gave him the biggest smile!

The trip did make us feel even more confident in the care we are getting here at the U of M. It seems that the membrane is affecting her heart even more than it was when we were in in early November, so I think they will want to do surgery relatively quickly. We contacted our doctors right away, and they’ve contacted the surgeon, so we are just waiting to hear from the schedulers. I’m sure it is going to be a really tough time for all of us (of course, especially Sophia), but we are trying to have lots of fun now and build her communication skills as much as we can. I try not to think about the procedure and the horrible time right after surgery and focus on the fact that during this stay I won’t either have recently given birth or be pregnant!

On Monday, we meet with the teacher who provides service for the School District at the University Lab School (that we are hoping to get the girls into for preschool next fall). The teacher we have now thought it would be good to get her input on whether it would be a good placement for Sophia or not. Then we are right back into our schedule of therapies, music and ECFE. It will be sad to go back to work after being home for 11 days, but I’m sure everyone else will be glad to be back into their routines, too.