Disney on Ice

The girls loved Disney on Ice! The Princess was so excited to see Ariel skating she didn't even move an inch the whole time. She did wave at her a few times and kept telling Ariel that she loved her. So cute! Sissy told us all the way there that she was too old for princesses and wasn't going to like it at all. Well guess who sat still the whole time and never stopped watching? We had a problem with our seats but that always seems to be the case when you need wheelchair seating. We were told that our seats would be in 2 rows right by each other. But the wheelchair seats were 6 feet up from the other 2 seats we had. Luckily there were some empty accessible seats nearby so we could all sit together.
Both girls are off to school right now & I am off to paint a few projects I have been saving...

Children's Hospital visit

Wednesday we spent all day at Children's Hospital for Sissy's bi-annual checkup. She had her hip xray and her left hip is not yet dislocated but the right is for sure. I don't know why with everything she has gone through & that we have learned since her diagnosis with SMA this was really hard for me. The idea of her hips being dislocated & nothing can be done to help is just so hard for me to deal with. Luckily she isn't in any pain right now but that could change. Her scoliosis is unchanged but we are going to go ahead with a back brace now. We're hoping that it will help her sit better at school and ease some fatigue. We talked quite a bit about H1N1 of course. I think we feel a little better about our decision to keep her in school but it is still such a scary thought always in the back of my mind. She has had one shot & we are hoping when it comes time for the second one there will be one available for her.
Yesterday she had to go to the dentist for a filling and she wouldn't open her mouth for the shot. For some reason this year she has become terrified of needles. Even with all the hospitalizations and other vaccinations she has never had a problem. But this year has been all about screaming and fighting over shots.
I just wish cold and flu season was over so she didn't have to go through all this. 4 shots this fall is not her idea of fun...

Halloween...

was a huge hit for our girls! We trick or treated to more houses than usual, actually leaving Nanny's street. They thought they were so grown up going all the way around the block. We have more candy then I thought possible! They had a party after church today & got even more.
Sissy was introduced to caramel apples today (my fav!) and she thought they were good but way to much work.
All of the Halloween decor is down & ready to be put back in the attic. Now I'm on the hunt for a new Thanksgiving craft. Sissy is on 1/2 days this week for conferences so we should be able to get a fun project done. She is getting new braces for her feet so that will take up one afternoon.
Hopefully they aren't too hard to do this time.
Now I'm off in search of an almond joy from one of the girls, I'm sure they have plenty to share !

Spring break

It's Spring Break this week and it is so cold it still seems like winter. Now we are wishing we had planned a trip somewhere sunny. Hopefully we will get a few nice days this week. The girls are excited to take a trip to Build-a-Bear workshop this week. We are also trying out a few new art projects and baking this week since we have extra time

Funny Doodlebug

Doodlebug has been asking for us to tell her stories everynight in bed. Last night when I started to read to her she said "No Mommy, just read me a story out of your mouth!" She is also pretty well potty trained in the day. She is very proud of herself & runs around all day yelling "I'm proud to wear my underwear" a line she learned from her favorite potty training movie.

Busy times

We have been so busy lately. Last weekend we attended the Make-a-Wish Gala, where Sissy performed her dance that was part of her wish last year. Great weekend, fancy hotel with room service. It was everything the girls loved. It was really fun to dress up and go to such a fancy party too.
Both girls seem to have colds hanging on. I wish the warm weather would come. It snowed last weekend, which looked really great from the 40th floor of our hotel!
Parent-teacher conferences are next week so we'll have half days. Hopefully everyone can rest and get rid of these colds. Hopefully we can get out one day for some fun. Spring break is the week after that. We spent today looking for decorations for Sissy's 7th birthday. I can't believe how big my girls are getting.

Changes...

Sissy has been having a growth spurt the last few months. She loves getting bigger but it is so hard on her body. Since starting first grade & sitting for so long at school her hips have gotten so tight. That tightness combined with her added height has caused a small curvature of her spine. We are trying to figure out what we can do to help support her spine without being too difficult for her. It always seems to be a balancing act to decide what she needs & how to fit it into the life of a first grader. She doesn't like to wear braces or use her stander which are necessary everyday. Right now her foot braces are getting too small as well & we are considering knee braces too. There has also been a problem with weight loss in the last 6 months we are trying to combat. We have been really trying to up the calories and she is taking a snack to school everyday too. We go back to the dietician in a few weeks so hopefully it is working.
So many changes, sometimes I just want to put my head in the sand & ignore them. I just want to enjoy my girl and let her be a typical soon-to-be seven year old. In my mind I know all these "things" help her but I always hate when new problems come up or we need new equipment.