Lucy H.

About Me:  Written by Lucy

My name is Lucy Caroline H.  I am eight years old.  I am a little girl who goes to Cassidy School.  I am in the second grade in Mrs. McCormick’s class.  I can read level two books; my favorites are Wings on Things, Junie B. Jones, and Hopscotch Hill books.  Even though I can read them very well I like them better when my mom or dad reads them to me.  My best skills at school are recess, 100% A+ Spelling Tests, and I am getting better with having green behavior cards (that means no arguing and talking back).

I go to Mrs. Kimball’s dance class on Monday’s and Thursday’s after school.  We learn how to do arabesques, kicks and sashays.  Last week we were in the variety show at my school.  We performed a dance to “It’s a Hard Knock Life” from Annie and all of us dressed up like orphans. 

I have tube feedings but I like to eat too!  I like French fries, corn off the cob, asparagus, spaghetti with butter and salt, and most of all I love, love, love to cut up mushrooms, cook them with dad and eat them up. 

I went to Disney this January with Make-A-Wish.  I got to dance with Minnie Mouse and the Princesses, ride The Tea Cups Carousel, Dumbo, the Magic Carpet and all the rides.  It was a wonderful trip. 

I have two cats, one named Isabella and one named Samantha.  Samantha is a kitten and I got her for an early birthday present.  She is fun to play with and I try to remember to feed her.  I am looking forward to summer when I can go tubing and swimming in Grandaddy’s lake in South Carolina.  I love that!

About Lucy:  Written by Mom

What can I add about Lucy.  I can think of many words to describe her:  Determined, Talkative, Dramatic, Strong-Willed.  She has so much energy she wears me out with her determination.  I have to laugh sometimes when I remember thinking she might not talk.  This girl can talk your head off, and has a vocabulary beyond her eight years.  Lucy’s favorite thing to do is pretend.  She plays dress up, school, tea party, baby dolls, dance party, performs, sings, plays dollhouse, groovy girls, fashion pollys, barbies, pooh characters.  She is all girl!!!!!! 

Lucy is maintaining normal cognitive skills at school.  We work really hard for this and do lots of repetition to help her with homework, extra help at school, tutoring, and therapies.  She has the most trouble with focus and things requiring this focus.  So far with repetition she is able to learn and every day it amazes me what she picks up that we haven’t worked on at all.  Socially she is a little immature.  She has trouble interacting appropriately with her peers, but we are working on this with social groups at school, coaching from teachers and us, playdates, social stories, etc.  We have seen progress in this area too, slow sometimes, then leaps.  I worry most that she won’t have friends because she can be so bossy or inappropriate with her peers.  We just have to keep working on this.  In a way I am glad she doesn’t care so much about what peers think, because they can be cruel sometimes, especially as she gets older. 

              She really loves her dance class and performing with the group.  This takes place as school and the teacher focuses a lot on team building and recognizing each others strengths.  It is a great way for the girls to get to know others in the school, not just the kids in her class.  Her school has been great.  She has an aid to do tube feedings and make sure she eats snack and lunch.  She also has some extra help with her work when she needs it.  Many of the teachers know how to do her tube feedings too.  I have been very happy with her care there. 

              She goes to church school weekly and this year she has her first communion which she seems to be pretty excited about. 

              Her Propionic Acidemia is in fairly good control as long as she is healthy.  We maintain strict diet intake, tube feeding and oral meals.  Lucy enjoys eating, which we work really hard for.  It is fun to take her to a restaurant and watch her order her “French fries with extra salt and a glass of water with a lid”.  She also likes spaghetti, spaghetti O’s, Saute’ mushrooms with garlic, tomatoes, asparagus, bananas, goldfish crackers, pretzels, garlic bread, waffles, butter sandwiches, the list goes on.  We check her blood amino acids and urine organics about twice a year now, unless she is sick.  Her growth is stable.  She is a big girl:  about 79 lbs, about 53 inches tall. 

              Lucy takes Atenolol daily for her Prolonged QT Syndrome which was diagnosed in December 2004.  She also has a leg length difference which effects her balance.  We monitor that through Shriner’s orthapedics and she wears a lift on her left shoe to help.  We are not quite sure what will happen with that as she grows, we just have to wait and see had bad the difference gets. 

              Just like normal families with kids we are busy.  School, play dates, homework, work for mom and dad, and the pa extras thrown in.  Lucy and I battle a lot, the mommy – daughter thing at its best.  Many days I feel like I am talking to a teenager already the way she argues with me over almost everything.  I definitely need my glass of wine every evening to get me through homework time. I am not kidding!!!!!  After all it is my job to take care of her and often that means being the bad guy, but I am a good mommy, whether she likes it or not.  HA!