My joy!

Julia's laugh is so contagious, she can brighten anyone's day. Julia can fill a room with such joy and love.  Julia has been through so much in the past 11 months and still smiles through it.  She has taught our family so much.  

  

Julia's new Blanket

Thank you for everyone who has donated to Julia's Medical fund and also everyone who came out to Julia's benefit dinner.  One of Julia's therapist highly recommended that we buy Julia a weighted blanket.  You might say, what is a weighted blanket.  Well, a weighted blanket is a blanket that is filled with poly pellets and weighs 5lbs.  The blanket will help add  deep pressure to Julia's body and especially her legs.  The Dystonia makes Julia's legs spasm, which causes her legs to hurt especially at night.  Have you ever had a charlie horse?  Well Julia's spasms are worse than a charlie horse and very painful. Here is an example of what dystonia does to Julia's muscles.

When we purchased Julia's weighted blanket, we also received a FREE Weighted vest. Julia receives Occupational Therapy 2x a month for her sensory issues.  The vest can be filled with weight, beans, poly pellets or anything to help Julia get the deep pressure that her body needs.

                                 Julia loves her new Princess Weighted Blanket.

Julia taking a nap with her blanket.

CHOP visit 1-13-14

Julia went to CHOP hospital to see her Movement Doctor on January 13th . The Dr said Julia looks good and her height is 36 3/4'' and 32 lbs.  The Dr would like to increase Julia's current medication to a higher dosage and 3x a day. The Dr also requested some more blood work.  Julia cried while getting her blood drawn. Than the nurse gave Julia a band-aid and also 2 for her babies, she is such a tough little girl.

Julia's Dr has also requested a MRI of her spine, an Exome sequencing testing and a urine sample.

Julia was exhausted after a long day at CHOP.

Julia's Benefit Dinner

Julia's benefit dinner on Friday January 10, 2014 was a Success.  Thank you to all the business who donated items for the Chinese Auction and the bakeries for the yummy baked goods.  Also, thank you to everyone who attended Julia's Benefit dinner.  We hope everyone who came out, had a great time.

Julia ready for her Special Dinner

 Thank you Acme for donating the cake, Century Bakery for donating the sampler pastries,  Little Mama's Cafe for donating the cupcakes and Lindsay Cassidy Cookies for donating the Dystonia cookies.

 Dystonia cookies made by Lindsay Cassidy Cookies

 Cake donated by Acme

Thank you DJ Will Mosley for doing an awesome job.

Julia had a great night dancing

(even though her legs and feet hurt)

The TV Raffle 50'' Flat Screen TV 

Thank you to Edwards Events and Entertainment for doing caricatures.