Therapy update and Valentine's Day

Julia was approved for Physical Therapy in August 2013 and was receiving PT in our home until October 2013.  However, at the end of October Julia's PT left Early Intervention and Julia's PT stopped.   Julia's Dr and Early Intervention team recommended that Julia continue PT.  At the time, there were no PT available in our area so once a week Julia was scheduled to go to Washington Twp, an hour away for PT.  On Friday morning, I received a phone call that Julia will be receiving PT in our home through Early Intervention 1x a week.  Praise God, that is a huge help for Mommy.  Julia will now be receiving therapy 8x a month in our home.  The therapy that Julia receives are PT, OT, Developmental therapy and Family Traning each month.

Julia had fun making and sending Valentines cards this year.  

Mommy and Julia worked on OT Sensory stuff and made some Valentine's pictures.

Julia hopes everyone had a good Valentine's and is sending you her love.

CHOP MRI

Julia had an MRI on her spine at CHOP on Tuesday January 27, 2014.  Julia couldn't have anything to eat after midnight the night before so she was very hungry by the time we arrived at CHOP at 11:30 for her MRI.  When he arrived at CHOP the volunteers came around and gave Julia a Lightening Mcqueen coloring activity.  Than when Mommy was getting her visitors badge, the 2 kind ladies there gave Julia a big purple balloon.  Purple is Julia's favorite color and purple seemed to be the color of the day for her.  Julia wear a purple Minnie Skirt outfit to the hospital, than she got a purple balloon.  The nurses put Julia in the purple room and she also wore purple Pj's in the hospital.  It was quite a "purple day" for Julia.

Julia doing so well getting her blood pressure checked.

Julia  and Molly dressed and ready for sedation.

Wisher and Dreamers made the hospital gown for "Holly"

Julia is such a trooper.

Mommy little superhero.  Julia came out of sedation very rough.  This is Julia's 3rd sedation in 8 months and she came out of this one the hardest.  Julia couldn't take her medicine all day which caused her to have "dystonic storms".  Julia's MRI results came in and she needs to get an pelvic ultrasound this week to check on something.  Please keep Julia in your prayers.

 

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.

Julia Therapy

Julia Kate is currently receiving Developmental and Occupational Therapy from Early Intervention.  Julia is currently getting Physical Therapy at Weisman Children's Rehabilitation Hospital in Sewell, NJ.

Julia doing some OT Therapy

Julia's Snowmen Feet

Julia went to CHOP and was fitted for a medical stroller.  She is in the 97% for her height and will not be fitting in a regular stroller much longer.  Early Intervention recommended Julia get a medical stroller since she fatigues so easily and is unable to walk long distances.  The medical stroller will take about 3 months to come in.  Julia will be getting the 12" EZ Rider medical stroller in her favorite color purple.