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12.12.2015 - Earlier this week Adelyn spent an overnight visit to the hospital to begin the process of weaning her off her ventilator and it was a great success!  Her vent settings were weaned, she no longer receives any breaths from the ventilator only pressure support.  She can now come off the vent for 1/2 hour each day!  Pictures of Adelyn breathing on her own are in the gallery.  

11.16.2015 - Adelyn is loving being home and spending time with her family everyday!  She continues to make amazing progress.  She now weighs 15 pounds and is 24 inches long.    Physical and occupational therapy are being provided at home.  Adelyn does well when faced with new physical tasks; she's smiley when doing tummy time and even tries to hold her spoon when she eats cereal.  She likes to pull her big sisters hair too! 

We are going to Pittsburgh for the six month trial visit in November.  We are eager to view updated x-rays to see her continued bone development.

Adelyn was the "Bone Maker" for Halloween.  She trick-or-treated with her big brother and sister, and her cousins.  PIease refer to the gallery for pictures.

09.17.15 - Adelyn is growing (now 22.5" long and weighing 13.1 lb) and getting stronger with each day, so much so that she is scheduled to go home by the end of the month! In the meantime, Adelyn (and mom) are enjoying being back in CT with regular visits from Dad, Kaelina, Anthony and countless other family members and friends.  She loves seeing and meeting all the visitors!  

08.28.15 - She's back...in CT!!!  Adelyn and Jennie arrived in CT yesterday morning and were transported to Connecticut Children's Medical Center.

08.27.15 - One step closer to home!  Adelyn and Jennie are scheduled to return to CT by way of medical flight.  Adelyn will be admitted to the Connecticut Children's Medical Center where she will continue to receive care.

08.17.15 - Another milestone accomplished!  Adelyn transferred to home ventilator system.

08.11.15 - A pulmonary function test assessed Adelyn's lung compliance which is a measure of the lung's ability to stretch and expand.  Adelyn showed an impressive increase from 25% on July 1st to 82% on August 11th.

08.01.15 - In The News - Jennie is mentioned in the Pittsburgh Tribune-Review article, "Sen. Casey pushes for expansion of research into rare pediatric diseases" by Ben Schmitt. View Article >

07.14.15 - Adelyn had a tracheotomy and g-tube put in place today which will help her to breath and feed easier. Surgery went very well. Doctors are keeping her comfortable to help with the healing process.

07.01.15 - Three week trial visit, Adelyn is staying strong and growing, weighing in at 9 lb. 8 oz. and now 20" long. Doctors are looking at the best way to keep her oxygen up and consistent, a challenge she continues to face each day. More to be learned hopefully around mid-July.   

06.24.15 - Adelyn remains stable while continuing to receive treatment. She is weighing in at 8 lb. 7 oz. and has grown to 19-3/4”.

06.12.15 - Dad, Kaelina and Anthony drive with Auntie Alicia to Pittsburgh for their first visit.

06.10.15 - Adelyn begins initial treatment and is being monitored very closely.

06.08.15 - Adelyn, with Mom, transported by air ambulance to Children's Hospital of Pittsburgh where she'll undergo evaluation for participation in Alexion's experimental treatment.

05.29.15 - Adelyn Mae Rinaldi welcomed to the world at St. Francis Hospital in Hartford, CT.

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