Thea’s Story

Site created on December 6, 2019

Welcome to Thea’s CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

Newest Update

Journal entry by Jodie Starr

Its been a very exciting last couple of weeks. Baby girl is 11 months old and has reached new milestones like a champ. She now says “momma”, “dadda”, and “bahbah” with intent and is even throwing in an occasional “buh-bye” with a slight hand wave! Two weeks ago, while Grandma Dawn, Aunt Dodie & Great Grandma Char were over visiting, Thea really showed off and rolled over for the first time and even did it right away again for a second time!! She can now roll from belly to back in both directions. She’s very close to rolling from back to belly. Her top half has it down, but her legs are lagging in helping her out to finish the task. I’m anxiously awaiting the need to completely baby proof this house. Here’s to hoping before long we will have a little rolly polly to chase around!!

Last month was Thea’s first sleep study and she failed miserably. The average number of times a baby her age experiences sleep apnea is 1-2 times/hour. Thea was recorded anywhere between 10-38 times/hour. Sometimes her blood oxygen was even dipping below 60%! Not good. Since then we have been set up with a pulseoximeter and nasal cannula Oxygen for her to wear at night. These are only temporary until her next sleep study on March 18th. At this sleep study they will be fitting her with a bipap and titrating the settings to maximize her lung function. Most SMA patients have a bipap and many of them must wear it 24-7. We are beyond ready and excited for her to get this and see all the extra energy and zest it will bring her!

Many of you have seen the news story going viral of the little 2 year old girl with SMA that received Zolgensma and is now able to walk. Her story is one of many incredible results that Spinraza and Zolgensma have made possible. The future is very exciting in the SMA community right now. Its everchanging and evolving very quickly. Past “protocols” aren’t necessarily the only or even best options anymore.  Spinraza has helped our Thea in sooooo many ways.  She has really flourished with more abilities, strength, appetite, and spunkiness! Yesterday we received big news ……
INSURANCE HAS APPROVED ZOLGENSMA FOR THEA!!!!
Tentative infusion date June 3rd. Thank you all for your continued thoughts and prayers for our girl!

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