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Born in Puerto Rico, Deirdre is a baby girl with Spinal Muscular Atrophy. She looks strong and healthy, has charming gaze, grants a smile only if she trusts you, loves music and dancing lights.She is very frail, and although she may look as a normal toddler, looks can be deceiving. A simple cold could kill her.
Even though she cannot sit up or walk or eat by mouth (right now she has very little movement due to muscle weakness and she has not been able to talk yet), she still loves to have fun and play! She enjoys it all, and responds to all. Deirdre is VERY sensitive, likes things done HER way, and loves Wonderpets, She-Ra, and the Little Mermaid.
Deirdre follows the Non Invasive Approach to treating SMA, and a specific routine everyday. Twice a day, morning and night, we do Deirdre's respiratory treatment which is mainly: vibrations/percussion chest physical therapy, positioning for secretion drainage, coughing with Cough Assist, and suctioning as needed. If Deedee is getting sick, this has to be done at least every 4 hours. Besides this, Deirdre has physical therapy (range of motion stretching and excersises), occupational therapy, speech therapy, developmental play, and of course, some leisure activities (hey, not everything can be just work!).
Up until now, Deirdre needs no medication. Agressive physical therapy has been a charm and a good fit for her. Deirdre can be off the BiPap machine for 3-9 hours. She uses no oxygen, and has no tracheostomy. Since she cannot swallow, it is very important to monitor her and suction as needed (she is at constant risk of chocking, which may cause a respiratory arrest, so care and prevention is constantly a must).
If you want to know more about her daily care, and about SMA, click on her handbook and read on! The appendix gathers information from the websites of DrBach, DrSwoboda and DrSchroth, the main experts on SMA kids.
The handbook describes Deirdre's daily care. This includes: Respiratory therapy, exercises, physical therapy, speech therapy, leisure activities and more. The appendix includes the basic documents that every family should have about SMA. These documents are also listed in the SMA section for your convenience.
