2011 Deedee's Morning Routine Part 1: Percussion/CPT & Cough Assist

July 2011. Here we show Deedee's morning routine. We made a previous detailed video in Spanish a year ago. Here we show what we do daily.

Deedee wakes up at 7:00am to the sound of a buzz... the power percussion is on! Percussion takes 1 hour (we split the hour in four, taking each quadrant in 15 minutes with the power percussion), after that goes manual CPT as needed. It is followed by Cough Assist. We suction before and after coughs, using the red catheter for deep suction. We normally do 3 sets of 5 rounds. When she is sick, we do it every 4 hours. Normally, the RT session (cough assist) takes 15 minutes. After this 1 and a half hour of serious RT, we do the Beckman motor oral therapy.

Everyday, this whole routine takes two hours. It is the first thing Deedee does in the day... and this is repeated from 8:00pm to 10:00pm before going to sleep. This keeps our diva healthy.

Follow Deedee in her website: www.deirdremedina.com.

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• Deirdre Medina
• Deedee Medina
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• AME PR

[AlekMommy]

I would like to say this video just brought me to tears.....She looks scared and I am also wanting to say that you guys are doing a wonderful job in taking care of that princess...I just thank God and I know he has a plan......I appreciate you sharing this video I am a nursing student and it helps me prepare and gives me a extra push to study hard because I will be excellent at taking care of other Princesses just like her...

[viernadarguth]

@AlekMommy She's not a scared, but a very annoyed. :) She doesn't like anyone interrupting her movies. She can't move, and we usually position her hands upwards so they are out the way on the sides (we place all she needs on the sides). When she is scared her eyebrows arc, and the eyes get quite wide. Still, the RT routine is not something pleasant. She is just used to it by now (3.5 yrs of this, and going). And it works (which is the most important part). Thanks for the kind vibes and words!

[viernadarguth]

@AlekMommy God has been very good to her, as well as all of us. She is a very sassy, intelligent, and very opinionated little girl... and we are doing our best to be able to give her the right tools so she can soar and make her dreams come true. We know she can do anything. We see many miracles every second. She is truly my inspiration, Deedee has surprised many and touched so many lives at her short age! Thanks to her I've seen that love blooms through the most unlikely of situations.

[TypesEvilAspieEyes]

She is not able to cough on her own right?? Does she put in effort to cough ?? It's good that she put in effort too . Have you tried her in hypoberic oxygen therapy too?? It promotes healing @viernadarguth

[viernadarguth]

@TypesEvilAspieEyes She can't. SMA is all about extreme muscle weakness. That's why she can't lift arms, legs, hold her head, move her mouth... Lungs are fine, but the muscles of the lungs are very weak. Cough assist helps her cough to clear secretions, and provides lung exercise so they grow/expand with her.

[viernadarguth]

@TypesEvilAspieEyes She can't. SMA is all about extreme muscle weakness. That's why she can't lift arms, legs, hold her head, move her mouth... Lungs are fine, but the muscles of the lungs are very weak. Cough assist helps her cough to clear secretions, and provides lung exercise so they grow/expand with her.

[TypesEvilAspieEyes]

You should try her on hypoberic oxygen therapy

[TypesEvilAspieEyes]

@viernadarguth she touches my heart ever sooo deeply . She has the hand of God touched inside her. Soo surprised that she is still here .. She is beating the odds definitely.. I will pass on prayers .. God bless her and the family

[mrhayley4]

Bless her lil heart

[haleybutterfly11]

How old is she