DEEDEE's DAILY THERAPIES:
EXPLAINING ALL IT TAKES
Deirdre receives multiple daily therapies. This helps her to stay healthy and to exercise her muscles. Here we describe all of the therapies that Deedee receives. These are just for her. You should keep in mind that Deirdre ONLY suffers SMA. Deirdre has no other complications so far. Before carrying out any activity you should consult a professional.
In the VIDEO-THERAPIES sectin you can find videos of all the therapists listed in this page.
RESPIRATORY THERAPY
Upon awakening and before bedtime Deirdre completes her respiratory therapy. It basically consists of percussion, chest-beating "chest tapping" and use the machine "Cough Assist" which helps to imitate coughing. These three steps are performed to ensure the movement of fluids, taking them out of the lungs.
For our children is extremely important to keep the lungs clear, and exercising the muscles of the lungs to cause coughing. This daily routine has achieved that Deirdre's chest ( which was bell-shaped) has been strengthened and now has normal shape.
VIBRACIONES o PERCUSION
There are four sides of the lungs to be covered: two front and two behind. Use the power percussion at least 15 minutes in each quadrant.
The goal: To loosen all secretions that Deirdre has stuck to the walls of the lungs. If there are many thick secretions, we put the bed in position "trendelemberg" so gravity helps the secretions to go to the upper part for deep suction.
CHEST TAPPING
After powered percussion, we do the "CHEST TAP." This is basically slapping the four quadrants. It has the same effect using a palette with a mask attached to it, and tapping with the mask. The vibration loosens off the secretions into the upper lungs. Usually we give 100 pats in each quadrant.
SALINE DROPS & SUCTION
We put some drops of saline in the nose and then do deep suction using the red urether catheter. When you are coming out, do not loose the hold of the suction (if you do, what you were taking out will stay in and may cause problems). Use a yankauer for mouth suction if needed.
VERIFY COUGH ASSIST SETTINGS
Verify the calibration. Cover the Cough Assist mask. The needles must mark 40 exhale and 40 inhale. Pause must be in 1. These has been the settings since Deirdre was 7 months old.
If all is well, proceed to the 1st set of 5 consecutive respirations. If Deedee is sick, she may require more respirations on each set, and this whole 3 sets must be done every 4 hours PRN.
FIRST SET: COUGH!
Position Deedee so the mask has a good seal. Her head should be a bit tilted to the back, as if doing CPR. We place a round pillow under her neck for proper support. Hold her mouth shut, make sure the mask is not hitting her face and is well placed over her nose. Start the 1st set of 5 respirations. Force the mask in place or each exhale will blow it off.
SUCTION MOUTH WITH YANKAUER
Immediately suction the mouth. Use the Yankauer wand. Change the wand for the Y with the urinary catheter.
SALINE SOLUTION
Place some saline drops in her nostrils to lubricate and break secretions.
DEEP SUCTION WITH RED CATHETER
Perform deep suction right after using the saline drops. Keep suction hold when coming out of the nose. If you catch secretions, clean the catheter before going back in the nostrils. Repeat as necesary, alternating saline and suction each time.
SECOND SET: COUGH!
Revise the head position (CPR ready), close the mouth, and place the Cough Assist mask (check eyes and nose, do not swuish the nose!). Go for the 5 respirations. Make sure you are doing it right: If the chest raises, it is ok. The chest should raise and lower 5 times.
SUCTION MOUTH WITH YANKAUER
Immediately suction the mouth. Use the Yankauer wand. Change the wand for the Y with the urinary catheter.
SALINE SOLUTION & DEEP SUCTION
Place some saline drops in her nostrils to lubricate and break secretions. Perform deep suction right after using the saline drops. Keep suction hold when coming out of the nose. If you catch secretions, clean the catheter before going back in the nostrils. Repeat as necesary, alternating saline and suction each time.
THIRD SET: COUGH!
Revise the head position (CPR ready), close the mouth, and place the Cough Assist mask (check eyes and nose, do not swuish the nose!). Go for the 5 respirations. Make sure you are doing it right: If the chest raises, it is ok. The chest should raise and lower 5 times.
SUCTION MOUTH WITH YANKAUER
Immediately suction the mouth. Use the Yankauer wand. Change the wand for the Y with the urinary catheter.
SALINE SOLUTION & DEEP SUCTION
Place some saline drops in her nostrils to lubricate and break secretions.
Perform deep suction right after using the saline drops. Keep suction hold when coming out of the nose. If you catch secretions, clean the catheter before going back in the nostrils. Repeat as necesary, alternating saline and suction each time.
PERFORM ORAL MOTOR THERAPY & PLACE DEEDEE'S MASK ON
After the respiratory therapy Deedee's lungs are clean and it is safer to do the oral therapy. Perform the different muscle exercises for Beckman Therapy (see the video-therapy explaining Beckman moves).
Place the headgear and the Resmed Swift FX mask on.
At nights, all of this is repeated before Deedee goes to sleep.
TERAPIA FÍSICA (PT)
Our motto is "If you don't use it you loose it." Following that premise, we keep the body flexible Deedee exercising regularly. Also one of the goals is to maintain mobility and strength he has now, since when an SMA kid looses a physical skill... it is forever.
ARMS
Basically we make three basic exercises: Extending her arms up and down, stretching her arms from side to side, and extending her arms crossed.
After doing that we do flexibility exercises for the hands and fingers.
LEGS
We do three exercises: Leg lift without bending, Lifting the leg mimicking kicks, Making toads (open and close the legs).
After doing that we do flexibility exercises for the ankles (circles to the right, circle left, and lift the foot in an upright position without falling).
TORSO
Exercise the muscles of the torso moving from side to side keeping the upper torso (chest) and static bottom (hips) by rolling smoothly.
Whenever Deedee gets her daily bath she also gets her spa routine. We give her a little back massage with baby lotion.
PT IN WATER
Our next goal is to Deedee can do part of their exercises in a thermal pool. While she was doing physical therapy in the bathtub, she had more movement since she was moving and flexing muscles on her own.
We had to stop doing that because Deedee has grown and the bathroom is too small. We have very limited space, but recently we got an inflatable pool that we place in our living room during the weekends. So far, it has worked for this purpose.
TERAPIA OCUPACIONAL (OT)
HANDS
We perform suspension so she can try moving her arms withiut gravity. She manages limited movement this way.
She has used a proximity switch with success. With a click she can use some cause & effect games in the computer.
We are working on her moving her fingers significantly so she can try using an iPad, but it all depends on the strenght she can gather (which right now is less than 7 grams). For this we perform daily stretching exercises for arms, hand, fingers and hand's palm.
SENSORIAL FEEDBACK
We are working on Deedee exploring textures, shapes, smells, tastes and music through different creative projects.
SPEECH THERAPY (ST)
BECKMAN ORAL MOTOR THERAPY
Since we began receiving early intervention we used simple methods to stimulate the muscles around the mouth and tongue. However, we discovered thanks to other families that there is a method called Beckman Oral Therapy. This method includes the things that we did, adding exercises covering more intensively most of the muscles in cheeks, exterior and interior of the mouth. Our goal is to awaken dormant muscles to facilitate movement to achieve speech.
In the section of VIDEO-THERAPIES you can find videos explaining how to do this.
COMMUNICATION
Another part of speech therapy is communication. To achieve communication goals and technological methods used traditional methods.
PECS using traditional communication
We have taken several photos and films on objects and actions. We put these films in different transparencies or boxes, creating groups that she can choose to view. We are working on the use of decision making through yes and no.
Communication through technology
Deirdre has tried several demonstrations of equipment that are activated with a glance. Of all the TobiiP10 gave better results as quickly calibrated (have 4 cameras) and provides speed and comfort she needs. The Tobii P10 system was approved and now she uses it everyday.
Other ways Deedee communicates with us
Although still unable to vocalize words, Deirdre fan uses air to make guttural sounds strong and "call" when he wants something. SHe can do o this if she is alone, if she wants music or the DVD, if she is bored or wants something, and even if she wants someone to leave her room.
When she wants something, she says it with her eye gaze. She looks at it, back at you then back at what she wants. She can also select yes or no from a table if you show it, or select an item given different choices.
When Deirdre did not want to do something, she looks up with an expression of courage. She feigns sleep if she doesn't want to deal with a person.
DEVELOPMENTAL THERAPIES
Computer Play
Deedee has an adapted mouse so she can use it with her proximity switch or with the microlight switch. She uses them in the computer to play simple cause-effect games. Through the use of the eye gaze system she has learned to communicate and to use some other games.
Memory, selection and choices
Using PECS Deedee select what you want to do. We give opportunities to choose which movie to see, what to wear, how to play. We performed a set of sequential clock place where colors. She selects the color with the switch and look for items with the same colors.
We read books about animals daily, and already she identifies the animals to an animal a name and ask them to look. She also identifies patterns playing "Memory", finding their partners.
EVERYTHING ABOUT A DIVA
BEWITCHING GAZE
DAILY CARE HANDBOOK FOR DEIRDRE MEDINA
This manual describes the daily care for Deirdre Medina. This includes all therapies and respiratory issues, plus an appendix of supporting material.
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