Sunday, July 6, 2014

Therapies for brain injuries/developmental delays

Kayli sustained trauma to her brain, at 4 months old, when she passed away for 32 minutes, in a PICU room, 8 hours after open heart surgery.  She lost all abilities and reflexes, with the exception of breathing.  Kayli spent the first few years of her life, in 9 therapies to overcome her delays caused by the hypoxia.  She did well in the therapies, and learned to move her muscles well enough to push adaptive buttons! Kayli was in the following therapies: 

Early Intervention;

PT (physical therapy)
OT (occupational therapy)
DT (developmental therapy)
DTV (developmental vision therapy)
DTH (developmental hearing therapy)
ST (speech therapy)


A couple of years ago, Kayli trialed, and proved she could handle, a Passi Muir (speaking) valve.  Although we were told a person cannot get reflexes back once lost, and that if there is absolutely no therapy to help with complete loss of muscle tone in the trachea and/or larnyx, we found that Kayli started controlling her secretions and started swallowing on her own when she wore the Passi Muir valve!!! This was a HUGE accomplishment for Kayli!!!  

Even with her success, Kayli has faced many more traumatic medical inflictions.  She has gone on to survive 6 more traumatic and life medical altering incidents.  She has been granted a total of 8 miracles of life, for which we are grateful, but unfortunately, she also sustained more brain damage.  Kayli keeps fighting to stay with us, and thrives with therapies, so it is our every intention to stay one step ahead of her in hope's of paving a smoother path for her.  

Currently, Kayli gets 

  • PT
  • OT 
  • DT
  • ST 
  • DTV - iPad, Smart board, eyeglasses
  • CVI therapy (eye training for eye gaze programs)
  • DTH  - FM system and hearing aided
 at school, but those therapies are limited, as they only apply to academic goals.  

Current/evolving outpatient therapies include

  • ST - Vital Stim, Passi Muir valve
  • PT - Aquatic therapy
  • OT - Reflex Integration Therapy
  • CVI - iPad apps

Last year, we put Kayli in Aquatic therapy, and she did VERY well!  She was able to kick her legs, and splash the water with her hands!  Kayli has always loved her baths, and well, any time she can spend in the water!  
 Kayli was in aquatic therapy 6 hours a week, and loved it!  Unfortunately, the therapeutic pool she was using, closed for renovations, and Kayli was dropped from Aquatic therapy. :-( 

We recently found another therapeutic pool in our area, that was just built, so she will be going back into Aquatic therapy soon! :D  Kayli's current outpatient therapies include PT and Svetlana Masgutova Reflex Integration therapy (through OT).  The reflex therapy is unique in that primary reflexes, that somehow were lost or not further developed, are re-taught. Kayli is doing well with this therapy!  We even saw a great improvement in her bladder reflexes, during the evaluation session! lol  

In the last month, we had Kayli evaluated for Hippotherapy (Equine), but she was not eligible because her spinal rods were a contraindication.  We were told she would be eligible for Horse driving (where she would sit in a wagon led by a horse), but the therapy is limited in the areas it is practiced.  We may revisit this method at a later date.  

Kayli will also starting Vital Stim therapy soon.  Vital Stim is a ST, that will help Kayli strengthen her trachea (airway) muscles, and her Larynx (vocal chord) muscles.  It is another aggressive therapy, where she will be attending therapy sessions 3 times a week, for 8-12 weeks.  We can't wait for her to start! :D 

We recently contacted a University in the USA, that practices stem cell therapy, but alas Kayli was not a candidate for the clinical trial, because she does not have her own cord blood (we were denied saving it at birth, because of her Trisomy 18 diagnosis).  

We are always looking for more avenues to help Kayli in her recovery, and are considering these additional therapies for Kayli, to aid her in recovering brain function:

Cuevas Medek Exercises

Advanced Biomechanical Rehabilitation
Hyperbaric treatments
Neuro suit therapy
Anat Baniel Method
Biomedical Protocol 
Institutes for the Achievement of Human Potential 

If you can suggest or give your opinion of any other therapeutic methods, please feel free to leave a comment or message us! 


  1. Consider this therapy... - very interesting medical studies for those with traumatic brain injury.


    The ADELI Medical Center is an international rehabilitation centre which specialises in treating patients with neurological disorders. From the time it was established in 2003, the ADELI Center has successfully treated more than 2,000 patients, mainly with conditions following a brain injury.
    Patients from more than 20 countries, including Germany, Austria, Switzerland, Italy, Netherlands, Czech Republic, Slovakia, Russian Federation, Ukraine, Saudi Arabia, Kuwait, Libya, Egypt, Oman, UAE, Spain, United Kingdom, Turkey, Romania, Albania, Israel, USA and Canada, have been treated till now at the ADELI Center.