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)

Outpatient:
PT
OT
ST

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
G-therapy
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! 

When you feel you are drowning in life, don't worry, your lifeguard walks on water! Kayli's Potassium overdose

Recalling the Potassium overdose, a year ago: 
Kayli had some pre operative blood work done for her spine surgeries. We got a call from the hospital, because her Potassium level came back at a critically low, 1.7 (life sustaining/safe levels are between 3.5-5). She was on the Ketogenic Diet, and because she wasn't managed well in any of the 3 Ketogenic clinics, she was starving and even suffered de-compensated heart failure in the recent past. When we received the call, we were at the nail salon getting her nails done for the first time (and marking it off her bucket list), for her upcoming Celebration of LIfe (bday party). We were already having a challenging day, because Kayli was discriminated against at the first nail salon (they refused to treat her while in her wheelchair). As advised, we took Kayli into the ER for a "K rider" (an IV dose of Potassium) to quickly get her critical Potassium level up. If the Potassium level is too low or too high, it can cause a heart to stop. Potassium is an electrolyte, and this is why a person's heart can stop when they are dehydrated (the Potassium/electrolyte level is too low). While in the ER, Kayli's Ketogenic dietician and neurologist spoke with the ER dr and they advised us to give Kayli otc (over the counter) Potassium supplements and Morton's Lite Salt to keep her levels up. The next day, we gave her the newly ordered supplements, and within minutes Kayli went into convulsions and her heart rate was over 200 bpm (beat per minute). Her eyes rolled, and she started having diarrhea. We called 911, and by the time they arrived, just 3 minutes later, Kayli was incoherent, pooping, and her heart rate was up to 280 bpm and then dropping to 38 bpm! She was sure to go into cardiac arrest! When we arrived at the ER with her, she had been stooling (diarrhea) for half an hour straight, and her heart rate was all over the place. The cardiologist refused to see her in the ER (he thought she was a lost cause), even as the nurse yelled out to him, standing just feet away from Kayli's ER room! The ER dr came in and ordered blood work after I told him that Kayli had taken some newly prescribed Potassium supplements. The Pediatrician on call came in and was shaking his head (also thinking Kayli would not make it through this). Kayli continued to have convulsions, eyes rolled back, entire body shaking, and stooling. Her heart rate well into the 300's now, and dropping frequently to the 20's and 30's. We were told she would go into cardiac arrest (they were surprised she wasn't yet), and she would not make it out of cardiac arrest. The blood work came back, and I overheard the ER dr speaking with the Pediatrician..."her Potassium level is 8". I jumped into the conversation, saying "what does that mean"? I knew it was high, but I wanted to know what that meant for treatment. The dr's brought their heads down, looking to the ground and said "that's incompatible with life...she is dying and won't make it through this". I'd heard incompatible with life before, the first time, to describe Kayli (because she has Trisomy 18). This time, the dr's were saying her condition was incompatible with life. I told the dr's I understand it isn't looking good, but that they needed to TRY to help her! She's survived "incompatible with life" before! The nurse who never left Kayli's side, had already put the paddles on her, and explained what they could do to try to help Kayli. The nurses and dr's said it is unlikely to survive levels in the 7 range, and they've never seen someone in the 8's range survive..... Kayli was in V-tach (the top of her heart stopped beating, and the bottom quivered) and was expected to go into cardiac arrest and die before our eyes on the ER table..... 
The dr's gave her some meds, but they weren't working. Kayli's levels were still too high, and weren't coming down. The dr's said they can give one more round of meds, but that was all they could do for Kayli. She will die. There is nothing more they would be able to do for her. That's when I pushed past the nurse by Kayli's side, to be with my daughter. With a lump of panic in my throat, and tears streaming down my face, I looked into Kayli's eyes to see if she was ready to go (be with our Lord and Savior). She had a blank stare on her face. Instead of seeing Kayli's soul like I did when she passed away for 32 minutes (at 4 months old), I saw a shell of a body. That was it. Her soul was gone, and she was a confused, lost little girl. That's when it hit me. Kayli did not know what was happening to her! She is not in her body, and her soul was nowhere to be seen. How would she know she was dead, if she wasn't present for her death?!!! Kayli left her body so that she was not suffering, but I just couldn't let her go without HER making the choice to die! For the first time in her 4 years of life, I begged for Kayli to come back to me. I begged her to stay with me, and not leave me! I wanted HER to make the conscious choice, and I wanted her death to be peaceful (like it was the first time)! I didn't want her to suffer, but at the same time I knew Kayli wasn't there to talk to...to decide if she was ready to go or not. I leaned into her, with my heavy heart that seemed to come out through my mouth, I put my trembling lips on her ear, and begged. I begged her to come back to me, even if just to say goodbye. My tears filled her ear, like a lake overflowing after a heavy rain storm. I begged her to come back just long enough to decide for herself. I told her that she doesn't have to stay long, but I NEEDED her to come back to me. And...she did. Her eyes filled with her spirit again! She was scared, but she was there with me. I cried and told her I'm scared too, and it's ok because we're in this together. I told her what happened, and how bad it was. I told her we aren't giving up on her, and no matter how bad she's hurting right now she is not alone. She will never be alone. I asked her to trust in me. I begged her to stay with me, and fight to get better. I told her I know she doesn't understand right now, but that I needed her to trust me and stay with me until she could understand what was happening. I asked Kayli to slow down her heart rate. At that moment, Kayli's heart rate began to drop down a little. Kayli was trusting me! I cheered her on. Her nurse saw her heart rate dropping, and cheered her on too. We cried, and laughed because our emotions were all over the place. I was relieved that Kayli was responding to me, and was trusting me. Kayli's heart rate continued to come down, as my tears of joy and praises of God enveloped her little quivering body. Kayli's status became "unstably stable". That meant there was no telling when the next heart beat would be, but there was a suggestion of a promising trend. Flight for life was called, and the plan was to transfer Kayli in the unstably stable condition, to better equipped hospital. Kayli ended up being transported by a critical care team via ambulance instead. She was not expected to survive the transport, but she did! Kayli continued to get better, in the new PICU (pediatric intensive care unit), but there was something different about her. The next day, her heart rate was stable, and she had survived the impossible!! Or so we thought. As the days went on, we noticed Kayli was inconsolable. She cried ALL the time, and wailed even harder if we talked to her or tried to comfort her, or hold her. Kayli had no idea who were were! Of all the heartache in Kayli's journey, this was the hardest to take. Kayli was alive, but no longer knew of our love for her. She was scared, and lonely. I questioned my decision to beg her to stay with us. My daughter was still here with me, but she didn't know love. What kind of life is it, if you don't know of love? Kayli feared me, and all those around her who love her. Her nurses were in tears, and were heartbroken. We all grieved Kayli's life as we knew it. We just wanted our Kayli back. As the weeks went on, we continued to hold her, even as our tears fell and she cried. Eventually, Kayli tired of crying, and tolerated our love. She wasn't happy, and she didn't know who we were, but she tolerated our unconditional love for her. Then we noticed Kayli would awake from her sleep in what we thought were seizures. But the seizures were strange, because when we talked to Kayli during them, she seemed to keep from going into the seizures. We learned to cope with our "new" Kayli, and support her in every way we could. In time (months), Kayli learned to trust us again, and embraced our love for her. A year later, she now completely trusts us, loves us back, and shows happiness and joy in her life. 6 months or so after the Potassium overdose, Kayli was diagnosed with Hyperekplexia, aka Startle Syndrome. Basically, she has an exaggerated scare response and wakes up as if having night terrors. I imagine it's because her brain was affected from the extreme Potassium levels. Hyperekplexia does not affect her brain like seizures would. In fact, other than feeling startled, it has no affect on her. Once the startle stops, Kayli is completely "herself" again. As time has gone on, Kayli's Hyperekplexia appears to be decreasing. She is in reflex therapy in hopes of calming, and bringing her out of her new condition. Kayli faced death for the 8th time in her short life, and God granted her another miracle of life! We often ask ourselves, "Why Me?". "What did we ever do to deserve this life with Kayli?" Not because we are frustrated, angry, nor burdened with Kayli, but because we are truly Blessed. God is good ALL the time. Through all life's trials and tribulations, He shows us the glory. 

When you feel you are drowning in life, don't worry, your lifeguard walks on water. 

What is Kayli's prognosis?

What is Kayli's prognosis?

It is a question asked of me time and time again, because Kayli has a diagnosis of Trisomy 18 (a diagnosis that carries a less than 10% chance of surviving to the age of 1). I'm sure the intent of the question (in most cases) is not malicious, but one that is asked with anticipated dread and a nervous tone. My quick reply is, "Kayli has outlived her prognosis". That usually is not a sufficient answer to quench the desire to know more about Kayli's iminent demise hanging over her head. The push for a more definitive answer leads me to respond with educated statements, with hope to connect the inquiring mind with God and Kayli's intent here on Earth with us:

First, I reflect on the definition of Prognosis: A forecast of probable outcome.

My extended response to questions of Kayli's prognosis, is that she will live long enough to strengthen your faith, to share hope with you, to educate you, and to connect you with your spiritual being. Kayli's prognosis of life next to yours, is determined on your understanding and acceptance of her abilities as well as her challenges. Kayli's prognosis in life on Earth is not limited to a determined life expectancy because she is unique and nobody has been granted the identical extraordinary life she has been granted. The prognosis of her body is the same as your bodily prognosis, there is no way to determine what tomorrow holds, only the desire to make the best of the days we have been given. She may live through the day, or she may live through 100,000 more days. Her body is a wonderfully and fearfully made creation, a one of a kind miracle by God just as yours is. Kayli's medical prognosis is somewhat dependent on the gifts God has granted the doctors, nurses, and medical professionals crossing her path, and what THEY choose to do with their gifts. One may say her medical prognosis is dependent on the care that is offered and provided to her. I guess in short, my answer to your question of Kayli's prognosis , or "forecast of probable outcome" is that she will have a qualitative life of profound inspiration to those who have the honor of connecting with her. Which brings me back to my short answer....Kayli has outlived her prognosis. She has exceedingly reached far and wide to connect with others, inspired many to share her faith and love for God and His son, and she has outlived the understated forecast of probable outcome set by many medical professionals.... I pray that my prognosis is as bright and as inspiring as hers is! 

Mom approved, gift ideas for kiddos with special needs

This is an ever expanding list of gift ideas for kiddos with special needs.  If you have any suggestions, please message me or leave a comment so we can add the suggestion to the list.

Vision/Lights

Butterfly in a jar (looks too real to be fake!)

This butterfly has an amazing lifelike affect.  Minutes after taping the lid, the butterfly continues to sporadically flutters around the jar!  

Dancing water speakers http://www.youtube.com/watch?v=LEYw1PjUtp4

These speakers shoot water and light up (LED lighting) to the sound of music.  This is a great item for the hearing impaired, as they "see" the beats to the music! 

Fiber optic color changing burst light

Great item for slow visual processing!  With an on/off switch burst, you can add a battery interceptor and use with a switch! 

Magic jelly fish
https://www.amazon.com/Fascinations-Magic-Jellyfish-LED-Lights/dp/B002L28SU4/ref=sr_1_5?ie=UTF8&qid=1479488670&sr=8-5&keywords=magical+jelly+fish

Mylar Balloon

Pinwheel (with a fan blowing it, and a flashlight shining on it!)

Sound Sensor lighting wire ball http://www.thegadgetexperience.com/sound-sensor-lighting-wire-ball/

The balls light up with different tones of voice or music. Great for the hearing impaired, to actually "see" the sounds!  You can change to auto also, where the balls light up without sound activation. 

VTech Happy Lights Bear

V-tech record and learn photo album

Rope lights

Great visual item, that doesn't get hot, so you can place on/around child or hang around the room! 

Uncle Milton's Fireworks Light Show                                             

Smartnoggin Noggin Stik

The Smartnoggin has cause/effect changing colors, has texture, and is a rattle! It's worth the $20! 

A cause and effect, light up rattle! 

Doodle Dome 

Wheelchair lights, Underglow http://www.wunderglow.com/

Oggz

Oggz is a rechargeable color-morphing egg! 

The Rotoprism.  You can change the light speed, and colors. 

Infinity Mirror                                                                                   

Bright Start Baby Light and Giggle Drum                                         

    

                                     Aurora Master Ocean Light                                        

This lights up the entire room/ceiling, and makes it look like you are in the ocean (if blue).  The projector also changes colors, as you wish. 

Sensory/touch 

Body sock

Finger paints

A great tool for creative exploration, as well as, sensory touch input! 

Fisher Price Giggle Gang

Great cause and effect toy, that giggles like a baby when ever so slightly touched! 

Moon Sand

Great sensory item, that never dries out! Look for Moon dough too! 

Kinetic Sand

Kinetic sand never dries out, doesn't leave residue on hands, and only sticks to itself! 

oball rattle

Easy to grasp rattles! 

Sensory Balls

Seonsory Balls mega shapes

Site of Senses box~ http://siteofsenses.org/index.html

With resonating boards, the feels and hears every little movement they make! Great cause and effect learning box for visually and hearing impaired! 

Tactile touchable squares

Wall of Senses~ http://siteofsenses.org/WoS.htm

Hearing/Music Therapy

Mozart Magic Cube

Chimalong Deluxe

Touch Magic Ocean Music School

Ocean Wave Drum (Remo version)

B Picoolo Carousel Bells

Musical hand pat bells

Mini Rainmaker

Fisher Price Crawl along drum

Playskool Rocktivity drum

Sensitive touch drum 

Recordable books

Record your voice, reading a story to your loved one! 

Ring around bells

Push the yellow button on the base, and the bells go in a circle to make music against the hanging ball.  This is one of Kayli's Favorite toys! 

Tone Chimes

Another of Kayli's favorites!  Tone chimes make the surrounding area vibrate!  Such a calming affect for all to enjoy! 

Wrist bells

Great cause and effect when a child moves their arm! 

Guiro

Hohner kids 8" plastic Guiro makes different tones, depending on where you rub the stick against it! 

Thunder Tube 

You can control the thunder! Produces deep, vibration sounds. 

Low tone play 

The Original Big Joe Bean Bag (sold at Walmart)

This bag is a less expensive option for a crash pad.  Price is around $40.

Caterpillar musical rocker (with or without back support)

Exercise ball (to sit or bounce on, or stand against)

Great for leaning against, standing upright, or for laying on top of and rolling! 

Peanut Ball

Great for straddling, or leaning over in a crawl position 

Zero Gravity Chair 

Hanging Chaise Lounge Chair                                                         

Swing                                                                                 

https://www.amazon.com/dp/B0018QEFRO/ref=wl_mb_recs_3_title      $109 

Indoor Hammock C Stand                                                                         

FINE MOTOR PLAY


Fur Friends

Fur Real friends come in an assortment of animals.  The cat is easy to pet (on back) which activates the cat to meow and walk.  It's like a switch toy without a switch!  It has an on/off button, so you could also attached a battery interceptor and use with a switch! 

Lamaze Garden Chime flowers

V-tech Learn and Dance interactive zoo
                                                  

Penguin Race

Fun to watch, and great cause and effect, repetitive play! AND, you can connect it to a switch to activate! 

Lamaze Totem Pole
                                         

Magnetic, easy to stack totem pole for practicing hand/eye coordination! The individual pieces also have different textures and crackle cause/effect. 

ORAL MOTOR PLAY

Z-vibe

Ark's Z-vibe helps is an oral vibrator that gives awareness and sensations for oral stimulation.