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)

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! 


Unconditional faith

This past winter:
As I drove alone to the 2 appts of the day, I struck up a conversation with God.  On my left were expensive houses with plenty of houses sitting on grand yards.  One caught my eye, and I told God that if He planned on us owning our own home again, I'd like one like THAT one...only a ranch with many rooms to spread out in...and no stairs so that Kayli could go throughout the house with us, in her wheelchair...but the yard was good, and the airy feeling of the walk out backdoor looked good...so I guess a basement would be ok.  I turned the corner and as I drove on, the houses started looking a little less grand.  I found myself thinking about a friend who's furnace was out and she, her husband, and her daughter with special needs sat in the cold, yet our furnace was working and my kiddos with special needs were warm at home.  I thought about all the people who's house windows were not new like ours, but rather breezy even with plastic covering them.  And those who's car wouldn't start today, yet here I drive, with a new battery.  The guilt and shame grew like fungus, in my mind.  Here we are, no longer homeless, and my choice of conversation  with God was about what more I wanted...not of Thanks.  So, I started thanking God.  I thanked him for always being there for me.  For Blessing me with my kiddos with special needs, to teach me about life with Him.  For carrying us through the life threatening syndromes and diseases.  For the warm house and full cabinets.  And for the dimes (see my previous story about God and the dime,  here).

That's when it hit me.  I needed to leap in my faith.  Many don't know this about me, but I carry shame every day.  I give freely to others, but when I am thanked....I feel guilt.  You see, I only give to others when it doesn't affect me.  I don't sacrifice anything when I'm helping others.  I give away extra medical supplies, and clothes that the kids have outgrown.  I give away groceries that I know I probably won't make or eat, and I make excuses when I'm asked to sacrifice something.  My time, my money, my understanding....I reason why I can't right now.  I hold them all close to me and judge others while checking my inventory to see if I have anything extra to share.  As I passed a shabby house with plastic on it's windows and a minivan 2 decades old, in the rock driveway, I asked God to help me take the leap of faith in Him.  I told Him that I want to give something that we (my family and I) need, to someone else in need.  I asked God to help guide me, so that I would know who He wanted me to give to.  I asked God to use me, to carry out His plan in someone else's life.  I felt God tell me that I was to stop at a house, and give $100 to the family that lived there.  It was a perfect plan!  $20 would be easily excused for our family, so that would not be enough.  $100 would be enough to notice missing in our pockets when paying bills.
I started searching, with my soul, for the family to share my faith with.  Nervously, I turned onto a side street, and hesitantly crept into the driveway that seemed to pull me in.  I looked at the house and thought to myself, "what if this is just where I want to go, and not where God wants me to be?".  I backed out of the driveway, and started driving away, afraid of making a wrong decision, and failing as God's servant.  Unsure of my choice, I decided to put God to the test.  I said to Him, if You want me to give the money to someone in this house, then surely you will give me a sign.  I then took one more look for a sign of faith.  My eyes focused on the shabby house again, and although the first sight of the old leaking windows, and de-compensating roof showed a need for the money, I had not seen any sign of God there.  At the second look, I saw the sign from God appearing out of nowhere.... a simply perfect cross made of palm leaves, on their door! A smile came over my face, as a chuckle escaped my throat.  "Thank you God!", I say out loud. "You are always with me, and hear me".  I quickly backed up my vehicle, pulled in the driveway, and rushed up to the door.  Thanks be to God, for showing me the way!!! I anxiously knocked at the door, without a plan in mind.  A man, wearing a coat even though he was in his house, answered the door.  I stumbled my words with excitement, as my hand extended to his, with the $100 bill.  I said "God Blessed You, this is for you!".  The man stuttered with words of confusion, asking me why, and assuring me it was not his to take.  I told him it might be because he prayed for it, or maybe because God knew he needed it?  I told him I didn't know why I chose him, but I have faith that God does.  It is his to keep, because he has Jesus in his life.  With tears swelling in his and my eyes,  and as he stared at the bill in his hand, I thanked him, and drove off with such love in my heart.  Love for my fellow follower, and love for our mentor and best friend, in Jesus Christ.  What an exhilarating feeling, to give something that I needed, to someone who also needed it.  Not necessarily for monetary value, but for a reminder of our unconditional faith in God.  <3

Sunday, June 15, 2014

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. 

Sunday, April 20, 2014

Kayli is 5 years old!!!!

(April 21st) Happy 5th Birthday, Sweet Pea!!!  You did it!!! Thank you for every breath you give us, every pat on your butt. Thank for every smile you share, and each and every snarl in your hair!  No a moment goes by us, that we aren't in love with you, admire you, cherish you, are inspired by you, in awe of you, and adore you...our precious angel on earth.  Praise be to God in the Highest, Kayli is 5 years old!!! 

Sunday, March 23, 2014

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! 

Wednesday, March 12, 2014

A medical room, fit for a princess




There are many things to consider when organizing your medical supplies in your household.  Space and financial resources can be limited, even while the need to have access all supplies and equipment are prevalent.  We have our house organized by necessities, body system supplies, accessibility.
The shelving unit that we built, sits on Kayli's dresser. 

The most used supplies are stocked in our daughter's room.  We built a shelving unit, bought shelving, and used things around the house to accommodate our organizing needs.



Inside the shelving unit, are the following organized bins, ready for easy access to medical supplies used daily....

Inside a pull a smaller pull out drawer, we hold her tape, thermometers, scissors, lip gloss, eye lube, tape measures, and creams


Another small pull out drawer


In this general supply drawer, we hold the trach ties, alcohol wipes, 3 different size/types of gauze, and surgi lube.  They are in a tub from another organizing system once in our basement. 


In this pull out bin, we store the posey wraps, pulse ox sensors, and Gtube button hole covers
In this GI bin, we store 2 Mic Key buttons, and a month supply of daily extensions


Then nurses' blank paperwork is stored in the bin, and their notes, etc are filed in the binder
The spare parts for the respiratory equipment is stored in here
The respiratory supplies, and the book of CD's for Kayli's music player
Even a space for books!
Storage bags for hearing aids, FM system, and cleaning supplies

The nurses station in Kayli's room 
The flower box holds lotions, dry erase markers, and the flowers in
the vase have pens attached to them, so the nurses don't accidentally
walk off with them. 
We use a dry erase board for quick information such as address (in case of emergency), family cell numbers, last trach
change, last gtube change, notice of new medications, etc.  













.








Kayli's Hospital Bed: Made by Beds by George, it is the Dreams Series, size twin.  It is made of 100% Mahogany with a dark stain.  The bed has an electric lift, head raise, and foot raise.  We opted for windows all around, and a hole in each corner of the bed, for easy Fisher Paykel tubing to fit through when the sides are up.
 The headboard is engraved with "Jesus Loves Me".  The bed is on lockable wheels for easy movement.  We ordered the attached IV pole.  The mattress was included, and is water resistant and comfortable for her spine.  We added an egg crate mattress as well.
This is Kayli's bed with an added canopy, to add to her princess room! We hang baby links with toys to her canopy frame.  The canopy was a great $10 garage sale find, that we suspend from the ceiling, so it doesn't affect the hospital bed warranty.  The drapes were included, and we are using them as the front post material.  The back posts are made with the material from the flat bed sheet! We also have rope light suspended with the inside frame of the canopy, to give a wonderful visual affect, that acts as a night light and visual stimulation as well!


Glove box holder and a basket to hold diapers and wipes. Kayli's super cape is in the picture also, hanging from her bed post. 



Immediately next to Kayli's bed, is a towel rack that supports the Kangaroo Joey feeding pump, and Fisher Paykel system.  It is suspended high enough to clear the raising bed side, and the sterile water bag and feeding bad that is suspended from the attached bed IV pole.



The IV pole is hidden behind the canopy post


Next to Kayli's bed, we have an IKEA Lack Wall Shelf unit.  It holds her Suction machine, catheters, pulse ox, and princess decorations.  The portable suction machine fits neatly underneath!




On the shelf, we have a command hook to hold the suction tubing when not in use.
Since we sleep on a different floor level than Kayli does, we have a wireless doorbell in her room.  The wireless doorbell is easy to install, with a command strip. It is installed on the ledge of  the IKEA shelving unit, so it doesn't take up valuable space.  The nurses can ring the doorbell, and it will chime in our room.



We have a flower box under the other window in Kayli's room, to hold her emergency medications, eyeglasses, and hearing aid.



And a bag holder to collect shopping bags, for the bathroom garbage can.

Kayli has a jewelry station in her room.  The backdrop of the jewelry station is fabric that was placed on the wall with spray starch.  It is an easy on/off and doesn't damage the wall! 


Kayli also has shelves in her room, for pictures of the places she's been and all her awards. In her closet, she has hooks below her clothes, for her coats (a space saver). 

Bathroom



Kayli's bathroom is small, so we have to be organized.


Her soft hairbands are on a jewelry bracelet holder, and the harder ones are in a vase


Her hairbows are on a tutu that hangs on the side of her shelving unit, next to the bathroom. (front side of tutu)

(back side of tutu)


PICTURE TO COME

Kayli has a home made nail polish holder (made with a cultery holder, wire hangers, and some spray paint).

PICTURE TO COME
She has a towel holder for a hand towel, paper towels, and drying washclothes.


We use a pull out drawer under her window in the bathroom, for her shampoos, etc.



Kayli's therapy room


Across the hall from Kayli's bedroom, is her therapy room.  It was a bedroom, that we turned into a supply and therapy room.  While Kayli's bedroom has stock of frequently uses medical supplies, we had to find a place to store her extra supplies, and less frequently used medical supplies. We put shelving units in the room's double wide closet.  



We have an armoire in the therapy room, to store her drool pads, blankets, and mattress pads. We decorated the front of the armoire with pictures by taking cork board and covering it with fabric.  Kayli can see her support team, and her nurses can put faces to all the specialists, nurses, and dr's on Kayli's team!


Kayli's exercise ball is set aside, resting on a re-purposed basketball hoop.  We hang her baby link toys on the basketball hoop, for easy access and sight.  The peanut ball (top left) will have a smaller basketball hoop of it's own. 


We built a shelving unit around her switches, sensory toys, and light box dimensions.  Above this, we mounted a large screen tv, and a shelf that holds a DVD player, and a VHS player.


And found a (free) tall shelving unit to store Kayli's musical/auditory assitive technology

Kitchen


We keep syringes, medicine cups, formula containers, etc in these bins to dry and store.  This is in the kitchen at "Kayli's counter". 

Above "Kayli's counter" in the kitchen, is her cabinet.  We store her medications, formula, etc up here, with the daily medications in the pull out white bin (with handle).  We made cheat sheets of medications/times on index cards, and put cork board on the inside door to post them for quick access. 

We also have shelving units in the garage, where we store the bigger boxes of supplies.  We take from the larger garage stock, to fill the indoor storage bins for every day, accessible use.  














Saturday, March 8, 2014

Trisomy Awareness, looking beyond a diagnosis

Trisomy can be a devastating diagnosis, especially when your loved one is first diagnosed. We, as Kayli's parents, worried that we did something to cause Trisomy. We were swiftly assured that we played no active part in causing the Trisomy diagnosis. In rare cases, a parent can be a carrier of Trisomy, and not even know it, but in most cases Trisomy happens as a "fluke" during conception. When the cells divide, they are unevenly divided, and an extra chromosome (partial or full) is formed. (This is why we like to say "Trisomy: when Extraordinary starts at conception".  ) Then when the cells duplicate, they carry that uneven division throughout. The type of Trisomy depends on when the division/duplication happens. If a cell is unevenly divided/duplicated in the first 32 cell divisions, it is likely that the Trisomy will be a full Trisomy. If the uneven division/duplication is later in the process, then the baby is likely to have mosaic (not all the cells in the body will be affected). If a portion of a chromosome is duplicated in the division, the Trisomy is partial (a portion of a third chromosome is formed and duplicated throughout the cells). While there is a great variety and spectrum of Trisomy diagnosis' (Trisomy 1- Trisomy 23, Full, Mosaic, Partial, Translocation, Balanced Translocation, Ring, and many combinations within those diagnosis'), it is important to remember that each person is unique in their own rare diagnosis. No person will be exactly the same, so it is unrealistic to categorize any person under one prognosis based on a diagnosis or statistic, alone. It is vital that the new parents have support while processing the new diagnosis with reportedly grim statistics (that are outdated and questionably accurate in my opinion), and grieving their idea of a perfect child. As the family learns the new challenge of being a parent of a child who will most likely to have special needs, and revise their idea of a "perfect" child, they will also need to be reminded that their child is not a diagnosis, but he/she is still THEIR CHILD. They will not love their child any less, nor should you (as a friend, family member, coworker, etc). There is no manual for the parents, and the baby will not know of the statistics. There is no way of knowing, with great accuracy, what challenges their baby will have. One of the best ways to support the family, is to respect their journey but not fear it, encourage them to get to know their baby (in the womb, stillborn, or alive). No soul is ever wasted, and only a body is to be mourned. If we, or others around us (professionals, friends, or family) find ourselves lost in Kayli's diagnosis, we go back to the list of WHO Kayli is, which pulls us away from the dark depths of the diagnosis she HAS. We strive to stay one step ahead of Kayli, but recognize that only she and God knows of her great plans in life, no matter how long or short it is to be. We share with you, a capture of Kayli, beyond her diagnosis....

All about Kayli, looking beyond her trisomy diagnosis

Life
Nickname~ Sweet Pea, Princess, Ms Thang
Song~ This Little Light of Mine
Birthstone~ diamond
Birth flower~ Sweet Pea
Birth order~ youngest
Symbol~ heart shape
View~ my way or no way at all
Motto~ With God, all things are possible

Favorites
Color~ Purple
Animal~ Jelly Fish
Place to visit~ Aquarium
Mentor~ God
Stuffed Animal~ Eeyore
Music~ Lullabys
Bedtime routine~ Mobile and/or Projector
Therapy~ sit to stander
Jewelry~ earrings
Pastime~ swimming/bathtime, watching jellyfish in LED lighting, or sitting in the tunnel of fish at the aquarium


Milestones since the 32 minutes of anoxia (lack of oxygen)
Potty training (for a couple of months)
Using switches (toys)
Blinking
Smiling
Swallowing
Pulling self up
Can sign "more" and "all done" in her own way
Knowing her surroundings and people in her life
Eye tracking
kicking/pushing away with hands if upset

Bucket List Achievements
Was in the Ocean
Rode a pony
Saw Fireworks
Traveled the country in an RV
Rode on an amusement park ride (two)
Was in a parade
Gave something of herself, freely
Received mail
Sent mail
Sat on Santa's lap
Went to a pumpkin farm
Danced
Has a personally decorated bedroom
Has been tickled
Fell asleep in Mommy's and Daddy's arms
Petted an animal (goat, dog, and ferret)
Dressed up for Halloween (Dorthy from Wizard of Oz, Wonderwoman, and )
Smelled a flower
Got raspberries on her tummy
Felt rain on her face
Laid on Mommy's (and Daddy's) chest
Caught bubbles
Played dress up/dressed up
Walked in God's beauty
Watched fish swim
Swung on a swing
Saw flowers bloom
Watched a parade
Played in a pool
Went to a sporting event (was a part of the crowd)
Hung decorations up on a Christmas tree
Went to a drive in theater
Watched a bonfire
Had a birthday party
Colored in a coloring book
Found Easter eggs
Went to a zoo
Wished upon a star
Was kissed on the forehead
Laughed
Held hands
Made a snow angel
Feels unconditional love
Saw a rainbow
Went to a car show
Heard a live band
Traveled outside her homestate
Floated in a lazy river
Finger painted
Sat inside a petting Zoo (and a goat ate her hearing aid!)


Interesting Facts about Kayli
1. Kayli helped set up a new policy at her school, making it possible for kiddos with trachs to swim in the school's pool!  She was the first kiddo with a trach to ever go in her school's pool!

2. Kayli donated 14" of her hair in December of 2012.  She was the youngest person to ever donate to Wigs for Kids, and with the most amount of hair!

3. Kayli is a very spiritual girl, and has been known to leave her body and visit others.

4. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).

5. Kayli loves to swim, and especially getting her hair wet!

6. Kayli has had 18 surgeries throughout her life, including heart, spine, and abdominal.  Her family has had more than 60 surgeries, and Kayli does not yet "hold the record" for the most surgeries in the family.

7. Kayli has met many others with her same "rare" trisomy diagnosis.

8. Kayli goes to school.  She LOVES school!

9. Kayli's clothes size is age appropriate, but her shoe size is still only 6-12 months!

10. Kayli is the youngest of 7 (including half siblings).

11.  When Kayli was born, she could eat orally, and was fed breast milk for the first 9 months of her life.

12. Kayli's life challenges are directly related to the 32 minutes without oxygen, and have minimal (if anything) to do with Trisomy 18 diagnosis.

13. Kayli's ears were pierced for her first birthday.

14. Kayli has visited 10 states in the USA

15. Kayli wears lipgloss regularly (she has many different flavors to choose from!)

16. Kayli teethed in a typical manner, and she has a full mouth of teeth, but her upper teeth are covered with an overgrowth of gums, caused by a seizure medication.  She will be getting her gums lazored back because the gum overgrowth is causing her jaw to grow upwards instead of out.

17. Kayli had a cleft palate, that closed on it's own and she is allergic to the antihistamine, Zantac (both unheard of, but unique to Kayli)!

18. Kayli does not like the sun, and sneezes every time her eyes are exposed to the sun.

19. Kayli does not like the cracks in the side walk, nor strolling on bricks or any gaps in solid ground.

20. Kayli collects piggy banks and hair bows.

21. Kayli has photo frames and earrings from each monumental place she has visited. The photo frames are placed on shelves in her room, as reminders of family times well spent.