Kayli is not guaranteed medical treatments, as you are.

We were recently on a family retreat in KY (about 8 hours from home), when Kayli got seriously ill.  On our long way home, we bagged her, gave her nebs while in the vehicle, and administered other life saving methods while struggling to get her back to her "home hospital", rather than stopping at a hospital on the way home.  For those of you wondering why it was so important that Kayli made it back to her home hospital, we will explain why it is so much more than just being "comfortable" at home settings. Unfortunately, for many families (including ours) it has been quite the challenge to find dr's, nurses, and hospitals who agree to treating kiddos with a trisomy diagnosis (Kayli has Trisomy 18). We struggled against the dr's pressuring us to terminate her pregnancy, even as with every breathe we said we intend on carrying her as far as she will go. It is our faith that God is the only one who knows of Kayli's term here on earth. Kayli is not a loaf of bread, she does not have an expiration date. We have fought since Kayli was in the womb, to get her unbiased medical treatments. At many hospitals, Kayli has been turned away, refused treatments, and we were even told, "she needs to go home and die!". When leaving the state, Kayli's pediatrician has coached us on what to do in the event she gets sick out of state, because it is a known fact that the majority of dr's and hospital across our nation will refuse to care for Kayli, solely based on the trisomy diagnosis she carries. As ridiculous as it sounds, even in this day and age, Kayli has had many DNR's (Do Not Resusitate) placed on her, and in her chart, without our consent, nor knowledge, solely based on the trisomy diagnosis (not based on her as an individual). Kayli has been denied simple things like antibiotics, oxygen, a feeding tube, and even ortho services, simple because she carries an extra chromosome. Imagine if you will, going to the dr or hospital, looking for medical support, and being told they won't give you any antibiotics, because they don't think you will live long anyways (even if you are in your 30's!). Absurd, right?! We want everyone to be aware of the bias, in hopes that one day it will all change! All God's children should be treated as gifts, not as a tragic pregnancy! We've asked the dr's who've refused to treat (or even examine) Kayli, how they can refuse to care for her, when they've taken the dr's oath to do no harm (which in our opinion means not making our daughter suffer through an illness that is easily treated). Their response has been "we will not prolong her death".  What many dr's don't seem to understand, is that we want them to help us give Kayli the best chance for an amazing life, no matter how long she is with us! We want to enjoy her, love her, and care for her while she IS here with us! She is a member of our family, not a statistic. We ask that the medical professionals support our family care plan, whether it is of their personal opinion or not. We hire them solely for their medical opinion. Only God knows His plan for Kayli (and others like her). We have always asked that the medical professionals respect our parental rights, our parental love. We are Kayli's parents, the same as we are our boys' parents. Just as we ask of medical treatments for our boys (each with rare medical conditions as well), we ask for our daughter. We will live with our decisions, every day, for the rest of our lives, even while the dr's end their work day and go home to their own family. We don't want our forever memories to be that something more could have been done to make Kayli's life more pleasurable while still living, yet professionals refused to help her. That would bring anger and resentment, rather than the comfort that the neglectful professionals claim we would have. It has taken us years to find them, but we are proud to say that Kayli's "home hospital" has NEVER focused on the overcasting "doom" of the trisomy diagnosis, but has rallied with us to support and lift Kayli up as a patient, and as a beloved human being. That, dear friends and supporters, is why it was so very important that Kayli made it back to her home hospital, even when she was in such dire need of life saving medical treatments. Unfortunately, Kayli is never guaranteed to be medically treated, as you and your family most certainly are. 

 #trisomy #stopthebias #KaylisKrusade#treatourchildren #Godschildren

You can follow Kayli's story on fb, at Kayli's Krusade, https://www.facebook.com/KaylisKrusade?hc_location=timeline

Illinois Resources

Some of the following resources are restricted to certain areas of Illinois.  Some of the following resources are outside of state funding organizations, with eligibility for IL families.  Please check the websites for more information. 

Ambucs: funding for adaptive bikes, through AmTryke Wish List) http://www.ambucs.org/scholars/

Arc of Illinois: Conference stipends, family support network, family to family health center, Illinois lifespan. http://www.thearcofil.org/

Aubrey Rose Foundation: financial assistance for medical bills not covered by insurance. http://www.aubreyrose.org/

Believe in Tomorrow: educational/recreational and supportive services, helping families reconnect. Hands on Adventures, and hospital and respite housing programs. http://www.believeintomorrow.org/about.html

Blind Citizens: Assistive Technology Fund (ATF) provides funds to cover 50% of the retail price of adaptive devices or software. www.blindcitizens.org/assistive_tech.htm

Camp New Hope:  A family retreat resort in NC.

Cerner- First Hand Foundation: funding for treatment, adaptive equipment, vehicle modifications, etc. not covered by insurance. https://www.cerner.com/About_Cerner/Community_Impact/

Chai Lifeline: trips, hospital stay help, camps, and counseling. http://www.chailifeline.org/

Chicago Hearing Society: Hearing aid bank and help with evaluations. http://www.chicagohearingsociety.org/audiology-clinic-a-hearing-aids/chicago-hearing-society-audiology-clinic-and-hearing-aid-service/hearing-aid-bank

Chicago Lighthouse: advocating, independent living resources, deaf/blind program. http://chicagolighthouse.org/

Children's Charity Fund: funding for adaptive equipment  or education (0-18 years old) http://www.childrenscharityfund.org/

Different IZ Good: Gifts iPhone, iPad, or iPod touches to speech impaired, minimally verbal, or non-verbal persons.  http://differentizgood.org/gift-a-voice/

Different Needz Foundation: grants for medical equipment or services. http://www.differentneedzfoundation.org/

Disabled Children's Relief Fund: assistive technology, vision devices, hearing devices, therapies, etc. http://www.ok.gov/abletech/documents/Sec%204%20Disabled%20Children's%20Relief%20Fund.pdf

Dream Catchers, USA: Outdoor/nature wish organization (fishing/hunting). http://www.dreamcatchersusa.org/

Division of Rehabilitative Services (DRS): Home based support, and home livingprogram assistance. http://www.dhs.state.il.us/page.aspx?item=29736

Faith’s Hope Foundation: Family assistance for expenses for long term hospital stays (food/utilities/car payment/lodging/house payment/property tax/ etc. http://www.faithshopefoundation.org/

First Hand: Displacement assistance, and specialty services or equipment.  Treatments, Equipment, Displacement, vehicle modifications. https://applications.cerner.com/firsthand/

First Transit: Medicaid paid for transportation to/from dr appts.  Also has a program where parents become approved transporters and are reimbursed for mileage. http://www.firsttransit.com/About-Us

Friends of Man: Equipment, Prosthetics, Wheelchairs, mobility equipment/vehicle modifications. http://www.friendsofman.org/ReferOutsideCO.php

Gia Nicole Angel Foundation: funding of specialty item(s) for low income/single parent families.  http://www.giafoundation.com/extensions

Gigi's Playhouse: For Trisomy 21 only.  Events and play dates for kiddos with T21. http://gigisplayhouse.org/

Gracie’s Hope: Funding for HBOT and other treatments/therapies. http://www.gracieshopehyperbarics.com/application/

Grottoes of North America Humanitarian Foundation: Helps cover the costs of dental treatment, including hospital and anesthesia costs when needed, for children with cerebral palsy, muscular dystrophy (and related neuromuscular disorders), organ transplant recipients or those with mental retardation. http://www.hfgrotto.org/programs/the-dental-program/

Hands to Angels: Financial assistance for families facing a rare condition (like Trisomy). http://www.handstoangels.org/index.html

The Hearing impaired Kids Endowment Fund: grants for hearing aids and assistive devices. http://www.thehikefund.org/Application/ApplicationFormsPortal.html

Helping from heaven, the Lexi Kazian Foundation: Lexi's Closet (equipment loan center), funding for adaptive/therapy equipment, and free events. http://www.helpingfromheaven.org/

HIPP progam: State pays insurance deductibles and/or COBRA if elegible for private insurance and on Medicaid. http://www.dhs.state.il.us/page.aspx?item=19239

Illinois Assistive Technology: Assistive technology loan center. http://www.iltech.org/

Illinois Elk's Children's Care Corporation: funding for adaptive equipment, bikes, and services. http://www.illinois-elks.org/ccc/

Internet essentials: $9.95 monthly for home internet for families with kids who qualify for/receive free school lunches. http://www.internetessentials.com/

The Kids Equipment Network:  Funding help for equipment. http://www.tken.org/

Kids on the Go: mobility program through variety- funding for adaptive sports, bikes, and wheelchairs. http://www.varietyofillinois.org/kidsonthego/

Kids Wish Network: Wish granting, hero of the month, toys/clothes/necessities tour, holiday of hope gifts, funeral assistance. http://kidswishnetwork.org/programs/

Kya’s Krusade: Adaptive equipment and therapeutic services funding: http://www.kyaskrusade.org/info/programs-and-services/financial-assistance-program/

The Lindsay Foundation: Financial assistance for seating and transportation equipment, therapies, medical procedures, medical supplies, communicative devices (excludes iPads), and rehabilitative equipment. http://www.lindsayfoundation.org/about.html

Make a Wish: Chicago has one of the biggest/wealthiest chapters of Make a Wish!  If your SN child is considered terminally ill or has a life threatening condition, he/she could qualify for a wish!  Wishes are in 4 categories; to be someone, to meet someone, to go somewhere, or to have something.  http://illinois.wish.org/

Miracle Ear Foundation: Hearing aids for low income after exhausting all resources. http://www.miracle-ear.com/en-us/miracle-ear-foundation/eligibility

Molly Bear Foundation: Supplemental financial assistance for families facing a Trisomy 18 diagnosis. http://www.mollybear.org/

The Morgan Project: Small grants, and gently used disability equipment. http://www.themorganproject.org/

Northern Illinois Special Recreation (NISRA): Year round recreational activities for the disabled. http://www.nisra.org/

Normal Moments: After enrollment, you can ask for a "David".  Normal moments will send volunteers, or hired help for around the house needs (cooking, cleaning, yard work, etc).  They also give Thanksgiving and Christmas dinners to enrolled families, and connect your family with donators for Christmas gifts. http://www.normalmoments.org/

Options & Advocacy: Early Intervention, sibshops, apply for PUNS, life management program. http://www.optionsandadvocacy.org/

The Lindsay Foundation: Financial assistance for seating and transportation equipment, therapies, medical procedures, medical supplies, communicative devices (excludes iPads), and rehabilitative equipment. http://www.lindsayfoundation.org/about.html

Parker Lee Project: Medical supplies, including diapers.  http://www.theparkerleeproject.org/

Parker’s Purpose: Monetary grant up to $1,000. http://parkerspurpose.net/index.php?page=application-for-assistance

Pass It On Center: classifieds for used assistive technology http://passitoncenter.org/locations/SearchResults.aspx

The Prayer Child Foundation: Prayers and other help for children with syndromes or illnesses (emotional, physical, etc) with no fault of their own.  http://prayerchild.org/

Project Reach: Illinois Deaf Blind Services: Technical assistance, training, information, and family support.  They also give away iPads when available. http://www.philiprockcenter.org/

PUNS: A lottery system for a waiver program that gives your family a lump sum of money to spend on nursing, medical equipment, etc. http://www.thearcofil.org/applying-for-services-and-puns

ReachOut Wireless:  Free cell phone/minutes if low income qualified.  https://www.reachoutmobile.com/

Save the Kid Fund, Inc: medical treatment funding, grants for; medications, handicap aids, adaptive bikes, diapers, leg braces, etc. http://www.savethekid.org/ http://www.savethekid.org/

Small Steps in Speech:  Funding for supplemental therapy and treatments for children. http://differentizgood.org/gift-a-voice/

Songs of Love Foundation: a (free) personalized song for children and teens. http://www.songsoflove.org/

Social Security Insurance (SSI): supplemental federal funding. http://www.ssa.gov/pgm/ssi.htm  

Special Needs Assistance Program – Modest grants for medical and therapeutic equipment, not covered by health insurance or in the case of no health insurance, throughout the United States, from birth to age 22. www.snap4kids.org

Special Spaces: Room makeovers.  http://www.specialspaceschicagoland.org/

Starlight Foundation: Hosts Great Escapes, and gives donated tickets to events in the area, for enrolled, special needs families. http://www.starlight.org/

State Waiver programs: There are a various of different waiver in IL. (will update later)

Sunshine Foundation: Wishes for 3-18 y/o. http://www.sunshinefoundation.org/

Thumbuddy Special: funding for adaptive equipment. http://www.thumbuddyspecial.org/

United Healthcare Children's Foundation: funding for adaptive equipment, hearing aids, therapies, etc (quality of life and improvement opportunities) up to $5,000 per year, with a $7,500 lifetime max per child.  http://www.uhccf.org/about/

Used Home Medical Equipment: database of adaptive equipment for sale (search by zipcode) http://usedhme.com/

Western Wishes Foundation USA, Inc: Western themed wishes (rodeo, country concerts, riding horses, etc) http://www.westernwishes.org/

Variety- The Children's Charity of Illinois: funding for adaptive equipment, van and home lifts, adaptive bicycles, and stair lifts. http://www.varietyofillinois.org/

Transitioning to Home Care, Equipment and Supplies

Transitioning to Home Care series

While it is exciting to be leaving the hospital for the first time with your complex child, it can be overwhelming.  One of the stressors is making sure you have all the equipment and supplies needed, for home care.  These are lists of commonly used equipment and supplies for children, including those with any/all of the following: Tracheostomy, Feeding tube, Vent dependent.  The hospital social worker or discharge co-ordinator can help set you up with a DME (durable medical equipment supplier).  For personal recommendations of a DME near you, try asking in your local fb groups.  You will need physician scripts for all home care equipment and supplies, which the co-ordinator can supply to the DME.  Your home care physician should supply the DME with future equipment/supply orders. 

Home Care Equipment:

Air Compressor~ This is to support the function of the Fisher Paykel humidification system. Specific supplies needed to operate: o2 tubing, filter(s). 

Apnea monitor~ Machine used to monitor apnea (pause in breathing) events.  Supplies needed to operate: mask, sensors

Co2 monitor~ Positive air pressure usually used for sleep apnea or airway obstruction.  Supplies needed to operate: trach connector, sensor, mask. 

Concentrator~ A concentrator is oxygen that is continuously being "made" by pulling from the surrounding air.  This is used to either support the Fisher Paykel system, or can be used individually for 02 support in the home. Specific supplies needed to operate: o2 tubing, filter(s). 

Cough Assist~ 

CPAP machine~ Supplies needed to operate: mask, travel bag, car charger, 

CPT wand~

Humidified air system~ called the Fisher Paykel.  This system is used to humidify the tracheostomy airway.  While our noses have hair (filters) to keep humidity in our upper airway, our trachea (mid airway) does not have a natural filter to keep humidity in the airway.  The Fisher Paykel system supplies humidity to keep the airway from drying up, which can cause mucus plugs and/or collapsing of the airway.  Specific supplies needed to operate: heated (coiled) tubing kit, humidified chamber, o2 tubing, sterile o2 bags. 

Mechanical lift (and slings) 

Nebulizer~ a device that delivers breathing treatment medications. Specific supplies needed to operate: nebulizer kit, filter(s).

Oxygen (02) tanks~ portable tanks used for transit, or in the home when a vent and/or humidification is not needed for moments in time. It is good to have o2 tanks for back up in the home as well (for when power goes out).  Tanks come in many sizes, where the higher the alphabetical number, the bigger the tank (more oxygen it holds).  The size "H" tank is too large to use in transit, but hold enough oxygen for back up supply at home.  Another o2 tank option is liquid o2.  This must be prescribed specifically by the physician, and carries extra risks in home care use.  Specific supplies needed to operate: o2 tubing, on/off key, regulator, portable cart and/or wheelchair tank holder.  

Oxygen analyzer~ gives accurate reading of percentage of o2 output. 

Portable concentrator~ a rechargeable concentrator that holds o2.  This can be used in home for emergency backup, or on an airplane (02 tanks are not allowed on the flights).  Specific supplies needed to operate: o2 tubing, battery, wall plug, car charger. 

Pulse oximeter (pulse ox)~ There are two types of pulse ox machines.   Portable (can take with you outside of the home) and Stationary (stays at bedside).  Depending on the pulse oximeter, you are able to monitor oxygen saturations (o2 levels) in the blood, heart rate (some with visual rythm), and/or Co2 levels. The Pediatrician, Cardiologist, and/or the Pulmonology specialist can write the script for this device(s). Specific supplies needed to operate: pulse ox sensors. 

Scale~ If the patient's in/outs are being measured, you will need a scale to weigh diapers/nappers/briefs.  

Shake Vest~ 

Suction machine~ There are two types of suction machines.  Portable (can take with you outside the home) and Stationary (stays at bedside).  The suction (sx) machine is used to clear the airway of secrections (saliva/drooling).  The pediatrician or PCP (primary care physician) can write the script for this device(s).  Specific supplies needed to operate: filter, sx canister, sx tubing, car charger, wall charger, extra battery, sx catheters (oral and/or deep suctioning for trach).

Ventilator (vent)~ Used for dependent breathing support.  Specific supplies needed to operate: white circuit tubing, swivel trach adapter, battery, car charger, bag (for in travel). 

Home Care Supplies: 

Trach/vent care
Trachs
Trach ties
Surgi lube (or KY jelly)
Trach cleaning kits
HME's (heat and moisture exchangers)
Gauze (for stoma), split 2X2 
Medical tape (to secure split gauze)
Trach collar (mask) 
o2 tubing
Heated/coiled tubing 
Humidfied Chambers (for Fisher Paykel/vent systems)
Vent connector pieces
Scissors (to cut trach ties) 

Feedings/GI care
Feeding bags
Formula
Ferrell bags
Mic Key or Mini buttons
Gtube extensions
Syringes (for venting and flushes) 
Chux pads
Diapers
Colostomy bag
Double stick Colostomy tape
Tape measure (for girth) 

Medication care
Crushing syringes/Pill crusher
Pill cutter
Nursing drug book

General Care
Scissors
Flashlight
Tegaderm
Duoderm
Cotton tipped applicators (sterile qtips) 
Saline bullets
Medical tape (paper, transparent, or silk)
Distilled water
Vinegar
Face masks (for care takers)
Protective gowns (for care takers)
Adhesive remover pads
Thermometer
Stethoscope
Blood pressure cuff/kit
Extra batteries for machines 
Toothettes 
Hydrogen Peroxide 
Sterile Gloves


Respiratory Care
Suction tubing
Suction filters
Nebulizer filters
Little Suckers (with or without covers), Nasal suckers, yankauers
Suction catheters (for trach suctioning) (can be sleeved or un-sleeved)
Pulse Oximeter sensors
Sterile water bags for the Fisher Paykel system
Nebulizer kits
Ambu bag
Passi Muir valve
Posey wraps
Aspirator
O2 tanks
Generator (for back up)

Urinary Care
Urinary catheters 
Foley/indwelling with a small bag 
Diapers
Diaper liners

Wound Care
Sanitary napkins (to absorb blood)
Tega derm
Abdominal pads 

Pharmaceutical items
Alcohol wipes
Heparin syringes/flushes
Gauged needles (for PICC lines, and Ports)
Glucose monitor, needles, and strips
Chest port surgical kits
IV supplies (caps, butterfly needles, surgical kit) 
Ketone strips
Sterile water

Conformable casts

Kayli has had 3 surgeries to correct her club feet with tenatomies and joint contracture releases, but with each surgery once she was out of the casts, she recurred (went back to club foot positioning).  This last set of AFO's (ankle foot orthotics), have caused bruising and skin break down, so we met with Kayli's physiatrist ( medical dr who specializes in physical and rehabilitative services for the musculoskeletal system) and PT (physical therapist) to see if there was another more comfortable option. They recommended the Conformable casts.  Kayli went to get fitted last Friday, and went home with them the same day.  The casts are open at the front of the leg, and Velcro'd together for easy access.  We can take Kayli's casts off for bathing, aquatic therapy, and time in the stander.  While in the stander, Kayli will wear her AFO's for firmer support.  So far, Kayli's feet and ankles look like they are healing well, and her feet are still correcting.  We will go back in a couple of weeks, to adjust her feet positioning back into a 90 degree bend.  

The inside of the casts are made of a very soft and plush cotton, so Kayli does not need to wear socks underneath. Between the cotton lining and outer casting, are cotton pads to relieve pressure of the skin breakdown (from the AFO's) and any pressure spots.  The casts will need to be changed every 8-12 weeks, which will be convenient because her PT for this casting is also her aquatic therapist.  We will be able to schedule the appoints back to back, so no extra trips will be needed for casting. 

These conformable casts were an excellent recommendation for Kayli's needs!  We are excited to have found the perfect orthotic support for her!  

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

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. 

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!!! 

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! 

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.