Tuesday, August 25, 2015

When she is in heaven

When she is in heaven

Our daughter was deemed to die, before she was even born, with Trisomy 18.  We fought an uphill battle, fighting for her rights to treatments and life.  Fortunately, we are at a phase of her life, where her medical professionals are handpicked (instead of taking whoever would be willing to help her), and she is flourishing against all odds that come her way. 
Years ago, I made a bucket list for all 4 of our kiddos.  We thought Kayli would have more challenges in marking things off, but we found instead, that she helped us to see all the things we and others take for granted and don’t even put on their bucket list.  To this day, Kayli has done everything on her bucket list, which also consists of all things on her brother’s bucket lists.  Kayli and her brothers have done more in their lives, than many adults have!  My hubby and I find ourselves the challenged ones, as we struggle to think of things to put on her bucket list, so we feel like we’ve given Kayli a full life.  The pressure was on us to do so, since the very first time a fellow human being told us that Kayli would only have a life of suffering and our family of regrets, even while we expressed our desire to not only give birth to our daughter, but to raise her as we do our boys.  The uphill battle has not been about raising a child with a terminal prognosis, nor of a medically influenced childhood….it has been a battle of wills between Kayli and those who had once not believed in her.  It has been a battle of mind, as the thoughts go through our heads; “is this the last time…”.  These thoughts come regularly, as we push Kayli in a swing, take a walk around the block, celebrate her birthday, sit her on a pony, take our cheerleader to her brother’s games, or are admitted to the hospital.  As the years go by, the fear has calmed, but the wonders never cease. 
I have been released of the fear of death, greatly due to the fact that my faith holds me to the understanding that while it is us who will cry, those who die will be fulfilled with peace and love, and free of any judgments, challenges, and harm, once home, with our maker.  While I find peace in Kayli’s, and all of our, imminent death, I find that I’ve refocused on what Kayli will say of us when she lives within God vs her present state of God living within her. 
I wonder if she will tell God she knows of our great love for her.  Is she proud of the choices we’ve made for her?  As I did as a child, will she exclaim what she would do differently in a parental role?  Will she only remember the great times, or will she remember lessons learned?  Would she say she wanted one more ride on the roller coaster, or hayride?  Would she wish she could have climbed that tree on her own?  Would Kayli sit on Jesus’ lap and tell him stories of the greatest moments of her life, or cry because she wasn’t done on earth yet?  Will she vouch for us and beg for us to join her in His kingdom, or will she know of His plan to keep us on earth longer? 
In truth, what will our boys say?  What will we say?  In this way, I think Kayli is no different than we are.  We are all children of God.  We are all challenged and we are blessed.  We’ve adapted, and we’ve been stubborn.  We have struggled, and we have found peace. 

If you were to look at Kayli today, you would see jaw stabilizers in her cheeks, a trach in her throat, eyeglasses on her face, a hearing aid in her ear, a feeding tube in her stomach….and a sparkle in her eyes.  You will see a will to live that is stronger than any other, and a depth to her eyes, that holds the secrets of her will to live.  You won’t see the appreciation for those who care for her every need, but you somehow know it’s there.  If you are open to looking past your expectations of what Kayli’s life “should be”, you will see the life lessons that she’s taught so many, as a selfless token of God’s love.  You will be Blessed to be in the presence of a child who could tell God, as she sits on his lap when arriving in heaven, that she has never caused harm to another, but has only shone them His love.  Kayli is likely to be one of the purest, who will ever go to heaven.  For this reason, many have called her His angel, on earth.  She has been granted the most Blessed of all lives, to be one of His pure souls, here on earth!  She will never sin, as we do.  Her life is simple (not complex like so many in the medical field claim her to be), yet most valued, as she has lived with a purpose, to share God’s love, unconditionally.  She is not the defective result of a fluke at birth, she is perfect.   She is a gift from God.  She is perfect for him, and perfect for us, in every way. 

Thursday, January 22, 2015

Resources to share with,for, and help a grieving family

Resources to share with, for, and help a grieving family: 

Funeral/Burial cost help   (negotiate price of funeral (with funeral home) BEFORE paying with funding assistance)  
1.  Local funeral home (some discount or free services for children)
2.  http://www.prenatalpartnersforlife.org/  (Headstone or Urn for children)
3.  http://www.missfoundation.org/family/funeral.html  (Help setting up and possibly funding a funeral/cremation)
4.  http://www.ehow.com/list_6741160_grants-pay-funeral-costs.html  (grants)
5.  Local churches or charities 
6.  http://kidswishnetwork.org/programs/funeral-assistance/ 
7.  http://www.afoofa.org/  (funeral costs)
8.  http://www.connorkirbymemorial.org/applyforassistance.htm  (Maryland and PA residents only)
9.  http://www.theunforgettables.com/burial-assis.asp  (southern CA only)
10. http:// www.thetearsfoundation.org  (funeral costs) (NJ,CO,SC, or Washington State only)

Setting up support
1. http://www.carecalendar.org/  (meals, sibling childcare, transportation, errands, answer calls/door, play with siblings, dishes, laundry/housework or yardwork, etc)
2. grieving family's local coupon organization (stockpile help)
3. Post an event on facebook and invite others to post Blessings/Memories
4.  Make a photo album/Memory book, print the Blessings/Memories and send one a day, week, or month to the grieving family to fill the handmade book so they can see the impact their child/family had on other's lives for days to come. 
5. Send out information to send pictures to the family's address of their child with yours/your family so they can post it on a board at the services.  
6. http://www.mealtrain.com/  (meals)
7. http://takethemameal.com/ (meals)

1. http://www.giveforward.com/
2. set up a paypal account with/for the family
3. Give out the grieving family's address/set up a po box to receive cards, prayers, monetary gifts
4.  Set up a business account (you as the co account holder) at the family's bank and post donation information with obituary

Gift ideas
angel wings
personalized Christmas ornament (with deceased child's name)
a personalized teddy bear
personalized jewelry
donating to a treasured non profit organization
A scrapbook album of deceased child/memories
send inspirational words/phrases daily or weekly
a prepaid phone card
gas giftcard, fast food gift certificates, movie giftcards
(if coworker) donate vacation/sick time
plant a tree in honor/memory of ....
a personalized garden stone
a framed photo of the deceased child's name in the sand
Reborn doll 


Empty Cradle Broken Heart
I Will Carry You by Angie Smith
Any of Cs Lewis grieving books


DO Allow them to express as much grief as they are able and are willing to share with you. 

DO allow them to express as much unhappiness as they are feeling and willing to share with you.

DO allow them to talk about their loss as much and as often as they want to. 

DO be available. to listen, to run errands, to help with the other children, or whatever else seems needed at the time. 

DO deal with the grieving individual gently and positively. 

DO encourage them to be patient with themselves and not to expect too much of themselves.

DO encourage them to not impose any “shoulds” or “I should be” on themselves. 

DO give special attention to the child's brothers and sisters at the funeral and in the months to come (they are often in need of attention which their parents may not be able to give). 

DO let your genuine concern and caring show.
DO offer specific help such as running errands, helping complete tax or medical forms, or helping to go through their loved one’s belonging.
DO offer to be a friend.
DO recognize that grieving has no time limit and varies from individual to individual both in the way they express their grief and the time required to stabilize.
DO talk about your memories of the deceased child and the special qualities that made the child endearing.
DO tell the family how sorry you are about the child’s death and about the pain they must be feeling.
Acknowledge the death through visits, phone calls, sympathy cards, donations, and flowers. 
DO Remember important days such as birthdays, the death anniversary, Mother's Day, Father's Day, and any other significant day, which may be difficult for the bereaved. A telephone call, visit, or card means a great deal to a bereaved parent.

Make specific offers to help, i.e.
i. I am going to the store. What do you need? 
ii. Can I take your kids on Sunday afternoon?
i. On Thursday I will be bringing by dinner for the family.
ii. I will take your child to skating lessons on Sunday.
iii. Can I come and baby-sit tomorrow evening to give you a break.
iv. Do you want to get out tonight to talk, walk, or both.

DO offer to take the children to schools, birthday parties, and extra-curricular programs.
DO immediately following the loss, take charge of the household and inform family and friends of the tragedy, help answer the phone, help dress and feed the children (if applicable), and set up a meal plan.

DO Call. Call often.

When you call the bereaved, ask, "How are you doing today?"

DO Appreciate that your bereaved relative or friend doesn't always return phone calls right away.
DO appreciate that nothing you say will ever make the bereaved parent sadder than the reality of what has happened to their child.
DO Talk in your natural tone of voice.
DO remember that when you phone, even if it is to only leave a message, the bereaved feel comforted by your efforts.
DO tell the bereaved family how much you care.
DO remember it is usually the simple little things you say or do that mean so much.
DO Listen.
DO continue to support bereaved parents well beyond the acute mourning period, even if it means years..
DO Congratulate the bereaved on good news while appreciating that they still carry a tremendous burden of grief.
DO Find local support through bereavement groups, church, synagogue, bereavement organizations and forward the information to the bereaved family.
DO Be sensitive that being in the presence of other children of similar age to the deceased may make the bereaved parent uncomfortable.
DO Give the bereaved time to resume the activities they participated in before their loss.
DO Know that effort of any kind is appreciated. 
DO Learn how to give good hugs. The bereaved need every heartfelt hug they can get.
DO Expect your relationship with the bereaved to change. When you are bereaved, every relationship is affected in one way or another.

DO Share your own good news with the bereaved. They still want to hear it.

Say any of the following:
i. Call me at any time if you ever need to talk.
ii. I can't begin to imagine how you feel.
iii. I am so sorry for your loss.

DO Feed and walk the dog who has probably been forgotten about.
DO Talk to your children about the loss.
DO Talk to your children about death and the rituals surrounding death.
DO Find the right time and the right materials to broach the discussion of loss and bereavement with your children.
DO Consult with your libraries and bookstores for bereavement reading materials for children.
DO Provide your surviving children with a picture of the departed child as a cherished momento.
DO Give children the option to attend the funeral.
DO Give children the option of visiting at the cemetery.

DON’T avoid mentioning their loss or the child's name out of fear of reminding them of their pain (they haven't forgotten it!).
DON’T change the subject when they mention their dead child.
DON’T tell them what they should feel or do.
DON'T avoid the bereaved parents because you are uncomfortable (being avoided by friends adds pain to an already painful experience.)
DON'T let your friends, family or co-workers grieve alone. There is a tremendous sense of isolation and abandonment during the grief process. You can help by caring, by being there, and by being the best friend you can.
DON'T make any comments which in any way suggest that their loss was their fault.
DON’T point out that at least they have their other children (children are not interchangeable; they can not replace each other).
DON'T say "Your loved one is waiting for you over there," "God wanted him," "It was God's will," or "God knows best."
DON'T say “you can always have another child.”
DON'T say “you should be coping or feeling better by now” or anything else which may seem judgmental about their progress in grieving.
DON'T say that you know how they feel (unless you've experienced their loss yourself you probably don't know how they feel).
DON'T suggest that they should be grateful for their other children. Grief over the loss of one child does not discount the parents’ love and appreciation of their living children.
DON'T tell them not to cry. It hurts us to see them cry and makes us sad. But, by telling them not to cry, we are trying to take their grief away.
DON'T tell them what they should feel or do.
DON'T try to find something positive (e.g. a moral lesson, closer family ties, etc.) about the loss.
DON'T Allow your own fears from preventing you from offering support to the bereaved.
DON'T Fear that bringing up the dead child's name will create sadness.
DON'T Say, "If you need anything call me" because the bereaved don't always know how to call and ask for your support.
DON'T Be afraid if you make your bereaved friend or relative cry.
DON'T Think that good news (family wedding, pregnancy, job promotion, etc.) cancels out grief.
DON'T Have expectations for what bereaved parents should or should not be doing at different times in their grief.
DON'T Forget the overlooked mourners (grandparents, uncles, aunt's, close friends etc.) who need your support too.
DON'T Force bereaved people to talk about their loss. They will engage you when the time is right.

DON'T Find yourself saying any of the following:
i. It was God's will.
ii. It was meant to be.
iii. He's in a better place now.
iv. Time heals all wounds.
v. I know just how you feel.
vi. You are still young enough to have more children.
vii. Are you not over it yet?
viii. At least you have other children.
ix. Your child is in a better place.
x. It was for the best.
xi. Now you will have an angel in heaven.
xii. It could have been worse...
xiii. It's been ______ amount of time and you have to get on with your life.

DON'T Expect grieving parents to be strong and don't compliment them if they seem to be strong.
DON'T Tell a grieving parent how they should feel.
DON'T Be afraid of reminding the parents about the child. They haven't forgotten.
DON'T Be afraid to cry or laugh in front of the bereaved.
DON'T Assume that when a grieving parent is laughing, they are over anything or grieving any less.
DON'T Wait until you know the perfect thing to say. Just say whatever is in your heart or say nothing at all. Sometimes just being there is comfort enough.

DON'T Underestimate the impact of grief on children. Children understand and retain a lot more than they may show.
DON'T Think that children are too young to appreciate loss or death.

Tuesday, December 16, 2014

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

Tuesday, November 11, 2014

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 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/

Sunday, November 9, 2014

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
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
Ferrell bags
Mic Key or Mini buttons
Gtube extensions
Syringes (for venting and flushes) 
Chux pads
Colostomy bag
Double stick Colostomy tape
Tape measure (for girth) 

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

General Care
Cotton tipped applicators (sterile qtips) 
Saline bullets
Medical tape (paper, transparent, or silk)
Distilled water
Face masks (for care takers)
Protective gowns (for care takers)
Adhesive remover pads
Blood pressure cuff/kit
Extra batteries for machines 
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
O2 tanks
Generator (for back up)

Urinary Care
Urinary catheters 
Foley/indwelling with a small bag 
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

Monday, September 8, 2014

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!  

Sunday, July 6, 2014

Therapies for brain injuries/developmental delays

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

Early Intervention;

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


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

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

Currently, Kayli gets 

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

Current/evolving outpatient therapies include

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

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

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

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

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

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

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

Cuevas Medek Exercises

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

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