Don't Apologize

Unless you directly caused our differences, don't apologize. Your apology does not make me feel better about our differences. Instead of feeling bad about things, focus on what I can do and help me celebrate those abilities. Recognize my strength. Compliment me. There is nothing to be sorry about, I am making the best of everything and

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happy and I am proud to be me.

Reduce holiday stress by "eating"...

Increase the following foods this holiday season to help keep stress under control:

Fresh veggies – All types and

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all colors, but pay special attention to green leafies.

Fruit – I am a big fan of all fruit, but the lower sugar options are berries, melons, citrus fruits and apples.

Nuts and Seeds – Pumpkin seeds, sesame seeds, sunflower seeds and almonds, brazil nuts, walnuts and cashews, just to name a few.

Whole grains – Oats, brown rice, millet and quinoa.

Proteins - Proteins are found in the plant based choices listed above and can also be found in the following “clean” choices of wild caught fish, free range/antibiotic free chickens and eggs as well as buffalo meat.

The foods listed above in the anti-stress list stimulate the brains production of serotonin. Serotonin creates relaxed and happy feelings. And let’s be honest, happy, relaxed kids = happy, relaxed parents (and vise versa).

Avoid Stress Inducing foods like:

Caffeine– Tea, coffee, sodas and energy drinks all have stimulants. Over stimulation leads to feelings of anxiety and stress.

Sugar – This goes beyond candy and desserts. You will find sugar added to everything from ketchup to pickles, “healthy” yogurts to sports drink.

Refined carbs – White bread, white pasta, and white rice all have the same effect as sugar. They cause blood sugars to spike and to crash which leads to mood swings and a whole host of other issues as your body is working overtime to try to regulate itself.

Fast food – High in fat, preservatives, additives and salt. Low in vitamins and minerals that are essential to help handle stress.

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and more helpful stress reducing info can be found at Stressfreekids.com

Improve bedtime rioting...

From Stressfreekids.com

1. Relax - instead of forcing your child to act asleep. And you can encourage relaxation with things like aromatherapy and eye pillows, stories, calm singing, rocking, massage techniques, etc. I used to take a drop of lavender oil and put it on my child’s sleep spot and they would fall asleep much more easily. Eye pillows over their eyes are soothing and also encourage them to keep their eyes closed. Don’t forget a little massage. A few minutes of massaging someone’s back could knock out an hour off of your bedtime.


2. Set the Mood – It’s important to make the whole energy of the house settle down before bedtime. Dim the lights, lower the volume, shut the TV off. And I would avoid playing simulating video games before bedtime. If you have older children in the house, it’s especially
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   important because the younger children feel the awakeness and the energy of the older kids and it’s very hard to get them to sleep. So focus on relaxation and bringing the energy down a notch and you’ll see sleep happen a lot easier.


3. Create a Peaceful Space – Paint your child’s room a soothing color. Something that will lull them off into dreamland. Bright reds and oranges aren’t usually the best to make a child feel calm. Light blues and greens and tans are calming. Let your children participate in the color selection. Even painting a dolphin on the wall can help them to think of oceans and dolphins and helps them go to sleep easier. A little effort can go a long way.


4. Improve Relationships – With a little effort, you can turn bedtime into a relaxing, fun, bonding experience for you and your child. Before
   
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   you know it you‘ll be high-fiving your husband and have a lot of extra time on your hands to enjoy each other’s company. Sweet dreams.

Soothe a tushie...

Did you know

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gets rid of and prevents practically any type of diaper rash? Also mylanta, milk of magnesia, or bismuth solutions dabbed on with a cotton ball make a soothing diaper rash remedy or skin irritation soother.

Toothpaste removes more than tooth stains...

Toothpaste takes out blood stains!  It sure does!!   Using an old toothbrush bBring a cup of water to dip the brush in so you can get the toothpaste to foam up, and then scrub on the blood stain (if on clothing, bedding, any fabric).  Wash in the washing machine and viola...no more blood!

Tag, it's mine!

Use luggage tags to attach to your child's wheelchair and belongs when they enter the hospital or go to school.  Luggage tags come in a variety of fun kids styles and are great ways to label items without ruining them with permanent stickers or permanent markers.

p.s. We LOVE "Little Me" personalized luggage tags (see inset picture).  Use them to print important medical info too!

Make memories...decorate a pumpkin!

You child doesn't have to have the physical ability to "carve" a pumpkin or go pumpkin picking in order for you to make fun memories together this fall season.  Pick up small "pie" pumpkins from your local grocery store or super-center and a variety of paints, glue, permanent markers, feathers, google eyes, large beads, doll hair, etc. and create funny pumpkin faces out of all of these great craft supplies.

Trick or Treat...But I Don't Eat!!

Be sure to include a variety of non-edible items in with your treats this Halloween!  Dollar stores have great selections of small toys, games, stickers, kids tattoos, bubbles, party favors, and all sorts of fun items for kiddos who cannot eat candy due to medical issues, childhood obesity, diabetes, or special healthcare conditions (such as feeding tubes).

Don't forget to check out the Trick or Treat program on our website for more ideas!

No Judgement

Stop judging! We don't know the whole story and should stop assuming we do. There may be a lot more going on that what we can see. Although someone's plight may seem insignificant to you, it may seem insurmountable to them.

Freshen up...

Throw a laundry dryer sheet into your child's "go bag" or diaper bag to prevent odors from building up!

p.s. This works for school bags, suitcases, dresser drawers, storage chests, and gym bags too!

Say Hello

Say hello to a stranger, or just smile at him/her. We never know what others are going through. Your small act of kindness may be just hat they need to turn a bad day around.

You matter...yes, we mean YOU!

Being a mother is difficult under the best of circumstances...add special needs, medical issues, or undiagnosed conditions and you may begin to feel like motherhood is a curse!  Extreme Motherhood can take its toll if you don't take ANY time to feed your soul, your body, your mind, your heart...
Many of us struggle with the lack of time we have for our marriages, our other children, and especially ourselves in the face of extreme caregiving but you CAN take time for you...even if just ONE MINUTE per day.

• Take time to relax daily - this can mean something as simple as taking a DEEP cleansing breath for a minute.  Do this several times a day to clear your mind of worry and anxiety.


• Keep a journal, blog, start a care page (like CaringBridge.org). Write down your thoughts and feelings. This will give you perspective and serve as a way to release strong feelings.  Write in 1-2 minute increments several times a day, or just once daily - whenever doable.


• Talk with someone to make sense of your situation and your feelings.  Seek supportive groups like Mommies of Miracles, diagnosis specific support groups, etc.


• Feed your spirit. Pray, meditate, or do another activity that makes you feel part of something greater. Take a mental retreat to someplace you have always wanted to visit.  For example pretend you are traveling to Hawaii, focus on sensory experiences like the feel of sand between your toes, the warm salty breeze in your hair, visualize the palm trees swaying in the sun, pretend you hear the the waves of the ocean...etc.


• Watch out for signs of depression and anxiety, and get professional help if needed.  We all have real and justifiable reasons to feel depressed, anxious, overwhelmed, exhausted, and defeated.  Seek out support whenever possible.  Seek out professional help ASAP for any thoughts of harming yourself or others, thoughts that become intrusive or obsessive, or severe mood swings.

Here is your sign...

Do you have a medically fragile child in your home?
Making guests/visitors remove their shoes before entering your home and wash their hands before any contact with your child can be difficult to communicate.  Why not get creative?  You can create fun collages,  computer clip art, posters or even yard signs that ask guests to respect your house rules and protect your child.  You can also create a small "STOP" sign in your front entry way that lists out your requests for visitors.  Have a nice place for guests to place their shoes, and have a bin of new socks available to give to guests to wear (bare feet can be as dirty
as shoes, especially in the summer).  This isn't about offending guests...it is about keeping your child healthy - so don't be afraid to come up with effective ways to communicate your child's needs to anyone who enters your home!

Laugh

Things are not always going to go as planned. Roll with it, and make the best out of what ever may come your way. If you can learn to laugh it off, others will follow your lead. No reason to waste energy (that we don't have) getting upset about things that we can not do anything about.

Use your Noodle!

It's that time of year again where all the summer fun toys
go on clearance racks everywhere.  When out shopping be sure to pick up Pool Noodles which can be used countless ways for children with special needs.

Pool noodles can be used as (or for):
- Positioning rolls (cut to size)
- Slipped under fitted sheets to prevent a child from rolling out of bed
- Cut into discs for large game pieces
- Cut into discs and thrown into a drained/dry child-size swimming pool for a "ball pit"
- Cut into discs of varying size and thrown into a storage bin for a sensory activity
- Physical therapy exercises (lift above head, pick up, put down, wave back and forth...)
- Split in half lengthwise to place over sharp edges on dressers, tables, etc.
- Cut into varying sizes using various colors to use as a sorting activity

Wipe away ink stains...

Rubbing alcohol wipes are a great way to remove permanent ink/markers from the surface of the skin without excess rubbing which can cause skin breakdown.  Gently rub a saturated wipe over the stained area and viola...it disappears.  You can use a combo baby wipe (pr paper towel) and hand sanitizer gel to get the same results!

Save those baby bottles!

Glass baby bottles have many uses
(even if you have never had a child who
drank from a bottle).  Buy them and use them for home use such as mixing
up salad dressings, saving left over sauces/gravies, mixing up powdered
formula, making protein shakes or smoothies, etc.  They are also a very
low cost solution to buying bottled water for tube flushes when you can just bottle up some tap water and take it on the go with you.  Be sure to buy bottles with closed system caps to prevent spillage!

Gentle (non-trach) Suctioning

Red rubber catheters in place of tradition suction catheters
are much more gentle for using with suction machines on
children with fragile (non-trached) airways (mouth, nose, and throat).

Gel Magic = Visual Magic

Dollar stores are great places to find toys and craft supplies to use for sensory projects.  Next time you are in a dollar store be sure to look for gel magic window clings.  Use them on a clear piece of plastic,
an empty plastic frame or a light box for both great tactile, targeting, and visual exercises.   You can easily add them to ipad screens for extra tactile sensory experiences or to help target specific areas to touch.

Practice

For many kids, practicing expected behavior before heading out can make a huge difference. They know what to expect, and when they are prepared they are much more likely to be able to react and respond appropriately. There are great books and tools for practicing social behaviors.

Multi-purpose stuffed animals...

Stuffed animals can make great positioners for children with extra positioning needs.  A teddy bear can make a great hand rest, pillow under the knees, or arm support.  Make sure that stuffed animals are not overly large or heavy and NEVER place stuffed animals in a crib or bed with an infant (suffocation hazard).

Hospital Doggy-Bag

During hospital stays, any unused medical supplies, diapers, wipes, diaper creams, hygiene care items, etc. that are left in the room after the stay, bring home with you. As soon as a medical supply or care product enters your child's room, you have been charged for those items...if you don't take them, hospital infection control dictates that these items be thrown away...so take them home and use them for your child as they were intended!

Accept Help

When people ask if there is anything they can do to help, take them up on the offer. Asking someone to check you mail while stuck at the hospital, water your plants, take your spot in carpool, are all things that not only help you out, but generally the people helping (as long as you don't abuse the hospitality) are happy to be able to help.

It's OKAY to Cancel

Don't worry about hurting friend's and family's feelings. If you are not able to go somewhere, cancel. There is no reason to risk the health and/or safety of your child to spare someone's feelings. If they are a real friend and/or family, they will understand.

Less hands, more help!

Arm splints can be used on children not only for therapy but to help prevent extra "assistance" when doing tracheostomy care, replacing gtubes and gtube care, picc line or port care/replacement, snipping finger nails, baths, hairstyling, hair shampooing, hair cuts, etc. We aren't suggesting you restrain your child - NO! - we simply suggest you extend the length of their arm therapy time so that you can get more detailed personal care done without little helping hands!

Pediatric arm splints and immobilizers can be purchased at www.medi-kid.com

Take Extra

Always carry extra. You never know when you will get stuck out longer than planned, spill, or just need more. I always carry extra diapers, medicine, food, and a change of clothes for my little one.

Reuse Packing Paper

We all get tons of boxes per month for our children's supplies - make sure to save the packing paper to use as crafting paper for finger-painting or sensory projects (play in pudding, whipped
cream or even shaving cream).  Bubble wrap also makes a great tactile and auditory sensory activity.  Have your kiddo walk on bubble wrap or help them pop it with their hands.

Save your strength

Using a pill splitter or crusher will help save your wrists and hands
from overuse (or worsening carpal tunnel issues) from the difficult task of attempting to process hard-to-crush medications on your own.  They can be purchased at any mainstream pharmacy or online for under $5.

Soluable Solve

Instead of dissolving Prevacid or other types of "water soluable tablets" in a med cup then trying/failing to pull it all up in the syringe, drop the solutab directly into a big 60ml syringe, replace the plunger, then draw up water. You don't lose any of the medicine this way, and you don't have to wash a med cup!

Homemade Sanitizing Wipe

When sharing equipment that needs to be disinfected (stethoscope, thermometer, etc) if you don't have alcohol wipes you can wipe them down with hand sanitizer placed on a tissue or baby wipe!

Call Ahead

When heading out to a new place call ahead. Let them know that you are coming, and what to expect. You can also find out from them about accessibility, crowds, noise levels, etc. Everyone wins when you call ahead.

Not just a breast pad...

Breast pads can be used to control leaks around extra leaky gtubes.  Just take a pad and a pair of clean scissors and make a cut halfway through the pad.  Wrap around the gtube stoma and secure.  You can tape breast pads around gtube extension connectors (the "Y" port) to help control disconnects and leaks during the night too!

Extra Gloves

Have extra gloves from trach care kits, cath kits or overstock.  Medical gloves are great hand protection for:

- Crafts
- Painting
- House Cleaning
- Gardening
- Raw Meat Handling
- Taking out the Trash
- Yard Work
- Bathroom Cleaning
- Hair Dying
- Clothing Dye
- Hand Washed Laundry
- Car Washing
- Pet Care

Saline "Bullet" Multi-Use

Many parents receive bulk quantities of saline "bullets" (hypertonic saline) per month from their durable medical equipment (DME) supplier to be used for suctioning assistance in kiddos with tracheostomy tubes.  But did you know that Saline Bullets can also be used for the following:

- Contact Lenses Storage and Cleaning
- Healing Wound Wash
- Sterile Rinse for Stoma sites, i.e. gtubes, colostomy, tracheostomy, etc.
- Eye Drops or Eye Rinse
- A nebulized solution to break up thick lung secretions
- Blood Stop (refrigerate saline and droplet on small cuts/scratches to inhibit bleeding)
- Neti Pot Use
- Pet Care (eye, nose, ear drops, wound wash)

No Need to Crush

Instead of crushing pills that are water
or liquid soluble (dissolve quickly), drop
whole pills into an oral syringe and
draw up water into the syringe.  Cap the syringe
(if a cap is available) and let sit until
dissolved.  Give it a good shake
and admin.

DIY Ice/Cold Packs

Using a clean leftover feeding bag (from a mechanical feeding pump)
or thick freezer bag (small quart size) add the following ingredients:

2 cups water
1 cup rubbing alcohol
Food coloring for the blue tint (optional)

Place in the freezer until frozen or gelled.  Use in feeding
backpacks as cold packs or as swelling reduces/boo-boo
aids.

If using a feeding bag, you can tie off the extension line with a thick piece of twine or yarn, though it is not recommended to cut it off (which may cause significant leaks).

 

Banish Lint

Surgical tape makes a great lint remover without
leaving glue residue behind on dark clothing!

Inexpensive Wheelchair Coat/Blanket

Snuggie Brand or Slanket Brand - available online -
reverse blankets with sleeves make inexpensive,
quick, and cute solutions for keeping kiddos
in wheelchairs warm and comfortable in cold temps
or for transport from home to car.
They pack away easily in "Go Bags" too.

Save yourself the time and struggles trying to put a coat on your child in a wheelchair, and save some money too!   (Wheelchair coats start at $100 and up).

Cookie Sheet Play Station

Cookies sheets make a great magnet play
stations for developing fine motor skills, communication, choice making, and good old fashioned play.

DIY Feeding Tube Pads

There are a lot of cute and rather expensive vendors
available for solving the eternal problem of a  leaky stoma.  An easy and inexpensive way of containing leaks is to buy make-up pads at your local pharmacy. Just split them halfway with scissors and tape closed with soft surgical tape around the stoma.

These pads come in LARGE quantities at LOW prices, and you are guaranteed every day (or several times a day) that your child always hasa clean and leak free stoma.

p.s. You can also do this with breast pads for children with larger leaks.

Quick Bib

Purchase a multi-pack of dental clips
(3pk around $8-10 dollars) from Amazon.com or online dental supplier
Create a bib out of washcloths, paper napkins, pillowcases, old t-shirts, chux pads, or use as a bib extender for the bibs your child has outgrown.  Throw one in your child's "go bag" to have one for impromptu restaurant visits, and beyond.

Reuse Old Teething Links

Don't throw away those old teething links your
child has lost interest in!  They make perfect line tamers, bag hangers, and an extra pair of "hands" for holding trash bags open.

EZ Wheelchair Cover

To keep your child's wheelchair clean while in use at home, simply throw a twin size sheet over it.  It fits most pediatric tilt-n-space wheelchairs easily and tucks in well allowing for harness and safety belt use.

Protects chair gears and surfaces from food particles/formula spills and minor "messes".

 

Pee Pee Squeezee...

So your child wears diapers and you need to collect a urine sample..ummm yeah, right?  But how??  Here is a quick trick taught to us by a Pediatric PICU nurse for an easy way to collect a small sterile urine sample.

Place a dry/clean diaper on your child and insert several sterile gauze pads (or sterile cotton balls) into the diaper - enough to absorb a moderate amount of urine.   Once your child has urinated, wash your hands, glove up, remove the gauze pads and gently place them into a NEW sterile 60ml bolus syringe (remove the plunger first).  Place the plunger into the syringe and SQUEEZE the urine out into the testing vile(s) or sterile receptacle.  Discard syringe and supplies.

 

Hang'em High to Dry

Drip dry your cleaned/washed feeding tube extension sets by draping
them over a plastic clothes hanger (kids size are the best and least bulky).  Hang on your microwave handle or kitchen cabinet handle overnight and let them drip dry.

Rwwaaaar!! Make your own Tracheasaurus (Trach Doll or Pet)

Make a toy that looks like your kiddo who uses a trach.  It is as easy as 1, 2, 3!  Simply soak a used trach in pure bleach overnight and rinse thoroughly in cold water until the bleach is rinsed away.  Let air dry.  Cut the stem off the trach (this will spare you from having to damage a toy by poking a hole it it).  Attach new trach ties to the trach and place it tightly on your child's favorite animal toy or doll.  If you have sewing skills you can go the extra mile to sew it in place via the trach ties.  Now your child has a toy just like them!

A mean clean suction machine!

Adding a half capfull of antiseptic mouthwash to a suction canister can not only eliminate odors, but can cut down on bacterial growth and extend the life of your canister use.