Things to Know if You’re on the Go

We all spend plenty of time in the car, in waiting rooms, etc. Sometimes you may leave the house and pack enough to be out for 2-4 hours then find yourself still long for home after 6 or more hours. If you have a child with medical needs along with you it can make any outing more challenging. Here are a few tips that can help.

If your child does not do well sitting up for long periods of time and you have to travel or spend more time that your child can tolerate in the car there are some car safety options that a lot of people don’t know about. One is called the E-Z-On Vest. This car seat harness will allow your child to lay down on a bench seat while still be safely secured. If you have a smaller child you may be able to use laying down car seats like the Hope Car Bed. There are a wide variety of special needs car seats that allow for more reclining than typical car seats and that provide additional support in select areas for children that need it.

Carry a stuffed animal, or a few. Different shaped stuffed animals can be used as positioning devices, to hold tubing, I’ve even used them to mop up a spill with there was nothing else available. I can’t even count the number of times we used them as pillows when the exam rooms didn’t have pillows on the tables.

Wipes can be super handy too. If course there is the obvious use with cleaning up diapers, but they can be used to clean up spills, or even to freshen up. We’ve all been there- sitting in the hot car/sun and you know you may smell a little, do a quick armpit wipe and you’ll feel and smell much better!

If your child is in diapers, and you find that you can’t be sure that there will be an accessible changing option while you are out consider carrying a small camping cot or a yoga may in your car. In a pinch these options can be pulled out to provide a clean and comfortable area to change a diaper on the go.

Here are a few other suggestions on items to keep in your car. A package of disposable underpads (these things come in handy for all types of needs), car chargers for any equipment you can’t be without (suction machine, feeding pump, iPad, etc), bottle(s) or water (for use with pills, to drink, for spills, etc), for families here in Texas keep some sort of cooling device (a battery powered fan, a cooling rag, etc). If you have a Go-Bag, be sure to keep it handy when you are out of the house as well.

What is Home Health?

Short answer –
Home Health is ANY medical service provided in one’s home. Home Health can be all types of things. Therapy services, nursing services, aids and attendants and hospice are some common forms of home health.

Therapy Services

Therapy services done in the home are pretty common, especially with children under 3 (still in some sort of early intervention program). Home therapy services can be physical, occupational, speech, vision, development and even play therapy.

Nursing Services

2010In home nursing services are typically what people think of when they hear the term “Home Health.” Nursing services done in the home vary from patient to patient.

There are different levels of nursing as well. Licensed Vocational Nurse (LVN) or Licensed Practical Nurse (LPN) is the first level. A LVN can provide most at home care. In most areas LVNs are not able to start an IV and they are not licensed to write the Plan of Care (POC). The next level of nursing is Registered Nurse (RN) or Bachelors Science Nursing (BSN). An RN can do all of the things an LVN can, with the addition of IVs and writing the POC. The next level is Nurse Practitioner (NP). An NP can do all that an RN can do. In addition, an NP can also write orders and prescriptions and see patients.

  • The most basic form of home nursing is home visits. Home visits are when a nurse comes to the patient’s home and basically just checks in. They take vitals, check that the patient has been getting their medications, and visits with the the family to see if there are any medical needs not being met, questions that need to be answered, or if there is anything that the family needs help doing. Some home visits will include help with some chores around the house. The nurse may help with cooking, cleaning, or even running some errands. Home visits may occur daily, weekly or even monthly. The schedule is determined based on the patient’s needs and doctor recommendations.
  • Another form of home nursing is Private Duty Nursing (PDN) or Skilled Nursing. Private Duty Nursing is a little more involved than home visits. Instead of the nurse checking in on the family, the nurse is scheduled for a shift at the patient’s home. PDN can be as few as 4 hours a week to 168 hours a week (24 hours a day- 7 days a week). The number of hours that are approved will depend on child’s medical needs, the doctors’ recommendations and the individual family’s ability to care for their child.
  • Respite is another use of home nursing. Respite can often be confused with PDN as often it is the same nurses filling the role. Respite is a little different however. PDN can be used when the primary caregiver is working, at school, sleeping, or tending to daily activities. Respite is supposed to be used to provide the primary caregiver with a break. Respite in many states can NOT be used if the primary caregiver is at work or school. Each respite provider and state will have their own guidelines. The best way to think of respite care is to ask yourself, will the primary caregiver get some respite (a break) during this time? If they chose to use their break to clean the house or go to the store, thats up to them, but are they getting a break?

Some nursing agencies offer all types of nursing, while others may only offer one. In addition, some agencies serve only infants and children (pediatrics), some only adults, and some cover the entire population. Each agency is different. It is recommended that before selecting an agency for your home health needs that you research the areas they cover and determine who will best be suited to fit your needs.

Aids & Attendants

On occasion a patient will need help, but may not medically qualify for nursing services. In this case, a family usually relies on aids and attendants. Unlike nursing that requires a license, aids and attendants do not require any type of certification. Aids are typically used to help with Assisted Daily Living (ADL) skills and tasks and administer some medications.

Hospice

Hospice can be found in some nursing agencies or in hospice agencies. Hospice combines Private Duty Nursing with pain management, family counsel, and palliative home care. Hospice used to only refer to patients at the end of life. However, with medical advances it is not uncommon for people to move in and out of hospice programs.

Questions to Ask When Choosing Home Nursing Care

  • Will the nurses assigned to my child’s care all have pediatric nursing experience? What is the skill level I can expect from assigned nurses?
  • Are the nursing hours scheduled according to the needs of my child and my family? How much input do I have regarding the scheduling of hours? Note: Most nursing shifts are based on the timing of the child’s skilled care needs.
  • Does the company guarantee shift coverage? Will I be able to have the nurses that I want? Note: Nursing is usually not a guarantee and there may be unfilled shifts. Therefore, it is important for families to train as many people as possible in your child’s care. Hospital nursing staff or the nursing agency can provide training for family members and friends.
  • How long will my insurance company / Medicaid pay for skilled nurses?
  • Who is available during and after business hours should I have questions or concerns?
  • What happens if I do not want a nurse to return to my home because of personality conflict or problems with the nursing care?
  • Will I be expected to train nurses in the care of my child or do the nurses familiar with the care do that?
  • Will the nurse be able to accompany my child to physician appointments?
  • Will my child be assigned a primary nurse, or do nurses rotate and if so how often?
  • How do nurses communicate with each other about my child’s health status and the nursing care goals?
  • How will my family’s privacy be maintained?

Questions provided by: Cincinnati Children’s Hospital Medical Center’s Special Needs Resource Directory: Home Healthcare.

Saline “Bullet” Multi-Use

If your child uses saline bullets you either have way too many, or never enough. If you have way too many, there are lots of “other” uses that you may or may not be aware of.

Saline bullets are traditionally used to clean out trach tubes, or to help moisten airways when used in nebulizers. We used them a lot in the nebulizer to help break up thick secretions and keep Casey’s lungs more clear.

Did you know that you can actually use them to clean and store your contacts? It’s much easier to travel with a few bullets instead of a full bottle of contact solution. Or if you run out of bullets, you can use general saline contact solution in a pinch. You can use saline bullets for eye drops and eye rinses as well. Many of the OTC eye drops are simply saline, but with the special packaging you pay a lot more.

Stash a few bullets in the car, in your purse, or in the first aid kit. You can use the saline to clean wounds. This is really handy if you are not near clean water. You can keep a few bullets in the fridge too. Cold saline on a bleeding cut will help to slow or stop the bleeding.
My husband uses a Neti Pot. If I forgot to pick up sterile water and/or he runs out of the saline packets he can use a handful of bullets and get the same results on his sinus.

We don’t have a dog, or cat, but here in Austin just about everyone else does. Many people use surplus saline bullets for their pet’s eye drops or wound wash.

Last, but certainly not least, if you still have more saline bullets than you know what do with, consider passing them on to other families. There are MANY online exchange groups where you will be connected with other special needs families that may have what you need, or need what you have. If you can find someone local so there is no shipping involved- even better. Just search for ‘Medical Supply Exchange’ on Facebook or Google and I am sure you can find one near you.

What is Cerebral Palsy (CP)?

Before we get started, a little about myself.  I am NOT a doctor, nor am I a trained medical professional in any way.  I am a mom.  My daughter, Casey, has very complex medical needs.  I joke with other moms of children with complex needs that not only should we all be able to pass the medical tests, but many of us are rewriting the medical books every day.  That being said, I want to help explain Cerebral Palsy (CP) in mom terms.

Take a second and think about the flu.  Every year the CDC is busy working to come up with a new vaccine for the current strand of flu.  There is not a single vaccine that can be reused each year simply because there are many different types of flu.  You can think of CP the same way.  There is not one treatment option as the term CP is very general and can apply to many different things.

According to CerebralPalsy.org CP is defined as:

While cerebral palsy (pronounced seh-ree-brel pawl-zee) is a blanket term commonly referred to as “CP” and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.

Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.

aidsMany people hear the term CP and immediately picture someone sitting in a wheelchair, or struggling to walk with braces and canes.  Sure, those images may be forms of CP, but there is much more to it.  Some people with CP can function without the need for these aids at all.  For some, CP, is not always even present, it may appear as twitching, tremors, or involuntary movements that come and go.

Generally when people are diagnosed with CP they are classified as hyper or hypo tonic.  Hypertonic refers to muscles that are very active, usually making them appear stiff or flexed.  It’s easy to remember this if you think of a term we have all heard many times, hyperactive.  We all know when we hear hyperactive it is usually referring to a child that is always going.  It’s the same thing, hyper (always going) tonic (referring to muscle tone).  Hypotonic refers to muscles that are generally flacid and inactive.  You can remember this by thinking of hypoallergenic.  I live in Austin, Texas (a mecca for allergies).  Many of us search high and low for hypoallergenic products.  Hypo means without or non-reacting.

Terms such as Rigidity, Spasticity and Dystonia are also commonly used to help classify CP.  Rigid, spastic and dystonia are all ways of saying that muscles are stiff (all forms of hypertonic CP).  These three terms are not as easily differentiated as hyper and hypo.  The main thing that differs with these terms is how the stiff muscles react to pressure.  Imagine bending a stiff knee.  When you apply the pressure the knee begins to bend.  In some cases you can get it to a point, then extend it back to the beginning point.  After extension it may be easier to bend on your next attempt, getting loser and easier with each pass.  However, when the motion is stopped the knee will return to its stiff locked position.  This example would be a spastic muscle.  Now picture the same knee.  However, it does not get easier with each pass.  Instead the pressure required to bend and extend the knee remain the same.  When the pressure is stopped the knee remains in the position last met.  This example would be a rigid muscle.  Now picture the knee one more time.  This time as you are trying to bend the knee the opposite leg may start to twitch or the child may arch their spine in response to the pressure on the knee.  This would be an example of dystonia.  Of course there is a LOT more to these different diagnosis.  If you want to know more about how these differ, there is a lot of content online or you can always ask your doctor.

While hypertonic and hypotonic as well as how these muscles react are all part of your CP diagnosis, the muscles affected also contribute to the diagnosis.  Many of us have likely heard the terms quadriplegic and paraplegic.  Quad is four and para is two.  Quadriplegic refers to all four limbs (arms and legs) being affected while paraplegic refers to two limbs (usually the legs, but it can be the right or left side of the body).  The term plegia means paralysis.  This can be a little misleading though.  Some kids are diagnosed with quadroplegia CP and they are not what most of us would think of as having paralysis.  Instead think of paralysis, when referring to CP, as not having full control of a limb or limited to no purposeful movement.  Some children have more manageable CP that affects a smaller muscle group, or is not consistent.  Each child’s CP diagnosis will be unique and may or may not include some of the common terms and classifications I am describing in this article.  Just like there are too many strands of flu to list them all out, there are too many ways that CP affects a child.

brainThe brain is a very mysterious and powerful organ.  Someone once told me that we know more about the brain than any other organ, yet we still can’t even begin to understand it.  We can create synthetic hearts, we can replace almost all other areas of our body.  When it comes to the brain however we still have so much to learn.  CP is a condition of the brain.  The doctors told us when my daughter was first diagnosed that the brain itself is in tact, but the wires are kinked, crossed, missing and flawed.  Her brain may be telling her body to bend her knee, but her body instead flexes every muscle from head to toe.  Conditions of the brain, such as CP, have been studied and are much more understood today than they were even a year ago.  Being that the brain is still very mysterious.  There is not a cure, there is not a prevention, and each CP diagnosis is unique.

There are a few standard treatments for CP.  There is a general treatment plan for hypertonic and another for hypotonic muscles.  Each of these treatment plans is a starting point.  For some people the standard treatments are enough.  However, for many they add to their treatment plan, and for some the standard treatment plans provide no relief or benefit at all.  There are a few off label (not using a drug as it was originally intended) treatments that have been successful with CP.

romRange of motion (ROM) is usually the first thing suggested for a child suspected to have CP.  There is active and passive exercises that can be done.  ROM is basically bending and extending the different joints throughout the body.  ROM can help to prevent stiff muscles from getting stiffer and can help to strengthen floppy muscles.  Any physical or occupational therapist can show you some exercises to do with your child if you are interested in doing some ROM.  ***ROM is used for many other reasons as well.  If your medical team suggest ROM it does not mean that a CP diagnosis in coming.

For many children a doctor (usually an orthopedic doctor) will suggest physical, occupational and/or speech therapy.  The therapist will work to relax and/or strengthen your child’s affected muscles.

In addition to exercise, there are many chemical interventions (medications) that are used.  The most common is Baclofen.  Baclofen is intended to stop or interrupt the signal from the brain to the muscle.  If the medication works as designed it can help to reduce tone dramatically.  Some people that see good results with this medication will have a pump surgically placed to administer the medication directly into their spine.  It is strongly recommended to try this drug orally (or through a feeding tube) or sublingually (under the tongue) before getting the pump.  There are many other drugs in the same class as Baclofen that can be tried if Baclofen does not work.  There are many seizure drugs and anti anxiety medications that are often tried off label to help with CP as well (clonazepam, dantrium, onfi).

Some patients try injected treatments for CP.  Botox injections are pretty common.  A doctor can inject the stiff muscle groups with Botox.  Botox is a controlled form of Botulism and it is designed to temporarily kill a muscles ability to contract.  For some patients that do not see results with Botox, Lidocaine is sometimes suggested.  Lidocaine is temporary just like Botox, but instead of stopping the ability to contract, Lidocaine numbs the area and puts the muscle to sleep so that the contraction signal is not received.

Surgery is sometime suggested as an option for CP.  Some surgeons can cut or lengthen muscles to help relax them and provide relief.  With all medications, injections, therapy treatments and surgeries there are potential risks and side effects.  It is up to each of us to weigh the pros and cons and determine what is best for our child.

There are some children that try all of the treatments (on and off label) and nothing helps.  It can be very defeating to try one after another and not see any benefit.  Each year new medications are being created and the medical community is learning more about the brain every day.  You may not have an effective treatment today, but there may be one just around the corner.

I have heard many parents say that their child is too young to be diagnosed with CP.  This is not entirely true.  Many doctors may wait on giving the official diagnosis, but it can be detected and diagnosed very early.  There are some insurance companies that require the CP diagnosis in order to get certain treatments covered.  A lot of infants/toddlers get these treatments through ECI programs and do not need the diagnosis for insurance reasons until they turn 3 and age out of ECI.  For some minor cases a child can overcome a lot of the CP issues seen early on with therapy and early intervention.  This may be another reason we don’t often see doctors giving a CP diagnosis early.  If you suspect that your child has CP, regardless of age, you can always ask their doctor for his/her opinion.

Getting any diagnosis is scary.  A CP diagnosis can feel like the end of the world.  There are a lot of options out there, no cure, but a lot of treatment options.  You may have to deal with it for the rest of your life.  You CAN live with CP.  Many people with CP live very full lives.  My daughter has a severe form of CP and she is in dance class, she swims, she does all kinds of fun stuff.

***Special thanks to Dr. Vanessa Ven Huizen for double checking my medical explanations.

This content was originally created for and published by Preemie Babies 101.

“Star Thrower” by Loren C. Eiseley

starfishOnce upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “Throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “It made a difference for that one.”

How to Talk to a Special Needs Parent

casey1I am a mother of an amazing little six year old girl, Casey. Some may say she is medically fragile, some say she has special needs, some say disabled, and the list goes on and on.  We say she is Casey (or Princess Casey).  We know when we leave our house that we will draw attention.  Casey is a beautiful little girl and some people notice her simply for that reason.  However, she is also very loud.  She has a suction machine that we have to use frequently to help her breath and she also has stridor.  In addition to the noises we bring into a room we usually travel with an entourage of care providers, a wheelchair, and all kind of other things to draw attention our way.

It used to be hard for us to go out.  We were not comfortable with the stares and questions or comments.  However, over the years we have figured it out as best as we can and we can now enjoy going out with Casey.  For the most we have found that when people are staring it is not with malice, but curiosity.  Most of the questions and comments are said with good intentions. There are a few exceptions of course, and those hurt, but most people are very welcoming to all of us and happy to meet Casey and hear her story.  We do find that some people may want to talk to us, but are worried that they may say something to offend us so instead they sit back (and often they end up just staring).

Most people are aware that the R-word is not acceptable, and some people have heard about and try to follow the People First Language.  These are great tools to know what is going to offend someone for sure, but I hope with this article that I can make it even easier for you.

casey2First thing first, we are parents just like you.  We are proud of children.  We want to protect our children and give them as many wonderful life experiences as possible.  This is true for all parents, regardless of our child’s abilities.  Some of us may need to modify experiences in order for them to be safe or accessible for our children, and some of us may have to miss out on a few, but we want to see our children happy- just like any other parent.  Our kids are just like other kids.  They like cartoons, music, tickles, books, etc.  They would rather talk about ‘My Little Pony’ than politics.  When they are upset they want their parent to comfort them.  I think if you keep this in mind, it will make interacting with families of special needs children a little more natural.

Here are a few more tips and examples:

Don’t assume you know ANYTHING about a child.  Just because my daughter sounds like she is snoring from the stridor does not mean she has a cold or is asleep.  I wish I had a dollar for every time someone looked at her and asked “Does she have a cold?”

BAD:

  • Does she have a cold?
  • He has Down Syndrome.  My sister’s friend’s cousin… has Down Syndrome too.
  • Oh gosh, he is really throwing a fit, he must have autism, right?

GOOD:

  • How old is she?
  • I have a little boy that like’s trains too (if the child is holding a train or something).
  • That’s such a pretty shirt, is pink your favorite color?

As you can see, the ‘GOOD’ examples are things you would say to ANY OTHER parent.  After you break the ice and talk with a parent of a child with special needs let them decide if they want to share more about their child’s condition.  You may be right in guessing the diagnosis, but the child is so much more than their condition.  Notice the child for being a child.

NEVER ask what is ‘wrong’ with a child.  Our children are not broken, they are just different.  This does not make them wrong and a healthy child right.  We have had a few people watch us suction Casey then come up and ask what’s wrong with her to require this activity.

BAD:

  • What’s wrong with him/her?
  • Is he/she sick?
  • Should I call someone for you?
  • Do you have to do that here, can’t you step away?  That’s so gross.

GOOD:

  • I have never seen anything like that (referring to equipment- not the child), what is it?
  • It looks like you are pretty good with that thing (again- referring to equipment), I bet it took a while to get used to.

casey3When you see someone using equipment that you have not seen before, chances are they expect the questions.  Unless they are having a really bad day, or are in a rush, they would much rather you ask a question than sit and stare are them.  Just be sure to ask the question in a respectful manner.  If the device is gross (some of them can be) don’t act disgusted.  We know it’s gross, we don’t like doing it any more than you want to see it.  Bottom line is, whatever it is HAS to be done.  The suction tools we use pull out some gross stuff.  We try to keep those out of site, and covered, but there are times when we cannot avoid it.  You being grossed out about it is not going to help anything.  If you are grossed out by something, look away.

We are NOT heroes.  We think our kids are, but we are parents.  We are doing what anyone else in our shoes would do.  It’s hard to put yourself in our shoes.  We get that, but if you want to praise anyone, we would prefer you praise our kids.

BAD:

  • Wow, how do you do all this?
  • I don’t think I could do this at all.

GOOD:

  • I’m impressed, you really juggle a lot.
  • Your kid looks so happy; all that you do for him/her is totally paying off.

One last tip- it’s NOT a contest.  Some of us have children with more severe conditions than others, but regardless of the extent we are all going through the same thing.  When our child is diagnosed (or in search of a diagnosis) we end up going through the grief cycle.  The time we spend on each stage or the number of times we cycle through may change depending on our child, but the general feelings are all the same.  I’ve found that I have to explain this a lot to other families of children with special needs.  Early on when I would hear other families devastated by their child walking late, or having a learning disability I would get very angry.  I did not understand how they could act like that was such a huge deal when I would have done anything to have their problem.  I learned over time though, that it’s not about the challenge itself; it’s about the fact that our child has to deal with any challenge.  It’s all very subjective.

BAD:

  • Oh that’s nothing, so what if your child has ADHD at least they walk.
  • I was having such a bad day, but then I thought to myself at least I’m not you. (Yes, I really have heard this one.)
  • How long will this last?  Or how long does he/she have?

GOOD:

  • It’s got to be hard to deal with anything like that.  There are lots of organizations out there that can help get you in touch with other families that have or are going through the same thing.
  • Is there anything I can do?  Don’t ask this unless you intend to follow through.  Things like cooking, cleaning, watching the kids, feeding the dog are all ways that people can help especially while a family may be dealing with a hospital stay, numerous appointments, etc.

Our kids don’t have expiration dates.  Sometimes we are given prognosis on how long our child will be sick and/or live, but these are NEVER things to focus on.  When we are expecting a child to be better in a certain time and they are not this type of question is like a thorn in the parent’s side.  When a child is on borrowed time this type of comment can be a brutal reminder.

Really truly the best way to reach out to a family of a child with special needs is to treat them the same as you would anyone else.  Recognize the parents are doing the best they can (and that if you had to do the same for your child you would).  See the kids as kids, not as a condition or disease.  Questions are okay.  We know our kids look, sound, act different.  We expect questions and many of us are happy to share our children’s stories.  A respectful question is always better than staring.

This content was originally created for and published by Papas of Preemies.

Feeding Tube Tricks

Do you have a child that uses a feeding tube? Do you have to give your child medications, sometimes on the go? If you answered yes, then this tip is for you. Imagine you are away from home and need to give your child his or her medication. Usually you have a medicine cup, water, and the comforts of home to pour in some water and let the pill dissolve in the cup. You forgot to pack cups with you and you don’t want to drop the pill into the bottle of water because you need the water for other things too. Did you know that you can pull the plunger our of the syringe, drop the pill into the syringe, place the plunger back in place and then pull up water to let the pill dissolve in the syringe itself? Not only will this save you from having to carry extra supplies from home, but it also helps to make sure that the entire pill is given. I can’t begin to count the number of times I pulled back the prevacid after it dissolved to have little grains still hanging out in the bottom of the cup. Once I learned this trick I used it for all kinds of pills. As long as they could dissolve, this was a huge time saver.

Many of our tubies wear cute little tube covers. They are cute way to accessorize, and they are reusable unlike the box of 30 disposable gauze pads that never last the entire month. If your child’s tube leaks at all, you may notice that these pads get STINKY! Even after just a few hours they can be nasty. When you take off the pads to put them into the wash you don’t want to just toss them into the laundry basket. One, they are small and can get lost, but also you don’t want to add the stinky pads to the regular laundry. Lingerie bags can be found at any general store (Target, Walmart, CVS, etc.) in the laundry section. Put your bag in an accessible location at home and when you take off the pad put it directly in the bag. The entire bag will then go into the wash. You will never lose another cute tubie pad.

Collecting Samples

How many times has your child’s doctor told you to collect a urine sample? I could not even begin to count how many times that request was made. When your child is in diapers this can be a lot harder than one may expect. You need the sample to be clean, but it’s not like you can wring out the diaper. There is a way to make this much easier. Cotton balls! Yep, that’s the secret. Keep cotton balls on hand and when you get this request through a handful into the diaper (4-5 should be plenty unless they are the huge ones then 1-2). You can toss the entire cotton ball into the collection cup, or you can glove up and wring out the cotton ball into the cup. It saves some much time waiting to catch your little one midstream in the diaper.

There are collection bags that you may be able to have your doctor order for you too. These are pretty cool. They have a sticky opening that you can adhere to your child’s skin and then it has a plastic baggy that will collect the urine. If you find that you need to collect samples fairly often it may be worth it to ask your doctor to order some of these so that you can keep them on hand. Or, you can buy them directly off of Amazon.

We always kept a handful of collection cups, bags, cotton balls, and even sputum traps on hand. It was so much easier to collect these at home and save a trip to the clinic for collection. Most doctors will have some of these on hand that you can take home with you, and if they don’t, you may be able to get them to order some so your insurance covers it instead of paying out of pocket. You can check medical supply exchange groups as well, other parents may have extras they can share.

Keep It Clean

When you have a child with special needs GERMS are one of your worst enemies. I think most of us would love to put our kids in a bubble during cold and flu season and just keep them there safe from harm. That’s not very realistic though. There are some ways to help reduce germs not only for your child, but from your child too.

Let’s start with that suction machine. You know that the stuff you pull out of your child can be kind of gross. Did you know that after you clean out the canister (daily, hourly, whatever) you can put a capful of mouthwash in the clean canister? By doing this, especially if you use one that has antiseptic, you can reduce the germs and the smell coming from the canister.

One thing that is simple is to keep Lysol (or something similar) wipes handy. When other kids would come over to play I would use these bleach wipes to disinfect any toys, surfaces, etc before they came and after they left. I still have tubs of wipes all over my house and I find TONS of uses for them.

When you go to the clinic or have to spend time in any type of waiting room you can always ask the staff for a mask. It would be great if all sick people wore them, but they don’t. That doesn’t mean you can’t put one on your child. If they don’t have them, let the staff know that your child really can’t be around sick germs and they can usually move you to a clean area to wait away from the crowd and away from the germs.

Shoes is another big one. Be sure to have people take off their shoes when they enter your home. Shoes track in so many germs!

Here’s how I see it. No one wants to be that naggy mom that always cleans the toys, reminds you to wash your hands and take off your shoes. I get it. Let me ask you a question though- would you rather be the naggy mom or would you rather have your kid in the hospital with the flu, RSV, or whatever nasty bug is going around? If there is a chance that my being the nag could have kept my daughter healthier I was totally willing to wear that hat.

Organizations for Kids with Special Needs

We would like to share/feature some FREE items that you can obtain for your little ones. There are many wonderful organizations and individuals who are volunteering their time and efforts to bring joy into the lives of our children. If there are any that we missed, please comment below with details. Thank you to all of these organizations and individuals for doing what you do- it really does make a difference.

Kourageous Kids
Creating tailor-made books for children with terminal illness depicting them as the heroes they are. Hope is precious. Let’s share it.

Sweet Dreams for Kids
Sweet Dreams For Kids is a nonprofit organization that donates new pajamas to kids in the hospital. We want to take the “ICK” out of being SICK.

Pillowcases for Patients
To bring joy and smiles to kids with life-threatening illnesses, check out Pillow Cases for Patients.

Love Quilts
Welcome to the homepage for Love Quilts! We are a cross stitch group that creates cross stitched quilts for children with life threatening or life long illnesses. Love Quilts began in February 1999 and in the fall of 2003 we passed our 100th quilt made! We sent out our 550th quilt in January of 2011!

Please feel free to browse around and view the webpages that have been created for these special children. See the navigation links on the left side of this page for more information you will need to help Love Quilts.

These quilts are being made by a lot of wonderful people from the US and even other countries! These squares are counted cross-stitch only, not stamped or machine stitched. Most children are offered on a sign up basis and you may randomly pick the children you wish to stitch for. We also accept “any child” squares which are saved and used when an odd number of squares come in for a quilt or, when we have enough, to create a full quilt for a child who might not be able to wait the several months it takes to get a quilt made via sign ups.

Blessing Boxes
Hi! We are Sara and Alexis and we are Blessing Boxes. We send boxes of blessings to children with cancer and other life threatning diseases. We are both teenagers and we love helping these kids! If you have any questions message us!

Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.

Project Sweet Peas
Project Sweet Peas is a non-profit organization run by volunteers across the country, who through personal experience have become passionate about providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss.

Our programs support the wellness of families by providing care packages and other services that offer comfort while furthering the bond between parent and child, and treasured keepsakes to families who have experienced a loss.

Through our services, we give from our heart, to inspire families with the hope of tomorrow.

Peach’s Neet Feet
Peach’s Neet Feet donates custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. Every shoe is customized to complement each child’s life, interest, and courageous fight. These personalized, one of a kind gifts lift the spirits of children and their families. When a child is fighting an illness, the whole family is impacted. With the web of caring individuals and the gift of personalized shoes, families are supported and strengthened.

Tubie Friends
For children receiving a feeding tube, a stuffed friend with medical equipment mirroring the child’s can make the entire process less frightening. As much as possible, we mirror the child’s medical interventions to the animal by placing a similar feeding tube, as well as additional medical interventions such as central IV lines, tracheostomy tubes or oxygen cannulas if possible. Additionally, each Tubie Friend comes with a parent letter providing information and listing support groups for feeding tubes.

Tubie Friends were initially intended for people with medical devices and are developmentally under the age of 18. However, we know there is value in an adult, school, siblings, caregivers or doctor having a Tubie Friend as well. Currently, our donations are solicited and collected for children, so we need to use our funds for children. To meet these other needs, we have started a fundraiser that allows anyone to own a Tubie Friend and support our cause at the same time. If you are not requesting a Tubie Friend for a child, please visit our products page and request a Sibling Tubie Friend. If you have questions, please email us.

Songs of Love
The Songs of Love Foundation is a nonprofit organization dedicated to providing personalized songs for children and teens currently facing tough medical, physical or emotional challenges, free of charge.

Cole’s Quilts
A group of stitchers who come together to create hand-made quilts for children who have or have passed away from SMA. Founded in Cole Webb’s honor.

Angels for Hope
Receive or send free crocheted angels, butterflies or smiley faces as a reminder that you/they are not alone and that someone cares!

Pages for Children, Inc.
Pages for Children, Inc. send various kinds of books, birthday cards and appropriate holiday cards (each with a personal message inside), as well as other items.

From Z with Love
Send to care packages to new OI babies and their parents, including altered clothing, lists of resources, testimonials, and some of the types of things Zayana loved. We know she would have wanted to spread her love to all of the other OI babies!

Coping with Laryngomalacia
Through the many different programs, Coping with Laryngomalacia offers families socks, blankets, formula and much more.

Cards for Kids
I’m really excited to start a Facebook page where I can use my love of crafting and making cards and gifts for good causes. I have done this for a long time. Usually I go on Ellen Degeneres’ Facebook page and when I see a story that touches my heart, I do something to brighten that persons life. So I created my own page in hopes people will join me. I really care and just want to make sick kids days brighter. So, if you know someone who could use a card, message me or post their story and I will message you for address and details.

Pop ‘n Grow
Pop ‘n’ Grow is the U.K’s only neonatal clothing charity that supplys it’s unique patented clothing to Neonatal units across the U.K 100% FREE.

Project Linus
First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.”

Little Princess Trust
The Little Princess Trust provides real-hair wigs to boys and girls across the UK and Ireland that have sadly lost their own hair through cancer treatment.

Locks of Love
Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. We meet a unique need for children by using donated hair to create the highest quality hair prosthetics. Most of the children helped by Locks of Love have lost their hair due to a medical condition called alopecia areata, which has no known cause or cure. The prostheses we provide help to restore their self-esteem and their confidence, enabling them to face the world and their peers.

Emmy’s Heart
Emmy’s Heart volunteers create tutus and crowns for BUTTERFLY PRINCESSES and capes and masks for SUPERHEROES undergoing treatment for serious illnesses or disabilities in South Florida.

Butterflies for Courageous Kids
Hey Everyone,my name is Alli and I am 19. I am a sophomore in college battling a Chronic Illness called Gastroparesis (since 2009) and am currently studying to become a nurse for pediatric oncology. I am also the founder of this project and a huge supporter of the Jessie Rees Foundation and encouraging courageous kids to NEGU ( Never Ever Give Up). I want to customize each butterfly to fit each unique kid. I want it to have their interests and likes shown by small drawings and images. These are completely free to courageous fighters and their families! Request away!

Sisters by Heart
Sisters by heart is a group of heart moms who came together during their CHD journey – some of whom were fortunate to meet prior to their CHD warriors arrival. We’ve supported each other in our journeys with our congenital heart defect children. Knowing the challenges and difficulties we faced upon diagnosis, and more so, upon bringing our HLHS fighters into this world, we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is to send care packages to new mothers (and fathers) who are at the beginning of their journey. We want them to know that they are not alone and provide resources and understanding while their child undergoes care and treatment from birth throughout recovery.

Gracie’s Gowns
Gracie’s Gowns make hospital gowns for chronically ill children throughout the US and internationally as well. They are personalized with the child’s name and I match the fabric/gown to what the child likes or is interested in the most.

Feel Better Friends
Feel Better Friends are handmade dolls stuffed with love and well wishes, crafted by volunteers and donated to children battling cancer and other illnesses. These well loved dolls are custom made with the child’s likeness in mind, matching eye and hair color, and replicating the child’s favorite outfit to the best of our ability. They can even be made bald like the child with a little matching wig too! We have over 300 volunteers in 4 countries eagerly making FBF dolls for children in need.

Jars of Hope- Inspired by Caroline
Sending jars of little toys to kids across the US, who are battling various illnesses. Ages 3-12 All inspired by a special little girl that lost her battle to DIPG.

Beads of Courage
Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)

Tiny Superheroes
TinySuperheroes is a superhero cape company with a BIG mission to empower Extraordinary kids as they overcome illness or disability!

The Parker Lee Project
Provide needed medical equipment and supplies to families of children with special needs and who are medically dependent.

There are also many wish programs that design wishes, adventures, etc based on a child’s desire and ability. This article is not about those specific programs, but we will post a separate article in the near future that will highlight the various wish programs and provide details on how to submit your child.

Again, if we left off any gift programs that you are aware of, please comment with details below.