Tuesday, July 31, 2012

Vacationing with Special Needs: With pictures!

My husband and I were fortunate enough to be able to piggy back onto his sister's family vacation to San Francisco two weeks ago.  This was our first attempt to vacation with Noah and I was full of anxiety up until we had our car packed to the hills with luggage and were on the road heading from Utah to San Francisco California.  So many memories made and a vacation I will never forget.  Each day was packed with adventures and experiences and lessons learned or ideas and questions to Google once I got home :)  I wanted to highlight certain aspects of our trip that I found to be very enlightening and rewarding for us and our sweet Noah.

Road tripping it seems to be a very daunting and long undertaking for any family with a baby but in fact it actually became the PERFECT environment for vision therapy for Noah as well as working on his awareness of his hands and face.  I sat in the back with Noah for the entire trip (my hubby playing our hot chauffeur) with a full bag of toys and gadgets I could use and play with Noah.  He was stuck strapped into his car seat which made it so that he had a very limited environment with very few distractions.  This allowed him to really work hard on the same task or toy for hours really.  Nothing works better for ACC kids than repetition and this offered a wonderful way to make the time fly by as well as allow Noah to work on things.  In the end he learned that he has two hands that can come into mid-line (center of his torso) and he discovered fingers :)  He also learned that there are toys light enough for him to pick up (even for only a second).  What I learned is that I could make many toys out of one bag of stuff and use my imagination to create therapy aids for Noah.  Up to this point he was unable to grasp pretty much anything.  By the time I was done with him he could grasp a few things for more than just a couple seconds.  Rewarding!

This one makes me laugh
attached wrist rattle
rattle free...grasping on his own!
Play-Dough fun

Razbaby teether
My first trick of the trade was to take a wrist rattle, attach a metal bell to it with a safety pin, then once it was attached to Noah's wrist I then slipped the bell inside of this plastic web looking ball toy that cost me $3 to purchase and after about an hour of showing Noah how to use his fingers to get them stuck in the web of the ball I was able to take the wrist rattle off of him and he could use his fingers on their own to grasp the ball.  This sparked many ideas for me and off I went to figure out different ways to stimulate him and get him to figure things out. I then tried to attach this webbed ball into his binkie....um....looked funny and he just didn't get it. I am still trying to work on this one.  I think I am on to something though :)  After the webbed ball stuff I moved onto play-dough.  Did you know that play-dough offers the best "gripping" stuff ever invented.  All I did was mold some play-dough around a few of the toys Noah has never been able to gasp onto and presto!  He was able to grasp them :)  Yay! In addition to the play-dough I had picked up two pacifier looking things.  One was called a Razbaby teether and the other one is called a Tommy Tippie Gummy.  These little gems are perfect for stimulating their oral senses and I would play with them before Noah would eat and it would get his saliva going and stimulated his hunger.  He loves to chew on the handles too.   

After many hours of playing "working" with Noah this was our final outcome.  Mind you this was after a few days and over 20 hours of working with him throughout the vacation but I am SO happy with the results. Please do not mind my dorky baby talk voice as it cannot compete to the cuteness of Noah's adorable coo's and squeals.

keeping warm
soundly sleeping or over stimulation?
San Francisco offered the absolute best climate conditions for all of Noah's symptoms.  It was a cool 65-72 degrees each day which allowed us to keep all of his ice packs and coolers and fans back in the hotel and lessened our heavy packing each day.  We were also able to wrap him up in blankets in his stroller and I was finally able to really use my baby carrier pack that I have not been able to use much because he gets too hot in it.  It was the first time in my entire life that I was thanking God each night and celebrating each day for the cold weather.  All this coolness awakened something in Noah that I cannot describe.  Ever since he has been a totally different baby.  More engaged and interactive.  I love it.  It may have been all the stimulation of the big city as well.  There were so many sights and sounds and smells (oh the smells good/bad).  Noah was perfect on the whole trip...even walking across the Golden Gate Bridge with not even a single fuss and man was it cold on that bridge. Along with the bridge San Francisco offered us many free or inexpensive adventures that were much appreciated on our very tight budget.  We got to meet the "bush man" and the "silver man".  We got to taste all the fresh seafood from the local street vendors (which happen to be really tasty and not gross at all).  We walked the piers and saw all the funny sea lions basking in the two minutes of sun that came each day.  Noah got to taste a ginormous peach that we bought from a fruit stand that was literally the size of a softball.  All the trolley and bus rides were hard to carry his stroller on however with as many people as we had in our group it took us seconds to hand off each bag, collapse the stroller, tuck Noah into my carrier pack, and load onto the vehicles.  He enjoyed these rides as they lulled him to sleep and we got to see all the fun sights of the city.

can we count this as his first time touching the beach?
The Beach...oh the beach.  Northern California beaches are not warm...at all!  We expected this but it did not provide the best situation for Noah's first beach experience.  Once again on the road we decided to take a small detour and go see Santa Cruise to basically bring back some of my childhood memories.  It took us awhile to find parking, then to get Noah all situated for the long walk to the beach, and then to unload all of the many things you need for a baby to go to the beach with.  It took us ten minutes of walking to get there, five minutes of tripping in the sand to find an open spot, two minutes to unload all the stuff, one second of Noah's foot touching the sand....and then WHAM!!!  One force of wind came through at the exact same time Noah filled his diaper and the combination of the sand in his eyes along with whatever was waiting to surprise us in his diaper and we were in for a full fledged scream-a-thon.  It was NOT the first beach experience we had hoped for.  After trying to settle him down and not being able to we had to pack everything up and head back for the car.  So long beach....so long Santa Cruise waves and watching the rides on the pier....so long childhood memory remake.

Beach trip failure
still not happy in the car

Aquariums are wonderful....enough said!  Such a calm environment for us as parents and a perfect place for strollers.  You can go anywhere in these places with strollers and Noah liked all the sounds of kids laughing and we are pretty sure he liked the jelly fish rooms with their neon colors and soothing background music. 

At the end of our vacation and the many many hours driving and sight seeing we got home and just vegged out on the couch and all of us fell into a very deep slumber.  It is such a perfect feeling knowing you just experienced a grand adventure and made many memories and reached many new milestones.

We were ALL exhausted!!!!

This is what I wish I was still doing.  Even though it was cold and I was wearing a hoodie and the hotel could be compared to the Bates Motel...it was still on the beach and the sun sets were gorgeous!


Tuesday, July 10, 2012

Pharmacy and Medication: 10 Tips and Tricks

Before Noah was born I was naive enough to think that if I received a prescription I could just hop on over to my local grocery store, turn in the little slip of paper with the illegible signature, and 15-20 minutes later I could walk out with the little white bag in hand and call it good.

Not so much the case when it comes to special needs baby and his many rounds of prescriptions.  I have had to (and will probably continue to) experience one after another pharmacy mishap.

So...I thought I would save you the gas, the headache, and maybe even some anxiety by filling you in on the tips and tricks I have already learned (and am still continuing to learn with each refill). :)

*****revision (please be sure to look at lesson 6 if you only have time to read one)

Lesson 1:  What is a Compound Pharmacy???

A compound pharmacy is one in which they can turn almost every single medication that comes in a pill into a liquid  (or "suspension").  This is very handy when trying to give an infant any type of medication. 

****I only learned of such a pharmacy after already filling and paying for a bottle of medication that came in these massive pills and had to ask the pharmacist how to then give my infant these pills before he said "oh...you will actually have to call and have that made at a Compound Pharmacy."
Notice the cool topper on the bottle...lesson 3
PROS: They can put flavoring into the liquid to help mask the bitter flavor that most medications spring on you. (be careful to double check that the flavor you are choosing and the medication being ordered does not counteract one another as is the case with one of Noah's prescriptions).

CONS:I am not sure how other states work but I have found that locally most of the compound pharmacies are small family owned places where most everyone is related.  The problem with these types of pharmacies is that because they are small and family owned they also have very limited hours (say M-F 9-6)  Pretty much the only time my husband and I can pick up anything at these places is by rushing during our lunch hour since they are only open during work hours and also closed the entire weekend.  Another issue I have with these pharmacies is that you have to literally call ahead almost 3 full days to get anything made on time.  Good luck trying to fill a prescription around any type of holiday or close to a weekend either because it seems that most of the employees and pharmacists have a very laid back attitude and do not seem to feel the need to get things done on time.  I am not just talking about one place either.  I have now had to experience this with a few different compound pharmacies.  So please please please make sure to keep a close eye on all medications and when you are at least 7 days before running out call that day to order a refill.  It really truly does suck if you notice on say a Thursday morning that you only have two days left of a medication that has to be made at a compound pharmacy and then you have to beg and plead for them to put a rush order on the medication to pick it up on their final opening hour of a Friday evening.  (yes...I have begged and pleaded and I don't think they liked that very much).

A final note about many (not all) compounded medications. They usually have to be refrigerated and well shaken before you administer the drug.  This can be a hassle if you want to plan a vacation or all day outing and must pack around a small cooler for a measly bottle of medication to keep it cool. 

Lesson 2:  Syringes (not as easy as one would have thought)

The days of using a medicine dropper or tablespoon seem to be long gone.  New regulations and measurements have made it so that syringes are the preferred method of administering a prescription medication to a child.  The problem with syringes are that you have to flush them after each use so that the sticky liquid doesn't clog them up.  The problem with flushing syringes is that you then have to wipe them down or air them out so that there is not even a single drop of water left inside to haphazardly take the place of that single drop of needed medication.  This then poses a new problem.  Wiping them off all the time and you will eventually wipe off the measurement lines.  Airing them out with the plunger pulled out will make the actual shaft of the syringe shrink ever so slightly and then the plunger starts to get stuck.  This in turn poses a problem with trying to slowly drip medication into your childs mouth and the stuck plunger all the sudden breaks loose and the entire syringe full of medication shoots into the back of their mouths and then in turn cough it back into your face.  Not pleasant for anyone and causes much anxiety not knowing if they coughed out all of it or actually was able to receive their dose.  I ask for a new syringe with each and every single refilled or new prescription. They come in all different sizes.  I prefer to use a 1ml syringe for most of Noah's medications because it is small enough for me to slip it into the back of his cheek and push out the fluid while he is sleeping.  It may take me filling it up many times to get it all in but it is better than having to yank open his mouth wide to fit in a large syringe which scares him then I have to hear him fuss or cry and pray I don't choke him with a much larger amount of fluid at one time. 

***after talking at length with the pharmacist I was told the best method for cleaning syringes is to fill a cup full of warm water (do not just put it under running water from a faucet), put the tip of the syringe into the warm water and suck it up and push it out a couple times.  Then (with the plunger totally pushed all the way in) shake the syringe and then put it in a cup or elevated position for the next use.  Never leave it soaking in water or put it in a sterilizer machine or dish washer.  Also, do not soak up soapy water which can cause residue to coat the inside of the syringe.

I never in my wildest dreams thought I could write at such length about syringes.

Lesson 3:  Bottle Toppers

Not all pharmacies have these and some even charge you for them but always ask for them and find out.  These bottle toppers are these small pieces of round plastic that fit snug inside a prescription liquid medicine bottle at the opening.  They have a small hole in the top that allows only the tip of a syringe to be tightly pushed in to suck out the medicine.  I LOVE THESE.  I don't have to stick the entire syringe inside the bottle and get it all sticky to fish out the tale end of the medicine.  It also is a safe guard in case you happen to trip over your kitchen rug and drop the medicine bottle without its lid on it.  I also love (and kind of makes me feel like I am acting in Grey's Anatomy or ER) when I get to take the medicine bottle, tip it upside down, insert the syringe, and suck out the medicine totally upside down.  :)  It's all about finding the joy in even the smallest of tasks right :) ha ha.

Lesson 4:  ML (milliliter) versus MG (milligram)

Make sure you fully understand the difference between these two.  You may get a prescription of something that is 15 MG/ 1 ML and you are to ordered to take 1 ML. DO NOT confuse the two numbers and accidentally take 15 ML.  This is the simplest of examples.  ALWAYS double check with your prescribing doctor and then triple check that the pharmacist followed the doctors orders precisely.  You are to NEVER assume that pharmacists (or their techs) are making something correctly....always ask.  When in doubt follow what your doctor told you to take.  (EX:  Noah takes 60 MG a day of a medication but that has to be broken down into two 30MG doses.  The mediation was made with a ratio of 15MG per 1 ML.  So I give Noah 2 ML of his medication TWICE a day)  See how this can all be confusing.  Then add about 3+ different medications into the mix and we literally have to have a paper taped to our pantry door to remind us daily to give him the correct dose.

Lesson 5:  Pharmacists and their techs/cashiers are really good listeners (so why warn you)

I warn you of this because I have thought I heard one of my doctors correctly but accidentally confused myself with all the MG vs ML stuff and totally assumed Noah was to take a certain dose of a certain drug.  I was in the wrong.  Yet, because my pharmacist was such a good listener and wanted to make sure I was a happy customer they went ahead and listened to me and made Noah's dosage according to what I told them and not what the doctors orders told them.  This also happened when I had to have one of Noah's Neurology doctor prescriptions refilled late on a Thursday and couldn't get a hold of her so I called his pediatrician that Friday to have them refill it.  They were more than happy to accommodate my wishes but the nurse that called it in called in the wrong dose even though the pharmacist had the original dose already in his computer from the last time he filled it.  So PLEASE once again....double and triple check all dosages and ML and MG are correct. 

Lesson 6:  Call your insurance before you pick up any new prescription

This is the most important lesson I can list regarding pharmacies and prescriptions 

Firstly, if you do not know already, check to see if the medication you are prescribed comes in a generic brand and if your doctor gives you the go-ahead to take the generic brand.  This will save you much $$$$. 

Second, find out if the medication you are having being made into a compound/suspension/liquid form is covered for a FULL MONTH under one co-pay (or for one price).

 Pharmacy's bill a high price to your insurance for compound medications even if you are only billed your specific co-pay amount.  Certain insurances change things up on pharmacies in regards to how much they can bill for one prescription during a one month cycle.  For instance, Noah's seizure medication is the generic version called Toperimate (Topamax).  One month I was able to get a full 30 day supply of this liquid gold for a small price of one generic brand co-pay amount.  The next month when I went to get a refill I was handed a very tiny bottle not even full.  I asked why I was only give such a small amount and was informed that my insurance now will only let the pharmacy fill a 10 day supply at one time because they can only bill the insurance $75 at a time each time I pay a co-pay for each compounded medication.  If they were to make the full 30 days supply they would have to bill my insurance their price of $200 and then my insurance would then bump up this generic drug into another higher category (or tier) and I would then have to pay mucho dollar bills every single month.  So, now I was supposed to call into make a refill every 6-8 days, pick up a ten day supply by paying a co-pay, and then have to do the whole thing over with subsequent payments every single ten days.  So now my one month supply just tripled in price because it was a compounded medication and it didn't matter if it was generic or not. 

I was irate!  I called my insurance myself (just to make sure the pharmacy wasn't trying to pull one over on me) and found out this was all true.  So then I asked to speak directly to a Prescription Insurance Specialist (you have to ask specifically to speak to these types of folks).  After an hours worth of chatting (he was really nice), I found out that this exact same generic seizure medication came in a "sprinkle capsule" form and I could get not only 30 days but 90 days worth for only ONE co-pay amount.  No brainer!  Now that Noah can eat baby food I just open the little capsule, sprinkle in his medication directly into one spoonful of food, and down it goes....for one low co-pay price!  Why didn't the pharmacy inform me that there was this 'other' option.  Well folks...its because they make WAY more $$$ from making compounds.

So long story short.  Your insurance wants to pay out the least amount possible so they will let you know of all the cost saving alternatives to almost every aspect of insurance related questions.  Call them up and find out if the medications you need have 'other' cheaper ways of filling and taking them.

Lesson 7:  Keep a Drug Journal

Keep a log of every single medication (prescribed or over the counter) in a journal or database or even on a napkin.  Just keep a list and track every side effect they have, every dosage change, the dates they went on it or came off it, who prescribed it, what the prescription generic name is as well as the pharmacy prescription refill number located on the bottle, and also the name and phone number to the pharmacy that you are ordering this medication from.  This will save you a lot of brain power when you go into a doctors appointment and they ask you to list all this information. 

Lesson 8:  Do a little Research

I may know a few commercial jingles to a few over the counter drugs but that is about it.  I am not a pharmacist or doctor and have absolutely no idea what goes into any type of medication. Whenever you are given a new mediation go and research it.  Yes, this is a double edge sword because the internet can either be your best friend or your worst enemy.  However, it is good to note possible side effects (most never actually occur but some of them do and it is good to know these).  You will also find if the medication has a generic, what the original use of the drug was (Noah's seizure drug was originally a weight loss drug and a major side effect is loss of appetite- go figure), and if the mediation comes in many different types of forms (liquid, capsules, pills, sprinkles).  You can also research if the medication should or should not be taken with food, if it works better to be taken in the morning or night, or if it interacts with any other type of drug or food even. It's best to know what you are putting in your body or your child's system so become an expert on each new medication being prescribed. Every good pharmacy should include some of this information on a brochure or print out when you pick up your medication but not everything is listed.  It is also really good to find a forum and ask other actual users their thoughts and experiences.  You will be amazed at what you find out that the doctors or pharmacists didn't tell you.

Lesson 9:  How we get Noah to take his medicine

We mask it with other flavors or textures :)  The conventional flavors of cherry and grape are a thing of the past.  Did you know you can have their compounded medications made with flavors like strawberry banana or coconut or even passion fruit???  Yum!  With other medications we pick up at our grocery store pharmacy that taste very bitter we hide in his sweet potatoes or applesauce.  He also seems to take medications better for me when there is some texture to them (this may be because of his Dysphagia and swallowing problems).  So I like to suck up his dose in a syringe and then suck up a bit of baby banana's and he has no idea what is going down.  We have also found that if he is sucking on his pacifier we can slip in a 1ml size syringe on the side and inject the medicine in without him even knowing and he just continues to suck away on his binkie.

Lesson 10:  UMMMM.......forthcoming since I am stuck knowing only 9 right now. But I have about three refills to pick up in the next couple weeks so I am sure I will experience something to talk about by then  :)  Update (7/31/12).  I knew I would come up with something.  It is more of a warning than a trick.  If you were to call and get a compound prescription made, be forewarned that once they actually make it you are stuck buying it.  Even if your doctor calls you to tell you to cancel the prescription.  I battled this for hours the other day trying to get out of having to pay for a prescription that I had compounded. Also, make sure that your insurance company doesn't all of the sudden change the price tiers on your prescriptions without you knowing it.  This is also something I battled the same day.  In the end I ended up paying $42 for a compounded prescription that was only $7 three weeks ago and now I can't even use it.  Please learn from my lessons :)

Monday, July 2, 2012

Medicaid and other Financial programs

update: 7/12/12- just found this website that goes into great detail about assistance programs.  Check it out. 

Like the saying goes..."It is easier to give than to receive" and that saying can't be any truer than to my husband and I.  It is hard to sit down and admit that no matter how hard you work or save there comes a time when you have to just push your pride aside and search for help.

We live a good life.  We have loving family and friends that are our biggest source for strength and support.  We have a loving marriage, a place to call home, a two year old pup that lets us know daily how much she loves us with her many wet kisses....and then just shy of 8 months ago we were given the biggest gift of all...a little boy to call our own....our Noah.  We both work full time at steady jobs, we have two working cars to get us to those jobs, and are fortunate enough to have a health insurance policy provided by our jobs.

Unfortunately,  sometimes all the hard work and blessings just are not enough.  Having a special needs child is costly even with insurance.  As soon as we get one bill paid a few others come in the mail with their empty return envelopes asking for us to fill them up and send them back to pay for this clinic visit or that test or this therapy session.  At first we thought we could totally handle it.  We had insurance and a tiny bit set aside for such reasons but 7 months later and we soon realized just how fast and how costly things truly are.  Juggling insurance claims and co-pays and deposits and prescriptions and whatever else insurance does not cover becomes down right expensive. 

We started to look into any and all programs we could find that could help Noah with his therapy or future costs.  We are not sure if he will need special medical equipment or not but the way things are looking it is a pretty good possibility. Our insurance denied all genetics testing and we have one chance to appeal the denial and so we plan on doing so but have to wait for another four months before we meet with the geneticist and have him write the letter of appeal.  Crossing our fingers and praying that our insurance will accept the appeal and we can get genetics testing for Noah.  We know and understand that it will not change the outcome of his future.  It would just be really nice to know if he does have a specific genetic reason behind all of his diagnosis.  It would be invaluable to find out if we should start looking into other areas of his body if he does have a specific genetic diagnosis that may cause heart problems or liver failure.  It would also be really comforting to know if his diagnosis is inherited and if we could pass along the same diagnosis to any future children we might have.  If the appeal is not accepted then we will have to come up with the funds to pay for these tests on our own (aside from all the other medical bills).  One test can be around $4000.  Yikes! 

These are the programs we have found so far and are trying our hardest to get accepted into. 

Early Intervention Program:  see your specific state or local EIP program
Application Process: One phone call and they had a therapist sent out to our house to evaluate Noah's abilities and go over his medical diagnosis to see if he had qualifying diagnosis's. It was very informal and more of a play date for Noah than an application process.  We filled out the few pages of paperwork, turned in medical documents and financial documents and that was it. 
Outcome: Accepted. We were accepted into the program and set up with three different therapists.  A physical therapist, and occupational/speech therapist, and a vision therapist. 
Thoughts: We have been set up with Utah's Early Intervention Program now for the past five months and that program is wonderful.  It is based off of our annual income and not off insurance so we are billed a set amount once a month for as many therapy visits we can get that month.  (because of recent program funding cuts Noah's visits have been cut down to about 3-4 a month now-----heartbreaking news for us and Noah's development but we will take what we can get).

Medicaid: http://www.medicaid.gov/
Application Process: This was a very lengthy application that took me a couple days to fill out and gather all the specific medical documentation and records requested.  We had to submit three months worth of banks statements and pay stubs.  They asked us all kinds of personal questions like the make and model of our cars, if we rented or owned our home, if we had a retirement plan, savings...ect.  I then had to personally drop off all the paperwork (an entire binder full) to the medicaid office to have them flip through it all and make sure I was not leaving any T uncrossed.
Outcome: Denied.  We were told we own too many "liquid assets" because we do not carry loans on the two vehicles we own.
Thoughts: This seriously made me irate.  Just because we worked out butts off to pay our cars off so that we didn't have so many bills coming in and we get denied for being responsible adults.  ***you can see I am still a bit fumed by this.  According to the disability medicaid rules you are allowed to own one car but not two.  We were also denied because both of us put a few $$$ into a savings plan each month (obviously to help pay all the medical bills but I guess being responsible doesn't matter once again)
If you are planning to apply for Medicaid, be sure that your finances are in order so that you can qualify.  Also, you may want to speak with a Medicaid case worker (our Primary Children’s Hospital has one designated to specifically help parents with their questions and to build a plan – so check out your hospital resources).

Social Security Supplemental Security Income: http://www.ssa.gov/pgm/ssi.htm
Note:  Because we were denied Medicaid we were told we would also be denied SSI for the same reasons so we decided not to waste time by filling out all the application pages knowing we were going to be denied. 

Shriner's Hospital for Children: http://www.shrinershospitalsforchildren.org/
Application Process: A two page application that you print from their website and comes with a detailed instruction manual so you know exactly what they are requesting.  Very easy and took me about an hour to fill out and print.  You will want to include medical information.  I got a signed letter from Noah's doctor outlining all of his conditions and diagnosis to make it easy for them to read instead of having to go through every single record. 
Outcome: Pending.
Thoughts: Because I am a type A personality I went ahead and called to make sure I was sending my application to the correct address (your local Shriner's Hospital).  You will want to make sure you live near a Shriner's hospital because it would be hard to get accepted and then have to fly to another state to get the services.  We are fortunate to live within 30 minutes from a Shriner's hospital in Utah.  If accepted we are hoping they could help pay for therapies and/or medical equipments costs (walkers or wheelchairs..ect). The woman I was speaking with on the phone was extremely friendly and that made my day a whole lot better.

Utah Division of Services for People with Disabilities: http://www.dspd.utah.gov/
Application Process:  This was by far the biggest application to date.  Many pages asking many questions regarding Noah's condition, diagnosis's, doctors, tests, current abilities, ect.  I had to once again submit medical records, signed letters, a copy of Noah's SS card and birth certificate, and all of the paperwork from his Early Intervention Therapists.  They also asked for copies of his xrays.  It cost me $3.00 to mail the large envelope with all of his information in it to them.  It was that heavy.
Outcome: Pending
Thoughts:  I am not sure if this program is called something different in each state. I attached Utah's website in case you wanted to research something similar in your own state.  This program is primarily a long waiting list that we hope to be put on.  If we are accepted that is.  If accepted and then chosen from the extremely long list it could help pay for respite care, Noah's thickener for his food, expensive formulas, diapers when he has outgrown baby diapers, ect.  Basically each state is given a certain amount of money each year.   When they get the money they go to the list and decide who from the list is in the most need and pay for the services needed for that individual.  They go down the list and try to hit as many people as possible until the funds run out.  The funds are usually allocated within a couple months.  When the money is gone...it's gone!  Everyone else just sits on the lost until the next year and hope that their needs are great enough to hold their spot on the list.  If a person applies and their needs are greater your name gets bumped down the list.  I have heard to plan on anywhere from 3-5 years before your name gets picked from the list.
****knowing the history of this list we decided to get Noah on it now as an infant in hopes that when he is older we might get picked and they might help us with the costs of caring for a special needs growing child (adult diapers, wheelchairs, respite care, other special needs costs, ect)

United Healthcare Children's Foundation (medical grants):  http://www.uhccf.org/
Note:  This program helps pay for costs AFTER insurance has covered their portion.  You must have insurance to qualify and you must be a US citizen. You must turn in your most recent IRS tax form to see if you fall within their Adjusted Gross Income level (depending on size of family).  We do not qualify because we do not fit within their criteria but I wanted to list this service so others who do qualify may apply.  They actually pay your medical bills once you get them so you do not actually get money sent to you personally.  You submit your medical bill and they pay them (if you are chosen for the grant).  The amount awarded to an individual within a 12-month period is limited to either $5,000 or 85% of the fund balance, whichever amount is less. Awards to any one individual are limited to a lifetime maximum of $10,000. Grant recipients who are awarded less than $5,000 may re-apply for another grant once the current grant funds have been completely exhausted. The 12-month $5,000 limit (or 85% of the fund balance) and $10,000 lifetime maximum limits apply. An application must be submitted prior to the child's 17th birthday.

I would love to add to this list so please email me if you know of any other programs out there for people to seek assistance.  

Suggested subjects or phrases to google in searching for medical assistance
1.      Medical assistance J  (also add your state or counties name in there as well)
2.      Health Care Costs, Help
3. "insert states name" waivers
4.      Financial medical assistance
5.      Respite care, costs
6.      Medical grants (and then enter “for patient” or “children” or “medical bills” or “for single mothers” ect)
7.      Pennies by the Inch : Primary Childrens Medical Center PCMC Pennies