Order your 4 G-tubes before the end of the year

(Cue music) All my bags are packed, I'm ready to go...to the hospital

I keep a bag packed for myself (Ellie's Mom) at all times so I can grab it and head to the hospital.  I can get by without it, but it is nice to have.

Here are the items I like to take...

A carry-on size bag...mine has wheels and a telescoping handle...you could get by with any kind of bag

Meds needed.  My stomach, back and neck go bezerk due to stress in the hospital...lots of fun!

Feminine products in case I have a visit from my Auntie

A modest nightgown

Pair of sweatpants...I can wear them during the day or at night...sometimes both...ha ha!!!

A sweatshirt.  Sometimes it is freezing, like in PICU...brrr.

A t-shirt...useful for day or night

Flip flops...to wear in the shower...paranoid of athlete's foot

A large bottle I can fill with water to drink.  It is hard to leave your child's bed tons of times per day so that you can go down the hall to get yourself a drink of water.  This helps me stay hydrated.

Several pairs of socks to keep my piggies warm.

I also have a spare set of underwear.

It is nice to have a spare set of clothes so that you can use their laundry facilities to wash your clothes.  If I have time sometimes I will throw in a set of everyday clothes, but if not...I can get by with what I have packed.

Other things I bring for myself

I keep all of my hygiene (Makeup, brush, blowdryer, deodorant, etc...) in a separate bag all of the time at home.  I carry it to the bathroom and back to my bedroom.  This does 2 things #1) keeps the kids out of my stuff and #2) it is ready for me to grab at a moments notice.

I also bring my pillow.

And I grab my laptop with charger  (this is my distraction/hobby).  I can blog, facebook, check email, do digital scrapbooking, watch netflix, etc...

Phone and charger.

Exercise clothes and shoes.

My purse which has a special credit card for hospital purchases and health insurance cards.

I will leave my bags in the car while we go through the ED (Emergency Department) and while we get settled in our room.  Then at some point (sometimes not until the next morning) I sneak away and get my things out of the car.

I have a printed list to remember things I need to grab when heading to the hospital.

One thing I have wanted to do but haven't yet is measure their parent beds and cut some foam to that same size.  Then I could bring the foam and make the bed more comfortable for me.

What about you?

Do have a hospital bag ready for you?  For your child?  What do you pack?  What do you like to have with you at the hospital?  Share some tips and advice with us?  Are you inspired to create a hospital bag for yourself now?

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Handicap License Plate/Placard in Utah

So you have a child with disabilities and you are wondering how to get a Handicap License Plate/Placard in Utah.

If your child uses a wheelchair or cannot walk long distances, they qualify.  Here are the actual qualifications...

State law defines a “disabled” person as one who:

• cannot walk 200 feet without stopping to rest;
• cannot walk without the use of, or assistance from, a brace, cane, crutch, another person, prosthetic device, wheelchair or other devices;
• is restricted by lung disease to a specific standard;
• uses portable oxygen;
• has a cardiac condition to a specific standard; or
• is severely limited in his or her ability to walk, due to an arthritic, neurological, or orthopedic condition.

You have 2 options...you can get either
#1) 2 windshield placards,
or
#2) license plates for 1 vehicle plus 1 windshield placard.

The license plates cost $16 as a 1 time fee.  The placards are free.

You must renew the placards every 2 years (but not plates).  To renew your placard you just need to go in person to your local DMV office.  It is free and you do not need your Dr. to sign anything to renew them.  ( I didn't even have my disabled daughter with me when I recently renewed mine).

Here is the general website http://dmv.utah.gov/plates/disabled

You need to have your Dr. fill out this short form (TC 842) http://tax.utah.gov/forms/current/tc-842.pdf and take it in to your local DMV office.  You can also submit it by mail for an extra $4.

Utah Disabled Placards and Plates are honored in other states while traveling.

I have plates on our wheelchair van and keep the placard in her Wheelchair Go Bag.  That way if we travel or she goes in another vehicle in her carseat we have the placard with us.

Even if you have plates or a placard, if you do not have the person with disabilities with you, you should not use a handicap parking space.

What experiences/questions/advice do you have about handicap plates or placards?  Comment below to benefit other parents

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Carseats for older kids with Disabilities

Insurance and/or Medicaid will typically pay for a carseat once the child turns 3 (double check...but I think this was the last I heard) if they have a permanent disability.

You can get a carseat paid for even if they have a wheelchair they travel in.  We use ours as a backup when our wheelchair van is in the shop, so we can put her in another vehicle (in the carseat).

It is really easy to do.  This is not one that you usually DON'T have to fight for.  Here are the steps...

1.  Call your insurance or medicaid and see what Durable Medical Equipment suppliers (Usually a homecare company) they will cover.  I personally have always used IHC Homecare in SLC.

2.  While you are on the phone with insurance/medicaid you could ask what your covered benefits are regarding covering carseats.

3.  Call the recommended DME company and set up an evaluation appointment with the correct people.  For IHC it is called the "wheelchair shop" or "seating specialists".

4.  The DME will want a prescription (or letter) from your child's Dr., so while you are on the phone with DME ask them for their fax number.

5.   Call your Dr. and tell them you need a prescription (or letter) saying that your child needs a carseat and tell them to make sure and include the child's diagnosis.  Give them the DME fax number and ask them to fax it.  Ask them to call you once it has been faxed.  You can also ask them to mail you a paper copy.

6.  Once the Dr. faxes it in and calls you, call the DME supplier and make sure they received it.

7.  Attend the appointment at DME supplier.  They will measure your child, evaluate their tone (tight and loose muscles) and make a recommendation for a carseat.

8.  The DME will contact your insurance and get the carseat ordered.

9.  Wait for delivery of the carseat.

I believe you can get a new carseat from insurance/medicaid every 5 years.

She is 14 , about 4 feet tall and weighs about 65 lbs.
Yes...I know you shouldn't put things behind their head that didn't come with the carseat...judge all you want...it is the only way to keep her airway clear and her head upright...so we just have to do what we have to do!

We have only ever had Britax, so that is the only one I know about.  It is big and heavy which is a downside, but it also feels really substantial and safe.  They are side impact tested.  It slightly reclines, which is great if kids can't sit up.  I have been happy with the Britax.

Have you gotten a carseat from insurance?  What kind did you get?  What suggestions do you have for other parents?  Did you follow the instructions below?  How did it go?

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Swim Diapers for Older Children with Disabilities

Due to Crypto and other diseases that can be spread while swimming, pools have cracked down on wearing swim diapers for people who are incontinent.  (Although I have only ever had 1 person ask if Ellie was wearing a swim diaper...which is actually really inappropriate for them to ask, but that is another matter entirely)

We purchased this reusable swim diaper from Amazon about 5 years ago.  She has used it probably about 15-20 times in those 5 years.  It has held up beautifully.  It has a water resistant fabric on the outside and a soft fleece inner fabric.  It has strong velcro on both sides.  The velcro sides make it quite adjustable to the person's size.  I feel like I can get a good seal around the legs and the waist with the velcro.

Here are the reasons I like this particular swim diaper (although to be honest I have not tried others)

1.  Durable, has held up really well

2.  Comfortable, soft fleece lining

3.  Good fit with the velcro tabs, can get a good seal around legs and waist

4.  Not too bulky under swim suit

5.  Washable

6.  Velcro instead of pull-on, easier to get on and off

It looks like at the time of posting this blogpost (9/13/16) they are running around $56 on Amazon with shipping.  https://www.amazon.com/Discovery-Trekking-Containment-Medium-29x32-Inch/dp/B004GX5YTY/ref=sr_1_4?ie=UTF8&qid=1473788903&sr=8-4&keywords=discovery+trekking

Directly from the website they run $50-$60

http://www.sosecureproducts.com/

(This is a sister company of Discovery Trekking)

It is kind of pricey...but like I said, it has been extremely durable it hardly looks used...I would pay the price again.

There are sizing charts on both Amazon and the actual website.

Because it is so pricey I wanted to make sure I got the right size.  I called customer service and spoke with someone who walked me through every step of measuring Ellie to help me.  They were really kind and helpful.

Here you can see the swim diaper on Ellie

We also purchased a swim suit 1 size too big.  Then we cut the crotch seam.  

We folded over the fabric to make it stronger and used plastic snaps (so they wouldn't rust) on the crotch.  Swimsuit fabric does not fray, so it does not require any sewing.  Only scissors, the plastic snaps and a snap tool.  We purchased the swimsuit a size larger so that we could have a little extra fabric in the crotch to do this.  (as a note, it may require shortening the straps, but ours did not.)

Having the snaps on the crotch makes it easier to change back and forth from her 

regular brief to her swim brief and her change her brief if she needs a dry one.

 Here are the snaps done up over the swim diaper.

Then you just slip some shorts or a swim skirt over the top and wa-lah, you cannot see the swim diaper or the snaps.

OTHER OPTIONS

Disposable Swim Diapers
Search Amazon for "Disposable Adult Swim Diapers" and you will come up with some options.
I have not tried any of them.
Here are 2 options I found in a quick search on Amazon these or these
Some of the disposable brands I found were:
Swimmates
My Pool Pal

Cheaper Pull-on Reusable Swim Diapers
Search Amazon for Reusable Adult Swim Diapers
There are cheaper reusable swim briefs on Amazon such as this and this and this, that run about $27. I have not tried any others I really love the SOSecure (Discovery Trekking) one I reviewed above and would pay the extra.
These are some of the other reusable brands I found:
Swimsters
My Pool Pal
Swimmates
Kiefer

What about you?  What do you use as a swim diaper for your larger child?  What swimming tips and tricks do you have to share with other parents?  Please comment with any suggestions or questions.

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How to build up your supply of meds for an emergency

There are several ways to build up your supply of meds in case of an emergency.

Ask your Dr. to write your prescription for a higher dosage for the purpose of building up an emergency supply.

Ask you Dr. to write you a one time extra prescription (it may need to be a different dose than normal) to have some on hand for an emergency.

Fill your prescription "early".  Most pharmacies will allow you to fill your prescription at 24 or 28 days instead of 30.  If you always fill before you run out you will be able to create a small stock of extra meds.  If you wait until you run out, you will never get ahead.

Ask your insurance company if they will pay for 90 day prescriptions?  If yes, have your Dr. write for 90 day refills instead of 30.  One the 3rd month you won't have extra, but for month's 1 and 2 you would have an extra month or 2 supply on hand.

When you child is in the hospital they will be getting meds from the inpatient pharmacy.  You can still fill your meds as if you had been taking them at home.  For example.  Let's say you can refill meds at 24 days.  And lets say you are in the hospital for 5 days.  So, if you still fill your meds on the 24th you will now have 5 extra days.

So I recommend putting a reminder on your phone of when to reorder meds and not wait until the bottle gets low.  Order meds by the calendar, not by the usage.

Other than skipping doses (which I am NOT recommending), do you know of any other ways to build up a stock of meds for an emergency?  Please share with us.

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Tips for Parents to Survive While Their Child is in the Hospital

After 14 and a half years and who knows how many hospitalizations with Ellie I have found what works for me to make it through inpatient stays without going crazy (mostly) or murdering a resident (yet)!

You will need to find what works for you, don't feel like you have to do the things that I say.

#1) Breathe.  No seriously!  Focus on your breathing.  Slow your breathing.  Do relaxation exercises,  Deep breaths.  Cleansing Breaths (breathe out the bad energy/thoughts/stress).  And above all just remember to breathe.

#2)  Start a blog.  I only update my daughter's blog when she is having medical problems.  I tell people, when I am not posting, she is doing well.  So I basically only update it when she is in the hospital.  There are several reasons why this helps. REASON 1)  It keeps people from pestering you for information.  I get so sick of telling people the same things 5 million times.  Plus I can't remember who I've told what.  REASON 2) It is journaling out your feelings to help you work through your feelings REASON 3) It is creating a keepsake journal of your hard times that you can look back on.  I like to include lots of pictures.  You can even print off a blog into a book to keep as a keepsake.  Here is a link to Ellie's Medical Blog.  http://elliebellygirl.blogspot.com/

#3)  Find a hobby you can do while sitting in the hospital.  Over the years I have done cross-stitch, digital scrapbooking, hand quilting, and reading.  Something to keep your mind and hands busy.  (They have a library of books you can borrow on the 1st floor of PCH).  PCH Child life can bring a craft for you to do.

#4)  Get up every morning and get ready.  Shower, do your hair, do your makeup.  Get dressed.  Do your laundry (the hospital has facilities for you to use...ask me if you need info for PCH).  It will help you feel better and have more patience.  I look better while inpatient than I do at home...ha ha!!!

#5) Go on a walk or get some exercise every day.  The Jewish Community Center across from Primary Children's allows you to go workout and swim there for free.  Ask about it in the Ronald McDonald Room.  If you are uncomfortable leaving the hospital walk the halls or do some stairs.  You can also walk the bridges that go to Moran and U of U from the 4th floor without going outside.  That being said...I think ideally you should go for your walk outside.  Getting some exercise will help with your endorphins and mood.

#6) Which brings us to... get outside at least once a day.  Breathe some fresh air.  Look at nature. Hospital air is gross and germy...get outside!  I don't do this every day...but I should.  I feel so much better after doing it.

#7)  I try to eat healthy while inpatient.  My bowels are always bonkers in the hospital because of too much stress.  If I try to eat better it helps out the bathroom situation.  I really do feel better when I eat healthy.  (This does NOT always happen....but it is my goal)

#8) I do treat myself to a treat once a day (trust me...it used to be every meal and snacks in between).  I usually choose hospital tapioca...I LOVE THE STUFF!

#9) Focus on the small victories.  ie: increased feeds by 5 mL, opened eyes, smiled, lowered oxygen for 5 minutes, etc...Try not to think about the future.

#10)  Split responsibilities if you have a spouse or someone to help you.  The way we split is that I worry about everything in the hospital and he worries about everything out of the hospital.  So the kids homework, finding childcare, taking care of the house, etc...all falls on him.  We still communicate everything going on at home and in the hospital.  But there is a clear line of
responsibility.

#11)  Talk to your nurse and ask if there is an hour (or 2 if you want it...I usually ask for 2) that you can have privacy.  I put a sign on the door and say "Mom is taking a nap from 2 PM-4 PM, come in if it is an emergency, otherwise, please come back later".  This gives me time to decompress, take a nap, have some alone time without people bursting in every 5 minutes.  In ICU you usually can't get 2 hours straight...but any amount of time is helpful.

#12) Have a hospital bag packed for both you and your child at home at all times.  Them when duty calls, you are prepared with your hygiene, clothes, meds, money, hobbies.

Those are my suggestions.  I would love to hear what helps you.  Please post below.

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Enemas and poop

There are many different methods and medications to get your child to poop.  Pooping is a big deal to a parent of a child with disabilities.

Our current regimen consists of senna twice a day, magnesium citrate every other day and an Adult Saline Enema (Generic) daily (also known as a fleet enema).  We also do manual stimulation.

Unfortunately insurance will not cover enemas.

We have found the best pricing at Smiths and Walmart (even better than online).  They run about $1.44 for a 2 pack of generic.  So that comes out to a little more than 70 cents per enema.  We will usually buy them out of their whole stock.  But they usually only stock about 5 packages at a time.

We used to do suppositories.  Our Special Care Dr. taught us that when you place the suppository you need to push it to the side so it is touching the person (inside of them).  This helps the suppository to melt and so it's not just randomly floating around inside them in a sea of poop.  And if you are using a suppository for medicinal benefits (such as tylenol suppositories) it allows the medication to absorb into the body because it is actually touching the body.

Manual stimulation is where the caregiver helps to stimulate the rectum into opening.  I would only do this if you have tried many other methods of getting them to poop.  It is gross and awkward...but has been really helpful for my daughter.  The child is placed on chux.  The child is rolled onto their side facing away from you so you can see their bum.  The caregiver puts gloves on.  The caregiver puts lube (KY) on their pointer finger and puts the finger into their rectum.  The caregiver bends their finger so it is running against the inside wall of the child's rectum.  Circle the rectum with the finger several times until you feel the rectum relax.  The poop will now come out freely once they have relaxed.  (At least this is the way it works for us.)  We learned this method from our Special Care Dr. (Comprehensive Care).  It is also called digital stimulation.  We now do manual stimulation every other day in order to stay on top of the poop train.

Do you have any poop tips and tricks?  Where do you buy your enemas?

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Teeth Grinding

I am excited. I just found these bite blocks that they use at my local Children's Hospital. You put the green part between their back molars and the white part sticks out of their mouth. I sterilize mine in bottle sterilizer but I'm sure you could use a dishwasher.

Ellie grinds her teeth when she has an ear infection. Some kids grind for sensory stimulation.

I acquired my bite block from an inpatient hospital stay. But I have only had that one and didn't think I could get more. So I was excited to find these.

They are really strong, Ellie has been unable to damage hers with her teeth grinding. As a warning, if she continues to bite, sometimes it does make her gums bleed and then I just move it to the other side of her mouth. It is never terrible damage to her gums and mouth...just a little bleeding.

I have also tried a football mouthguard. Which works OK, but she can get it out of mouth more easily and it melted when I put it in the bottle sterilizer/dishwasher. Plus I paid $20 for a nice one. If you are going to go that route I would suggest trying the mouthguard half in their mouth between the molars and half out of their mouth. you can hold it in place more easily without getting bitten.

The first place I found was Edgepark Surgical 1-800-321-0591. They needed a Dr. prescription to sell them to me and they were willing to bill insurance. I said I would just pay cash because they were only $4.98 including shipping. But they still needed a Dr. prescription which is OK, her Dr. doesn't have a problem with it.

Then I also found them on Amazon which didn't require a Dr. prescription at all. When I posted this they were $5.71, so just a little more than Edgepark.

https://www.amazon.com/Teleflex-Medical-Inc-Pharyngeal-Biteguard/dp/B00RR5VIPC/ref=sr_1_5?ie=UTF8&qid=1472051887&sr=8-5&keywords=teleflex+bite

I have also been using this mouthguard holder so I could carry the biteblock around in her bag more easily. It was around $8

https://www.amazon.com/Shock-Doctor-Anti-Microbial-Mouthguard-Case/dp/B007AQ3MMK/ref=sr_1_1?ie=UTF8&qid=1472052944&sr=8-1&keywords=mouthguard+holder

How do you deal with your child's teeth grinding? Please share below.

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Service Dog/Seizure Dog

I was recently watching a live podcast and they were talking about service animals.

We do not have a service animal personally, but I thought I'd pass on the information they mentioned.

They said that Canine Companions for Independence was reputable and that the animals were trained and placed FREE of charge. They also said there was a long waiting list.

http://www.cci.org/site/c.cdKGIRNqEmG/b.3978475/k.BED8/Home.htm

A few months ago I was watching BYU-TV, a show called Turning Point. I think this was the episode I watched. They were highlighting a different organization called 4 Paws for Ability. I thought they said it was free also, but I haven't had a chance to rewatch the episode. If you watch it, comment below and let us know. Here is the episode http://www.byutv.org/watch/46e84c7d-79b6-434d-a75a-cbf4b89e8c58/turning-point-4-paws-for-ability

http://4pawsdogs.org/

Do you use a service animal? How do they help you? What organization did you go through? What questions do you have that others may be able to answer?

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A boat versus a fire

Today in church we were talking about the armor protecting the Nephites in Alma 43.  That led to a discussion on them being in tune with the spirit before they were actually in battle (a trial) and prioritizing their time and resources to make the armor.

This also took faith to receive revelation that they needed to make armor and that then to have faith to take action to make the armor.

Noah and Nephi also had faith when they built their boats.  I made a comment in class that I think building the boat would be easier than reading my scriptures and saying my prayers every day.

Another classmate agreed and said that when you are doing something physical, like building a boat, you have a concrete plan and you can see progress and you have a final goal in mind.  But when it comes to spiritual things it is harder because it is like feeding a fire, all day, for the rest of your life.  There is no concrete plan, there is no visual/tangible progress and there is no stopping point in view.  It seems overwhelming and fruitless.

This is how I feel taking care of Ellie sometimes.  It is a never-ending stream of giving to keep her alive and sometimes it feels as if you have nothing left to give.

Spiritually or being a caregiver, how do you renew yourself?  How do you see the progress you are making?  What are the fruits of your labors?  I would love to hear your suggestions.

Here are a few of my ideas...

I love going to an annual conference regarding Ellie's disability.  I look forward to it all year long.  I get to see other people with her same diagnosis who have become my dear friends.

I rely on my weekly datenight and monthly girls night out to keep me sane.

I find hobbies for myself.

I go to school.  It allows me to interact with adults on an intelligent level and have a life where people don't know I have a child with disabilities.

I exercise with a friend 3-4 times a week.  This gives me endorphins and gives me built in friend time.

I blog out my feelings (like this post).

I do not avoid the overwhelming/negative feelings all of the time.  But those are a few coping strategies I use.

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Medicaid Buyout (Medicaid will pay for part of your Insurance Premiums)

Let me make sure you understand 2 terms before I start.  Medicaid is a Federal and State funded Health insurance program.  Private Insurance means insurance you get through work or through a third party that you typically pay premiums and copays and have deductibles.

Medicaid (at least in Utah...I don't know about other states) has a program called a Medicaid Buyout.

It means if you have private insurance for your child with disabilities AND medicaid, then medicaid will reimburse you for part of your monthly private insurance premiums if you qualify.

Medicaid has figured out that they often save money if they become the secondary insurance instead of the primary.  It means they are paying your copays instead of paying your insurance benefits.  If it is cost effective for them, they will help pay your premiums.

We have a Private Insurance "family plan" through my husband's employer.  We pay a regular family premium.  Then the Medicaid Buyout reimburses us about almost half of our monthly premiums.

On our part we are required to send in proof of payment of premiums (for us it is our paystubs).  We just scan them in and email them.

We also have to send in our EOB (Explanation of Benefits) about twice a year. These are the statements you get from your private insurance saying this is how much the Dr. billed and this is how much we paid.  With our insurance we can log onto our insurance online and download all of our EOB's for a certain time period into 1 document which we can just send onto the buyout manager.

Here is a link to the program online. https://medicaid.utah.gov/buyout-program

The link says to contact the department of workforce services to ask about qualifying.  I have had multiple problems with their workers not being fully informed of all programs they offer and/or telling people they don't qualify when they actually do.  So don't give up if your first answer is no.

Have you had success with the buyout program?  What advice do you have for others?

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Huggies

Parents often run into a problem when they start getting diapers paid for by medicaid.  Homecare will ship you out generic diapers.  This is where the problem comes in.  Generic diapers are simply not as good.

Homecare can often order you nicer diapers (Huggies for example).  But you need your Dr. to write a prescription stating huggies are what he is ordering.  He cannot just say diapers or you will not get the huggies.

I know that IHC Homecare in Utah has the capability of ordering Huggies for you.

Have you had success getting name brand diapers paid for?  What companies have you used?  Do you have any other suggestions for other readers?  Please comment to benefit other parents reading.

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Keeping the Pulse Ox Probe in place

Ellie uses a continuous monitoring pulse ox during the night and when she is sick.  There have been nights when we stumble out of bed because of incessant beeping and we are madly increasing oxygen, suctioning, rubbing her chest, etc to get her to breathe and get her sats up.  Then we realize...the pulse ox is not attached and yes, the carpet's oxygen is maintaining a steady 68.  Ha ha.

To resolve this problem we tape the pulse ox probe in place.  We have found that if we leave a little bump in the probe wires (not pulling it tight against her skin) it stays on better and the probes don't wear out as fast.

We prefer the non-sticky probes (we like the velcro kind) they seen to last A LOT longer.  Ellie does not move a lot, but our probes last anywhere from 1-3 months.  I think the more your child moves the faster they wear out.

We use mefix.  Ellie is really sensitive to adhesives, but the mefix does not bother her at all.  I cut up a whole roll at a time and have a little stack of pre-cut mefix ready to go.  There are even lines on the mefix that I cut on that make it the perfect length for this purpose.

On a slightly different note.  I was told when she was little that red fingernail or toenail polish could affect the pulse ox reading.  I have never found this to be the case.

How do you keep your pulse ox probe in place?  What tips do you have for getting an accurate reading?  Please "like" our FB page for more posts about raising a child with severe disabilities.  https://www.facebook.com/SupportedInOurTrials/?ref=aymt_homepage_panel

Packing list

Do you ever take your child with special needs on vacation or camping?  It is a TON TON TON of work.

Ellie uses bipap, oxygen, suction, pulse ox, feeding pump, is cathed, uses a wheelchair, and on and on.  Trust me...I know how difficult it can be. Not only is it hard physically, but I have a hard time committing emotionally.  I have had multiple occasions where vacations have been changed, delayed or cancelled completely due to changes in medical status.  

One thing I have done to lighten my load slightly is to have a packing list saved on my computer to pack for Ellie to go on vacation.  Iwrote it as a camping list, but it is virtually the same list to go to a hotel...but we can leave off the generator and a few other things.  

Some of the things I'm sure only make sense to me...so feel free to ask questions of how we do it, why we do it, why we take certain items etc.

I have found over the last few years that it is easier to pack Ellie's things in the same size of clear bins.  You can see what is inside, group like things and they stack nicely in the car and in the hotel room.

I put each container on a separate sheet of paper on the list to clarify what fits and goes inside of each bin.  I like to group like things such as her nebulizer items go together and her clothes go together.

Her "emergency med bag" is her emergency meds that are always on her wheelchair.

Her "med go bag" is a large cosmetic bag I keep stocked with syringes, water, pill crushers, etc.  In one pocket and an empty pocket that I can shove all her meds into if I need to grab them and go somewhere.

Box 1 is formula supplies

Box 2 is Breathing  (nebulizer, suction, oxygen) and Hygiene

Box 3 is Cathing and Sanitizing/Cleaning

Here is a link to Ellie's packing list that you can look at as an example.  This list would obviously be different for your own medical needs and circumstances, 

https://www.dropbox.com/sh/0gfmeeels33ib7d/AACg7gtQdw5Ii66jF1-pzIYca?dl=0

What tips and tricks do you have for packing to go on vacation or camping?   Please share with us below.  Please visit our FB page and like it to see future posts like this one.

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Instant Info About Meds

There are some things you can know about meds instantly that you may not have realized.

For liquid meds...
If it is transparent (you can see through the liquid) you do not need to shake it.
If it is opaque (you CANNOT see through it) you will need to shake it first.

For ampules (for nebulizer)...
If they come in a foil pouch, then you will need to protect them from light.
It they come in the box (but no foil pouch), then there is NO NEED to protect them from light.

Do you have any other "Instant Info About Meds" you can share with us?

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Sleeping with eyes open or using cpap

Since this blog is about lessons I have learned...some things I have to confess I am kind of embarrassed about.  But I am hoping by sharing that you won't have to learn the same lessons I did.

My daughter has always slept with her eyes partially open.  In addition to that she has also used bi-pap for 13 years.

I didn't think sleeping with your eyes open was a big deal, and for a typically developing person, it probably isn't.  For non-medically complex people they still rub their eyes and can tell if their eyes feel really dry they would complain about it.  With Ellie, this is not the case.  She cannot bring her hands to her face and is non-verbal.

At her most recent eye exam the opthalmologist said that she had permanent scar tissue on her iris (colored part of her eye).  She asked if she slept with her eyes open, I said yes.  She said the scar tissue was caused by this.  She said she should be okay, but if the scar tissue extended into her pupil (black part of eye) she would have vision loss in that area.  That's all we need...more vision loss (insert sarcasm)!

The eye Dr. said we needed to get "eye gel for SEVERE dry eyes".  The brand pictured above is what we have been using.  We just squeeze a little into each eyes before bed.  It is available over-the-counter.  I believe it was around $10 for a tube?!?!?!

I wish we would have been warned before so we could have avoided eye damage...but that is life with a medically complex child.  Consider yourself warned.

Does your child sleep with their eyes open?  Do you have any experiences you can share with us?  We would love to hear from you!

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Paying for a wheelchair modified van/lift/ramp

(These resources are for Utah)

Rebates from Car Manufacturers on a new vehicle
If you buy a new vehicle from the dealer and modify it, a lot of dealers will give you a rebate.  Here are a few examples.  https://www.ride-away.com/manufacturer-mobility-rebate-programs/

Assistive Technology Foundation (Zions Bank Low interest loan)
1-800-524-5152
http://www.uatpat.org/
Here is another link to the same program http://www.uatf.org/financing/
You turn in the application and they help you get a low interest loan through Zions bank.  The loan will be 1/2 of prime and the Foundation pays the other half of the interest.  They will help pay for a vehicle and/or modifications.  The vehicle does not need to have the lift/ramp already installed.  For loans over $10,000 you can usually get a 5 year term.  It takes about 1 week for the loan to go through once all of the paperwork has been submitted.  Once the application is complete it is good for 90 days (you have 90 days to find a vehicle).  You can use the loan more than once.

Independent Living Centers (locations throughout Utah...each county has a designated one)
http://www.usor.utah.gov/division-of-rehabilitation-services/vocational-rehabilitation/independent-living-il/centers-for-independent-living
They will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself.  They will only do modifications on a van that is 1 year old or less.  They have a long waiting list.  They get money each July, but you will need to apply well before that.  

Angels Hands 
https://angelshands.org/
It sounds like they may help with the purchase of the actual vehicle.

I sent the following question to Angel's Hands...

Do you help pay for a wheelchair modified vehicle?

This is the response I received...

Mikael,

Thanks you for your inquiry. Angel’s Hands Foundation’s mission is to improve the quality of life for individuals with rare or undiagnosed diseases. If you believe you fit into that mission, the following steps are required:

1. The family must register with Angel’s Hands by completing the online ‘Registration Form’ under the AHF Forms tab.

2. A request for assistance must be submitted by completing the online ‘Assistance Request Form’ under the AHF Forms tab.

a. Proper documentation must be attached to the form or mailed within 30 days of request.

The request will be screened and submitted to the board for consideration.

Thanks,

Dennis

Steelman Family Foundation

Helps pay for modifying vans.  Does not often pay for the van itself.  Has certain requirements that the van must meet such as..vehicle must be the current body style and under 50,000 miles.  Rear entry is available up to 80,000 for some vehicles.Has an open application period.  In 2019 it will

open Nov 1, 2019.  https://steelmanfamilyfoundation.org

Contact your local Eagles/VFW/ Elks/Lions/ etc...  They are often looking for a good fundraising idea.

Create a GoFundMe account and'or have fundraisers to help raise money.

If you are on the DSPD waiver, they will pay to modify a van with lift/ramp/tie downs/etc.  They will not pay for the van itself. It takes several months to go through the approval process.

Karl Malone Foundation has purchased vehicles before.  

(this may be an inactive non-profit...it was difficult to track down online)

Karl Malone Foundation for Kids

Po Box 429

Bountiful, UT 84011

How have you been able to pay for a wheelchair modified vehicle?  Do you know of any other resources?  Please comment below.

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