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