Archives for category: equipment

Well, 2014 and the new insurance changes have brought about the kind of changes I anticipated.  Our family was not allowed to keep our existing insurance, because due to insurance rule changes my husband’s employer decided to go the cheaper path.  Now we have insurance that will not cover my daughter’s formula even though she is g-tube fed and her life depends on it.  It is not supplemental nutrition, it is her nutrition, but that doesn’t matter to Cigna.  Our previous insurance covered all of her formula as long as it was her only form of nutrition, which it is.  Not our new insurance. Apparently, they don’t care if she gets fed.  To add insult to injury, we are paying twice as much for this insurance, which covers less and requires us to pay a percentage on everything they do cover (what that may be remains to be seen).  We do have Medicaid as a secondary, but due to my husband’s income we have to pay a premium for the upper level of that, so that’s costing us more as well.  Right now we are waiting to see if Medicaid is going to cover her formula.  I am holding my breath, because her formula is nearly half of our entire income, and there is no way we can afford it out-of-pocket.  What are we supposed to do?  As it is, like a lot of families, we barely make it week to week, and now with all these extra charges I am really afraid for the first time in my life of how my family is going to survive.  These insurance changes that were supposed to be a blessing to everyone are really screwing us over, so thanks a lot.  Affordable healthcare? I wish I had the energy to laugh out loud at that one, but it’s really not funny.


Today, as I was getting Lizzie dressed, I was running a commentary as always.  I was telling her what a wonderful day it was and that since the weather was so nice that I definitely had to get her outside.  Yesterday we used her gait trainer outside, and she did really well with it.  Today I wasn’t sure if we should use her gait trainer again, or use her bicycle.  I mentioned this to her and I was finishing getting her dressed, and she started making “Buh,” sounds.  Now since the beginning of time for us, we’ve called Lizzie’s feedings babas since they started as bottles.  I looked at her smiling and saying “Buh, buh,” and I thought that’s what she was doing.  Never mind that b’s aren’t a common sound for her. I asked her, “Are you hungry, do you want a baba?” and then I saw her smile fall and I said, “That doesn’t make sense, you just had one.”  Then something occurred to me and I asked, “Bike?” she looked at me, and I asked, “You want to go on your bike?”  Her face lit up.  Now I don’t know if this was a fluke, or she was trying to say bike.  I’m praying it’s the latter. Image

So, a little while later after I pulled out the bike and cleaned the dust off of it from storage, I put her on it, and we did our usual walk around the circular street where we live.  Miss Lizzie was really pulling on the handlebars today, which was causing me to have to hold tight to the push handle and battle to keep her from veering too far.  I had just decided to walk around the front to flip the handles out of her range of grasp, when she started moving!  Lizzie was pedaling all by herself!  With the exception of a couple of times that I had to give her a nudge to restart her, she must have gone about 30 to 40 feet on her own.  I am completely amazed.  My eyes were tearing up.  I was so proud of her.  This is the first time she has ever done it alone.

O-balls are plastic balls that are full of holes in a beehive pattern.  I have told my friends who have children with special needs, like my daughter, Lizzie, that O-balls are an essential tool for early development and an awesome toy.  With their ability to have new items put into them and changed out, they keep children’s interest.  They help with fine motor development as children stick their fingers in the holes to reach for toys.  They helped Lizzie work mid-line as she grabbed the ball with both hands and raised it above her head.  I’ve seen Lizzie use a pincer grasp to try to get small parts of toys such as paws of small stuffed animals, or tentacles of a squishy ball.  I’ve even seen her using problem solving to push the toy to one side with the fingers on one hand and try to grab it with the other hand from the other side.  She has shown determination as she works a slinky from the inside of the ball out.  We’ve used them for visual stimulation by stuffing them with old, deflated Mylar balloons.  We’ve used them to teach object permanence by dangling them from a bar above Lizzie’s head so that if she dropped them, they would still be there in front of her.  They can even be tethered to her wheelchair so they can be played with on the go without getting lost, or having to be retrieved 900 times.  O-balls have become a favorite toy, and an essential therapy tool.  They are inexpensive, indestructible, dishwasher safe, and versatile.  We love O-balls!

O-balls Filled with Various Items

I love the warmer weather.

I love my daughter.

Lizzie enjoyed chasing her dolly outside today.

But today I love my daughter enjoying the warmer weather.

Lots of giggles were had during the pursuit.

Dolly gets smooched when Lizzie catches her.

Today we went for a follow up to the orthopedic surgeon.  He looked Lizzie over.  Checked out how her braces are fitting.  He also had us take an x-ray of her pelvis to check out the hips he did surgery on back in June.  I was happy to receive a phone call this afternoon stating that her hips look great and we don’t need to see him again until next June.  Unless of course something else happens, or her braces need adjusting.  It’s a relief to have this taken care of.  One more appointment out of the way for a while.

When we were waiting for our van at the hospital’s valet, we noticed a familiar man in a bright red suit unloading a minivan full of toys onto carts to take to the children in the hospital.  Michael said, “Look, Mom, it’s Santa!”  After our van had pulled up, and we were getting ready to load Lizzie, the man in question materialized next to us, and told Michael he needed to be good.  Then he looked at Lizzie, stroked her cheek, and said, “I know you’re always good.”  To which Lizzie licked his glove.  I was silently praying she wasn’t going to bite Santa right then and there.  Santa produced two beanie babies, a black bear for Michael, and an otter for Lizzie (which she amazingly held onto until we were in the van which is unheard of).  Then with a twinkle in his eye, and a wink to Mom, he went back to his skids full of toys.  It was a nice surprise.  Michael actually voluntarily helped me load his sister after Santa’s visit.  Ha ha ha!  Or should I say, “Ho ho ho!”?

I hung up the phone yesterday and I woohoo-ed, surprising my son who was at the back of the van. Lizzie’s gait trainer has been approved, which means that in about a week and a half, she will be walking in our house for the first time. This is such exciting news. Of course, as I was woohoo-ing, I swear I heard my son mutter, “Godzilla,” under his breath. This is no doubt in reference to the destruction of Lego villages he sees in the near future as his sister becomes more mobile. I had to laugh. 🙂

I spoke to Lizzie’s neurosurgeon’s office today, and here is what I found out:

1. He has a lot of experience with VNS as he has put them in.  Which means if Lizzie gets one, most likely, he will do it.  I breathe a sigh of relief here.

2. He had to read up on the shunt/VNS paradox after I called.  Then he found the same study I did, and came up with what may be a solution.

3. There is a newer programmable shunt valve that is less sensitive to magnets, and would be a solution to the shunt reset issue.

Unfortunately, this would mean:

1. Lizzie would have to have shunt surgery – and her working shunt would be disturbed, and her working valve replaced.  We would then have to wait at least a month to make sure Lizzie’s new valve and shunt are working properly before we could even consider the VNS placement.

2. More than one surgery – so multiple chances for infection.  Also twice the trauma for surgery itself.  And more time away from school and therapy.

3. More than one new device – so multiple chances for equipment failure which means refer to #2 above.

4. If the valve fails, or just doesn’t work for Lizzie for some reason it would mean another surgery to correct the problem.  And this would be a new problem we created, because there is no problem with the equipment she has now other than it is incompatible with the new device.

5. If the VNS doesn’t work for Lizzie, we would have done all this for nothing.

If, however, it worked, it would mean:

1. Less severe or less frequent seizures (or in some cases, no seizures at all (dare I dream?)).

2. Possibly less medications, so less side effects (which in Lizzie’s case seems to mean more abilities).

3. Fewer worries about seizures (although the worries will always be there).

4. An easier way to intervene when seizures do hit (a magnet swipe across her chest vs. a rectal medication that wipes her out).

This is a really tough decision.  We have to do an EEG and meet back with our neurologist at the end of next month, then I’ll know more.

VNS or Vagus Nerve Stimulation is a treatment for epilepsy.  It was recently suggested to us by Lizzie’s neurosurgeon, and is something we are considering trying.  With this treatment, a small device, (like a pace maker) is implanted into the chest and has wires that wrap around the vagus nerve; a nerve in the neck that goes into the brain.  With stimulation from the device, seizures either stop, or can be slowed down.  Some people actually report no seizures or a significant reduction in the occurrence of seizures.  The device can work on its own, or it can be activated by a magnet swiped over the chest at the onset of the seizure.

If medications continue to not work for Lizzie this may be an option, but it does scare me.  This is a serious decision, as it is surgically inserted and gives shocks to the nerve to stop seizures.  I am nervous about the magnetic factor of the VNS, as Lizzie’s shunt is also controlled by magnets.  I read online that there was a study conducted in which 100 trials were performed and 78 times the VNS messed up a programmable shunt’s settings.  Highly discouraging.  This means that we could get the seizures under control and go into shunt failure.  I definitely need to call the neurosurgeon on Monday to ask about this.

I also read that the VNS is not recommended for those with heart issues.  Lizzie’s heart is fine, but her aortic valve is bicuspid (having only two parts) instead of tricuspid (having 3 parts, as it should), this means that her valve works harder than most people’s to get the same job done.  Bicuspid aortic valves, as it has been explained to me, can over time become weak or stiff from the overwork.  They can fail or leak and require surgery or replacement.  Or you can live with it forever with no issue.  We have Lizzie’s monitored once a year by her cardiologist, and so far it has been fine.  My question now is can the electrical impulse from a VNS cause issues with this specific heart issue?  I guess I will also be calling our cardiologist on Monday.

It’s a lot to think about.  I really want Lizzie’s seizures under control, but what risks are worth taking to achieve that goal.  I would also like to reduce the amount of medication she takes for her seizures, as this seems to cause delays in her skills and development.  But again, what is it worth?  I definitely have to do my research on this one.  I find that the older Lizzie gets, the harder some of these decisions are getting.  She is physically stronger, and these procedures and treatments are not life or death but rather quality of life, and that makes it much harder to decide.  The question of risk versus benefit becomes much harder when both sides are close to equal.  Those earlier surgeries were easy to decide because it was surgery or she could die.  Easy decision.  But this one, implant the device – risk the shunt or heart, or stay on meds that don’t work 100% and risk holding back her abilities and having seizures.  Although we could implant the device, and still have seizures, if it doesn’t work for Lizzie.  Tough call.

We will be taking our time with this one.

Today we had the mobility people come out to do an assessment on Lizzie’s chair.  She has been looking a little out-of-place in her chair for a while, and there were some minor and not so minor repairs that needed to be addressed.  The man from the mobility company took one look at Lizzie in her chair, and said, “Yeah, I’d say we need an adjustment.”

Recently Lizzie hasn’t been wearing her new back brace because between her tube infection (which we didn’t want to add unnecessary pressure to), and our air being out-of-order for a while (and us not wanting Lizzie to overheat) we’d been letting her go without it.  However, I made sure that I put it on today for the growth adjustment, because she will be wearing it again full-time, and we needed her chair adjustment done for her with the back brace.  She sits differently in the brace, and she is wider and taller in the brace.  But I have to admit, Lizzie all stretched out, in her brace, looks too big for her chair almost to the point of absurdity.

The nice man from the mobility company told us that he will have to get all new (custom-made) seating for Lizzie, and new headrest, new pads for her arm rests, a new harness (she’s gnawed hers to bits), and new hip and lateral supports.  Basically, once it gets adjusted (and revamped) Lizzie will have a new chair.  The only things that are staying are the frame and the wheels.  We are even getting new parts for her tilt-in-space mechanism that will allow for her to tilt from upright to reclined again.  Yay!  The only thing is we have to wait for the insurance to approve the assessment, and for the parts to come in (or be made in the case of our seats) so it will probably be a few weeks until it’s able to be done.

I am excited.  She really needs her chair to be adjusted and fixed.  Maybe that’s why she’s been so fussy at feeding times lately.  Maybe she’s uncomfortable in her chair.  I look forward to the call that they’re coming out to do the work.

Last weekend we went to a really cool event called the Abilities Expo.  This event brings together equipment vendors, groups, and resources for disabled individuals to one venue where the people who need them can then view, try-out, and access these resources.  What an awesome idea!

We saw several different vehicles modified for wheelchair transport, a valuable thing for a family hoping to get a new vehicle in the next year, and not wanting to trek out to various vendors separately to see what’s available.  The one we liked the best was a Dodge mini-van with a fold out ramp in the rear.  It allows for 7 passengers including the wheelchair passenger.  This will make us much more valuable in the Cub Scout car pool.  Also, it allowed for Lizzie to be in the middle right behind the front seats, where either driver or passenger in front could access her easy.  Awesome, since I spend equal time in both seats.  We are excited about this being a mini-van, because the fuel economy on our E350 frankly is not very economical at all, and I would love to be able to park a much smaller vehicle on a regular basis.  The only thing I’m not sure about is getting a rear entry vehicle, as we’re used to side entry, but I guess we’ll get used to this as well.  I just wonder how parallel parking will work when someone parks on our tail.  Hmmmm.

Look at me!

I also learned of things that we did not know existed.  Lizzie tried out a special needs bicycle at the Creative Mobility booth, which her brother enjoyed pushing her around in very much.  It could work on Lizzie power or another person’s, allowing us to decide who had control.  I also loved seeing that there was a bicycle with a wheelchair-like seat on the front of it so I could ride and have her right there with me.  Something that would be good for both of us.  Unfortunately, as with most special needs equipment, both of these items were highly expensive, and will require either insurance approval or fund-raising on my behalf.

There were many different equipment displays.  We checked out rail lifts by several companies that would allow us to move Lizzie from one room to another.  We will probably need one of these in the next couple years as Lizzie gets older, bigger, and heavier.  We did find out that most insurances do not cover these, and I will be busy in the near future trying to figure out if ours will, or where we can go to get help with this.  Again I may need to look into how to fund raise on our own.

We also saw many booths of wheelchairs, including ones for sports, ones that lifted the user to a standing position, and just about every other need.  We saw wheelchair accessories.  There were spill proof trays, and bags and wallets made to fit walkers and crutches.  They also had tools for reaching, and grabbing items, opening jars and magnifying text.

There were walk-in bathtubs, adaptive showers, and assorted bath seats.  We especially liked the Aquatech Bathlift, that lowered the user into the water almost all the way, but raised up to the level of the tub to allow for easy removal from the tub.  This seemed more beneficial to Lizzie that she would be in the water instead of hovering just above it like in her bath chair now.

We also saw a cool line of greeting cards called CRIPmark.  They were all disability themed and featured people in wheelchairs, with crutches, with leg braces, etc.  I thought it was a wonderful idea.  They all had wonderful artwork, and a sense of humor, something we all need from time to time.  One of my favorites, was a simple card with LOVE spelled out in sign language, and a blank card inside.

In the final row, we came across an awesome booth of clothing called 3ELOVE.  Their name is explained by their mission statement, “Embrace Diversity.  Educate Your Community.  Empower Each Other.  Love Life. ” Their logo is a really simple wheelchair design, only instead of a familiar round wheel, there is a heart.  My favorite shirt, which I’m going to buy for Lizzie, says, “I love life”, substituting their logo for the word love.  I love it!  It is so true of my daughter.  No matter how much happens to her, Lizzie always rises above, and comes out smiling.

There were legal and service booths, offering advice and information.  And along with the useful information, there was also some entertainment by way of a demonstration of wheelchair rugby, and an all abilities climbing wall.  I am ashamed to say I could not even get half way up the “easy side”.  Proudly, my 10-year-old scaled the “difficult side” all the way to ring the bell, despite a missing hold.

I saw so many things I would have loved to buy at the Expo.  Many of which will have to wait until insurance is approved, or money is raised, but it’s nice to know they are available.  I am so glad we checked out this event, and definitely recommend it to anyone with special needs, or who loves someone with special needs.  It’s an event that will definitely grace our calendar next year, hopefully finding us in a better situation to get some of those items.