Wednesday, May 13, 2015

Constantly Troubleshooting

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One of the most difficult aspects to parenting Noah is that sometimes things are a guessing game.   While yes, I'm an expert in his care and needs, there are still some things that I am unable to find a solution or remedy for.   These things that keep me up at 1am, 3am, 5am because my brain cannot accept that I cannot out-think the problem at hand.  Contributing to my exhaustion as a special needs parent, things beyond my control often dwell heavy in my mind.   It's likely that need that most all mothers have no matter what ability of child they are parenting to "fix it."  And when we realize we can't we stew on it often until the end of time, because we cannot accept that there is something that can't make things better.  That feeling I think is simply intensified when you are special needs parent.   My typical child can assist me with troubleshooting any problem he may have - Noah cannot.  A closed beautiful book with blue eyes that looks at me with wonder - as if he wishes to tell me all the things I do not know. 

Noah lay finally sound asleep at nearly 10am after being up frequently in the night, snoring finally peacefully.  And for the next twenty minutes I can listen to him on the monitor without a worry that something is wrong with him, or that his monitor will trigger an alarm.   Those twenty minutes for me to rest, to put my guard down, to take a deep breath so that when he does awake I can then again try to figure out why he is now grinding his teeth (again), and why he's snorting when he doesn't have a cold, why his body still wants to shift to the right when he's in adapted seating devices, why his head control can be so fantastic one day, and terrible the next, why he's now decided some of his favorite foods are no longer desirable and my constant quest to feed him fast food because right now that's what motivates him to chow down so he doesn't lose weight and maintains a caloric intake that he needs for his tiny little body.

I am hoping that maybe an acupuncture appointment I made today will assist Noah with his bruxism and increased sleeping difficulties.  He tends to respond well to holistic forms of treatment favorably - I have my fingers crossed... maybe it will work?  Maybe it won't. 

I've also started the process of obtaining Noah a Dynamic Movement Orthoses (commonly referred to as a DMO), it is a specialized suit made in London customized to Noah's movement.  A series of 40 measurements are taken, it's notated on how he moves and what panels might assist him with discouraging scissoring of legs, and trunk support, it takes about three weeks to make, it's then shipped to Boston and then Boston ships it here to us.  It's rather quite a process, and requires Medicaid funding.  Generally, however Medicaid funding is a bit easier when you are dealing with Orthotic and Speech needs than other types of Medicaid funded codes.  So, I don't expect that Medicaid will block this for Noah - but one never knows anymore with them so I hate to get overly confident. 

The goal with the DMO is that it will give Noah more body awareness or something called proprioception.  It is believed that with increased proprioception feedback that a child like Noah can use their body more effectively and with that positive compression feedback help the brain to build pathways to strengthen trunk, balance and posture. I am hoping that it will also assist him at hippotherapy.  While he has had some really great sessions, he's also had some equally concerning ones - most recently being the last.  If the volunteers on staff on any given day aren't familiar with Noah it can often lead to a nail biting session for mom as I watch others not be mindful of his head and it snaps completely backward without someone assisting him or pushing it forward, something I do worry could lead to an injury.  Or his trunk can collapse completely inward and he becomes a curled up ball on a horse.   Other times volunteers are great and understand exactly how they must hold him - but you never really know from week to week who the volunteers will be.   Since I can't train a crew myself my choices are terminate a therapy that isn't consistent with his needs (that he also happens to love and adore), or see if there is any way that I can help make him stronger so he's not at risk with people who have just met him for the very first time and don't know how strong and unpredictable his tone can be. 
Example of how a DMO can assist with posture/tone
Noah has also outgrown his S.W.A.S.H. Brace, so I had him re-measured for a new one.  I'll be honest he's not a complete fan of it, so it's use is often limited.  He hates things that restrict him and prevent him from what little movement he does have.  He certainly wouldn't tolerate it while laying on the floor as it would prohibit him from rolling room to room something he insists on doing.  Now that Noah is older people will walk into my home often be critical that he's six and still primarily laying on the floor, but the feedback he craves and desires is from being on the floor.  He is not yet proficient in his power wheelchair and for him - freedom means being on the floor so he can get around in his own way.   To take that away from him and force him to sit in a wheelchair all day at this point in time would be cruel. 
S.W.A.S.H Brace
 So I expect that the S.W.A.S.H. will primarily be used on trips to the zoo or recreational activities where he is out and about in his wheelchair.   It's not always perfect, it's not always what the experts suggest and recommend for daily usage, but we're doing the best we can do.  It has always been our goal to give Noah a happy life, and not force him into things that crush his spirit and cause him to be distraught or upset.

I'm also trying to work on Noah's current wheelchair challenges.  We are really excited about Noah's new Convaid Trekker, but it needs some essential accessories before I can actively use it with him in public and with transportation.   I really hope they come soon because I'm at my wits end trying to make the model I'm using currently work. I hate the harness which chokes him when he slides down (I'm attempting to beg the DME to order him something else but that could take up to 90 days or more) and I don't have $239 out of pocket just for one accessory to buy it on my own.  I'm always at the mercy primarily of people's goodwill or Medicaid.  I always know that I'm up a creek otherwise.  I'm also trying to get a piece ordered for Noah's Leckey Mygo.  Noah's right arm wants to get stuck inbetween the lateral and then he twists it which is starting to distort how he carries that one arm.  Troubling for sure, because I think I can fix that.  But I need a lateral band that goes across the chest which would make it impossible for him to get his arm stuck inside the lateral piece.  Something I also have to wait and see if the DME will obtain for him through insurance.

I also am working on trialing the Ottobock Jockey - something that will spread Noah's legs in a seated position and I hope will assist with discouraging hip migration.  That will arrive June 9th, I hope that the DME will give me about 30 days to work with the device so I can see it's pros and cons not just for Noah but for other children like him.  I've become rather an equipment addict because I know that equipment often holds the key to a child's success, independence, comfort and personal growth and ability to participate in the world around you, it must be comfortable, safe, functional and meet each child's individual supportive needs.  And some equipment out there in pictures looks great and looks perfect until you get your hands on it and realize a vendor's idea of "microfiber soft upholstery" is not at all what real microfiber is and it will send most kids to sensory meltdown land.  If I like the product then the next hurdle is a Medicaid request, and I have to then balance Noah's current needs with a Mygo versus a Jockey as Medicaid likely wouldn't fund both within a 3-5 year time span, and they would in Noah's world serve two different functions.  Noah has some growth left in his current Mygo but he won't make it another three years in it.  Sad Medicaid doesn't always recognize that each piece of equipment has it's own individual purpose in Noah's day - especially for children who are as physically involved as Noah is. 
Ottobock Krabat Jockey
I just keep troubleshooting because it's really the only option I have.  Maybe I'll get it right.... maybe I won't.   But if there is anything behind the power of intention then I'll keep at it. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.