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The fear and reality of losing a disabled child to their disability

This is a post that I have considered writing many times, but have thus far avoided.  It is one of those dark parts of my life that I try not to visit.  It is the reality that children like Quincy are fragile and that the odds are stacked against them.  It is about the reality that I will probably outlive her.  It is about the cold fear we face about losing her.

Just before the holidays a very young, very medically fragile disabled girl at Quincy’s school died from the complications of her disability.  It is one of those things my husband and I do not discuss.  Our hearts break for the family and the fear strikes home for each of us.  Today I read about John Travolta’s son, Jett, dying from complications of his seizure disorder.  I realize that there are so many parents out there like me who will read about this tragedy and internalize it for days.  We will cry in private where no one can see us, we will not discuss it out loud, and we will share the family’s grief knowing that but for the Grace of God that could be us.

Most parents like us know this fear and face it regularly.  It is what separates us from other parents.  It is what causes those outside our world to judge us as “crazy”, “irrational”, or my personal favorite, “over-protective”.  The judgements are fine…guilty as charged, as long as you understand that my behaviour isn’t baseless but is borne of legitimate fear. Parents raising children who are healthy will tell you the story of momentarily losing sight of their children in the playground or at the mall and that ten seconds of cold fear they felt until their child was found.  That is their singular experience and for that they are blessed more than they will ever know.  That is a fear that parents raising children like Quincy face all the time.  It is something we live with…each of us in our own way.  We find a way to function and to bury the fear to appear normal, but it is always there, popping up in nightmares or on mornings when you open the paper and read about another family losing their child.

If a family like the Travolta’s can lose their child, a family who can afford to provide every safety measure they can, then we know it is more about Fate and not about effort.  Normal families like mine must sacrifice sleep, work, vacations, and a million other things too depressing to list to provide the kind of care Quincy needs.  And, in the end, we know that it will be up to Fate to decide how long we get to love her, learn from her and share her with the world.  I hope she beats the odds and outlives me…but I will live every single day knowing it is a gift that I am eternally thankful for.  Today I whisper a prayer for the Travolta’s and all other families out there who must face their reality far sooner than any parent should.

Battling constipation with the physically and developmentally disabled

Okay, occasionally I am going to write about things that I know Quincy would rather I not share with the world.  I have to apologize in advance to her for this.  However, some of these sensitive issues make up the biggest challenges that parents and caregivers face in their daily care of the children.  Constipation is a very real and very persistent issue.  It has been the topic of numerous conversations amongst my friends who also have children similar to Quincy.

Children like Quincy do very little weight bearing activity and because they do not move their bodies as much, or in the same way, as other kids their systems suffer.  The cocktail of medications they take can make this even worse.  For Quincy we do several things on a daily basis to combat constipation.  First, we try to always feed her meals that are high in fiber.  I also use Miralax daily in her water.  This product seems to be easiest to manage and isn’t fast-acting.  Through trial and error we have learned what dosage to use to keep her regular without having any surprises.  Finally, we will often give her an evening snack of a Pediasure with fiber to keep her regular and help with her other nutritional needs.

Even with all our efforts, sometimes she just gets backed up.  I have no idea why this occurs.  We are religious about being consistent with our efforts.  And still, sometimes it just doesn’t work.  We keep daily records on Q, to make sure we keep track of her meds and other important issues, so we know when it’s been a few days.  At this point there isn’t much left to do but the ever-dreaded enema.  They work.  It is always a last-ditch option but there are times when there is simply no other option.  Impacted bowels can be incredibly painful for our children and are a lot more miserable than an enema.  So, keep a box or two of Fleets in your medicine cabinet.  It’s not expensive and it is effective. Fighting the battle with constipation is worthwhile…Quincy sleeps better, eats better and feels better when her system is working properly. 

Tags: Constipation, medical issues

Feeding a child with a limited ability to chew

Quincy has an excellent swallow reflex which we’ve been told is rather unusual for a child as disabled as ours.  What it means is that she does not have to be tube-fed.  The use of a G-tube for feeding comes with complications and it’s nice to not include those in her already complicated life.  However, Quincy doesn’t chew or use her teeth much…when she is given food she simply tastes it and if she likes it she swallows.  If she doesn’t she just leaves in in her mouth, mouth open, until it falls out.  Then she will clamp her mouth shut and refuse any more bites.  Luckily she is not a picky eater.  She appreciates flavor and variety…our only challenge is to find foods that are soft-solids that she can swallow without choking.  She is able to eat almost any pasta dish, especially if it has a heavy sauce.  She can eat casseroles and soft Mexican food, like enchiladas (one of her all-time favorites).  She eats oatmeal for breakfast (our favorite is Kirkland organic instant) and I pack a Stouffers frozen meal, like meatloaf with gravy or mac-n-cheese, for her school lunches.  We have found that finding food she will eat isn’t terribly difficult.  But the issue of feeding her can be.  If she is having seizure complications or medication interactions she seems to lose her appetite.  It’s quite a challenge to put calories into a child who has no desire to eat.  It’s times like these that, when all else fails, we can always resort to the occasional Pediasure.  Pediasure is great for the calories and nutritional content but also for the added fiber.  Constipation is a constant battle and any time we can add fiber to her meals to keep her regular naturally the better.  Quincy drinks water…that is her preference.  We must squirt little sips into her mouth from a water bottle.  It’s a slow process and requires a lot of attention and patience during the course of a day to make sure she gets all the hydration she needs.  Dehydration can lead to issues with her medications and also complicates the constipation issue further so it’s incredibly important to be sure she gets plenty of water every day.    What is great about Quincy is that she generally loves good food with lots of flavor.  She is very appreciative when I make the effort to make a big, home cooked meal.   Thanksgiving is one of those times because almost everything we make, from the main dish to dessert, is something she will enjoy.  It really is much more fun to cook for Q than my other children…she complains a lot less and generally eats a lot more.  She is the absolute perfect big-sister role model for them!

The challenge of seizure control

Controlling seizures is one of the most difficult, complicated hurdles we face with Quincy.  There is no magic formula…it is a dynamic, ever-changing situation.  There seems to be little rhyme or reason as to why she will have excellent control for stretches of time and then it all just goes to Hell.  There are some factors that are obvious, like whether or not she is fighting an illness or if she has had a tremendous period of growth and simply needs a higher dosage than before.  But, for those simple factors there is a multitude of factors that cannot be measured.  For one, Quincy takes a cocktail of seizure medications.  So you have to try to figure out which one might need to be increased.  Also, you need to consider how do the meds work on their own and how do they work in combination with the others?  And then we walk a fine line between wanting to keep her meds at a level that will control seizures but not so high as to have her be sleepy and drugged-out.   Some of her meds can’t be increased to a higher dosage without being toxic so if they are no longer effective then we must go through a very extended process of weaning her off while slowly bringing on-board a new medication that may or may not work.  I think her pediatric neurologist once referred to seizure control as voodoo and he couldn’t have been more correct.  Quincy has been on almost every seizure med out there and some that aren’t even out there but that we’ve had to purchase from other countries.  I mention this because up until a few weeks ago Quincy was having a great stretch of seizure control.  When she has these stretches she is alert, active and attentive.  But then we lost it and the seizures returned.  They wipe her out physically and then her struggles begin.  So today we begin a dosage increase with one of her new meds and hope that it will do the job, that it won’t over-medicate her, that she won’t suffer side effects and that our voodoo science will produce the magic formula that gives her the relief that she needs.  If not, we will tweak the formula another way…always striving to unlock Quincy from the seizures that control her so she can have a bright, clear mind and a healthy, happy life.

Incontinence and hygiene supplies

I know there are some topics that I will write about that I’m quite sure Quincy would rather I not share.  I am willing to take my chances with her to discuss another daily struggle…finding affordable, comfortable and effective incontinence supplies.  First, let me talk about comfortable and effective.  Quincy has as much bladder capacity as anyone her age and it’s incredibly important that what we use doesn’t leak and doesn’t irritate her.  We are currently happy with Attends Breathable Briefs.  This product has side tabs which makes changing much easier than with pull-on briefs.  They are made of a soft, stretchy fabric that won’t bind or irritate her skin.  Also, they can fit snugly without being too tight so they aren’t as noticeable under her clothing which is important when you are thirteen.  We use a Poise Ultimate absorbency pad inside the diaper and with this combination we can avoid most leaks.  I was thrilled to find Poise pads available by the case at Costco last week for about $40/case which is a huge savings over what I pay anywhere else.  Now, let me discuss affordability.  I used to purchase the diapers from Geneva Woods pharmacy in Wasilla for $115/case.  That seemed to me to be an excessive price.  We do not have Medicaid or private insurance to pay for these supplies but never succeeded in getting them to discount the price.  I finally found Frontier Medical in Wasilla would sell them to me for about $75/case and was stunned.  I mean let’s be realistic, Frontier Medical is still making a profit at that price so Geneva Woods was making a killing.  You can judge for yourself what kind of business would knowingly make that kind of profit on someones need for diapers, but I can tell you that they aren’t getting another dime of my business.  Recently I found this incredible dealer on the Internet, JustAttends.com  that sells the same products for about $65/case and FREE SHIPPING!  The people at the company are incredibly attentive and professional and it really is free shipping…even to Alaska!  So, if you have to pay for incontinence supplies out-of-pocket like we do, you should check out this company.  They are great!  So, that’s my little shout-out for the week…hope it’s helpful to someone!!

Defining developmental disability

One question I am frequently asked is “What does Quincy have?” or “What is her diagnosis”?  The question is a simply one, but the answer is not.  Anyone raising a child with developmental and physical disabilities quickly learns that our children rarely fall into any one well-defined category.  Some children are born with their disabilitiessuch a Downs Syndrome.  Those parents are often prepared prior to birth asto what they can expect.  Many of us are raising children that have suffered some form of a traumatic brain injury (known as TBI in my world) and this makes defining their condition difficult.  Generally, we tell people Quincy has cerebral palsy (CP) because for many this gives them some idea of her limitations.  But, she’s really never been diagnosed that way.  Her body suffered injury from a vaccine and that is rare and relatively undefined.  She cannot walk or talk.  She is strong and flexible and has good tone, but she doesn’t have the ability to use her limbs much.  She has limited head control and some ability to grasp.  She has an excellent swallow reflex which is unusual for a child with her level of disability and we are lucky that she can eat soft-solids and does not need to be fed through a G-tube.  Most people don’t think she has much cognitive awareness and this is often the assumption with children who are non-verbal.  But anyone who thinks that Quincy cannot use her arms or her body in a purposeful way has never tried to feed her when she is not hungry, or tried to comb the back of her hair when it’s tangled.  She can very purposely block the hairbrush with her arm, she can purposely keep her jaw shut when she does not want to eat and she can purposely stick her leg out when she wants to block someone from walking past her (or to trip up one of her siblings).  So, my daughter is complicated.  I know that she processes and understands far more of the activities and conversations around her than most people believe.  In fact, many times people seem to act as if she isn’t in the room and may begin discussing things that are not appropriate to discuss in front of a thirteen-year old and need to be reminded of this.  We are very adamant with her teachers and caregivers to act appropriately around her.  I really hate it when people talk about her as if she is not there or she is so blank that she cannot understand.  I have seen firsthand how Quincy will simply shut-down with people that she does not like or trust and know very well how sensitive she is.  It is a painful lesson to learn that the world seems to have little patience or use for children who are fragile and have special needs.   I believe someday my Quincy will learn to talk and boy, when she does a lot of people are going to get an earful from this child!  There are new technological advances everyday that offer hope to those who are “locked” inside themselves, which is exactly what Rob and I know to be true with Quincy.  I truly hope that in her lifetime she will be able to utilize this technology to share her thoughts with the world.  Until then, I will serve as her voice, the best that I can, to try to teach others what they can learn from exceptional children like Quincy.

Assessing discomfort in non-verbal child

One of the biggest challenges we face raising Quincy comes up when she is in discomfort.  For anyone who has spent time with her, it is easy to know when she is just fussing or complaining, when she is frustrated, and when she is hurting.  It’s the hurting times that are the hardest to handle.  Last night she was hurting.  It is not unusual for that to happen in the middle of the night…Rob and I awake to her cries and we know it means she hurts.  The challenge is to try to find out why, to comfort her and to do it as quickly and as wisely as possible.  When I was in college I took a 40-hour course to become a certified Emergency Trauma Technician.  The triage skills we were taught then are quite similar to what we do with Quincy.  We start at the head…a quick hand to the forehead to make sure she doesn’t have a fever.  Then to the abdomen.  Experienced hands on Quincy’s tummy can tell a lot…whether or not she is gassy, constipated or just straining.  Then down each leg.  Rob and I know that as a result of seizures or hard work in physical therapy that Quincy gets leg cramps, so we quickly rub her legs to see if that calms her.  Last night it did not.  Then it gets tougher.  If she doesn’t seem sick or feverish or cramping then perhaps her discomfort is the result of a hard seizure that scared her or even a nightmare, which all my children seem to be plagued with.  When she is upset she flails, so sometimes that creates more problems if she strikes herself in the face or hits the wall.  So, we try to wrap her in a big bear hug…to calm her flailing and to comfort her.  We whisper in her ear and talk calmly to her and do our best to make her relax.  That worked last night.  So, my guess is that she was scared by something more than hurting.  Because after about 30-minutes of this she began to calm and eventually drifted off to sleep and slept  peacefully for the remainder of the night.  If she is hurting or sick, this might have calmed her temporarily but she would have started up with the wailing again.  That’s when it gets scary.  You never know if it’s an appendicitis or ear infection or something else that is hard to diagnose.  Tylenol would be our next trick, which usually works.  Or, often it’s a 2:00 a.m. enema to clear up the chronic constipation that we battle with Quincy.  Luckily for us, she is incredibly healthy.  We’ve only been to an Emergency Room once or twice in her life when we simply couldn’t find the root of the problem.  But, we always worry that we will miss something.  That she might suffer a bit longer than she should because we didn’t catch it right away.  But, Quincy does a good job of responding to us and helping us read her cues and I am convinced that if anything were terribly wrong with her help we would catch it immediately.  I am always amazed at what a good job she does to help her parents figure these mysteries out.