A Summary of Her Vaccine Injury - A Childhood (and Independent Lifetime) Lost

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic
A summary of an infant's Vaccine Injury.

Submitted: April 02, 2016

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Submitted: April 02, 2016

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Here we are:

K is one of the sweetest and most amazing 16-year-olds you will ever meet. She arrived into our world a couple of weeks late, but was perfect when she decided to make her entrance. She smiled at everyone right away and every visit with the Pediatrician ended with his comment, "She's perfect!" Until K received her 4 month vaccines at 14 weeks of age; they included the DTaP, HBV, Hib, and IPV. 

She went home screaming, passed-out and slept way too long, woke up with legs that flopped to the table at diaper change, lost interest in eating, lost interest in smiling and looking us in the eye, began squealing like a dolphin, started staring at her hands in front of her eyes for extended periods of time, and by the ninth day started shrieking in a non-stop high-pitched wail and did not stop for six hours, the hospital disregarded our concern, that this was listed as a severe adverse event, and sent us home with Amoxil and Tylenol.  For the next three years, K was often violently unhappy for hours at a time, had non-stop putrid diarrhea, was a risk to herself and others, could not sleep, did not want to be touched or held unexpectedly, did not develop language, was diagnosed retarded, non-verbal and in-educable.  She was no longer, "perfect" in the Pediatrician's view.

We had no idea that she was born with metabolic dysfunctions which would leave her at-risk for permanent harm from the administration of vaccines (which does not seem to adversely impact most people).  Her vaccines, given at 3.5 months of age, left K with frontal and temporal lobe epilepsy (positive for LKS variant), antibodies to her own myelin, hypotonia, global developmental delay, metabolic dysfunction affecting her mitochondrial function, and GI challenges affecting her ability to absorb nutrition, and more.

K has undergone over 18,000 hours of 1:1 therapy, lost her typical infancy and childhood to pain and therapies, and lost her independent future.  Her family members lost her typical infancy and childhood, and her siblings have suffered the loss of their own typical childhoods.  The family’s financial security has been decimated, and her parents have sacrificed their health to provide the best possible care for K.  K’s siblings will not have the luxury of college tuition paid for by their parents, and her parents will not be able to retire, comfortably at age 65 (maybe not ever).  K’s disability impacts every moment in the family’s life.  K is loved, without reservation; but K faces a lifetime of disability, despite the best possible care; because her parents allowed her to “take one for the herd.”

 

Well, how did we get here?

I took K in to see Dr. Ba on February 10, 2000 (she was 14 weeks old).  It was a Thursday morning.  K was fresh from her bath, calm and smiley, batting at her carrier toys and gurgling joyfully; I was looking forward to sharing her latest accomplishment – she could roll from back to front and from front to back, and I was eagerly thinking of printing the cutest picture of her holding her upper body off of the ground, looking right at the toy I was jiggling above the camera with a big toothless grin on her little face.  As I waited for our turn in the exam room, I was looking forward to Dr. Ba’s, “She’s just perfect!”  I had only mild concern that her nose was still a little runny and, since our last appointment, K did not seem to be drinking quite as much as she had previously. 

Dr. Ba breezed in and declared K was, indeed “perfect.”  She was gaining weight, and making beautiful eye contact.  The staff administered 3 shots, and by the time they were done, K was screaming harder than she had before.  She continued to scream all the while I got her dressed, I attempted to nurse her, but she refused my breast and kept on screaming.  The ladies suggested I give her some Tylenol when I got home, and put cold packs on her injection sites – this would, surely, calm her down.  I bolted from the office in a haze of stress and noise, just wanting to get out before she upset the other babies there. 

K normally enjoyed the motion of the car, and would ride in her seat gurgling and batting her toys; this ride was not like that.  Her screaming unnerved me, and I wanted to get her home and settled as quickly as the speed limit would allow.  Luckily it was only a 15 minute drive.  Once home, I brought her inside, and tucked her into my arms, singing, rocking her, and trying to calm her.  I gave her a measured dose of Tylenol, which she seemed to actually like.  Then, she went right back to screaming, so I changed her diaper, and tried to nurse her again.  She nursed for less than five minutes, spit up what little she had drunk, and began to scream again. By sometime after 1:00PM, I was really worried, and called the Dr.’s office – the girl who answered assured me that this was normal, and reminded me that I had been given a form with “expected” symptoms to reference. I pulled out the form and noticed it did, indeed list K’s symptoms, under the “mild” category: I saw things like swelling at the injection site (she did not have this), fever (she was a little warm, but I did not think she was hot enough to warrant sticking a thermometer into her tushy with her current irrational state), fretful behavior (a giant check mate on that one), lack of appetite (yup, she had this, too), and sleepiness (yeah right - not even close). 

Relieved that these were normal, “mild” reactions, I continued to walk and rock a screaming K until around 3:00PM.  She repeatedly refused to drink, and I chalked this up to normal post-vaccination behavior.  She finally seemed done screaming and her eyes were rolling outward like she was so tired she couldn’t control them.  Her eyelids quickly fluttered down and in the blink of an eye, she was out cold; I changed her diaper, and lifted her into her crib with a giant sigh of relief.  She looked like a blotchy angel lying so still; her face had angry red patches which stood out on her cheeks and forehead (in my head, I labeled this “monster face”).  I marveled at the level of concern I had felt and felt silly for bothering the doctor’s office.

K had always been a consistent wake, diaper, play, eat, sleep kiddo.  I figured I would have, at-worst, 3 hours before she would awaken ready to play (maybe eat first, since she hadn’t really eaten since before 9:00AM).  I ate a little lunch, and settled in for a nap nearby K, myself.  When I woke up, it was after 6:00PM and K was still sleeping.  My husband was home and we made dinner; I kept going in to check on K, certain she would wake-up any minute.  I am a firm believer in the adage, never wake a sleeping baby (plus, the hand-out said sleepiness was expected, and she HAD cried so hard and for so long) – so I didn’t.

I did, however, keep going in and putting my hand on her little chest, to be sure she was breathing OK…I eventually went to sleep with my hand on her chest.  She slept through the night for the first time in her 3 ½ months and somehow I slept, too.  At 8:00 in the morning, she still wasn’t awake, and I called the pediatrician’s office again, got a young lady again, and was reminded, again, that the handout says that babies can be sleepy after their shots.  Chagrined for my ridiculous concerns, I set about getting ready or the day; and less than two hours later, K woke up (and she wasn’t screaming, WHEW!).  K was quietly awake, barely moving, sleepy eyes open when I peeked in.  I was so excited, I scooped her up and gave her a big kiss on the way to the changing table!

Once there, I did the diaper change – I was surprised she was even wet.  I had to let one of her legs go, so I could reach for a wipe (usually if I tried to do the two ankles in one hand, she would vigorously kick in my tiny hand and set both of her legs free, but if I let one leg go, she’d just kick that one around happily); the leg did not kick around, it just fell to the table with a thud.  Surprised, I let go of the other leg – it joined its mate.  I was shocked, she was not kicking at all, just laying there; she was not even engaging in her favorite changing table activity of peering at herself in the mirror and smiling at herself.I finished the diaper change and attempted to get her to nurse.  She seemed interested for a short time, but quickly lost interest.  She was calm, but her eyes looked fuzzy instead of her normal sharp inquisitive gaze.  I thought maybe she’d like some tummy time and placed her on her round-about – she did not lift her head or upper body from the mat, but did begin to squall, so I picked her up.  She calmed and began to doze and I began to think about the sound of her legs falling to the changing table.  I called the Dr.’s office, again; and again, was reminded that the hand-out suggested injection site pain (probably her legs were sore and she did not want to move them).  Boy was I ever a pain in their neck…

 K went back to sleep.  She slept longer than normal, but was awake by mid-afternoon.  Her diaper was dry, she felt hot, and her legs were still limp and she still seemed to have no interest in me or the mirror, I was beginning to worry about dehydration; but she did nurse (only spit-up a little – disgusting new trend), took a little Tylenol, and even seemed to know I was there for a brief moment, before she fell back to sleep.

By the third day post-shots, I had adjusted to K’s new rhythm. I was even a little grateful for her longer sleeps and lower interest in any kind of attention or play – I got so much done around the house! 

Just as I thought I knew what the day would bring, K changed it up.  She was running a little warm, began having smellier, runnier bowel movements, and her bottom began to look angry and red.  She was lethargic when awake, and was spending less time than usual awake, and was not chortling and smiling.  She also started to lift her hands up and hold them still in the air in front of her face and stare through them (as if she were looking into a kaleidoscope or something). Her eyes would sometimes just kind of roll outward, and she would close her eyelids and sleep.

Late on the seventh day after the shots, K began to squeal like a dolphin.  The sound was quite strange, and I did call the Dr.’s office again; but the woman laughed at my concern and told me that I needed to read-up, K was “exploring her vocal range!”  And, further, this was the reason she was not making eye-contact, interested in playing, holding up her head, or kicking her legs – she was concentrating on vocalizing!  Apparently this new pursuit of hers even trumped our calling her name and her looking at us and smiling, and her chortling response when we “ate” her toes or kissed her belly…It was as if we were not in her world.

Throughout the evening, the squealing continued, and a new disturbing trend commenced, we dubbed it “cranky hours.”  K would begin to cry and progress to a full-on rage.  She wanted to be held, but would bend away from us in a backbend while screaming, the only thing that seemed to calm her was to walk and rock and jiggle her; for hours.  So we did this, and she would, eventually, fall asleep.  Then she would wake (warm), I would change her, feed her, rub her back, clean-up her spit-up (I checked, the baby book said this was normal for some babies), give her Tylenol (per dosing schedule and amount recommended on the label for an infant her size), bathe her, put her into clean clothes, and attempt to get her to engage in play or eye contact (not going to happen, mom), she would start to rage, we would carry her around the neighborhood rocking, jiggling, singing and soothing until she passed out; and, repeat (I read that this was called “colic - ” I was a bit afraid the neighbors would call the police for all the noise we made as we passed at all hours of the day and night with our child violently screaming).

By the eighth day, after the shots, K’s cranky hours were running together with only brief periods of sleep between them.  Her very loose stools continued, and her diaper rash seemed non-responsive to the three ointments we had tried.  And by the 9th day (it was a Saturday)  after the shots, she was warm again, and around 12:30 in the afternoon, her pitch had changed from rage to high-pitched wailing (as if she was in so much pain she needed to escape her own head).  We tried walking, rocking, jiggling, and singing with no improvement.  I tried nursing her – she was interested, but pulled away almost immediately, shrieking.  Then we tried driving around – no change.  Then we took her to the beach and strolled with her in the light breeze – no change.  We brought her home and tried a bath – no change.  She did not want to drink, sleep, be held, ride in the car or stroller, or play with us – all she -would do is shriek in a high-pitched wail.  I remembered the hand-out from the vaccines and pulled it out to read; if there is a persistent, high-pitched wail lasting more than 3 hours, we should go to the HOSPITAL!  We took K to the hospital, and presented her shrieking self and the hand-out to the triage nurse (I think it was almost 5:00 by the time we got to the hospital); we were frazzled and trying to explain what had been going on for the last nearly week and a half. 

We waited a while in the ER with K screaming her high-pitched wail, then were shown to a room.  They tried to cath her to get a urine specimen, with no luck; they applied a urine bag, instead.  K continued to shriek until about 6:30PM – she had shrieked almost non-stop for six hours!!!  The ER staff had given her some Pedialyte and I think the cold sensation and its sweet taste caught her attention.  Shortly after drinking this, she fell asleep.  Almost 2 hours later, K awoke, she was foggy and looked like she was going to begin screaming again, so I began making big, silly actions in an attempt to distract her - surprisingly, she noticed, and it worked – I actually got a smile for my efforts!  The staff was planning her discharge – despite my insistence the vaccine hand-out had brought us in, the ER doctor diagnosed K with an ear infection and sent us home with a prescription for Amoxil and more Tylenol.  I kept telling the staff I had not seen her touch her ear even once, nor give any indication of pain there, how could she have an ear infection?  One of the staffers wadded-up the vaccine hand-out I had insisted they look at, and tossed it into the trash.  They shooed us out the door, making us promise to follow-up with our pediatrician in three days.

We filled the prescription for Amoxil and bought a back-up bottle of Tylenol, then headed home, exhausted, with a drowsy K.  I got her to nurse a little, cleaned-up her spit-up, gave her a bath and her first dose of Amoxil (along with some Tylenol), and we all went to bed.  K awoke two hours later shrieking and arching her back; her diaper was full of diarrhea, and it smelled even worse than her bowel movements had, over the last few days.  I cleaned her up, and could see her rash was worse than ever, even putting on the ointment seemed painful for K.  I let her try to nurse, but she reacted as if in pain, so I tried a bottle with a large hole nipple.  She drank some, and then followed her new routine of spitting-up some of what she’d consumed.  She proceeded to cry and rage, so I followed our established routine; now, it seemed she could sustain the behavior even longer – sometimes up to 4 hours!!!  She might drop off to sleep after this amount of time, but she would not STAY asleep for more than 2 hours.  Sunday passed in a blur of too-warm baby flesh,  Tylenol/Amoxil, nasty, runny, stinky diapers, raised red rash creeping from her bottom to her back, screaming rages, and seemingly endless walking, rocking, jiggling, and singing.  Tuesday morning could not arrive soon enough!

On Tuesday, as early as I could, I made an appointment to see ANY doctor at the practice.  I was desperate for help, and I felt the Amoxil was making everything much worse than it already was.  I insisted that K did not have an ear infection – couldn’t he see this?  With an otoscope, he looked and agreed there was no sign of an ear infection; but the pediatrician insisted we complete the Amoxil.  I was frustrated and angry that he seemed to purposely not see her swollen belly and horrible rash.  I tried to explain all the symptoms we had witnessed since the shots.  It was like talking to a wall.  We went home, and everything continued to worsen – she ate even less, slept even less, her rash began to ooze, and her diarrhea began to flow like a fountain.  And she seemed entirely miserable, screaming almost non-stop.

We make it to Thursday (24-February), before I feel I have no choice but to go to the pediatrician.  K is decompensating, has a fever over 102 degrees, is refusing to take any breast or bottle.  The raging has not stopped, the diarrhea has not slowed, she is not sleeping.  I am advised to make sure she does not get dehydrated, and to continue to give Tylenol for the fever.

Our life is insane with K’s misery.  We are at a loss.  Each day passes in a similar rhythm to the last, K in pain, barely eating, sometimes feverish/sometimes not, screaming in a raging bellow for hours on-end, barely sleeping, sensitive to any sound or motion, not making eye contact or responding to us (unless we do something very big and unexpected), weak legged, spouting diarrhea, rashy, bloated, monster-faced…Our new normal.

Wednesday, March 1st, I head back to the pediatrician’s office to try and get them to pay attention to my concerns, the diarrhea is now sporting mucus and blood, K’s raging has not slowed, her sleeplessness is continuing, her rash is weeping, she is often feverish, her eyes are still glazed-over, her belly is bloated, and she can barely lift her upper body off of the floor.  They suggest Pedialyte and ointment.  It is as if my concerns are inconsequential, and K’s issues invisible.  I leave disheartened, exhausted and wondering if K will ever be healthy again.  Our rollercoaster of misery rumbles forward - another month, more of the same.  I am becoming a zombie.  On the bright side, at the end of the month, K started regaining her strength in her arms and neck– I have a new picture of her holding up her head and upper body ; in this one, I could not get her to look at the toy above the camera no matter what I did, her eyes look glazed, and there is no smile.

Time for another Well Baby Check – it is now April 12, 2000 (K is almost 6 months old).  Although K’s fevers seem to have stopped, all of her other issues continue unabated.  At this visit, K gets some more vaccines.  She is still having rashes that are oozing, non-stop diarrhea, three hour crying jags, continued reduced appetite, inability to maintain sleep.  Additionally, she now has a cough.  I am concerned, my friend’s baby is two weeks younger than K, and has been sitting independently for two months.  K “sits with support,” I have to put her back against a cushion, and prop her from both sides – and K’s legs are still like spaghetti (though when she tantrums, she seems to be able to produce some decent kicks).  I am starting to worry about K’s development, and am still concerned with her lack of appetite, sleeplessness, and hours-long tantrums…I might as well be speaking in tongues, it is as if the doctors hear nothing when I speak.  K has started to eat solid foods.

We are back at the doctors’ office in May, again in June, and in September…Same, same…It seems the only people with any concern for K’s situation are her parents.  I think I knew, back in April that there was little help to be gained through the pediatrician’s office…I don’t know why I kept trying.

In September, we joined the local Lab School.  K has started to babble, will finger-feed preferred foods, and went from rolling to crawling to walking in less than a month.  K has started a new behavior – she will stretch her arm out into space, extend her palm upward, fingers splayed-out and just hold it there.  Other times she will hold her hands in front of her face and just through them (she has done this for many months).  It is very quickly apparent that K is developmentally behind her age-peers, who are in her Lab School class.  After talking to the other parents, I see most children do not have raging jags for hours at a time, and most of the children sleep ten hours in the night.  Also, none of the other children have such a horrible nearly always-present rash (I learn that I change K’s diaper far more frequently than others change their children).  In the next week, I take K back to the Dr.’s office - I am concerned she is developmentally behind, still having the rashes, non-stop diarrhea, three hour crying jags, continued reduced appetite, inability to maintain sleep.  And she now has a runny nose – not surprisingly, no new guidance from the doctor…

October rolls around, K is now 1 year old.  K has a well-check and receives her MMR, Varivax, and Prevnar shots.  I am concerned she is still having rashes, bloody, non-stop diarrhea, three hour crying jags, continued reduced appetite, inability to maintain sleep.  I ask the pediatrician about evaluation to assess K’s Developmental status.  He insists she is perfectly fine (though, he long-since stopped saying, “She’s perfect”). 

November arrives, and we get K to imitate Mama, Dada, and yada; there seem to be some definite physical, social, sensory, and feeding issues Mommy is getting more worried.  K still has non-stop, putrid diarrhea.  K does not sleep more than an hour and a half at a time, and will not sleep during the day.  K requires deep sensory input in order to get to sleep (usually she will bang her head into my hipbones for up to three hours, while screaming, before finally falling asleep), she will sleep for an hour or so, then wake screeching, screech for a couple of hours while banging her head into my hips or the wall, then sleep again, and so on, until daylight…K has no interest in toilet training.  K will not follow a finger pointed at an item of interest and cannot point her own fingers.  K does not use momma or dada to refer to her parents.  K’s diarrhea is so foul, it can be smelled outside of the house with the windows and doors closed; it is non-stop all day and night.  K’s rashes ooze and bleed.  K will sit quietly for hours in one spot, staring through her fingers.  K will not respond when we call her name.  K will run from me in parking lots, and across traffic-laden roads. When K stumbles and falls (this happens frequently), she will scream with anger for an extended period of time, but I cannot pick her up – she will bite, scratch and head-butt me; unless she holds out her arms to me first.

December arrives and K's birth family brings Christmas gifts.  K has little interest, needs frequent redirection.  She wants to eat the paper – she has pica.  K makes grunting noises.  Later seeks deep pressure sensory input by head-butting the mattress (she would also run her head into our hipbones, the walls, couches, and sometimes the floor).  Her diet consisted of LOTS of milk - she would go to the 'fridge and say "ma," as I poured the milk, she would literally moan in anticipation.  She would down the entire cupful in seconds and beg for "mo."  (other than squealing, these are her words)  If milk was not forthcoming, K would shriek and throw herself about and run into things with her head.  Other things she would eat included yogurt, mac 'n cheese, cheese ravioli, pudding, cheerios, and fruit of any kind.  K will watch action and laugh at strange antics, but will not often make eye contact.  Her lack of sleep, diarrhea, and screaming fits continue.  It has been almost a year since K decompensated; I feel like a veteran with PTSD.

In January I pursue testing with the local Florida Early Intervention team; K tests delayed, but not enough to qualify for State's Early Intervention program.  At the end of the month, K gets more shots. K’s problem behaviors continue.  February arrives, and K has begun drool significantly, and her pica is even worse than it was.  K elopes constantly.  I enroll K in Private Speech therapy.  Our insane home life continues – no sleep, many hours of screaming and head-butting, putrid, non-stop diarrhea, K is non-responsive to her name, unafraid of danger, and will suddenly stop and stare into space. 

March arrives with no behavioral, sleep, or bowel improvement.  K squeals often to express herself.  She has been doing this since shortly after the event that sent us to the ER last February.  If K wants something, she cannot use words or point, she gestures with her whole hand and squeals instead.  She also has become increasingly oral and now frequently mouths her fingers.  She mouths EVERYTHING.

By April 2001, K finally tests delayed enough to qualify for State's Early Intervention program.  She will get PT, OT, Speech.  K watches other children, but from a distance.  She will play near 1 other child.  K's words at 1 1/2 years old: “mo," “ma,” “da," "uppa," waves hello/good-bye, signs "more" and "all done."  K still is not able to point or follow your finger if you point.  She looks at inanimate objects, animals, or people, but will not make eye contact (she will look directly into a camera, though). 

May arrives and brings K more shots.  K still cannot sleep, does not like to be touched (clipping nails, brushing teeth, or brushing hair is now a dangerous two-person operation), K will not respond to her name, has figured out how to unlock doors and elope the house, and is like greased lightning in parking lots. Her diarrhea continues, is composed of putrifying, undigested food, and is often found all the way up her back to her shoulders.  K still tantrums for many hours a day, but is now bigger, and when she throws herself backwards, I feel I cannot keep her safe from the walls and floor.  She uses whole hand gestures, and has some new vocalizations:  "hmm-mm" "mamamamama," "dadada," “ba.”  She is drooling uncontrollably in great streams, her pica causes her to put just about anything into her mouth, she will not make eye-contact with momma or dada, but can now "find" mama." K still does not sleep, and seeks deep sensory input for hours at a time.  Sometimes I find her sitting perfectly still, staring through her hands or flicking her fingers in front of her eyes.

June, July , and August come and go.  K still does not respond to her name. Continues to drool rivers. I give birth to her sister.  We attempt to introduce K to S.  She is not interested or curious about the baby, she just mouths her fingers, drools. Nothing changes for the Pa household, vis-à-vis K.  Now there are two children to bathe, diaper-change, and feed.  K discovers her sister as a cause and effect toy, and cannot be left unattended for even a minute (for the welfare of her little sister – K will bite her, scratch her, step  on her, push her and more). 

September finds K’s behaviors intensified.  K is squealing more now.  She is gaunt with a belly.  She babbles some, spends LOTS of time with her fingers or inedibles in her mouth, and must hold a toy in each hand.  September turns to October, K has been in Speech therapy for 3/4 of a year, and OT, PT, EI classroom for 1/2 year.  K is turning 2.  I am concerned that she is still having rashes, that bloody, non-stop, putrid diarrhea, three hour crying jags, continued reduced appetite, inability to get-to and maintain sleep.  She is having physical, social, sensory, and feeding issues as well.  I believe there is something VERY wrong with my child, but her regular pediatrician refuses to acknowledge she has a disability. 

I FINALLY find a pediatrician who specializes in kids like mine - Dr. D Ber.  Although he makes no promises, he LISTENS to my concerns and helps to put K’s symptoms into perspective.He helps organize the systems of concern and begins to evaluate systemic function and status.We undertake specific tests and I share what is found with our local pediatrician; who finally, refers us to a neurologist. 

K is subsequently diagnosed with Global Developmental Delay, Encephalopathy, GI Dysfunction, Epilespy, Hypotonia, Severe Autism, and more, by a series of specialists.  K’s first EEG shows poorly regulated brain activity, she is found deficient in Carnitine and Biotin.  She is found to have systemic yeast overgrowth.  Our newly found pediatrician and neurologist make suggestions to improve K’s neurologic, metabolic, and gastro-intestinal functioning.  With some very simple dietary modifications and the addition of special supplements, K begins to demonstrate small improvements.  Over the years, more lab tests have revealed more information, and each year we assess K’s interventions, always seeking to yield better health and better functional outcomes; always hoping THIS year will be the year where we can reduce the level of effort it takes to keep K moving forward, one baby step at a time.

Life is not easy with a child as challenged as K.  Her cognitive status is tentative and balances precariously on a foundation which now involves a complicated regimen of supplements each day, constant supervision, intensive 1:1 ABA therapy using Discrete Trial Training to learn every new fact  and skill (it can take K up to 300 planned teaching opportunities to learn a single new fact, and she has been working to master many life skills, like bathing, eating a meal, and safely crossing a street, for over 8 years), and a carefully planned for nutritional value,  extraordinarily clean (organic) diet, free of all known allergens and sensitivities (mostly made from-scratch from food procured at great expense and prepared with massive effort).  For the last 9 years, K has been supported 1:1 in the classroom, and attends 1:1 therapy every single week-day, after school (25 hours each week).  K’s family provides K’s therapeutic support every evening and all week-end long.  We are blessed to have K’s loving and supportive team of specialists and therapists, a classroom which allows K to participate in the mainstream, and her siblings with their willingness to guide and re-direct K through the ever more bewildering jungle we call life.  Each day we pray for K’s continued development and safety – as we age, her father and I worry what will happen to K, when we are gone…


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