| .Tyler Phoenix Montgomery |
| Thank you to everyone who continues to help us raise funds and spread awareness. This is an ongoing fundraiser, and any and all help is much appreciated! |
Check out lower home page, photo album & ways to help us for recent updates!
| Kabuki Syndrome Kabuki Syndrome is quite new, only having been recognized in 1981 by two doctors in Japan. Most cases of Kabuki are sporadic. It was named after the traditional Japanese Kabuki theater due to the resemblance of the facial features. Kabuki syndrome is rare. However, it is still probably greatly undiagnosed since the number of medical professionals who are familiar with the syndrome is still growing. As more and more geneticists become aware of Kabuki, more children are being diagnosed. Characteristics of Kabuki Syndrome Facial Features: Long palpebral fissures, long/thick eyelashes, high/arched eyebrows, prominent fingertip pads, short/curved fifth fingers, cleft or high arched palate, lowset/ prominent ears. (Tyler has long palpebral fissures,long/thick eyelashes, high/arched eyebrows, prominent fingertip pads, short curved fifth fingers and toes, high arched palate, lowset / prominent ears, depressed nasal bridge & plagiocephaly (wore cranial orthosis (molding helmet) for 6 months with a 35% correction.) Skeletal: Scoliosis, sacral dimple, vertebral anomalies, hip dislocation, patella dislocation (Tyler has patella dislocation) Neurological: Microcephaly (small head), seizures, developmental delay, sensory difficulties, feeding problems (Tyler has microcephaly, metopic craniosynostosis, (Surgical ICP monitor placed 2/02 to measure intracranial brain pressure - cranial reconstruction not medically necessary due to poor brain growth, cosmetic surgery not covered by surgery to remove bulge in forehead and straighten out eyes and ears not covered through insurance.) developmental delay, sensory difficulties and feeding problems (GERD ~ medicated 1/02 - till 8/05 he has pretty much grown out of most of the feeding problems over the years) Opthalmological: Coloboma(cleft in the iris or retina), strabismus(poor eye muscle control), nystagmus(involuntary rapid eye movement), Blue sclera(blue overcoat of eyeball), poor depth perception. (Tyler has myopia, astigmatism, strabismus and poor depth perception ~ prescribed glasses @ 18 months old - has not worn them consistently till 2007) Heart: 30% of children with Kabuki have some type of heart defects. (Tyler has a bicuspid aortic valve, small left ventricle and a murmur - followed every 6 months) Other Common Conditions: Kidney defects, gastrointestinal problems, hypotonia(poor muscle strength), neonatal hypotonia, neonatal hyperbilirubinaemia, neonatal hyperglycemia, abnormal dentition, recurrent otitis media(ear infections), premature breast development, small/short stature, hearing loss, fingernails grow upwards, vitiligo vulgaris(patches of depigmentation), preauricular fistula(tubelike passage within the body tissue), joint laxity, poor immune system (Tyler has the Kidney defects - left sided hydronephrosis, UPJ obstruction, (surgery 7/01) vesicouterial reflux (surgery 4/04) ~6/07 Stable Stage 2 Renal Disease ~ and overactive bladder) hypotonia, abnormal dentition ~ oral surgery 5/07 & 6/07) small/short stature, recurrent otitis media, (bilateral myringotomy tubes placed 8/03 ~ fell out 3/07) hearing loss, finger & toenails grow upward and very thick, low immune system and joint laxity. He also has some behavioral problems. He cannot tolerate changes in routine, asks questions over and over, very impatient, will bang head or bang arms off of walls or furniture when bored or frustrated, he has extreme tactile defensiveness with things against his skin & in mouth, upsets easily, Self soothing is virtually impossible (35-55 mins) loses focus easily and so on.) |
| "Welcome to Holland" By Emily Perl Kingsley, 1987. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away...because the loss of that dream is a very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. |
| Celebrating Holland- I'm Home By Cathy Anthony (my follow-up to the original \Welcome to Holland\ by Emily Perl Kingsley) I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts. I have come to love Holland and call it Home. I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined! |
| ~*~ sleep little angel on your cloud of snowy white a blanket from heaven is covering you warm & tight magical stardust has been sprinkled on your bed sweet dreams of wonder fill your sleepy head sleep little angel the moon is shining bright sleep little angel you're in loving arms tonight ~*~ |
Visitors since June 19, 2007
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| Welcome to Kabuki Kutie A site all about our Kabuki Kutie: Tyler Montgomery |
| Please help us raise funds for Tyler's upcoming procedures not fully covered through insurance. Thanks in advance for any amount donated! You will be helping our little Kabuki Kutie Smile! :) |