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Apple Blossom~ Life With Incontinentia Pigmenti ( I.P.)
Amaris Reynoso~Apple Blossom Medical Fund which is dedicated to providing the dental and medical needs of Amaris Reynoso by raising funds and education through activities,community awareness, and educational outreaches.We are dedicated to Amaris' overall well-being, and her health is at the core of our existence. We believe Amaris, and all children affected by I.P. and E.D., deserves the best health care, and we are determined, as a a non-profit organization, to provide her, and eventually others, with the best medical and dental opportunities through the funds that we raise for Amaris' rare genetic disorder.
1. Make a direct deposit into her Medical/Dental Account through Chase Bank:
3. Mail us a Check or Money Order. Email or Call me for our Mailing Address
~~ALL donations go directly to Amaris Reynoso to help offset her medical and dental needs~~
This is her story~~
Amaris Leora Eden Reynoso
and her life with Incontinentia Pigmenti
Amaris Reynoso aka "Apple Blossom"
Our fourth daughter, Amaris Leora Eden Reynoso ( aka Apple Blossom) was born December 21st, 2004. I had a very easy pregnancy with Amaris. No complications, no signs of trouble. Nothing. When she was born however, there were some concerns made right away by the nursing staff. I was just overjoyed that our baby was here, and was a little pre-occupied with her arrival than notice any of her blisters. Right away, the nurses asked if I had genital herpes. I was shocked, and told them, "no", but that I did have a cold sore twice when I was pregnant with her. They said that wasn't a problem.They figured Amaris had sucking blisters from the womb. That she had sucked so hard on her hand that she left big yellowy blisters. The problem was, she had one on her scalp. So, the next day, they scrapped one of her blisters off, and took it to the lab to see if it was viral or bacterial. It was neither.
They had no explanations for her blisters. Her hearing test was perfect, and we were sent home. We went to her one week appointment with the pediatrician, and he talked with us about her blisters, which spread all over her torso, arms, and legs throughout the week. He sent us to the head Dr. of the Pediatric Intensive Care Unit at Sierra Vista Hospital. He brought out his book, and thought it could be two things, but he wasn't sure. So he sent us back to our pediatrician, who directed us to Dr. Herton, a pediatric Dermatologist. He took a skin biopsy and we went on our way to wait out the news of what our daughter was dealing with on a daily basis. She was two weeks old when we got the results. Amaris was born with a very rare genetic disorder that has affected 900-1200 documented cases, called Incontinentia Pigmenti. At that first moment, I thought the floor was dropping out from under our feet.We were devastated, isolated,scared, and
depressed. Most of the websites that we were getting our information
from had grim outcomes for children of Incontinentia Pigmenti ( I.P.).
Seizures, strokes, mental retardation, blindness, retardation, teeth
issues,  balding, wiry hair, nail problems, tumors under nails, blistering for at least 18 months to two years old, wart stage, and a brown pigment ALL over body. It was devastating and hard to swallow, because most of her symptoms were to come at any moment and whenever they felt like it. We felt as if we were living with a live time bomb, able to explode at no moments notice. It was very scary, and still can be honestly, not knowing when or if she was going to get a stroke or seizure,or tumors under her ridged nails. Would she get teeth? Will she be mentally handicapped? What was Amaris' future going to be like? So that is when our pediatrician started our life of "Specialist" appointments. She went to the Neurologist, the Pediatric Ophthalmologist, the Retina Specialist, the Dermatologist,all within the first three weeks of her life. She was
diagnosed with abnormal blood vessels of her eyes, so we were rushed the
next day to L.A. to Children's Hospital Los Angeles to schedule a
retina operation. That was miracle #1: that they found it before her
retina detached leaving her blind, and #2 that they initially thought
they were going to lazer both eyes and it ended up only being done to
her right eye. She is only the 2nd IP patient ever recorded to have only
ONE eye affected by abnormal blood vessels. It is always either  both or none. Not just one eye. So that was our first scary procedure
done to her, which was followed by routine retina check ups which
included holding our freaked out, scared to death baby down so the Dr.
could check her retina out once a week, to once a month, to now, once
every three months. All good so far. Praise the Lord!! So next was
just finding our niche with our life with I.P. Between breast feeding
clinics, Tri-Counties Regional Center in home support services coming to
see Amaris, pediatrician follow  up appointments, retina appointments, MRI's for the neurologist to determine a baseline for her brain..which was a brain of a normal baby..Awesome!, and just trying to get by emotionally, we just desired to live a normal life with our beautiful baby girl. When she was old enough to get her first tooth, we noticed it was a pointy one. That left us questioning the rest of her teeth. We waited patiently. When she was 18 months old we had a full dental MRI of her mouth to see the total amount of teeth she would expect in the future. We were told she had 2 adult teeth on top, and three molars, besides the 8 baby teeth she had had already. That would be it. 2 adult teeth. When she was 3 1/2, we had another MRI of her teeth, and found she will have 9 adult teeth and three molars. That was awesome news!!So that is where we are at. 9 teeth. Actually she had two pulled due to injuring them, leaving her with 7 teeth. So that has started our next focus and phase; Dental Care. Now that she is nearly 5, and having 7 teeth total, it has been a real hard road for her eating and speaking. She choked ALOT as a baby and child, but never skipped a beat for eating anything and everything..from carrots to meat, to celery to beef jerky..she never stopped amazing us by her abilities to adjust. After she got her top middle two teeth pulled, we were concerned for her speech and growth of jaw. The plastic surgeons had suggested that because of her lack of jaw bone, we may have to do a jaw extraction, where they cut her jawbone, place screws in her jaw, and we would have to manually screw her screws daily to force jaw growth. No bueno. So we wanted to prevent that, which we don't really know if dentures will do the trick, but we are hopeful..So we went to UCLA to get her upper set of dentures. That was a grueling month of weekly trips to UCLA dental clinic.Just the other day we had her dental appointment here on the Central Coast, and our dentist adjusted the fit of her dentures. He told me that her dentures will NOT do the trick of growing her jaw, and that he was "sorry, but only roots in her jawbone can produce jaw growth." Well, we believe in miracles and the healing power of Jesus Christ. He CAN do ALL things!! We just trust him to either do this Himself or that the Dr.s will do whatever is necessary to help her to have the best looking jaw she deserves as thePrincess of the King, Jesus Christ. On a lighter side, we just had her second Apple Blossom Medical / Dental Fundraiser. Our goal is to raise $60,000 for Amaris to receive by the time she is an adult. So she can get herself a full set of dental implants. Her medical account will also help to offset any travel expenses, hospital bills, hotel stays ( if necessary), denture care (adhesives and cleansers), special treats for hard appointments, ect.. We made a total of $420.00 on her first fundraiser ever!! We are so excited for her!! She was thanking everyone who came to her Pampered Chef Party for "coming to my party." What a doll she is!! So, on to the next stage in our journey with Incontinentia Pigmenti: Awareness and Support for the 1500 babies, young children, young adults, and adults and their families. I want to see every child affected with I.P. live a life full of joy, hope, and happiness..that everyone of them would have a smile they could shine to the world and be super proud of. Unfortunately, that takes money that most insurances wont cover. We are blessed to be supported by the www.NFED.org and www.IPIF.org The N.F.E.D. gives scholarships to those affected by dental issues. Of course it isn't the whole amount, but the fact they are even able to give anything is a blessing. Amaris is nearly 7 years old, coming up this December. She outgrew her first set of dentures with
in three or four months. She is now ready for a new pair.. Which brings
me to the thought of another grueling month long ordeal. I think in this next
trip, I am wanting to take her to the UCSF dental clinic. I'm just torn,
because we are reall needing to get her to L.A. to have her seen by the
plastic surgeons at CHLA..but...maybe, I will look into it at Stanford,
and see if we can make an appointment at their plastic surgeon
department. I need to schedule another fund raiser for her. It is
financially challenging to make ALL these trips possible. Thankfully,
all of the love and support for Amaris has
added up to almost $1000.00 over the past few years. I just want to see
that multiplied beyond imagination, because it is Ben and my heart, as
well as Amaris' heart, to serve others and give away what we have been freely
given. I really truly want to see others like Amaris, get the teeth
they deserve...and that is where Amaris, You and I come in..Together we
CAN make a difference.. Donations are tax-deductible, and I can send you
a receipt for your contribution...New Pictures coming soon!!!
Updated by Momma, Katie Reynoso December 12th, 2011 |
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