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 Hi to all!
My name is Bree Bamonti. I am a mother, a wife and an advocate for my daughter, Avery. I have three children - Dominick (6), Julian (4) and Avery (3), of which my youngest was given the diagnosis of Septo Optic Dysplasia at the age of 5 months. Here’s our story……
After a long nine months and a very complicated pregnancy, Jason and I were blessed with a bundle of joy on November 14, 2006. Avery Jane weighed in at 7 lbs 7 oz and was 21 inches long, and although we fully anticipated her arrival, we did not anticipate the complications she would have after she was born.
Starting at 15 hours old, Avery was experiencing hypoglycemia, seizures and jaundice. Reluctantly, I went home 2 days later, healthier than a horse, but our little girl was kept in a glass box under billi lights and hooked up to an IV for the next 6 days. The doctors attributed her seizures to the hypoglycemia so she would be released as long as she maintained her glucose levels for a 24 hour period. So on November 21, Avery had finally come home to meet her brothers Dominick (3) and Julian (1). Needless to say the first 3 months were difficult. It seemed we could not keep Avery healthy if our lives depended on it. Avery had every sickness in the book- RSV, pneumonia, ear infections, roto virus, bronchitis...you name it she got it. No matter what we did, she kept getting sick – as soon as one would clear up the next just took its place! We were in and out of the hospital for 3 months, this whole time; she was never what I would call healthy. Jason and I were told by many doctors “she is in day care and she has two older brothers…. she is going to get sick.” Then, when Avery was 3 and a half months old we had the worst night of our lives.
Avery woke up every 2 hours to eat- you could set a watch to it. Feb 4th I went to bed at 10:30. Jay went to bed at 12:00 am. We both checked on her before falling asleep. At 1:45 am, something woke me up out of a sound sleep. I sat straight up in bed and said "Something is wrong; Avery hasn’t woken up to eat". Now this has been 3.5 hours since she last ate. I ran in to her room, to find her barely breathing, unresponsive, soaking wet from her sweat and red hot. I screamed at Jay to call 911.
 Jason is a paramedic and has extensive training in emergency situations; he took one look at her and grabbed the phone. It took the ambulance only 2 and a half minutes to get to our house, but I swear it felt like 3 hours! In those two minutes, Jason took Avery outside, in the middle of a Chicago winter, to try and shock her into waking up. When we got into the ambulance her temp registered at 105. The emergency room was a nightmare. Jay and I are standing in the ER watching 5 nurses poking at Avery’s arms and legs trying to find a vein to start an IV. This whole time she is not making a sound.
Our local hospital did not have a PICU so within 15 minutes of us being in the ER we over heard the doc telling a nurse "call all hospitals within 60 miles that have airlift capabilities and have a PICU bed available". Of course this was in the middle of the only blizzard we had in 2007. Loyola University was the only hospital that had both components: a helicopter and a bed. The helicopter could be at our local hospital in 23 minutes, but they had to stabilize her before she could fly. So after trying tirelessly to get an IV, they decided to do and IO (basically, they drill into a bone in her leg and push fluid into her that way). Her glucose was not registering on the glucometer and her sodium was through the roof. The airlift team for Loyola arrived at the hospital; they got her stable enough to fly and transported her to Loyola. Jason and I had about an hour drive to get to Loyola and all I could think of the whole way there was “Please God, take me instead.”
Upon arriving at the hospital we were greeted by a gaggle of doctors; Loyola had every base covered. Within 24 hours, Avery had a team of 8 doctors trying to figure out what was going on in her body - Infectious disease, GI, endocrine, hematology, neurology, geneticist, general ped just to name a few. They were not sure what was happening. Cancer? Liver disease? Some foreign disease? Unknown genetic condition? After a VERY long month, they started having some answers, but were unable to put the whole puzzle together. Within that month Avery had undergone, a blood transfusion, bone marrow biopsy, liver biopsy, MRI's, CT scans and countless blood tests. One of the doctors noticed that Avery’s eyes ‘bounced’ a lot. After getting her stable enough to go home, we still hadn’t received a final diagnosis. We knew she had endocrine dysfunction; at that point she had cortisol deficiency, diabetes insipidus, growth hormone deficiency and severe reflux/GERD. Loyola gave us a referral to see a pediatric ophthalmologist to address the nystagmus.
It was roughly 2 weeks after Avery was released that we had the ophthalmologist appointment. Avery was roughly 5 months old at this point. We entered the exam room and the doctor looked in her pupils. He then dilated her eyes and brought in his resident to take a look at Avery. It was at that point that I became concerned. We were in that office when the bomb was dropped. The doctor told us that he didn’t think Avery's optic nerves were fully formed, thus leaving her visually impaired. He diagnosed her with Optic Nerve Hypoplasia. He stated that he felt she may be able to see shadows, but that would probably be the extent of her vision. Obviously never hearing about this condition before, I asked what can be done to fix it. He replied “nothing, absolutely nothing.”
I went into immediate shock-shut down mode! I don’t even remember much of what was said after that. All I remember is him drawing a little circle on a sheet of paper then he tapped the tip of his pen on the paper. He said the circle represented a normal optic nerve and the spec from his pen was Avery's optic nerve IN HER GOOD EYE! Then he said she needed some blood work done, so off to the lab we went.
At that point I felt very little hope but was in complete shell shock. I was sitting in the waiting area of the lab with my dad and, I remember thinking to myself, "How am I going to call Jay and tell him his daughter is blind over the phone?" I broke out sobbing looking at my little girl, when an older lady came over to me and handed me some kleenex. She grabbed my shoulder and said "Don’t worry honey, it’s all going to be okay."
 One small act of kindness can follow a person through life. Looking back, it was nearly impossible to keep my hope alive, until one small, random act of kindness restored my faith and reminded me that life is so much better than it may appear. Even during our worst times, there’s still hope We had an appointment with the neurologist as a follow up to her MRI, when he gave us the final diagnosis of Septo Optic Dysplasia. Avery not only had visual impairment and endocrine dysfunction but she also had partial agenesis of the corpus callosum.
Once we finally received the final diagnosis, we turned to the internet for information. We needed to know what we were up against, what we were in for and what kind of life we could expect for our daughter. We were devastated. We spent the next few weeks crying and yelling and questioning our faith and crying some.
Needless to say, we needed to get over the initial shock of what was happening and figure out what to do for our daughter; we decided to pick ourselves up from the bootstraps and be advocates for Avery; there simply was not an alternative in our minds.
I stopped working, Jason started working 75 hours a week and we spent the next two years dedicating our lives to getting Avery what she needed, whatever that happened to be. She was involved with every type of therapy imaginable. My entire world became juggling doctor’s appointments, therapy sessions and phone calls. I went through a period of feeling tremendous guilt because I also had two little boys at home that were often times thrown in front of a TV with a bag of teddy grahams because we had a therapy session to finish or mommy had to make phone calls to refill medications or we could not go swimming because Avery could not be in the heat.
 Juggling everything definitely took a toll on me emotionally and physically, I felt isolated, alone and I felt like no one understood what I was going through. At the time, I thought the visual impairment was the most devastating diagnosis, but looking back, the constant juggling act of everything in her life was the most difficult to handle. Avery wasn’t sleeping, she was throwing up 15 times a day, we had 7 therapies a week, her medication schedule was rigorous and unforgiving and I was losing my focus. That’s when I found MAGIC. I was surfing the web at about 3 am because, of course, Avery wasn’t sleeping, so I was up. It was right before the annual convention, so I took a shot. I called the next day and asked if I could sign up late to attend the seminar portion of the ONH/SOD division. The wonderful women at MAGIC said yes. The following week I hopped in the car and drove to the convention in hopes of finding someone who could relate to me, even if it was just one person that knew what it was like, that understood, one person that could say to me “I know what you are going through” and mean it! Well, I found what I was looking for. Four women in particular took me under their wings and basically showed me that I was not alone, that everything I was feeling was normal and OK and most importantly I had a newfound family and support system! After attending one convention, I was a changed person forever. Remember, one small act of kindness can follow a person through life. I call those women my defibrillaters, because they literally brought me back to life! All of this was possible because of MAGIC Foundation; I felt like the song “Amazing Grace” – I once was lost but now am found.
Soon after the convention, I joined the list serve- I was armed with information, support, a place to vent my frustrations and ask questions. The ONH/SOD families have become a huge part of my life. Avery today, is a completely different child than the child that was lying in the hospital bed 2.5 years ago. We were told she would never walk, never talk, never see, never think- we knew that doctor was wrong, we just didn’t know how wrong! Avery’s vision is currently considered partially sighted; she has light perception in her left eye and has visual acuity of about 20/100 in her right eye. She is currently being treated for diabetes insipidus and growth hormone deficiency and we continue to work with Avery on her sensory and feeding issues. However, she just turned 3 in November, started school in Dec. and is running, yelling and figuring out new ways to taunt her brothers every day. Given the previous diagnosis, I would say she is holding her own!
Dominick and Julian (now 6 and 4) are extremely active in wrestling and our family outings consist of tournaments on the weekends with Avery cheering on her brothers! I now work part time at a local hospital and will be starting nursing school in the fall.
 This experience has led me down roads I never thought I would travel, it has taught me to be strong when I need to be but also to ask for help when I need it, and it has given the opportunity to examine my life and all of the blessings that are in it.
I hope this has given you a small glimpse into my life as a parent of a child with ONH/SOD. I want you to know that I am dedicated to the MAGIC foundation and to you. I hope to pass on the information I have gained over the past couple of years as well as inspire hope, spread awareness and instill the value of being an educator of our children’s condition.
I would like to close with lyrics of a song that I had posted on Avery’s crib throughout the duration of her hospital stay at Loyola. The song is titled “Wonder” by Natalie Merchant
"WONDER"
Doctors have come from distant cities just to see me.
They stand over my bed disbelieving what they're seeing
They say I must be one of the wonders of god's own creation
and as far as they see they can offer no explanation
newspapers ask intimate questions, want confessions
they reach into my head to steal the glory of my story
they say I must be one of the wonders of god's own creation
and as far as they see they can offer no explanation
people see me, I'm a challenge to your balance
I'm over your heads how I confound you and astound you
to know I must be one of the wonders of god's own creation
and as far as you see you can offer me no explanation I believe fate smiled and destiny laughed as she came to my cradle
"know this child will be able"
laughed as she came to my mother
"know this child will not suffer"
laughed as my body she lifted
"know this child will be gifted with love, with patience and with faith she'll make her way."
If you have a child with ONH or SOD, I am here for you!
Email me: ContactUs@magicfoundation.org
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