Monday, January 30, 2012

Chamber of Hope Day 1 and Genetics Appointment

Today was a busy day.  Finn caught the bus for school this morning, I took Camila to swim lessons, got home, fed Camila lunch, got her down for a nap, and left to check Finn out of school from school to make the trip down to All Children's Genetics in St. Petersburg and follow the doctor apt with his first Hyberbaric Oxygen Therapy treatment.

For the genetics appointment, my husband, Finn and I came prepared as possible.  We arrived to find out that the research we printed off on treating genes with gene therapy and stem cells is meaningless for Finn's syndrome(s). 

We were informed that genetic syndromes like Downs Syndrome is relatively easy to occur and Finn's situation is different and very "hard" to happen - referring to what every random event occurred when the embryo we now call Finn was formed.  Finn is one in 8 billion.  His future is not predictable and some times I do have to pull myself back into reality that unpredictability is not so bad.  Even typical children have unpredictable futures.

I will say I did like this new genetics doctor and counselor because they were blunt.  They told us like it is and it was hard to hear, but really, there isn't any gene therapy that can be done for Finn's issue rights now at least nothing in the United States.  Many of the reports written overseas are not factual and are not subject to scrutiny like they are in the U.S.

I was near tears the whole meeting because I thought I had come so prepared and was going to prove that there are solutions out there if I can get someone to take an interest. It was a tough pill to swallow, but I did leave the geneticist's office for the first time feeling like they are worth our time and money. 

From that appointment we rushed over to Chamber of Hope.  We got there a little late, but the volunteers and founder were so friendly and helped get Finn and Dan into the "space shuttle" right away.  Finn was very scared and cried at first, but after the chamber inflated, he was fine and he spent the next 45 minutes reading, playing trains, and snuggling with his daddy.  We have 39 more treatments to go before he gets a break and then we will see if we need to/want to do additional treatments. 

Tomorrow the folks at Chamber of Hope plan to take a video of Finn as a "before" and will do another video at his last treatment.  I am hopeful to see results but I'm trying to keep my expectations low.

Here are some pictures from Chamber of Hope.

Daddy entertaining Finn

Finn looking out the "space shuttle"

The space shuttle

Sunday, January 29, 2012

The Glazer Children's Museum in Tampa - Sunshine Sundays

Today we went to our first Sunshine Sunday at the Children's Museum in downtown Tampa.  We had a great time.  For the four of us it was $20 plus about another $5 for parking. 

Sunshine Sunday is a special date and time for special needs children and their families.  The museum opens early, at 10AM, and they offer discounted pricing  The next dates are March 25th, May 27th and July 29th.

This was a great experience as I would guess and say there were less than 50 children in the entire place!  Finn and Camila had so much fun running everywhere and getting into everything.  What a great morning and lots of energy burned. 

The museum had a lot of volunteers and stations set up to for sensory activities.  The kids loved the expansive water tables, the "beach" area, the area where they could race turtles, puppies, and birds.  They loved the music station and the garden section.  They "drove" a fire truck and an airplane, went shopping at Publix and took care of sick puppies.  They didn't want to leave and I don't blame them.

There were children there with a wide range of abilities.  Some were ambulatory and some were not.  Some could speak and some could not.  There were two things all of the children had in common: they all had very tired parents and all of the children were having a great time.

There were a few special needs resource tables set up as well.  They had information on summer camps, gymnastics programs, etc.

Overall, I am very impressed with the Children's museum for putting on such a great event.  We are definitely looking forward to the next one.  If you would like more information on The Glazer Children's Museum Sunshine Sundays, please check it out at

Thursday, January 26, 2012

Staying Healthy

Special Needs and low immunity seem to go hand in hand.  We struggled for a long time keeping Finn healthy.  He has low titers and we have been told he has similarities to cystic fibrosis patients.  Finn spent the majority of his first two years sick.  We ended up taking Finn to see Dr. Berger, a holistic pediatrician.  There are at least two holistic pediatricians in the Tampa Bay area that were recommended to us.  We chose Dr. Berger after multiple recommendations.  

We only saw Dr. Berger twice because he is expensive (not covered by insurance and ran us over $800 both times) and we feel like we now have good control over Finn's general health.  

His website is full of useful information for any child. on staying healthy, what to do on the first signs of illness, special diets, Epsom salt rubs, HBOT, etc.

What we have found most important to keeping Finn healthy.  As a note, we have been able to cut some of these items out, but we used all of these as we transitioned Finn into a healthy child:
  • Probiotics - most likely if your child is having GI issues like Finn, your pediatrician has already recommended probiotics but may not have recommended enough or the right kind.  
  • Vitamin D.  We use a liquid Vitamin D3.  
  • Zinc.  We use a liquid Zinc.
  • Larix - this is similar to echinacea but can be used every day.  Warning: it tastes awful!!!
  • Colostrum - that's right colostrum.  We were able to get a casein free version of this from Dr. Berger.
  • Vitamins 
  • Fish Oil and/or Flax Seed Oil
  • Liquid multi-vitamin
  • A healthy diet.  Finn eats whole grains - quinoa and rice, beans, eggs, and lots of fruits and vegetables.  We have been very fortunate that Finn is a good eater when it comes to fruits and vegetables.
  • Nose irrigation - well, you can't really irrigate a child's nose easily, but we do saline spray his nose in the morning and night to keep anything in there moving and help it out
  • We check Finn's titers before the winter season sets in and give him the necessary vaccines
  • We help Finn's digestive system by pureeing foods that are difficult to digest
We obtained proper dosing information, etc. from Dr. Berger and only added one thing at a time.  You don't want to overdo certain things such as Vitamin A as it can damage the liver so if you are going to change your child's vitamin regimen and dosage, you should consult someone to help. 

When Finn does start to show signs of being sick we do follow Dr. Berger's article titled "On the First Signs of Illness."

Finn started public school in September and I'm so happy to report that he has not had an illness that has led us to taking him to the doctor since starting.

Tuesday, January 24, 2012


Kate, we are inspired by you! You give me hope for Finn's future.

Monday, January 23, 2012

Quest, Inc.

One of the most difficult things about having a child with special needs is thinking about his or her future.  For us it is extremely difficult and as we try and live in the present as much as possible we do have to consider the possibility of what Finn's future may be so we may plan accordingly.  Will Finn have a job, a girlfriend, will Finn ever drive or live on his own?  These are real questions for us and they are difficult.  We have to plan financially and emotionally. 

A girlfriend of mine introduced me to an organization called Quest.  It is not Quest Diagnostics, but rather a non-profit organization headquartered in Orlando. 

Quest inspires and empowers Central Floridians with disabilities by offering choices and opportunities to learn, live, work and play. Through Quest’s comprehensive family of services, children and adults imagine and achieve their full capabilities.
Many organizations help children with special needs but it seems not quite as many help adults with special needs.  One question we have is what will happen to Finn after we are gone if he cannot live on his own?  It used to be that adults with special needs would be placed in institutions.  Quest offers homes as in real homes for just about any degree of disability. 

In addition, Quest assists in job training and placement.

QuestKids specializes in helping children with autism, pervasive development disorder and other learning and behavior concerns with individualized one-on-one programs using Applied Behavior Analysis (ABA).  To learn more about QuestKids please check out its website:

Quest also has two schools - one in Tampa (Hillsborough County) and one in Orlando. 

FACE - the Florida Autism Center of Excellence is a Charter school and it is free.  You must provide the transportation.  For more information on FACE please check out its website at

To learn more about Quest or to donate please go to

Sunday, January 22, 2012


Today I want to tell you about Sertoma.  This is a timely post as Sertoma is giving away free hearing aid batteries until supplies last tomorrow, 1/23, at its location in New Port Richey.  Please refer to the upcoming events page for more details.

Sertoma is an organization that provides financial assistance for hearing aids, hearing tests, hearing aid batteries, etc. 

Those with hearing loss know that hearing tests are typically not covered by health insurance.  You may get one annual hearing test, but after that, there is no coverage.  If you have a child like Finn that cannot cooperate through a regular "booth" test, you have to do what is called a sedated ABR.  If your child has hearing aids, you may be required to get 4 of these tests annually.  They can run between $1,500 and $3,000 a pop depending on how long it takes. 

Sertoma can help cut some of the cost.  They have hearing aid loan banks, they conduct hearing exams, hearing aid evaluations, hearing aid repair, and hearing aid molds.  Sertoma also helps young adults with hearing loss find jobs.

Sertoma is located at the All Children's Specialty Hospital in New Port Richey, FL.  Some of their services are based on the family's financial needs, but don't let this stop you from completing an application because this is not true for all services.

For those of you looking for an organization to donate to, Sertoma is one of those that really puts your dollars to good use and it is easy to donate to them when you renew your driver's license look for the option to donate $1.00 to them.

Please also keep in mind that if your children is in Early Steps or an early intervention program, there is financial help for hearing aids there too regardless of your income so please check with your coordinator. 

Friday, January 20, 2012

Managing Your Child's Medical Care

One of the most important things you can do for your child and yourself is to find the right pediatrician.  This person does not need to know everything about your child's issues.  Really, this is not relevant as your child's specialists will be the experts (well, not always) with the specific issues.  You do not need to see a "developmental pediatrician."  The pediatrician needs to be someone who is empathetic, a good listener, someone who can help manage keeping everything together and communicate between the specialists. The pediatrician may call you at 10pm because he or she just read an article and thinks it may apply to your child.  The pediatrician will take into consideration your concerns when you disagree or want to follow a different plan and will support it.  When your child's ENT doesn't believe your child has developed a massive sinus infection a week after sinus surgery, your pediatrician will believe you and help prove it to the ENT and help you find a new one.  Your pediatrician should be someone your child likes to visit.  Your pediatrician should ask you how you are doing and how you are coping.  Your pediatrician will know that you as the parent know your child best.

Equally important is the office staff.  The office staff should take your phone calls and get back to you right away and never make you feel like you are asking too much or asking a stupid question.  The office staff is critical to managing your child's medical care and is always happy to fax your child's entire medical history to a new specialist or provide you copies of everything.  The office staff will help you in obtaining free formula because the prescription formula your child is on is ridiculously expensive.  

If you don't feel like you have these qualities in your child's pediatrician: I would highly recommend you find another one and I will be happy to provide you with suggestions.

My second piece of advice is to maintain a record of everything - ask for copies of the doctor's notes and ask for copies of x-rays, MRIs, swallow studies, eye exams, etc.  You are not asking too much.  Keep everything as organized as possible and take it with you when you see new physicians or when you have your semi-annually or annually follow ups.  This makes you more credible walking into a doctor's office.  In addition, it is impossible to remember everything each specialist says if you are like us and see a multitude of them.  It is nice to have it handy.  I also recommend that if you are seeing a new specialist, ask your pediatrician's office to fax over the records directly to the new specialist prior to your visit and have a list of questions ready.  You may even want to fax over your list of questions if you think they are going to require research on part of the doctor.  I always knew I found a good doctor when I walked in and they told me they had already done research on Finn's syndrome.

In addition to maintaining records of doctors notes, etc. keep track of the bills and insurance statements.  We encounter errors frequently and you really should read over everything to make sure you are not being double billed.  Pay attention to how things are coded.  If insurance says they won't cover it ask them what code they need to cover it or ask the doctors office if they can try running it through with a different code.  Another tip is if your employer's health insurance program does not cover an item, talk to your benefits coordinator.  They can make exceptions.  Just remember it does not hurt to ask.

I hope this helps.  It has helped us tremendously. 

Thursday, January 19, 2012

Shriners Hospital for Children in Tampa Bay!

I used to think Shriners was a silly organization filled with silly men wearing silly hats begging for my money.  That all changed about 2 years ago.  We are so lucky to have a Shriners hopsital right here in Tampa Bay.  For those of you that have needed to use it, you know what I mean.  Shriners is AMAZING!

The hospital in Tampa near the University of Florida is devoted to Orthopedics and Neuromuscular conditions.  They do everything there from surgery to outpatient x-rays, exams, follow ups and prosthetics. 

We take Finn there to have his spine and hips x-rayed annually and for his his feet issues.  Finn has gone through 4 sets of braces for his legs and feet.  He started with Sure Steps a brand of SMOs then AFOs then AFOs with hinges and now he is back to SMOs.  Braces are so expensive and Shriners does not charge the families no matter what your income is.  It is a small miracle that they are here in Tampa. 

The doctors, nurse practitioners, and prosthetics team are wonderful.  We hadn't even thought about taking Finn there until his physical therapist recommended us doing so as a second opinion.  We have been going there ever since and haven't looked back. 

You do not need a referral to go to Shriners.  You do not need insurance.

I will warn you that your appointment will be long.  You will see a team of people and you can ask for multiple opinions if you do not agree.  You can go back as often as needed to get adjustments on the braces/orthotics.

Shriners wants you to visit them and it is free of charge to you. 

To contact Shriners:
Shriners Hospitals for Children® — Tampa
12502 Pine Drive
Tampa, FL 33612
Telephone: 813-972-2250
Fax: 813-975-7125

Check out there website for more info at Shriners Hospitals for Children at

You can also donate to Shriners or collect pull tabs for Shriners.  If you are interested in collecting pull tabs, let me know.

Finn and Trisomy 9p

Today I want to share as much as I can in the time that I have about Finn's syndrome.  This is going to be a long post, but I hope it shows that I can relate to many parents that have children with multiple issues from a mild speech impairment to cerebral palsy to autism.  I also want people to get to know Finn for all he is and although his genetic condition does not define him, it will always be a part of him.

Although Finn has both a duplication (Trisomy) and deletion of chromosome 9, I am going to focus on the duplication because it is the larger of the two and actually, many of the characteristics are the same.

The syndrome occurred "de novo" basically meaning that neither Dan or I passed down the genetic conditions, rather it occurred spontaneously.  I recall recently we were at a new ENT's office and Dan said that Trisomy 9p is not a popular syndrome and the ENT looked at us and he said you mean common.  He totally didn't get it.  We meant popular.  There is not a whole lot that has been done out there in terms of research.  It is not sexy.  It is not as common as Downs.  It has a longer life expectancy than Trisomy 13 and Trisomy 18.  It seems that researchers are just not that into it.  Most of what I have learned from the syndrome has come from other parents, not medical professionals or outdated research.

How common is Trisomy 9p?  Not entirely sure.  It is said to be the fourth most common Trisomy following Trisomy 21 (Downs Syndrome), Trisomy 18, and Trisomy 13.  I can tell you I know of 2 other individuals in the state of Florida that have T9p.  Life expectancy is good for a rare chromosome disorder.  

Trisomy 9P -
Each chromosome has a long arm and a short arm.  The short arm to chromosome #9 is referred to as "p" and the long arm is referred to as "q."  Trisomy 9p means that all or a portion of the "p" segment has been duplicated so that there are three "p" arms.  Finn has nearly all of the "p" arm duplicated.  The more that has been duplicated the more genes that have been affected.

Trisomy 9P is associated with certain physical characteristics and a variety of conditions.  I am not going to list all of them, but will list the ones we know Finn displays:
  • Feeding issues (improving!!!)
  • Allergies to peanuts, milk, soy, corn and eggs (egg allergy resolved at age 2)
  • Heart defects: ASD and PDA (both resolved around  age 2 1/2)
  • Dandy Walker Malformation which includes hydrocephalus and arachnoid cyst at the base of his brain
  • Atrophy of the mesial temporal lobes of the brain reasing the possibility of mesial temporal sclerosis
  • Hearing Loss
  • Chronic sinus infections
  • Reflux and vomiting (mostly resolved)
  • Mild hypertrichosis of the upper back
  • Teeth late to emerge
  • Eczema
  • Anhidrosis (does not sweat)
  • Simian crease on right hand
  • Valgus
  • Over-riding pinkie toe
  • Clinodactyly (pinkie fingers bend inwards)
  • Ear tag on right ear
  • Multiple urological issues
  • Cupped shaped ear
  • Hypo plastic finger nails
  • Pinkie finger nails grow straight up
  • Low tone and high tone
  • Stomach muscles did not grow completely together
  • Large anterior fontanelle
  • Deeply set eyes
  • Brachycephaly
  • Frontal bossing
  • Ventral hernia
  • Immunity issues 
  • Very tiny ear canals
  • Developed benign tumor in left ear
  • Severe constipation
  • Sleeping problems
  • Global developmental delays
  • Hyperflexible and loose joints
  • Microcephaly (small head circumference)
  • Slow growth
  • Keeps hands closed/has to be holding something 
  • Extremely high tolerance to pain
  • Aspiration of liquids
It is important to note that just with any child, every child with Trisomy 9p is different and Finn is extremely unique in that he has the deletion as well as the duplication.  It is tough to compare or know what Finn's issues will be because he is so unique.

Finn has been receiving physical therapy since he was 7 months old.  We added occupational therapy and speech therapy when he was one.  He received each for 1 hour once a week.  We also had an early interventionist that came by every other week and a deaf/hard of hearing teacher from the school system that came to our house once a week.

Finn started walking after he turned two.  He actually swam before he walked.  Now he is running and he recently started jumping.  Finn can ride his tricycle, climb ladders and small rock walls and he loves to dance!

Most of his foods had to be pureed until about 2 1/2 for both chewing and digesting issues.  Feeding was a huge issue and most of his therapy went to feeding.  Finn held his hands in such tight fists that it was strongly suggested to us to splint them or he would have problems with straightening his fingers for life.  We did not splint them and instead massaged his hands using a hairbrush and using our own hands daily - he no longer keeps them in such tight fists.  We really had to teach Finn to do everything from chewing to pointing to crawling.

Finn wears hearing aids (when we can keep them in) and he wears braces.  Finn also wears a cooling vest when it is hot to help prevent him from overheating.

Finn has had 7 surgeries and unfortunately we know of at least two more he will need in the near future.  He has undergone multiple procedures from a VCUG, EEGs, EKGs, ultrasounds, sedated ABRs, swallow studies, upper GI, to multiple MRIs and CT scans.  We have had to rush him off to get emergency x-rays to make sure he did not have an impacted bowel because he was so constipated he was vomiting.

The awesome news is that Finn is progressing.  We have been able to cross physicians off our list, stop most of his medications, and since Finn is three - he is attending public school - full days - 5 days a week and receiving a head start on his education.

Finn uses some signs, gestures, some words, and is currently learning how to communicate using PECS (the picture exchange communication system  Speech and language has been the most difficult area for us.  As Finn gets older he is getting more and more frustrated that we don't understand what he wants and we are equally as frustrated.  Some speech is coming though.  Finn is mimicking more and more and is starting to have more spontaneous speech.  He refers to Camila as "na na."  He says "mommy" and "daddy" clear as day and of course "cookie."

As far as intellectual impairment, it is too early to say.   Finn seems so smart in some areas.  He is very good at puzzles, has a GREAT memory, and seems to be a good problem solver.  Finn is extremely friendly and loves holding hands with everyone!  He is a typical three year old boy in so many ways.  His favorites are trains, trucks, Elmo, playing outside, swimming, building with blocks and legos, and books.  Long gone are the days when Finn didn't laugh - today Finn is laughing all day long.

If you would like additional information on Trisomy 9p or 9p24.3 deletion, please visit Unique at  This organization provides information about rare chromosome disorders.  It was so valuable to me upon learning of Finn's diagnosis.  The organization put me in contact with other parents and provided me with literature on Trisomy 9p and 9p24.3 deletion. 

Wednesday, January 18, 2012

Welcome to Holland

I didn't think that this would be one of my first posts, but I just read this again the other day and it really hits home.  The below is something that is often provided to parents when they learn their child isn't "typical."  I will have a lot to say on coping, how to manage, and acute recurrent grief - the kind of grief that shows up unexpectedly throughout your life, but for now, I just wanted to share "Welcome to Holland."


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. 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, ever go away... because the loss of that dream is a very 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.

Tuesday, January 17, 2012

Chamber of Hope

Today I got good news.  Chamber of Hope called me and we have scheduled Finn to start receiving free Hyperbaric Oxygen Therapy Treatments (HBOT) at the end of this month.  Finn will go 5 days a week for an hour each time for at least one month.  This is a huge time commitment as we will be driving to St. Petersburg every day.  We are hoping to see positive results in the areas of immunity, allergies, speech, hearing among others.  I will keep you posted on his progress.  We have met parents of children with ASD that attribute their children's speech development to HBOT.

The following is a list of many conditions with documented benefit from hyperbaric oxygen therapy as an “off-label” treatment:
· Autism/ Autistic Spectrum Disorders
· Acquired Immune Deficiency Syndrome AIDS/ HIV
· Allergies, Asthma, Immunity
· ALS (Amyotrophic Lateral Sclerosis)
· Alzheimer’s
· Arthritis- Rheumatoid, Osteoarthritis, Osteoarthrosis
· Atherosclerosis
· Attention Deficit Disorder (ADD / ADHD)
· Bells Palsy
· Brain Injury / Encephalopathy
· Burns
· Cerebral Palsy (CP)
· Cancer
· Chronic Fatigue Immune Dysfunction/ CFIDS/ CFS
· Coma
· Cosmetic Surgery/ Plastic Surgery
· Crohn’s Disease
· Dementia
· Depression
· Diabetes
· Epilepsy/ Seizure Disorders
· Fibromyalgia
· General Health
· Hearing Loss
· Heart Disease/ Cardiac
· Hepatitis
· Infection
· Injury Healing
· Interstitial Cystitis
· Lupus
· Lyme Disease
· Macular Degeneration
· Memory Loss
· Menopause Symptoms
· Migraines
· Multiple Chemical Sensitivity
· Multiple Sclerosis
· Near Drowning
· Neuropathy
· Ocular (Eye) Conditions
· Orthopedic
· Osteoporosis
· Parkinson’s
· Post-Polio
· Post- Surgery / Plastic Surgery
· Reflex Sympathetic Dystrophy/ RSD
· Rheumatoid Arthritis
· Rheumatic Diseases
· Seizures
· Spinal Cord Injury
· Sports Performance & Injury
· Stroke
· Surgery/ Post Surgery
· Traumatic Brain Injury
· General Wound Healing and Post Surgery Healing

The following is a list of the fifteen conditions that are FDA approved for treatment with hyperbaric therapy. These conditions are typically reimbursed by insurance and include:
· Actinomycosis
· Air or Gas Embolism
· Carbon Monoxide Poisoning and Smoke Inhalation
· Clostridial Myonecrosis (Gas Gangrene)
· Cyanide poisoning
· Crush Injury, Compartment Syndrome, and other Acute Traumatic Ischemias
· Decompression Sickness
· Diabetic Wounds*
· Necrotizing Soft Tissue Infections
· Osteomyelitis (Refractory)
· Radiation Tissue Damage (Osteoradionecrosis)
· Severe Anemia
· Skin Grafts and Flaps (Compromised)
· Thermal Burns
*Must meet the following criteria
· Patient has Diabetes type I or II with a lower extremity wound due to the condition
· Patient has wound classified as Wagner grade II or higher
· Patient has failed adequate course of standard wound therapy

(Taken from

Chamber of Hope is an amazing organization that provides free Hyberbaric Oxygen Therapy treatments.  This is huge as it is so expensive and can run between $20,000 and $40,000 to receive the treatments.   Please check out their website for additional information...


This is my first post of what I hope is to be many!  Let me begin by telling you a little about myself.  I have a wonderful family.  I have an amazing husband and two beautiful children.  Camila is just over a year and Finnley is 3.  We live in the Tampa Bay area and love all that this area has to offer in terms of weather and activities.

I recently stopped working to be a full-time mom.  This was a very difficult decision as I loved my job and was making a good income, but as most mom's can relate, I felt I was missing too much being away from my children.  I love being at home with the kids, but find that obtaining a healthy life balance is actually harder than when I was working so this is where part of the equation to this blog comes in to play.

The other part of the equation is Finnley "Finn."  We were so excited to learn we were pregnant with Finn.  I had a relatively normal pregnancy with a few minor concerns - Finn was small and had a heart arrhythmia.  I also had bleeding in the first trimester.  The heart arrhythmia went away before Finn was born.  I opted to not do any genetic testing while pregnant.

If Camila was our first child, we would have known something was wrong with Finn before we left the hospital, but being first time parents, we didn't have a clue that some of the things he did or didn't do weren't exactly typical.  Feeding was a huge challenge.  Finn cried so much and didn't sleep longer than 15 minute intervals.  I remember crying at 5 months because Finn didn't smile much or giggle.  He didn't roll over or seem like he wanted to even try.  He was covered from head to toe in eczema and it was clear that he had  multiple physical abnormalities.  Our pediatrician referred us to genetics.  We had to wait a few months before we got in.  The doctor advised us that Finn most likely had a chromosome abnormality and when Finn turn 11 months we got our answer: Finn has Trisomy 9p and 9p24.3 deletion.  What does this mean?  Well, the geneticist handed us a piece of paper from 1979, the year I was born, and said good luck.   

So there my husband and I were left with little reliable information and basically zero resources of where we could get help in the area or on-line.  I googled like crazy for the months following Finn's diagnosis and found finding information on Finn's syndromes was difficult at best and finding resources in the Tampa Bay area was difficult as well.  We were very fortunate to stumble upon a few websites and a few people that could share bits of information here and there, but I kept thinking it would be great to have all of this information consolidated because I imagine there are more people out there like me looking for ways to be advocates for their children and to help their children in any way possible.

What we do know about Finn's diagnosis is that he has global developmental delays, he has many orthopedic issues, he had heart defects, he has hydrocephalus and other issues involving the brain, he has hearing loss, GI issues, urology issues, immunology issues, and others.  We don't know exactly what Finn's future will look like, but we do know we are going to help Finn be the best Finn he can be.  Finn is a lover and a ladies man.  Finn is friendly and cautious.  He likes to be challenged and loves books, puzzles, trains, and puppies.  Finn loves cookies and he loves his baby sister. 

I am excited to share what we have learned in terms of resources and also to share Finn's journey. Our last three years have been filled with tears, laughter, and triumphs.  Every day is a blessing and every day we celebrate something new.  Over the past three years I have learned to find my own voice so I could find Finnley's. 

Finn and Camila