More Than a Diagnosis – Kole’s Story

2019-05-22_0009

“Last month, I received a phone call that would forever touch my life. It was from a wonderful woman in Arizona named Betsy. She is a pediatric nurse for a sweet boy named Kole. She told me about his family’s plans to visit San Diego for their son’s Make-A-Wish trip. She wanted to find a photographer that would be the perfect fit to capture this special time for Kole’s family. She found my More Than a Diagnosis blog posts and the rest is history.  It was an honor to meet this family and document this momentous trip for them.

2019-05-22_0004

I also have the privilege to share Kole’s story with you as a part of my More Than a Diagnosis series. Throughout my life, I have been blessed to know many amazing people that were given a special needs or terminal diagnosis. I do not believe that this was by accident. They have stories to tell, and I want to help them tell those stories.  It is my goal to continue to capture beautiful portraits of those that were given a diagnosis and did not let it stop them from living happy and fulfilled lives. They are an inspiration. I want to use my platform of photography and social media to help them reach those that may need it the most.

2019-05-22_0003

I asked Kole’s mom, Kirsten, to tell us more about their lives. I asked her about when they received his diagnosis, challenges that they have faced, what life is like for Kole, and some of her favorite things about him. This is their story. Thank you Kirsten, for sharing it with us.

When did you find out about Kole’s diagnosis? 

I got pregnant at 19 right after his dad and I got married. We went to our routine appointment with the OBGYN and they offered to do a blood test to see if there were any concerns and since it was covered my insurance, I said okay. I ended up getting a phone call that they were sending us to see a specialist because the numbers were high and there was a lot of amniotic fluid. That phone call changed everything. We ended up seeing the specialist every single week till he was delivered. Every single week we were told that his heart beat would not be there the following week and every week it was still beating. He did not move much so I never knew if he was still holding on or not. Every few times we would go in they would find something else that was “wrong” and be even more sure that he was not going to make it. They induced me at 36 weeks because he was not growing and the delivery was very traumatizing and complicated and he was born at 3 lbs 5 ounces and he stayed in the NICU for 2 months. 

2019-05-22_0007

How did you find out? How did you feel when you found out?  

We knew that something was going on ever since being sent to the specialist, but we had thought that his diagnosis was down syndrome the whole time. They offered to do amniocentesis but we opted out due to the risk of miscarriage and it wasn’t worth it to lose him. It wasn’t until he was actually born and had blood drawn that we were able to find out his actual diagnosis and more kept piling on as time went on. I remember sitting in the head doctor’s office when Kole was 3 days old, the geneticist was in there and he said that Kole has been diagnosed with Ring 13, Partial Trisomy 13, and Monosomy 13 and that he will probably not make it out of that hospital and if he does he will not make it through a common cold and if he is lucky enough to make it through that, he will likely not live past 10 years old. THAT is all I remember him saying because as a 20 year old girl hearing that about my child was extremely hard to hear. I completely shut down and stared at my hands and the words just ran through my head over and over as they continued speaking with other family members that were in the room and able to take notes for me. When I was told that he was blind I was in shock but more at the bluntness and shortness from the doctor that had told me. Once the anger of that settled it was difficult information to process but it was not the end of the world. It was more when I was also told that he was deaf that it hit more close to home. It suddenly made sense that the other 3 babies in his room would cry in their cubicles whenever it was loud and my little boy just slept right through it all. Barely moved an inch. He never startled. He was the quietest baby. And I never knew why. But, then I did. It was a mixture of emotions but I did feel thankful to have answers and be able to move forward with knowing what I needed to know and figuring out a different way to navigate how to communicate with him which we did through touch. He also got a cochlear implant on his right side that he hears through and he loves music.

2019-05-22_0006

What exactly is he diagnosed with and how does it affects his life? 

  • His main diagnosis are: Ring 13 (This is Kole’s dominant diagnosis, Rare chromosome disorder), Partial Trisomy 13 (Chromosome Disorder), Partial Monosomy 13 (Chromosome Disorder), Poland Syndrome (Birth Defect of underdevelopment with webbed fingers and absence of chest muscle on one side), Moebius syndrome (A rare neurological condition that affects the muscles that control facial expression and eye movement. The signs and symptoms of this condition are present from birth)

The ripple effects of these syndromes and disorders are:

  • Absent Corpus Callosum (Middle part of the brain)
  • Obstructive Sleep Apnea (Doesn’t breathe well while sleeping, us oxygen, change position)
  • Obstructive Airway (Change position, sit up, use oxygen)
  • Hypoventilation (Shallow breathing at an abnormally slow rate, resulting in an increased amount of carbon dioxide in the blood)
  • Deaf (Use cochlear Implant while awake)
  • Blind (Can see bright lights in his LEFT eye)
  • Coloboma in both eyes (Effected the optic nerves, the macula is fine)
  • Retina detached in right eye (Eye is shrinking and is a “sick” eye. Potential future prosthetic eye, use medications to keep it comforted)
  • Imperforated Anus (No anus formed but a fistula formed right above where the anus would be and we dilate the fistula to keep him pooping through it)
  • Deformed Left Hand (Part of the Poland Syndrome)
  • No muscle or nipple on left side of chest (Part of the Poland Syndrome)
  • Eczema (Dry Skin)
  • Tache Cerebrale (Breaks out in rash under the skin and it goes away within minutes, not harmful, caused neurologically)
  • Dermographism (Exaggerated welting when the skin his barely stroked, not harmful, goes away within minutes)
  • Fusing of left elbow (It doesn’t turn in some directions so BE CAREFUL especially while changing his shirt)
  • VERY LOW IMMUNE SYSTEM (Wash hands regularly and use sanitary precautions)
  • Septo-optic Dysplasia (Underdevelopment of the optic nerve, pituitary glad dysfunction, absent septum pellucidum (part under the corpus callosum which he is missing as well)
  • Low Cortisone Levels (Hormone released when the body is stressed. Production of cortisone by adrenal glands are too low because the pituitary gland is not sending proper signals) 
  • Irregular Circadian Rhythm (Non-24 Sleep/Wake Disorder) (A condition often experienced by those blind/visually impaired which caused them to be unable to follow the typical daytime/nighttime schedule of sleep often causing insomnia)
  • Megameatus Hypospadias (Congenital defect, location for outlet of urine is on the undersurface of the penis rather than on the tip. CANNOT circumcise until this is surgically fixed)
  • Kole is unable to walk and is nonverbal.

2019-05-22_0005

What would you tell someone that is just learning about their own child’s diagnosis? 

It sounds harsh, but I just hope that people finding out diagnosis know that it is not the end of the world. Their child is unique. Their child is special. Their child will teach them things that they would never learn if it wasn’t for that child. I won’t lie, it’s a hard life. But, it is full of so much beauty that I never knew. I am not the same person that I was when I was 20 and I had to change and grow up real fast. And I wouldn’t change that for the world. There are people out there who get it. It felt so lonely at first and like no one would ever know what we are going through. But, as I branched out and learned that there are other deaf blind children and kids that are similar to Kole (NEVER THE SAME because they are all different in their own way) that I was not alone. There were resources and help. And if someone is offering to help, try your best to ACCEPT it. There is so much that I would say to someone just learning!!!

What does a typical day look like for Kole?

We get up (depending if we were up all night or not because he can’t tell day and night) but we stick to the routine ALWAYS! Get up, CPT Vest, morning meds and morning routine, go to school, come home from school and typically there are appointments and therapies squeezed in there somewhere, afternoon meds, do our own home routine of therapies, bath time, CPT Vest again, night time meds and night time routine, and then to bed! And Repeat!

2019-05-22_0008

What is your favorite thing about Kole? 

That is a VERY hard question! If I had to narrow it down, it would be his squeezes (hugs) he gives the BEST hugs. It was my goal that I wanted him to know how to give hugs so I always did it and told him “squeeeezee” and he eventually caught on and they are the best! OR his belly laughing that he beyond contagious!”

He is truly a #mirakole

2019-05-22_0002Portraits by Loni Brooke Photography, San Diego County Family Photographer. If you or someone you know would be a great candidate for a complimentary portrait session as part of the More Than a Diagnosis series, please email brooke@lonibrookephotography.com.

2019-05-22_0010Here are a few Behind the Scenes cell phone selfies from our special session on the beach! They even gave me a beautiful gift of one of their #MiraKole beach balls and “Kole’s Wish Krew” tee shirts that they had made for their trip, which I will forever cherish.

Felicita Park Family Session – Escondido Photographer – The Crandall Family

It’s time for another Flashback Friday! I am loving looking back on my fall sessions and sharing them with all of you. Fall was a crazy busy season for family photo sessions and I didn’t get the chance to blog some of my favorite sessions. Now seemed like the perfect time!

It was a picture perfect evening at Felicita Park in Escondido with the Crandall family. The light, the location, the wardrobe, and the beautiful laughs shared between family was making me feel so lucky to get to be the photographer to capture this! Their little Ellie just loved to twirl in her cute dress. This family had such a sweet bond. You can truly see their laughter and love shining through in every photo.

Here are a few of my favorites from their session:

Escondido Family Photographer

More Than A Diagnosis – World Down Syndrome Day – Maria’s Story

 

World Down Syndrome Day, Down Syndrome Awareness, San Diego Photographer

Today is World Down Syndrome Day. On March 21, people with Down Syndrome and those that love them throughout the world are raising public awareness and creating a single global voice advocating for the rights, inclusion, and well being of people with Down Syndrome. On this World Down Syndrome Day, it is my honor to introduce you to someone that is very special to my heart, my daughter’s best friend, Maria. Maria is a sweet, spunky, and beautiful seven year old girl. We met Maria two years ago when my daughter started kindergarten. She has brought so much joy, laughter, and love into our lives.

I wanted to share her story with you as a part of my More Than a Diagnosis series. Throughout my life, I have been blessed to know many amazing people that were given a special needs or terminal diagnosis. I do not believe that this was by accident. They have stories to tell, and I want to help them tell those stories. I started the More Than a Diagnosis series in the fall when I shared the story of my sweet friends Amanda and Alianna. It is my goal to continue to capture beautiful portraits of those that were given a diagnosis and did not let it stop them from living happy and fulfilled lives. They are an inspiration. I want to use my platform of photography and social media to help them reach those that may need it the most.

I asked Maria’s mom, Kelsey, to tell us more about their lives. I asked her about when they received the Down Syndrome diagnosis, challenges that they have faced, what life is like for Maria, some of her favorite things about Maria, and how she envisions Maria’s future. This is their story. Thank you Kelsey, for sharing it with us.

World Down Syndrome Day

“On Mother’s Day my husband and I found out we were pregnant with our first child. A few months later, we had an ultrasound done to determine the gender of our unborn baby. It was a girl! At 36 weeks pregnant our little baby Maria was born. One of the best feelings I’ve experienced as a mother has been holding my newborn children in my arms for the first time. Unexpectedly, the day after Maria’s birth there were health issues that required her to be admitted into the Neonatal Intensive Care Unit (NICU). While there, Maria was diagnosed with Down Syndrome as well as a heart defect (common for people with DS) that prevented her from breathing and eating on her own.

Down Syndrome is the most common genetic disorder. Typically, people are born with 23 pairs of chromosomes. People with Down Syndrome have an extra chromosome in the 21st pair, so they have 47 chromosomes. At the time, I knew little about Down Syndrome. It was just a label. What I did know was that this beautiful, perfect, tiny (she wasn’t even 5lbs when she was born!) baby girl was mine. I was her mother. God chose me to teach and raise her. That was all that mattered.

Maria stayed in the NICU for the first 26 days of her life. Initially Maria had a feeding tube that ran from a syringe through her nose and directly to her stomach. In order to go home, Maria had to reliably drink from a bottle. The nurses who worked with her couldn’t get her to eat as much as when Eric or I fed her. Eventually, the doctors agreed Maria could go home because she would only take a bottle from me. What was the point in staying at the hospital when I could easily feed her a bottle in the comforts of my own home?

World Down Syndrome Day, More Than a Diagnosis, San Diego Photographer

After discharge from the hospital came the many doctor visits. At one point there were 9 different doctors following Maria for various reasons. Maria was frequently monitored by her cardiologist because her heart defect turned out to be more serious than originally thought. We had hoped that it would resolve itself and the holes would close. One of them did, but the other two did not. As a result, Maria was prescribed 24-hour supplemental oxygen for a time and later a few medications. Eventually, Maria had a cardiac catheterization procedure to patch the holes in her heart and she did not need the oxygen anymore. We didn’t let these bumps in the road stop us from enjoying our baby girl and living life as a new happy little family.

Maria was my sidekick. We went everywhere together. Mommy and me classes, park playdates with other toddlers her age, the grocery store, beach, zoo, community events, etc. From the beginning, Maria has been a source of love and happiness for others. She can brighten anyone’s day with her beautiful smile and sweet spirit. Don’t get me wrong, sometimes she can be mischievous, but there’s just something about her that brings joy to the lives of people who cross her path. Some parents of children with Down Syndrome joke and say “love” is on the 21st chromosome because many children with Down Syndrome are known for being extra kind and loving.

World Down Syndrome Day, More Than a Diagnosis, San Diego Photographer

As time passed, it was evident that having Down Syndrome impacted Maria’s development, but didn’t stop her from meeting typical milestones. These milestones- sitting up, crawling, walking, talking, etc.- came with time but were that much more momentous because Eric and I put lots of time and effort into supporting Maria in reaching those goals. Maria has helped our family learn patience, love, purposeful planning, acceptance of people who are different, and to think outside the box. Our lives are better because we’ve had the gift of having Maria in our family.

Maria’s preschool years were a busy time. Our priority was inclusion. We wanted Maria to be around typically developing peers to help her learn age appropriate behaviors and skills. Our local school district did not offer an inclusive preschool program, so we paid for Maria to also attend a private preschool in a neighboring school district with an excellent inclusive education program. It was so wonderful to see her interacting with her peers, learning along side them and being an important part of whole group. I have never wanted Maria to feel like an outsider or visitor in her classroom, so full inclusion was important.

San Diego Photographer

At Maria’s transition meeting from preschool to elementary school, we made it clear that inclusion was our goal for her educational experience but also in life. At school, Maria fits in with her “typical” peers and has lots of fun playing with her classmates after school. Her friends love her for who she is, and she is so happy to be their friend. I think every mother worries if their child will make friends and feel included with their peer group. It’s no different for a mother of a child with Down Syndrome. Maria has been fortunate to have friends who are loyal, respectful, protective, patient with her and look past the things she can’t do and instead meet her where she’s at and build her up.

I have high expectations for Maria’s future. Maria will have a meaningful and productive life in the real world. Maria will live independently, get a job she is passionate about, and have genuine relationships, just like her sisters and everyone else. She may need some accommodations and assistance along the way, but I know she will be able to do it. There’s no limit to the possibilities.

San Diego Photographer

Another mom of a child with Down Syndrome once told me Maria is exactly how she was meant to be and the people around her are the people that need to learn from her the most. Maria has helped me to learn to think creatively, to see the good in others, and that everyone has an important role to play in life. As we help Maria, she helps us become our best selves”.

Escondido Photographer, World Down Syndrome Day

Portraits by Loni Brooke Photography, San Diego County Family Photographer. If you or someone you know would be a great candidate for a complimentary portrait session as part of the More Than a Diagnosis series, please email brooke@lonibrookephotography.com.

 

Fall Family Portraits – San Diego Photographer – The Wootens

I have been having such a fun time looking back on my session from this fall. Some of my favorite sessions of the year took place this fall and I haven’t had a chance to share them with you here because it was such a busy season. I wanted to be sure to share the Wooten family’s session!

Look how adorable little Samuel is! His smile was so contagious. It took him a little bit to warm up to me, but once he did, there was no stopping him! This session was all about playing! Samuel’s parents and I chased him all around the park and played. He was in his element and having so much fun. It was really special to see the bond between this beautiful family.

Here are a few of my favorites from their session. The one on the bottom left still blows me away! I love that Samuel looked over and smiled at the camera right when he was mid air. Talk about an epic shot!

San Diego Family Photographer

 

 

Dania’s Law School Graduation Portraits -San Diego Photographer

“Go Confidently in the direction of your dreams. Live the life you have imagined”. -Henry David Thoreau

It was such an honor to capture Dania’s law school graduation portraits a couple of months ago! I am so excited to finally share these with you! This shoot was something a little bit different, and a lot of fun! What’s a better location for law school graduation portraits than the Federal Courthouse?

Dania looked absolutely stunning and was a complete natural in front of the camera. She is smart, accomplished, and beautiful inside and out. Watch out world! I had a great time getting to know her and I loved being a part of such a special time in her life. She had accomplished so much and it deserved to be celebrated!

Congratulations Dania!

San Diego Law School Graduation Photos, San Diego Photographer, San Diego Graduation Photographer

The Wells Family – San Marcos Family Photographer

San Marcos Family Photographer, Escondido Family Photographer, San Diego Family Photographer

It’s time for a fall flashback! Fall season for a family photographer is like tax season for an accountant. Things get so busy and keeping up with my blog was something that was put on the back burner while I was making sure that everyone got their portraits in time for their holiday cards and gifts. But, some of my very favorite sessions happened this fall and I didn’t want to miss the chance to share them with all of you.

One of my very favorite sessions this fall was with the Wells Family in San Marcos, CA. Their little ones, Gavin and Solana stole my heart! It was so fun to see their connection. Even at only 5 months old (at the time, it was apparent that Solana really admires and looks up to her older brother and Gavin just loves to make her smile. I had a great time capturing this adorable family playing together and enjoying each other’s company. I am really looking forward to seeing them all again soon when little Solana turns one!

Here are some highlights from our session! Enjoy!

Escondido Family Photographer, Escondido Photographer, San Diego photographer, San Diego family photographer

Ugly Location Challenge – San Diego Family Photographer

There is a trend that is growing in popularity among photographers in recent months. The challenge is to take an “ugly” or every day location and turn it into the backdrop for artistic portraits. I have seen photographers go to Ikea, Target, Michaels, Hobby Lobby, Home Depot and Lowes to create works of art. My daughter’s seventh birthday was this last month and it seemed like the perfect time to take on the challenge and see what we could create for her yearly birthday portraits. We went to our local craft store, which is hardly an “ugly” location if you ask me. The lighting wasn’t ideal, but we made it work. I am really happy with how these portraits turned out. The best part, we had a lot of fun together! Although, I did have to bribe my daughter with a toy from the store. She has a small case of photographer’s daughter syndrome and doesn’t love to have her photo taken. But, looking at her portraits, you would never know. With the success of this photo shoot, I’m considering taking on another “ugly location”. Where should I go?

ugly location challenge, hobby lobby challenge, michaels challenge, San Diego family photographer, San Diego child photographer, Escondido child photographer