We are delighted to collaborate with the talented photographers at Something Blue Photography for our C.I.T.Y. Close-Up program. Their patience and flexibility have allowed us to provide monthly sensory-friendly photo sessions that truly capture each family's joy.
Her mom says:
"Vera began physical and occupational therapies at three months of age after not meeting her milestones. A few months later we added speech with feeding and eventually developmental therapy as well. At 18 months of age, we learned of her rare genetic condition caused by an autosomal recessive inheritance which affects, in part, her muscle coordination and strength, vision, sensory processing, speech and language, and GI system.
And yet, despite all the day to day challenges of her condition Vera has remained joyful, resilient, and brave. She works extremely hard to do the things that most other kids can do naturally. She is spunky and sweet, and we see her confidence growing. We are so proud of her. Our family is forever changed by Vera. She has given us a new appreciation for what we previously took for granted. We love her just the way God created her, and we wait with expectation for His faithfulness to carry on throughout her life."
His parents say:
"Our younger son, Sam, makes us so proud each and every day. He has to work 10 times harder to learn and do the things that come easily to most 8 year olds, but he never gives up! He has made so much progress over the years, especially in recent months. Sam’s favorite thing to do is to look at books, and to be read to. He loves all kinds of music, but his current favorite song is “Hound Dog” by Elvis Presley, which is what we are dancing to in this photo."
Her mom says:
"These two kiddos never cease to amaze us. Despite the challenges of the last year, they have both grown with grace and tenacity (and only the occasional bout of sibling rivalry!). We couldn’t be prouder of the spectacular unique individuals they have become.”
Her mom says:
Mia Mae turned two on July 31st. She was born with the odds against her, but she fought against them. She was born with congenital heart defects and Trisomy 18, weighing 3 lbs, 4 oz. When we were told of Mia’s Trisomy 18 diagnosis, we were told to plan for the worst. They said it was a miracle that she survived in utero and delivery. We were told we would only get a few days with her and if she survived several weeks or even a few months, she only had a 5-10% chance of making it to her first birthday. At 2 weeks old and weighing only 3 lbs, Mia underwent her first heart surgery when her lungs began to flood. She rebounded and was discharged home at 5.5 weeks old to grow for her open heart surgery. The week before her scheduled surgery, at four months old, she began to decline quickly and was admitted to the PICU. She fought through again and made it to her open heart surgery and beat the odds. She was discharged on oxygen, but was able to ditch that within a few months.
Since her first birthday, she has not been hospitalized or required any surgery besides elective eye surgery to help her developmentally. Mia has continued to not only beat the odds, but do things we were told she would never do. She is learning to stand and take assisted steps. She is learning to sit independently. She has the skill to eat fully by mouth and we are hoping to see that come to light in the next year. She has a smile and a laugh that could light up a room from a mile away. She is beginning to say a few words and her mama heard, “love you” for the first time a couple weeks ago. For a girl, whom we were told is incompatible with life, it is truly amazing to see her love and live her best life. She has truly helped us, as her parents, and those around her, love their lives even more in the process.
Her mom says:
"I’m so lucky I have Brooklyn in my life. She continues to amaze me every day. She never gets angry when she can’t do something, she just keeps trying until she’s able to get it done. She also has an amazing personality, and such a creative imagination during pretend play, she makes laugh every day! Brooklyn has lots of struggles but I don’t focus on that, she is truly the best thing that has ever happened to me. Watching her grow makes me so excited to see what life will have to offer us next. I have no doubt that as long as we are together, we will conquer anything."
Her mom says:
"When Ellie was diagnosed with severe to profound hearing loss at one month old, we were shocked and scared. We'd never met a deaf person before and didn't know what to expect. She was fitted with hearing aids at 3 months old and we began Aural Rehab therapy through EI. At 9 months, she received her first cochlear implant and at 12 months her second. At one year, she added speech to her list of therapies and joined a Toddler Group for kids with hearing loss at Child's Voice when she turned 18 months old.
Ellie is currently 33 months old and doing phenomenal! Despite not being able to hear for her first year of life, she's caught up to her chronological age for speech and hitting expressive and receptive language targets for her age group. She's 100% oral/verbal, although we plan to add ASL to her communication. She's social and happy and will be transitioning into preschool in the fall! We couldn't be more proud of her grit, resilience, and fearless personality that makes her capable of being anything she aspires to be."
His mom says:
"Bryant is a surviving twin 29 weeker preemie that was in the NICU for 63 days. 20 months later Bryant’s family gave birth to their rainbow baby Charlotte. Bryant has been in therapies since NICU discharge. He started off with PT through EI then after a year was told he was caught up in gross motor skills. A year after Bryant’s family noticed he was only saying 4 words at 20 months old. He qualified for speech therapy and soon after occupational therapy. Soon after that he needed to have physical therapy again. Bryant is currently in school to receive therapy and educational services as well as private PT and SLP. As of two months ago his school PT dropped him to consult which was a big step. He is considered to the school all caught up on his gross motor skills. His fine motor skills are equivalent to a first grader and won’t be surprised if OT is dropped to consult during school therapy re Eval come fall. His speech has made huge gains engaging in back and forth conversations, imaginary play, and improvement in understanding directions especially from the photographer during the session you could see the gains made of where he should stand and turn his body for pictures.
We are so proud of our trooper Bryant and our rainbow baby Charlotte. We haven’t had a family photo session since the arrival of our daughter so this was truly special to us. Thank you C.I.T.Y of Support and Something Blue Photography for this amazing photo session experience."
Their mom described both of her boys:
"Zander Rose, our little Zander Salamander. At age 2, Zander only had a few words. At 6, Zander proudly tells us about his favorite countries in the world, his favorite shells in the ocean, and his favorite Pikachu characters. He practices with Google Earth to correctly say different cities and landmarks. He even uses language for very convincing arguments too. We are so proud of our Z man!
Jonah Rose, our little Jonah bear. Jonah has been working so very hard on tongue mobility and speech after his tongue tie/adenoid surgery and overall speech delay. Whether it's making clicking noise with his tongue, holding a button string with his lips tight, or crunching an oyster cracker with roof of his mouth, Jonah has energetically practiced these exercises with his therapists. In the past, Jonah often relied on mom or his big brother to translate. Now his teachers and peers understand more and more! We are so proud of our Jbear!"
His mom told us what their family is celebrating:
"Our little man has come a long way in the last six months. With a dual diagnosis of Down Syndrome and Autism, he is non verbal and communication has been a huge challenge. He received his AAC device in October and since then we've noticed his vocabulary and communication taking off. It has been absolutely amazing seeing his progress and hearing his voice, and we couldn't be more proud of his hard work!"
Her mom says:
Camille has a high energy for life, arts/crafts, and all things Disney. Camille has experienced some difficulties with sleep, sensory issues and has a speech delay. Through working with her amazing therapists, there has been an increase in her speech and incredible advances in her use of play. Camille’s favorite things are Mickey and Minnie Mouse, Winnie the Pooh, and playing in water.
Just listen to what she has to say about her son, Noah:
"After an extraordinarily difficult year in the public school system, we enrolled Noah in therapeutic school and it was the absolute best decision, ever. Through carefully crafted sensory support, behavior intervention, and—most importantly—kindness and acceptance, we’ve seen an unbelievable amount of growth in Noah. From the ability to self-regulate; to a seemingly explosive use of expressive language; and even a new willingness to try unfamiliar foods, our family will be forever indebted to the wonderful community of therapists and medical professionals that support Noah every day.
Noah’s special interest is anything heart-shaped (especially pink heart-shaped beads!), and it is so fitting because he is the epitome of unconditional love. Noah is unapologetically himself, pink hearts and all, and he is the true light of our lives."
Her mom says:
"Evie is one sweet and strong toddler! Despite her developmental challenges, she has been working successfully with PT to improve her balance, coordination, and strength. Just in time for our big move to a new house in the suburbs, Evie mastered walking foot over foot up the stairs! This was a huge step forward, and we are so proud of her accomplishment."
Her proud mom says:
"Clare has had to work hard her entire life to get her body to do what she wants, but we are so proud of all the small successes that she has achieved. She’s starting to get the hang of sitting, learning how to clap, and can pick out Yes and No cards for simple questions. She is obviously highly motivated and eager to pick up new skills."
Here's what she has to say about her boys:
"Our boys have just returned to remote learning after nine successful weeks in person, so this is a big adjustment for our family right now. Just at the start of school, Adam was ready and successfully potty-trained very quickly, after years of us wanting him to do it. He did it on his time, as he always has done everything. My boys are my heart, and I feel lucky to be their mom."
Here's what she has to say about her charming son, Jaime:
"Jaime is now 18 months old and has Down Syndrome. From Heart Surgery at 5 months old to ear tubes, pneumonia, and a couple other hospital stays, Jaime keeps smiling and thriving. He just recently started holding his bottle, and started to pull himself to stand up. Using his hands and fingers has always been a struggle for him, so this is huge progress.
I'm so thankful for this group and for Something Blue Photography that they were able to capture these photos. With everything that was going on at birth with his feeding issues and heart repair, I never did any other photoshoots. I'm so excited to finally put him up on my wall."
According to his mom:
"(When Ryden was born), I did not get to hold him for 36 days. He had to go to three different hospitals, had four serious scares of barely making it, multiple surgeries & spent 106 days in the NICU. Some days we felt like we would never be able to leave. It was the craziest roller coaster ride ever, and I cannot even begin to explain, but we are so proud of him. He is our miracle warrior.
We see nine different specialists, six different therapists weekly, and he just had his fifth surgery last week in the midst of the COVID-19 pandemic. He still has a few more surgeries to go, but we could not be more proud of our boy. He is a true fighter."