Maxwell was born with a unilateral cleft lip and palate. He had one surgery to repair his lip, and received ear tubes at that time as well. He had another surgery to repair his palate, in which he had a slight complication in his recovery that landed us in the ICU for a day.
Currently, he is a thriving, active kid, who started PreK last week. He is always on the go, and recently learned to ride a two wheeled bike in one night. He loves his little sister and is very loving in general, just wants people to be happy.
Morgan was born with a bilateral cleft lip and palate. She had one surgery to repair her lip, and received ear tubes at that time. She another surgery to repair her palate, and unfortunately due to timing, she spent her first birthday in the hospital recovering.
Anyone who has met her recognizes that she is of the mindset that she will do things on her own time, in her own way. She loves her big brother and thinks she is big enough to keep up with him, which lands her in trouble most days and has earned her the nickname “Little Scrappy” since she is tough and strong willed.
Natalie is almost 10 years old and was born with a bilateral cleft lip and palate. Natalie has had 6 surgeries so far to repair her lip, nose, palate and ears. Even though we routinely call her “so tough and strong,” we can’t look past the enormity of her situation and all she has overcome!
She is currently 2 years deep in an orthodontic treatment program which is geared toward cleft lip and palate patients. She has a palate expander, night time head gear, and braces. She has had extra teeth removed, and is also missing adult teeth. Frequent ear tubes and many infections, a perforated ear drum, hearing loss and recent reconstructive eardrum surgery. We have done speech therapy, research studies and genetics. She has more doctor appointments than most, and knows her way around the hospital more than a child should. She likely will have lifelong treatments related to her cleft lip and palate.
Despite this all, Natalie shows strength beyond belief. She is smart, funny, bubbly and friendly! In her free time she does competition gymnastics, love to be with friends, play video games and eat yummy food. We are so lucky to be blessed with this girl who shows the world that you can do it all with a smile, especially an extra special smile!
Parker's first year was like riding a roller coaster, filled with so many ups and downs. We treasured all his special moments. The first time he rolled over, the first time he sat up, the first time he slept through the night, his first tooth, his first steps. But most importantly, we treasured watching him develop into a playful, loving baby: learning, growing and beginning to establish his unique personality.
There were also many challenges the first year. Finding the right bottles so he could eat properly, overcoming his rejection to pumped breast milk, multiple visits with various specialists for testing, ensuring he continued to progress on the growth scale. There were also 3 surgeries in his first year. Prior to every surgery; there was the helpless nervous feeling as you sent your child back to surgery, the anxiety during the surgery, the relief after meeting with the surgeon post surgery, and the days and weeks of nurturing him back to health. There was also the love and care all of Parker's nurses, doctors, and health care workers provided to our family. My wife had a great idea to take a picture of Parker each month. On his first birthday, we made a picture wall of all 12 pictures to share with family and friends, and it was wonderful to see how he changed and grew.
The next 3 years were filled with many childhood activities. There were pumpkin decorating contests, potty training, reading books, swimming lessons, ice cream shop visits, Thomas the Train train rides, wrestling with big brother, learning to ride a bike, pillow fort building, figuring out favorite pizza toppings, dance parties, and watching Disney movies. One of the most wonderful things during this time was watching Parker and his brother build a bond that will last a lifetime. Parker loves spending time with his big brother and Rowan would do anything for his little brother.
The last 3 years were also filled with other activities; speech therapy sessions, dentist visits, multiple evaluations and testing. We knew there were more surgeries in the future but didn't know when or how many.
At Parker's 5 year annual visit with his Cleft team we learned he was going to have surgery in early March and another one in July. The surgeries were still filled with anxiety, hopefulness and many late nights helping him recover. In one sense it was better this time as he was older and able to share how he felt and what he needed. He also got lots of ice cream and TV time. Just to keep us on our toes there was also a global pandemic. Once again his medical team was so supportive through this round of surgeries.
Prior to Parker's July surgery, we were able to vacation at a home near a lake. We had so much fun together as a family, hiking, boat rides, spending time on the beach and sitting around a campfire making s'mores. These are the moments we treasure. We know there will be more surgeries, speech classes, dental visits, and IEP's, but we wouldn't change any of it. We feel so blessed to have Parker in our lives.
Camielle is diagnosed with a rare condition called Marshal syndrome. She is full of excitement and loves to go on adventures! She is absolutely FEARLESS. Mermaids are her life!
