raising ladybug

This is a blog about Adela (a.k.a – ladybug)  written by Mommy and occasionally Daddy.

It was originally intended and started as a site to blog semi-daily about Adela’s uniqueness.  As you can see from the first posting, it started under far more dramatic circumstances.  Hopefully it will continue after the latest medical mystery and Adela and I will be able to share our day-to-day excitement.

Ladybug Biography

Why was she in the hospital?

After two weeks of seeming run-down, Adela was admitted to Duke Children’s Hospital for hypoglycemia and nutritional deficiencies caused by her allergies and feeding difficulties. We chose to address her nutritional issues with specialty formula given through a feeding tube. Adela was admitted to the UNC Children’s Hospital for feeding tube surgery and, two days after her surgery, she suddenly stopped breathing. She spent three weeks in the Pediatric ICU on life support recovering from that incident and liver failure. We then moved to a regular hospital room for two more weeks while she continued to improve. The doctors have several theories as to what caused her condition to deteriorate so suddenly, however they aren’t able to prove or disprove any of them.

Why is she small?

When Adela was born she seemed normal for the first five months and then her growth began to slow. After almost a full year of making the rounds of doctors at three hospitals, we discovered that Adela has two genetic conditions – Turner Syndrome and Trisomy-9. While both have various (and serious) symptoms, one benign symptom they share is short stature. Adela’s adult height will most likely be under five feet tall. When she is older, she could receive daily growth hormone shots to help add several inches to her height, however there is only a 50% chance it would be effective.

Why does she need a feeding tube?

Adela has severe food allergies – she is not able to have milk, gluten (wheat), eggs, or nuts (like peanuts). Additionally, she was diagnosed at an early age with sensory integration disorder which contributed to feeding difficulties. Those two issues combined means that Adela needs to receive a large portion of her nutrition from a formula called Elecare. She gets the majority of her formula at night while she’s sleeping, which the feeding tube makes possible. Also, it allows us to give her the formula during the day avoiding a battle at mealtimes.

What can she eat and what are her favorite foods?

Adela can eat anything without milk, gluten (wheat), eggs, or nuts. Also, we have to be cautious of anything with sugars since she may have fructose intolerance. At home, we have to substitute rice flour for wheat flour and rice milk for cow’s milk. Adela loves crunchy foods – pretzels (made with potato flour), veggie chips, and dried peas and corn are some of her favorites. We have some dried apple cubes that are popular and recently she’s taken an interest in raisins. The only meat she will eat is chicken.

How does Adela compare to a typical 3 year old?

In many ways Adela is similar to a typical three year old, especially now that she has been benefiting from her nutritional formula. She has a typical three-year-old’s temperament, ranging from extreme silliness to cranky tantrums. Her therapists believe that cognitively, she is at or above the level of an average three-year-old. Adela’s desire to be independent and help with certain tasks sometimes conflicts with her actual abilities.

Compared to most three-year-old children, she has a very small variety of foods she eats — partially due to her allergies and partially due to feeding sensitivities. While other three-year-olds can be very physically active, Adela’s motor skills are more on the level of a one- to two-year-old child. She does not walk like a typical, confident three-year-old, nor can she jump, crawl, climb or get to a standing position very easily. At three-years, most children can verbally communicate with anywhere between 300 to 1,000 words. Adela only has about 20 words and instead uses baby sign language. She knows more than 150 different signs but, because of the lack of spoken language, she does not communicate well with other children or adults outside the family.

What services does she receive?

Adela receives four types of therapies at home – physical, occupational, feeding, and speech. Physical therapy and occupational therapy are each once a week. Feeding therapy and speech therapy are each twice a week. It can get hectic juggling six therapy appointments a week, but Adela’s progress so far makes it worth it.

What are some of her favorite things to do?

Adela loves to read and be read to – she can spend most of her day with a stack of books. Her favorite books are a series featuring two sheep named Boo and Baa – we read them almost every night. Her favorite animals are sheep and monkeys. She’s a big fan of Curious George. She also inherited her father’s love of building blocks – most recently Duplo blocks.

What is her future outlook?

The doctors seem confident that she will fully recover from her recent hospitalization. There are some medical conditions we will have to closely monitor as she grows older such as her heart defects, hormone levels, and liver function. With continued therapy, her physical and speech delays can be managed until she is closer to an age-appropriate level. She will keep her feeding tube until she is able to receive the appropriate amount of nutrients through regular food. While she may outgrow some of her food allergies, it’s unlikely that she will outgrow all of them. The most noticeable sign of her conditions will be her height – she will always be well below average height.