About Ladybug

Our daughter, Adela, is our little ladybug.

This blog has grown to have many functions and, I’m sure, it will continue to evolve just as our family does.  It was originally intended to be a site where we would post every so often about our daughter’s growth and achievements — the typical proud parents’ blog.  However, as you can see from our first posting, it started under far more dramatic circumstances when Adela was hospitalized.  Since then, we have also used it as a vehicle to deliver news of Adela’s health to concerned family and friends.  In essence, it chronicles our journey as we learn to balance the typical skills of parenting with the atypical skills of raising a child with unique medical problems.

After hearing alot of people ask the same questions to us, we developed a “Ladybug FAQ”.

Why is she in the hospital in fall, 2010?
After Adela’s first hospitalization, she would get what we thought was a “stomach bug” every month or two with the typical, misery-inducing symptoms of fever, diarehia, vomiting, and loss of appetite.  After four to six days, the symptoms would disappear.  This last time was different — the symptoms did not go away after a week.  After a visit to her pediatrician and some lab tests, it was determined that something else was going on and we chose to admit her to UNC Children’s Hospital to try and get a handle on things.  A scope procedure (flexible sigmoidoscopy) revealed that her colon was severely inflammed and damaged.  Because of that damage, she had not been absorbing nutrients from her food and was nutritionally deficient.  She’s currently receiving IV nutrition in addition to her Elecare while they try to heal her intestines.  We don’t have an answer yet as to what caused the inflammation.

Why was she in the hospital in spring, 2009?
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. She recovered well and, as far as we know, doesn’t have any lasting effects from the incident.

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 meant that, for a while, Adela needed to receive a large portion of her nutrition from a formula called Elecare. She would get the majority of her formula at night while she’s sleeping, which the feeding tube makes possible. Also, it allowed us to give her the formula during the day avoiding a battle at mealtimes.  Currently, she still receives Elecare at night while she’s sleeping, but her appetite has improved to the point where she only needs about a quarter to a third of her nutrition from the Elecare.

What can she eat and what are her favorite foods?
Adela can eat anything without milk, gluten (wheat), eggs, or nuts. Also, we tend to be cautious of anything with sugars since there is an unresolved question of whether she has hereditary fructose intolerance. At home, we have to substitute rice flour for wheat flour and rice milk for cow’s milk. Adela’s palate of foods has increased greatly in the past year.  She will eat most meats (ham, chicken, pork, bacon, sausage) and veggies (corn, peas, broccli, potatoes).  She also loves rice and pasta (rice-based). Her favorite foods are pretzels (made with potato flour), rice, and the trio of sausage, bacon, and ham.

How does Adela compare to a typical four-year old?
In many ways Adela is similar to a typical four-year old, especially now that she has been benefiting from her nutritional formula. She has a typical four-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 four-year-old. Adela’s desire to be independent and help with certain tasks sometimes conflicts with her actual abilities.

Compared to most four-year-old children, she has a wide variety of foods she eats — the only limits are due to her food allergies and a few remaining food sensitivites (she doesn’t like pureed foods). While other four-year-olds can be very physically active, Adela’s motor skills are more on the level of a two-year-old child. She does not walk like a typical, confident four-year-old, nor can she jump or climb very easily. From a communication perspective, she has the vocabulary and comprehension of a six- to seven-year old (yes, she really does…she’s been tested), however she has some delays that put her speech more on par with a two- to three-year old.

What services does she receive?
Adela receives two types of therapies at home – physical and speech.  She used to receive occupational and feeding therapies, however she made such progress that those are no longer needed.

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 has several favorite TV shows: Curious George, Word World, The Backyardigans, and Shaun the Sheep.  Her favorite movie is “My Neighbor Totoro”.

What is her future outlook?
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.