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Avery is a Fighter; She's Our Hero!

After beating the odds with a large, septated, cystic hygroma, Avery Elizabeth was born in June of 2009. In the womb, Avery had many medical issues along with the hygroma, so our doctors didn't feel she'd make it to birth originally. However, the hygroma dissipated, and she ended up with a much better outlook!

Avery was born with coarctation of the aorta, and was keep in the NICU on medication to await heart surgery. She had surgery at one week old and recovered in the PICU for a few weeks.

At 7 months old, Avery was very sick again with her heart and needed aortic valve replacement surgery. While she coded at the onset of anesthesia, the surgery was a success, and she recovered well. We learned after surgery that Avery's aortic valve was unicuspid or "fused" as the surgeon said.

Avery still sees her cardiologist every six months and will need another valve replacement in the near future, but she is doing really well! She is eight years old and in the second grade. Due to medical issues and her size, we chose to hold Avery back in preschool to allow her to catch up some before beginning Kindergarten.

Avery was given an IEP, and she was labeled "Developmentally Delayed." Avery struggled initially, but she got the hang of things and ended up doing quite well by the end of Kindergarten. She did have hearing issues. Her ears always seemed to be clogged, and something wasn't right.

After getting hearing tests and working with our ENT, it was decided that Avery needed hearing aids for mild to moderate hearing loss. Avery had gotten tubes placed in her ears at a year old, which really helped her to become more verbal. We repeated the surgery to place tubes in her ears ever since then, and her ENT feels she will need them well into the future.

Avery got her hearing aids at the beginning of 1st grade, and they have helped her SO much! Avery has also had surgery to pin her ear back some too. She was having tubes replaced, and her doctor did it then. He pierced her ears while she was under, which she was very excited about.

Now in the 2nd grade, Avery does most of her work on her own. When it comes to deeper thinking, she sometimes struggles, and she gets extra help with math at times. She really surpassed our high expectations and has blown us away!

Avery loves to dance and sing, and she is very social and outgoing. She enjoys going to school and church, and she is a great big sister. She takes gymnastics and has always been strong and agile, with good coordination. She laughs and smiles and gets excited over the smallest things. She truly brings joy to everyone around her and people are drawn to her.

Avery does struggle with emotions sometimes, and she can become angry and have outbursts that are unwarranted. She also needs to know what to expect and likes a routine. She can be quite OCD at times, but we work with her to understand that things won't always go exactly as she thinks they should.

She is extremely bright and has a great memory.

Here are other things that Avery deals with due to her TS:

Hypothyroidism: just like most girls with TS, Avery has to take medication daily. Her endocrinologist recently increased her dosage due to issues she was having.

Ears/Hearing: Avery began getting tubes at one year old. She has had them replaced 4 times now. Currently, she only has one tube because she has a hole in one ear. We've always struggled with drainage and infection, and Avery's hearing has always been an issue. We realized at the end of Kindergarten that it really affected her at school. It was revealed that she had mild/moderate hearing loss, so Avery got hearing aids to start the 1st grade. They have helped her a great deal.

Allergies: Avery sees an allergist for an IGA deficiency in her blood which lowers her immunity. She wears a medical ID bracelet for emergencies because if she is given blood, it has to be modified first.

Celiac disease: About a year and a half ago we discovered that Avery is allergic to gluten and has Celiac disease. She never complained, which we attribute to a high pain tolerance, but internally, she was inflamed and had no cilia. Avery was not absorbing nutrients or gaining weight, but since starting the gluten free diet, she is really growing.

Growth: Avery was never on the regular growth chart and was extremely low on the Turner syndrome chart until we began growth hormone injections after she turned 2. She hasn't seemed to have side effects, but we did switch to morning injections because she was having trouble sleeping at night.

Avery is a fighter and she is our hero. She's shown us what true strength is, and we adore our beautiful, red-headed butterfly!


Additional Resources

Video Presentation from the Turner Syndrome Society of the United States National Conference, Denver Colorado July 22, 2017

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