long, hard road
my name is bree. my daughter and fiance have noonan syndrome. Arraya was diagnosed at 6 weeks of age with failure to thrive, supravalvular pulmonary stenosis, bilateral cleft palette, poor latch on. the first year of her life we traveled a few times a month to Childrens Hospital. She was seen by the cardiology, urology, craniofacial/cleft, and other specialist. the poor thing was poked and proded relenlentlessly. she still has a fear of the dr office. Arraya was behind with sitting up, standing, walking. her hearing was troubled by numerous ear infections. ear tubes were placed in may of 2013. at home she received OT, PT services several times a week.due to her bilateral palette she would push the food out of her mouth when trying to swallow and choked alot.
Arraya rarely sleeps through the night. waking as often as every 15 minutes. she has unexplained pain in her arms and legs. her appetite varies greeatly from a few bites of food a day to never ending eating...lol. her facial features resemble a typical person with noonans, low set ears, low hairline. she is small for her age and always will be. She now receives in home services for behavior issues several times a week with a TSS and BSC. this year she was diagnosed with ADHD and ODD(oppositional defiant disorder). she attends a preschool program and does very well. this august she will attend an allday pre-k. shes a little behind developmentally but she is very smart and doing well.
it has been a long hard road for me, as a parent. we struggle together. many,many days i want to quit. having a child with noonans is physically, mentally and emotionally draining. arraya is a very loving, smart, artistic, imaginative little girl. she just needed some extra love and attention. her symptoms are "mild" compared to some children. god b less them all and their parents/caregivers.
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