Lily was born premature at 30 weeks. She spent 3 ½ months in the NICU. Lily had her first surgery just over a month after she was born to repair duodenal atresia. Before this surgery she was living off of IV fluids. Giving her the first bottle many days after the surgery was beyond exciting! However, she just wasn’t strong enough to take in the volume she needed so she had her second surgery to place a G-button. She had to have three more surgeries to repair hernias and GI issues. She has had to be put under for so many scopes, procedures, and tests and repair ulcers. Luckily, the amount of medication she is on has decreased though must regulate her thyroid, reflux, and GI tract with medication. Lily is also working on fine motor and speech skills with OT, PT, and Speech therapy. She has orthotics to assist her walking, specialized seating, rails, wears glasses, scissors, etc to help her adapt and learn at her own pace.
Lily Belle is hilarious! She has the most infectious laugh and smile. She goes a million miles a minute. She loves music; She can feel it and you can tell by her excellent dance moves. She gives the best hugs and is so creative. She wants ice cream all day long and never seen anyone be so excited when eating it ☺. She is compassionate and loving. Lily can tell if someone is upset and will be the first to comfort them. She is way too social! Everywhere we go she has to say “Hello” to everyone and wave and those blank stares or phone minded people stop, look-up, smile and wave. She loves with all her heart and ours is full because of her. Lily currently receives Speech Therapy and we have also enrolled her in “Motor Mouths”, a group speech therapy program at PS Kids. We work with her on our own as well but since Lily has entered school we have noticed that they are using SmartBoards and other electronic means to teach. Lily needs her own communication device, She gets very frustrated when she can’t communicate her wants and needs and we try very hard to do sign language, flashcards, etc. to assist her. We have researched numerous apps for special needs children and have found multiple that will assist with speech.