My name is Annabella. You can call me Bella!
I was born with Pfeiffer syndrome type II with multiple congenitals. So far I have had 40 surgeries if not more.
I am G-tube and Tracheostomy tube dependent since as long as I can remember. I also need my ventilator machine and oxygen whenever i asleep because i have sleep center apnea and sleep obstructive apnea. I also have hearing loss on my both ears, it’s because i don’t have ear canal on both ears (no hole). Not only that, i am also diagnose with Arnold Chiari Malformation, Congenital Hydrocephalus, Craniosynostosis, Mid-face Hypoplasia, Spina Bifida unspecified, malformed Kidney, etc.
Because of my complex condition i am a non-verbal baby and has speech delay. My ENT doctor said my voice box is damage and too swollen because i was intubate pretty often in the past. I thought i had a hope using PMV to help me talk, but it did not work with me. Hopefully i can get my voice box fix (voice box reconstruction) in the future, i don’t know when but i believe there will always a hope for me. With all the things that’s going on with me it does not stop me from learning to communicate in a different way. I learnt how to sign since I was 1.5 years old and I know how to sign about 200 words now.
However due to my condition I am not able to sign properly, thus why people unable to understand me. It really frustate me, because i have so many things to say. When i go to school or my therapy place or hospital, i really want to be able to communicate with others when they talk to me, i answered them with sign but mostly they don’t understand it. Only my parents and some of my therapist understand sign language, when i’m with them they can help interpret my sign to others (i’m using ASL, American Sign Language) but without them no one will understand me and that makes me sad.
People who know me will say i’m the funniest and silliest little girl they ever met. I just love make people laugh and smile. When at home, the most favorite activity i like to do is reading book, i love to read any kind of book. I always read book in the morning, i read couple more during the day and i always make sure my parents read me 2 or 3 books before i go to bed, i just love book so much. Sometimes for bedtime stories, we skip the book and just talk about airplane or beach. I wish one day i can ride airplane and go to the beach play with my beach ball and swim in the swimming pool. I also have other things that i like to do such as painting and watch Food network or house channel at HGTV on tv. I don’t like watching cartoon at all, i prefer to watch people cook even though i don’t drink or eat anything by mouth but seeing them cook and eat always bring happiness to me and i also like to watch people build houses because i think it’s amazing and beautiful.
Because i was hospitalized a lot in the past, born deaf and not mobile physically, i spent most of my times doing quiet activity. Part of that i diagnosed with SPD (sensory processing disorder), i spent my time since i was born until i turned 7 months old in the hospital and rehabilitation hospital.
My parents taught me to type in an electronic devices (computer) since i was 1.5 years old. They were very surprised to find out that I am a quick learner. I am able to type so many different words now. They say, if i have my own communication device (IPAD with Lamp software) i can type the word on it and talk to others. I can also use it as regular computer in the future when i enter elementary grade. My therapist said, if my gross motoric skill still not making improvement and me still not able to write in the future, i can just use computer instead write it in book. She told me, there will always a way, just don’t give up.
I was lucky i got a chance to tried my speech pathologist therapist Ipad with LAMP software before for couple months and i loved it. It’s not that hard for me to use it because i already knew how to read a little and familiar with the icon and program. I also have equipment (gait trainer and power wheelchair) that already has the mount to it to put my communication device. My parents said, we already have the “Lamp software” that already purchased by other foundation for me, right now we are hoping we can get some help from The Arya Foundation to get the Ipad plus keyboard to use as my communication device for that Lamp software.
My parents and therapist told me even though I can’t speak properly and have difficulties writing. As long as I can read and I have the right communication tool I will still able to communicate with people around me and I also can still learn just like my friends. Having an iPad that has keyoard will definitely help me communicate with other people and help me learn about more stuff.