The First Blog

well, i have been talking about creating a website for akaiya for the past 4 years... i finally found a medium that was so easy to work with i felt bad not signing up :)

so to start off with i will introduce myself - i am kelly, akaiya's mom. so enough about me, let's get on to the purpose of this blog - akaiya :)

akaiya was born september 4, 2002. she weighed 5 lbs 1 oz. and was 18" long. because of her low birth weight and her unwillingness to eat she was placed in the NICU. 3 days after she was born she had several spells of apnea which prompted the hospital she was in to transfer her to a larger facility. akaiya spent the first month of her life in the NICU at Cook County Hospital in Chicago. during that month we were informed of her diagnosis of trisomy 18 and told that we could expect akaiya to pass away at anytime. akaiya had other plans apparently because she is still here with us 6 years later :)

while akaiya has been a relatively healthy little girl, she has had her issues over the years. she is an oral eater and it has been a stuggle at times to keep her eating enough to gain weight. she also battled reflux from the time she was 1 until she was 4 years old. we were giving her prevacid for the reflux, but as she got older she didn't seem to need it (this was determined very scientifically by forgetting the medicine at home when we went away for a weekend...) once we noticed that she didn't have any of the reflux symptoms without the medicine we decided to take her off of it and she has been fine ever since. akaiya is extremely delayed physically and mentally so she has been receiving therapy(PT, OT, DT, ST) since she was 2 months old. in the beginning the therapists would come to the home and provide services. after akaiya turned 3 she aged out of the early intervention program and started going to school to receive services. in addition to school therapy akaiya also started receiving therapy at the hospital when she was about 4.5. unfortunately these services will be ending soon :( akaiya's most pervasive issue has been constipation. we have tried many different remedies and have just come to realize that it is what it is and we deal with it as it comes. akaiya has only been hospitaized once (besides when she was first born), and this was for RSV when she was 3.5 years old. she spent a week in the hospital and has not had RSV again. other than that, like i said earlier, akaiya is a healthy little kid. she spends less time in the doctor's office than most kids i know. we have been very blessed to have such a happy little girl.

Akaiya when she was first born

Akaiya in her first Halloween costume - an angel