Tuesday was Kylie's appointment with the cardiologist for an echocardiogram. Let's just say Kylie was super patient for the 45 minutes that it took for them to look at her heart. Kylie got a little restless, but I think I would too.
The other funny part of this whole story is dealing with insurance. Insurance approved us seeing the specialist as long as we left hospice. Without hospice, we would be lost!!! They are a constant source of comfort and information. They are here for us 24/7. After grieving their denial of Kylie seeing the specialist on hospice, they of course said no again. Out of this battle though, we did get a benefit. Kylie was finally approved for her RSV shots (which are $1,000 a pop, but will help keep her safe from further sickness that is out there). Insurance denied her $1,000 echo, but okayed her $1,000 RSV shots, go figure.
Kylie has had one blue episode since then. We thought we would make it a week without one, but we were only one day shy. We just pray that each day will be a good one and Kylie will continue to amaze us.
Sunday, January 24, 2010
Friday, January 22, 2010
Kylie is now 16 weeks old, about 5 pounds 10 ounces and getting to be a cute/big girl. She continues to amaze us everyday, but prayer is needed.
Over the last 48 hours, Kylie has had 4 apnea/turning blue episodes. We think it is possibly due to her heart and have an appointment with a cardiologist this Tuesday for an echocardiogram. We pray that it is nothing too big or damaging to her heart because we do not know how or what they will be able to do to help her. We also ask for prayer for Kylie because we do not even know if she will make it to her appointment.
She is so precious to us and know that her time here with us is limited, but we just want to give her all that we can to thrive for as long as we can. She has constantly surprised us and we pray that she will continue to do so. She is the strongest person that I know.