Tuesday, April 20, 2010

Why Do a Fundraiser?








Rylie is a special little girl that was born with hypoplastic left heart syndrome which was undetected until she was 9 days old, because of this she and her family were rushed to Texas Children’s Hospital in Houston, TX . Rylie and her mom are now staying in Houston, TX which is about 120 plus miles away from Rylie’s dad who had to go back to work to help pay the bills. Rylie‘s little brother (age 2) has been hopping from grandparent’s house to another grandparent‘s house so it is very hard on him because it costs so much for him to see his family . Rylie’s mom is unable to return to work because she is in the hospital all day with Rylie. Since the family has lost their second income the bills at home have been piling up. Not only has the cost of living gone up with the family but so has the cost of having a very sick baby; on average it costs Rylie’s mom about $40 a day to stay with Rylie because it cost $12 a day (only if she doesn’t leave, it is $12 for every time she enters/leaves) just to park at the garage, then there is the cost of food and drinks. Anytime that dad comes down for a day it cost at least $60. If he is here for more than one day it that cost is greatly increased. That goes the same for Rylie’s Grammy that lives even further away and she tries to come and see her granddaughter at least once a week.








Unfortunately Rylie’s mom and dad didn’t have any money in savings (as most young couples) so now it has made it even harder on them to meet their financial obligations. Dad had just started his job at Grimes County Sheriffs Office as a Deputy in November 2009 and the family had to move to College Station. Because of this move mom had to leave her full time job of 2 years. Mom wasn’t able to find a full time job until the week before Christmas. This meant mom had no paid sick leave.






With the loss of income and having a very sick baby in the hospital the family has fallen behind on some of their bills. Dad has picked up extra security jobs to help ends meet but there is still a substantial short-fall each month. The Family is looking at a stay of at least six months in the hospital as Rylie is waiting to have the second of three surgeries. Even after being released home Rylie will be required to return to Texas Children’s for evaluation once a week.






So how can you help:

You can donate to the family in one of their several fundraisers that are going on now, or you can do a fundraiser to help them or even better you can pray for baby Rylie and her Family.
There are several events going on now on Rylie's fan page on Facebook, Join her Village and help suport her.

Tuesday, April 6, 2010

An update... still waiting. Prayers needed.

 Rylie in the hospital, waiting and praying for good news.

So the lead cardio doctor came to consult with me today and they are ordering an MRI of Rylie' heart to take a good look at veins supplying oxygen to her lungs. After the MRI the cardio team will meet and decide if Rylie will be able to have the 2nd bypass (Glenn) surgery. Pretty much, if Rylie is to have any quality of life that's the route we need to take. If for some reason she's not able to have the Glenn, it will just be a matter of keeping her comfortable with meds. Her ability to function with meds is short term. Please pray that we are able to have the Glenn.

Monday, April 5, 2010

Update 04.05.10

Rylie spent her first Easter in the hospital. Isn't she adorable?

The transplant doctor came by this afternoon with discouraging news. The antibodies are indeed coming from Rylie which means she is not a candidate for transplant at this time. The doctor said he's not ever seen antibodies this high in a baby as small as her. With that said, we are going to meet with the cardio team tomorrow to find out where we go from here. The transplant doc seemed to think we'd just go forward with the original plan, including 3 heart bypasses (she has already had the first). The second was to originally to be done between 3-6 months. The third sometime after age 2. Even though the news was grim we are keeping up our prayers and our faith in God.

Rylie and family were able to spend some time together on Easter. There are several fundraisers in the works for the Crenshaw family. Details to follow later tonight. Hope you can help!