Caden and Bailey

Caden and Bailey

Tuesday, June 22, 2010

Tuesday

(This is Chism... Becca asked me to fill in for her on here) Well, we just got finished talking to the neurologist about the test results. Fortunately her heart and kidneys were clear of any abnormalities, and the neurologist said if any tubers are present the child is born with them and are not likely to develop new ones(note that these are not tumors, but small growths/abnormalities called tubors). However, the MRI did reveal that she had several spots scattered about on her brain(again...not tumors), some around the size of a quarter. The neurologist recommended starting her on a new drug therapy called Sabril, which was just approved in the U.S. It is considered the "gold standard" of medicines for this type of illness(Tuberous Sclerosis Complex). It should help suppress the infantile spasms she's been having, but will not affect any of the "tubers" on her brain or anywhere else. There are some side affects to this drug, mainly a 1 in 3 chance that it will damage her vision... affecting her peripheral vision. If any damage does occur, it will be permanent, even if she stops taking the drug. Of course, it's not like we have much of a choice... since our choice is either take that risk or allow the seizures to continue, which could affect her brain development. I'm sure there are more details, but me being a man, I have a knack for leaving them out. Thank you for all of the thoughts, prayers, and well wishes, we really appreciate it. Please continue to pray. We will get to bring Bailey home today.

14 comments:

Claire Green said...

I am sorry chism. It isn't a fun place to be with your back up against the wall. I know what this feels like...when I could remember I would get someone to take notes when we talked to the doctor so I could go back later. It is all so new/painful its hard to take in. I was always lugging around a 3 ring binder! Praying for yall!

Anonymous said...

Chism, I was so glad to read the update on Bailey - all of you have been our thoughts and prayers since we heard about Bailey - hope everything will go good when you get home - George and I have said a special prayer for Bailey!
We love yall, Sherrill and George

Anonymous said...

Chism, I was so glad to read the update on Bailey - you and your family have been in our prayers since we heard the news about Bailey - hope everything will go good when yall get home - George and I have said a special prayer for Bailey
We love yall, Sherrill and George

Anonymous said...

Chism and Becca, we are praying for you guys. I pray that the medication will work and that Bailey will have no side effects to the drugs!!!! Trust that God has a plan for all of you. We will be thinking of you. Please keep us posted! Shelbi and Andrew Lamb

Rough Edges Pottery said...

Chism and Becca, yall have been in my prayers and thoughts for the past few days. Mary Countiss misses Bailey at school. So glad to hear yall are coming home and that her kidneys and other organs are clear. Let me know if you need anything and give Bailey a great big hug from us. Prayers continue, Mrs. Patsy

Sarah Nell said...

Chism and Becca, we are praying for yall and pray that the medication will work and that there will be no side effects. We love yall!

Sarah Nell

Anonymous said...

So excited ya'll are coming back to Galey Road! I'll cook something this week and bring it down. Call me anytime for anything. Love, Gay

Anonymous said...

Chism & Becca,
We are praying for all of you. God wil deliver each of you from this and time will heal it all with God's hands. If you need us we are here in Jackson so give us a call. Love you all..

Sheryl & Terry

Cari said...

Still praying so hard for ya'll! Glad to hear that the other tests came back negative! Loved the last pic you posted(except of course for the maroon and white) ha! Hope to see ya'll soon!
Love,
Cari Jo, Marcus and Walker

The Robertsons said...

Praying for you guys! Stay strong and positive. Love yall!

Anonymous said...

Chism, I'm Matt Lilly, a friend of Brad and Mary Fisher. Just wanted to let you know that my family and I are praying for your daughter. Glad to here that there is treatment available and the doctors are optimistic. God, the Great Physician, will see you all through this if you just leave it at his feet! Praying for the best!

Kristen said...

What a praise that Bailey's heart and kidney's are clear! And hopefully the medication helps Bailey without causing any side effects. You've got lots of folks over here in Arkansas praying for you!

Anonymous said...

I LOVE YOU GUYS!!!!!!!!!!!!!!!!!

Your favorite...Aunt Mary Fisher;)

Shelly said...

I can tell that you are having to be strong during this time, Chism. Praying for your strength and for Bailey to react well to the new treatment.
Love y'all!