Update on Poor Brionna...

[doxielady5569128]

WARNING: Bad NEWS!!!   She went back to the doctor's appointment today and they gave her parents some very frustrating news.  They did a CTscan and realized that the left side of her skull had not grown since her surgery a few weeks ago. The right side had grown as expected.  What this means is that either her skull immediately fused back together after the surgery or that the screws they put in are not workng to expand her skull.  Her parents turn the screws every night which causes her a lot of pain.   

What they are going to do is redo the entire surgery.  The only different they will do is leave the right side alone since it is growing properly.   Please send mega rays to her for another quick recovery and that it won't be as painful as the first surgery.   I'm hoping they can at least wait until after her birthday on Sunday.  At least let her have that day pain free.     I have been in tears since coming home from church and reading the email from her mom.   Its heartbreaking to know they are going to have another month of worry and pain to go through.   

Ill keep you updated on when her surgery will be and how she is doing.   

[Teresa]

This has to be so frustrating and also so scary for her parents. I hate it that it happens at a time when Brionna was finally pain-free for awhile. The only bright side, if one is to be found, is when Brionna is older, she will remember very little of this, if any. Right now, that is hard to believe, but can be a comfort to know.
I pray that this surgery is a success and the recovery is quick and much easy. Please let her parents know that many people are sending up prayers on their behalf.
Do you have a picture of Brionna?

Something I thought of. There is a website called Caring Bridge at www.caringbridge.org. Brionna's parents can start a page for her there, at no charge where they can post pictures, update friends and relatives on her condition (they can even have someone else log-in and update during the surgery if they can't get online at the hospital) and one of the best things is the site has a guestbook that people can sign. The guestbook is such a comfort to the parents and one day, one Brionna is older, they can have those entries printed out and read them to her and let her see how many people care for her and prayed for her during this time.Here is a link to a page to give you an example. This little boy has suffered from seizures since he was born. Last year, he had all but 20% of the left side of his brain removed. They have had his Caring Bridge site up for a couple of years. His story is really inspiring.
http://www.caringbridge.org/visit/isaacedens

[doxielady5569128]

Thank you so much for your comforting words Teresa!  Thank you also for the information about caringbridge.com.  Her family already has a page set up for her but have asked that only family and friends access it.  So, unfortunately I can't share any pictures of her with you at this time.  To give you an idea of how small she is, she has a baby brother that was born in October.  Brionna and her brother are the same weight!     

Brionna is pain free today but the doctors say she will be in tremendous pain if they don't redo the surgery.  She is set to have surgery again on May 6th.  Her family was feeling much better today about dealing with this setback.   

[Barb]

Mega rays on the way for Brionna - she should NOT have to be going through this - my heart aches for her and her family.  Please keep us posted !

[Sandishooligans]

Just caught up on this story.  Poor little girl.    and good thoughts to Brionna

[Dee Dee and Hallie]

Poor baby girl. I hope it goes better than expected and is a success this time. Thinking of her and her family.