Brendan had a great Easter weekend! He still looks good and we are hoping to receive some good news at the Mayo Clinic this week.

My Story

Please read my story and pass it on to your friends.  You never know who may have the diagnosis, a cure for me or know someone that has a similar story. 

 

 

Journal

Wednesday, June 3, 2009 9:51 AM, CDT


On Monday, Brendan started having his IVIg infusions in the infusion center at Children's Hospital.  Everything went so smooth,  they really knew what they were doing.   After a year and a half of living on the 12th floor, it is hard to believe that Brendan's 24 hour infusions are a thing of the past.  We are really going to miss all of the wonderful nurses and pca's on the 12th floor (we will still be in to visit).  We know our journey hasn't ended, we hope Brendan doesn't have to be a patient on the 12th floor for a long time. 
Brendan continues to be making progress, his vision seems to be getting a lot better.  He still has about four blind spots but has managed to get himself on a roller hockey team, he is so excited.  His first game is Saturday.  Brendan's doctor's were shocked that we were allowing him to be on a roller hockey team but we assured them that he would be wearing a helmet.

We have hit a milestone, Brendan has been seizure free for a year.  His last major seizure (he still has the visual spots and dots, but they have never been recorded as a seizure) was last June when my neighbor and I pulled him out of the pool (not the best memory).  It has been so nice to not have to see those seizures (if you have ever seen one, you know how scary they can be). 

Thanks again for your continued prayers for Brendan!

Have a great summer!

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Please sign Brendan's guestbook, he loves to hear from everyone.  He gets a big smile on his face when we read him his guestbook messages.  Thank you for helping Brendan get through his rough times.

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E-MAIL AUTHOR

kristastaub@hotmail.com

HOSPITAL INFORMATION

St. Louis Children's Hospital
One Children's Place
St. Louis, MO 63110
(314) 454-6000