Wednesday, October 11, 2006

Baptist tomorrow

Cameron is having another MRI at 8am tomorrow to be followed by her 2nd round of IvIG therapy. IvIG is intravenous immunoglobulin and is taking from a combination of many donors of human plasma. This will be the 1st in what will be monthly IvIG treatments--the infusion lasts about 6 hours or so. We are hoping that this can put a stop to her daytime seizures and will allow her to go back to kindergarten next week. Our doctors at Johns Hopkins want to run through this option of therapy before we look furthur into surgery. Also the MRI we are having will show them if any changes have occured since the last one which would be a sign that the Rasmussen's Syndrome has progressed. Please continue to keep her in your prayers to give her relief from the seizures or to move us to a point that surgery is a more viable option. At this point, surgery is the only "cure" for Rasmussen's and IvIG or any other non-surgical therapy possibly just gives her temorary relief. However anything is possible and with God's help miracles do occur. While we were at Johns Hopkins Shelly met Holly Paauwe and her daughter Avery. Avery just had a hemispherectomy (the surgery Cameron might have later) and has had a rough time since the operation. Here is her blog http://thepaauwereport.blogspot.com If you read this you will see how great Holly's faith is in spite of what is going on now. We pray that we can be as strong as her if we ever have to cross that path. Please keep Avery and her family in your prayers so hopefully things will improve for them quickly. We greatly appreciate all the support that you have given us and we feel very blessed to have Cameron & Caroline regardless of what we have to deal with to provide them with the best quality of life in the future. Nobody ever said parenting was easy and man were they not joking :-) We love you all--Casey, Shelly, Cameron & Caroline

3 comments:

Anonymous said...

Hello Casey, Shelly, Cameron and Caroline. Holly Paauwe here. I just wanted to thank you for sending me the link to your blog and to tell you how wonderful it was to meet Shelly and Cameron a couple weeks ago. I am so glad to be able to stay updated on Cameron's progress. (What did we do before the internet?) I pray that she gets relief from the non-surgical treatements that she is getting and that, in the interim, Johns Hopkins is able to find better, more permanent solutions for her. The road you walk with a sick child is hard, but all the love you receive and the lessons you learn along the way are truely blessings from God. Be sure that Cameron is here for a purpose, even if you do not fully realize the magnitude and specifics of it yet. Stay strong and faithful. God will pull you through and lead you to the best possible answers for your beautiful daughter. One day at a time...that's the secret to getting through. There is always hope for a better tomorrow. Please know that you all our always in our prayers. I hope that I am soon hearing how great Cameron is doing...God can do miraculous things.

Thanks for including Avery in your last post. We feel blessed to be able to share her with anyone interested, as I am sure you are to share Cameron. You will be surprised by how many lives your precious child will touch. We are constantly amazed by the outpouring of love and support we receive. I hope you all are feeling that too.

Love and prayers,
Holly

andrea said...

Yeah! What a great way for us to be able to follow Cameron's progress. Thanks for sharing with us. You are always in our prayers. You are both such great examples to me. Please know that I am here if you need anything. Whitney would especially love to help watching Caroline if you need a break. :)

Jayne said...

Thank you SO much for sending me your blog link.

I hope you find keeping the blog beneficial to your spirits. I think it is an amazing way to keep friends and family up to date, to connect with people in the same situation, and (last but not least) to sort through your feelings.

I'm with mommy paauwe: What did we do before the Internet?!

Love, Jayne