Ramblings

I never imagined there would be so many people who read this blog, or that so many people would stumble upon our facebook page. When I posted our now "famous" (at least it is to me!) photo of Cael in his crib, I was hoping to get a couple hundred "likes". I was NEVER thinking it would reach 138,470 (as of 9:44 PM lol). That photo is also the reason we have 2,883 page likes and over 800 people who read my blog yesterday. Would you believe there was one day where 11,000 people looked at this blog?! It's amazing what the internet has enabled us to do.

Many people have contacted me about their own experiences with SCID in their own children. I know this disease is not common, and for so many to have found our page or blog and to feel the urge to share their experience with me is great. I love to hear success stories of their children getting stem cell transplants and are now living completely normal lives years after the transplant. I have also seen several who have had sad stories to share of losing their child to SCID. I am so sorry to all those parents who have had to endure the loss of a loved one, especially when it is a child.

I am not a religious person. I never have been. I still haven't found any deep religious meaning or feeling through all of this. That being said, I appreciate so much all of the prayers and support being sent to us from people who have never even met us. I know how important religion is to so many people, and for them to find it in their hearts to include us in their prayers means so much to me.

My sister is AMAZING. She lives on an entire other continent, and yet, has made it her priority to help us. She rallied her mum troops and put together a walk to help raise funds for us. Between her and her 8 other mum friends, they were able to raise over $2,100! All of the mums walked 6.5 miles with their army of 2 year olds. 2 YEAR OLDS...walking 6.5 miles....can you imagine trying to keep them all happy and together and not going completely insane? :) You all are so wonderful. Thank you Crystal, Emma, Tracey, Michelle, Susannah, Miki, Teresa, Julie, Irene, and dads, Ian and Guiseppe.

Thank you to everyone else who has also donated. I was trying to work part time in our Houston office, but that became too difficult when Cael got really sick a month ago (he was throwing up 5 times a day, wouldn't eat, and ended up in the ICU). Every donation means a little more time I can spend at the hospital with my little guy. Fortunately, my work has been incredibly supporting and understanding through all of this, and has allowed me to take the time I need to be away from work and at the hospital with Cael.

Now for the real reason you read my blog...CAEL! He had a good day today. He started the Cytoxan last night, and it doesn't seem to have bothered him too much. He was still a happy chappy, as my sister says. Tonight he starts another chemo, called Fludarabine. He will get this one for 4 days, as well as the Cytoxan for 3 more. Then the stem cell infusion on Friday. I can't believe it is almost here! It is so helpful to have milestones to look forward to. First the transplant, then we will be looking for certain numbers of cells, then it will be looking forward to when he is in the clear for the infections, then when we will be leaving the hospital, then finally when we get to go home. HOME! I can't wait to go home. I miss home so much. My bed, my pets, my house. I miss shopping...just grocery shopping, or shopping for toys for Cael. And as Adam reminds me, I hated shopping. I just miss the normal of everything.

Sorry, back to Cael. He has a new favorite game. We call it "pass the baby". As soon as we sit him up in the crib, he holds his arms out to be picked up. Then if Adam picks him up, he finds me and holds his arms out to me. There were 2 doctors and a nurse in the room. He was passed between them about 4 times before they finally tore themselves away from us. :) He really loves the attention, and has NO problem with all the new people. I think he is going to be a very social little man when we finally get him home. :)