So we just came back from the Dr. to $1000.00 worth of Crayola materials that we won on The Today Show! So exciting! It was so much fun for the kids to sort through and play with so many new things. We have so much we put together little packages for Julia's NF friends we've met around the country. They'll love a new treat when they have a doctor appointment. We also put aside a bunch of things for Julia's upcoming appointment's. Thank you Crayola! Thank you The Today Show!
As usual I'm worried. I'm worried that Julia has a bump on her big toe. The Doctor said it might be a neurofibroma or might be from her shoe. hmmmmmmmmm... life with NF, always a big question. I'm worried because kids that have neurofibromas end up being adults with lots of neurofibromas. The reality is that adults aren't usually very nice to different looking people. All I want is for my daughter to have a healthy, happy, long life. I want her to laugh, have loads of friends and fall in love.
I'm also worried about Julia growing or her lack of growth. That's next weeks appointment. We are seeing an endocrinologist/ pediatric oncologist who will hopefully have an answer as to why Miss Ladybug isn't growing.
Today's appointment was actually fun because a photographer came and took a million pictures of us. Julia had a great time, she loves the camera! They are using the pictures for their website and pamphlets. That was also good for Julia, it took away the serious side of this. Her new favorite question is "Is NF bad to have?" Oh my ladybug girl if I could just kiss this and make it all better.
Training for the NYC marathon has been a great thing. Running somehow makes me feel better. It gets the anxiety out. I think it's the feeling that something is in my control in this out of control situation. I can do this, I can run.
I'm tired of NF. I'm tired of worrying. I want to be like the other moms I know. They worry over strep throat, ear infections and homework. They dream sweet dreams. They live so carefree next to us. I wonder what will happen as Julia grows up. The headaches, stomach aches, bumps... NF is progressive and it makes my head and heart hurt to think that my little girl will live a life that is full of pain.
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Hello, I have 4 children (all boys) as well!
ReplyDeleteWarren 14, Caden 11, Carsen 6, and Evan almost 14mths (NF1). I saw your daughter's segment on the today show. It was very moving and I was able to share it with family and friends so that they could better understand what Evan has. You have a beautiful family. Thanks for sharing your story. Unfortunately, Evan's NF journey is just beginning. I'm very scared and worried for his future. If you'd like to check out our site I'll leave our link. He also has a carepage. Just go to carepages and visit: evanriley
Our blogsite http://nf1andmito.blogspot.com/(mainly used just to post pictures). I update on the carepage.
Take care!
Krystena Richards
I have NF, too (I am 27 years old, almost 28) and I also have a NF tumor on my big toe! I have NFmas in many places and when I was younger I also had a ton of migraines. I only have some now. My worse pains are in my abdomen, thanks to a 'newly discovered' NF tumor in my retroperitoneum. I am actually in the works of developing my own NF blog. I googled to see if there were any other NF blogs on blogspot and found this, and wanted to see what your fist post was like which is why I commented. Once I get my blogspot, I'll follow you so I can learn more about your precious daughter! :) Take care Jen
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