Comments on: Sunday Visit: No Hands But Ours http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/ Honest reflections on the challenges and blessings of love. Sat, 04 Feb 2012 17:26:59 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Cass http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5294 Cass Mon, 12 Jul 2010 03:17:30 +0000 http://www.onethankfulmom.com/?p=2791#comment-5294 Wow. What a special little girl. Thanks for shairing Eileen and Lisa! Wow. What a special little girl. Thanks for shairing Eileen and Lisa!

]]> By: Patty http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5293 Patty Mon, 12 Jul 2010 02:01:46 +0000 http://www.onethankfulmom.com/?p=2791#comment-5293 Oh my! What a dear little girl! Oh my! What a dear little girl!

]]> By: carla http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5292 carla Mon, 12 Jul 2010 01:26:28 +0000 http://www.onethankfulmom.com/?p=2791#comment-5292 Thank you for sharing for two reasons, first that it was so touching and Maya is adorable, and second that it encouraged me to continue to move forward with our China adoption. We adopted two children from ET 1 1/2 years ago and it has been a difficult adjustment. I have days where I am just not sure about China, but we have been waiting for this little China jewel for over five years now and it could happen by the end of this year. It made my heart flutter again and the original desire rose up in me. I think we get so caught up in the stress of life that it is all we can see sometimes. This reminded me of the real joys of life! We will move forward and see what God does!!! Blessings! Thank you for sharing for two reasons, first that it was so touching and Maya is adorable, and second that it encouraged me to continue to move forward with our China adoption. We adopted two children from ET 1 1/2 years ago and it has been a difficult adjustment. I have days where I am just not sure about China, but we have been waiting for this little China jewel for over five years now and it could happen by the end of this year. It made my heart flutter again and the original desire rose up in me. I think we get so caught up in the stress of life that it is all we can see sometimes. This reminded me of the real joys of life! We will move forward and see what God does!!! Blessings!

]]> By: dawn http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5289 dawn Sun, 11 Jul 2010 21:46:08 +0000 http://www.onethankfulmom.com/?p=2791#comment-5289 That is the most precious thing EVER!!! I think she's the best advocate for special needs adoption that I've ever witnessed. Way to go Maya!! That is the most precious thing EVER!!! I think she's the best advocate for special needs adoption that I've ever witnessed. Way to go Maya!!

]]> By: Giann http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5288 Giann Sun, 11 Jul 2010 19:51:36 +0000 http://www.onethankfulmom.com/?p=2791#comment-5288 Oh my word! She is adorable!!! She made me smile! :) Thanks Maya (sp?) for making my day! Oh my word! She is adorable!!! She made me smile! :)
Thanks Maya (sp?) for making my day!

]]> By: Eileen http://www.onethankfulmom.com/the-daily/sunday-visit-no-hands-but-ours/comment-page-1/#comment-5287 Eileen Sun, 11 Jul 2010 17:23:00 +0000 http://www.onethankfulmom.com/?p=2791#comment-5287 Thank you for sharing Maya's story. It's funny how when Maya had her end-of-treatment party, I had to consciously work to put on a happy face. At her last test, her viral load was still in the millions and her liver enzymes still many times above the upper limit of normal. The doctor wasn't very hopeful that she'd have success and said she was willing to finish only because Maya was tolerating the side effects so well. I was grateful at the party that we didn't have her final results yet, because I just wanted to celebrate her tenacious spirit, labs be darned. When we did pick up those final results, I've never been more shocked in my life. I was literally floored. I sat right down in the middle of the hall at the hospital. A nurse ran over and started fanning me with a paper. I truly couldn't believe my eyes. Not only was her viral load now undetectable, she was testing negative for the surface antigen AND had surface antibodies! We'd been told that the chance of that happening in a child with chronic hepatitis, was maybe 1%. The treatment Maya had isn't currently FDA approved for use in kids with Hep B. It was quite a struggle to get the insurance company to sign onto the whole thing. After an initial denial, we appealed, and thankfully they reversed their decision. Since there weren't other kids' getting this treatment, I think it was a learning experience for everyone involved. I'm so thankful that we had a doctor willing to look outside the box. Now, I've heard there's a pediatric trial in the works for PEG interferon in kids with Hep B. I'm not surprised that our little girl is a pioneer. She's got that pioneer spirit about her! Oh, and you mentioned your daughter sharing the video....Maya's doctor may beat her to it. She called the other day and said she was going to share it with the residents there at UW. I think Children's Hospital should be proud! Thank you for sharing Maya's story. It's funny how when Maya had her end-of-treatment party, I had to consciously work to put on a happy face. At her last test, her viral load was still in the millions and her liver enzymes still many times above the upper limit of normal. The doctor wasn't very hopeful that she'd have success and said she was willing to finish only because Maya was tolerating the side effects so well. I was grateful at the party that we didn't have her final results yet, because I just wanted to celebrate her tenacious spirit, labs be darned. When we did pick up those final results, I've never been more shocked in my life. I was literally floored. I sat right down in the middle of the hall at the hospital. A nurse ran over and started fanning me with a paper. I truly couldn't believe my eyes. Not only was her viral load now undetectable, she was testing negative for the surface antigen AND had surface antibodies! We'd been told that the chance of that happening in a child with chronic hepatitis, was maybe 1%.

The treatment Maya had isn't currently FDA approved for use in kids with Hep B. It was quite a struggle to get the insurance company to sign onto the whole thing. After an initial denial, we appealed, and thankfully they reversed their decision. Since there weren't other kids' getting this treatment, I think it was a learning experience for everyone involved. I'm so thankful that we had a doctor willing to look outside the box. Now, I've heard there's a pediatric trial in the works for PEG interferon in kids with Hep B. I'm not surprised that our little girl is a pioneer. She's got that pioneer spirit about her!

Oh, and you mentioned your daughter sharing the video….Maya's doctor may beat her to it. She called the other day and said she was going to share it with the residents there at UW. I think Children's Hospital should be proud!

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