Comments for Hayden's Journey - Living with Wiskott-Aldrich Syndrome by Rick & Kami Blatter - Sun Prairie, WI http://www.haydenblatter.org/blog Hayden's Journey - Living with Wiskott-Aldrich Syndrome by Rick & Kami Blatter - Sun Prairie, WI Sun, 20 May 2012 06:32:58 +0000 http://wordpress.org/?v=2.3.3 Comment on 100% engraftment! by Derek http://www.haydenblatter.org/blog/index.php/2008/08/29/100-engraftment/#comment-549 Derek Thu, 29 Jul 2010 22:29:35 +0000 http://www.haydenblatter.org/blog/index.php/2008/08/29/100-engraftment/#comment-549 I know this a bit late, and from a stranger no less, but congrats! My son went the bone marrow route, and was successful. He had the bonemarrow transplant at 18months old. We had some small setbacks (the bone marrow started attacking the red blood cells) but after a few rounds with chemo (drugs, no radiation) he now has a normal immune system! I think we did ivig for an additional 18 months after the transplant. We were able to do them at home with the Hickman line. We kept him away from kids (and sick adults) untill he was 6 (he was home schooled, as the teachers from the school came to us) But January of 2009 he entered public school and is doing good! I am glad to hear the stem cell transplant worked. We were given that option in new york, but decided to go the bonemarrow route from the advice of Dr hanns Ochs (person who invented the test for was) I know this a bit late, and from a stranger no less, but congrats!

My son went the bone marrow route, and was successful. He had the bonemarrow transplant at 18months old. We had some small setbacks (the bone marrow started attacking the red blood cells) but after a few rounds with chemo (drugs, no radiation) he now has a normal immune system!

I think we did ivig for an additional 18 months after the transplant. We were able to do them at home with the Hickman line.

We kept him away from kids (and sick adults) untill he was 6 (he was home schooled, as the teachers from the school came to us)

But January of 2009 he entered public school and is doing good!

I am glad to hear the stem cell transplant worked. We were given that option in new york, but decided to go the bonemarrow route from the advice of Dr hanns Ochs (person who invented the test for was)

]]> Comment on The hickman is otta here! by shashankgupta225 http://www.haydenblatter.org/blog/index.php/2009/02/18/the-hickman-is-otta-here/#comment-499 shashankgupta225 Fri, 19 Feb 2010 21:03:52 +0000 http://www.haydenblatter.org/blog/index.php/2009/02/18/the-hickman-is-otta-here/#comment-499 Here is a link to more information about the genetics of Wiskott-Aldrich Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Wiskott-Aldrich_Syndrome/741. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA Here is a link to more information about the genetics of Wiskott-Aldrich Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Wiskott-Aldrich_Syndrome/741. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

]]> Comment on 1 Year Transplant Anniversary right around the corner! by bee http://www.haydenblatter.org/blog/index.php/2009/06/30/1-year-transplant-anniversary-right-around-the-corner/#comment-308 bee Wed, 01 Jul 2009 10:26:38 +0000 http://www.haydenblatter.org/blog/index.php/2009/06/30/1-year-transplant-anniversary-right-around-the-corner/#comment-308 One Year! WOW! Congratulations...here's hoping all Tuesday's appointments have great news to report. xx One Year! WOW! Congratulations…here’s hoping all Tuesday’s appointments have great news to report. xx

]]> Comment on No news is good news! by PaigeWelborn http://www.haydenblatter.org/blog/index.php/2009/06/02/no-news-is-good-news-2/#comment-281 PaigeWelborn Wed, 10 Jun 2009 20:25:54 +0000 http://www.haydenblatter.org/blog/index.php/2009/06/02/no-news-is-good-news-2/#comment-281 All awesome stuff, Kami! I SO can't wait until I can write similar things about Ayden!!! I love reading your blog because it gives me so much hope! :-D All awesome stuff, Kami! I SO can’t wait until I can write similar things about Ayden!!! I love reading your blog because it gives me so much hope! :-D

]]> Comment on Isolation is lifted! by Shayna Courtier http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-250 Shayna Courtier Fri, 27 Mar 2009 20:27:46 +0000 http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-250 This is excellent news! I look forward to finally see the little guy tomorrow! This is excellent news! I look forward to finally see the little guy tomorrow!

]]> Comment on Isolation is lifted! by ostrengaj http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-249 ostrengaj Fri, 20 Mar 2009 14:17:48 +0000 http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-249 Awesome news on the isolation lift!!!! Awesome news on the isolation lift!!!!

]]> Comment on Isolation is lifted! by PaigeWelborn http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-248 PaigeWelborn Fri, 20 Mar 2009 00:40:56 +0000 http://www.haydenblatter.org/blog/index.php/2009/03/19/isolation-is-lifted/#comment-248 That is AWESOME, Kami! I'm so glad to hear that! He can finally go run and play outside like a normal little boy. He must not know what to do with all the new stuff! :-) That is AWESOME, Kami! I’m so glad to hear that! He can finally go run and play outside like a normal little boy. He must not know what to do with all the new stuff! :-)

]]> Comment on Update for this week! by PaigeWelborn http://www.haydenblatter.org/blog/index.php/2009/02/27/update-for-this-week/#comment-237 PaigeWelborn Fri, 06 Mar 2009 09:02:39 +0000 http://www.haydenblatter.org/blog/index.php/2009/02/27/update-for-this-week/#comment-237 Wow, I don't know how you'll do it in 20 - 25 minutes! That's really awesome, though. I figure the more people who know about WAS, the better, right? Any luck with Oprah? :-D Wow, I don’t know how you’ll do it in 20 - 25 minutes! That’s really awesome, though. I figure the more people who know about WAS, the better, right? Any luck with Oprah? :-D

]]> Comment on Update for this week! by BobMahoney http://www.haydenblatter.org/blog/index.php/2009/02/27/update-for-this-week/#comment-235 BobMahoney Tue, 03 Mar 2009 22:23:46 +0000 http://www.haydenblatter.org/blog/index.php/2009/02/27/update-for-this-week/#comment-235 Great to see that Hayden continues to heal and that his new immune system is growing into its job. Good luck with your talk; you should be able to inspire many to do what they can to help out. Warmest regards, Bob Great to see that Hayden continues to heal and that his new immune system is growing into its job.

Good luck with your talk; you should be able to inspire many to do what they can to help out.

Warmest regards,

Bob

]]> Comment on The hickman is otta here! by PaigeWelborn http://www.haydenblatter.org/blog/index.php/2009/02/18/the-hickman-is-otta-here/#comment-208 PaigeWelborn Wed, 18 Feb 2009 21:48:41 +0000 http://www.haydenblatter.org/blog/index.php/2009/02/18/the-hickman-is-otta-here/#comment-208 Awesome! I know he doesn't really know the difference, but I'm sure y'all are relieved. It is SO hard to keep little kids occupied without food! I've only had to do it once so far, but I'll have to do it again on March 9 for Ayden's Infant PFTs. NOT looking forward to that. So glad to hear everything went well! Awesome! I know he doesn’t really know the difference, but I’m sure y’all are relieved. It is SO hard to keep little kids occupied without food! I’ve only had to do it once so far, but I’ll have to do it again on March 9 for Ayden’s Infant PFTs. NOT looking forward to that. So glad to hear everything went well!

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