Saturday, February 21, 2009

Washington Bound ..

Hi Everyone! I thought I would post a start to our Washington Trip. I will be hitting the road Sunday morning with my two girls in tow. We're headed to Capitol Hill Day!

Carly and I have already met with Reps. Jim Gerlach, (R-Pa.-6th) several months ago. He is a sponsor of the PPARCCA, which was reintroduced to the House of Representatives last week. For more information visit: http://www.psoriasis.org/news/press/2009/090210_pparcca.php

I hope there will be more kids to meet in Washington and I wish you all were going to be there with us!

Saturday, February 14, 2009

New to this blog : )

Hello,

I am a mother of a recently diagnosed six year old Olivia. I was told about this blog by the Health Educator for the National Psoriasis Foundation. I am so grateful that I found it. My husband and I are trying to create an environment that is conducive to Olivia's Psoriasis. Right away I noticed the importance of not treating Olivia any different because of this disease. She seams to be adjusting just fine actually.
We have started her on some Vit. Supplements. She is taking Vit. D3 and Fish oil chews, as well as daily Calcium to boost the immune system. I have no idea if these will help in the long run, but they couldn't hurt. We have also been experimenting with a wheat free diet. We purchased a bread machine; which is something we have wanted to do anyways, and are baking our own Gluten Free bread, and using that for her sandwiches.
So along with the diet changes we noticed that swimming and soaking in the tub help. We have put sea salts in her bath. We also are members of the YMCA locally, and Olivia loves to swim. I have always wanted to do Yoga as well, so we are maybe going to check that out together to promote stress relief. So while we have been prompted to explore a healthier life by Olivia's new condition, we are all benefiting from the healthy life changes as a family as well.
So along with diet and exercise we have been using topical creams given to us by our Dermatologist. They seem to be helping. However Olivia has began to get P really bad on her scalp recently, so we have started to use a serum from the Derm. that has been helping. We also purchased some Tar shampoo, I would welcome any one's views on that.
So far in school Olivia seams to be doing fine. She has stated that there are older kids who run away from her and say that she is contagious. I was sent some awesome Psoriasis cards, and a form for caregivers that is informative to explain to the kids what Psoriasis is. The Health Educator who e-mailed me is also going to send me a kit so I can present to Olivia's class what she has, and maybe all the classes that she has contact with. She is in a great school, and they have a community focus, so Olivia mingles with all the grades in her community room.
So far, while it has been really overwhelming, I have felt blessed to have found so much great information. I am also very grateful for this blog, and being able to show Olivia pictures of kids that are like her, living happy and free.

Thank you so much to whomever started this blog and all who contribute. It is a blessing to our family : )

Sarah and Olivia in Wisconsin

We need your input!!

I spoke with Nicora Gardner (NPF) the other day about this summer's NPF conference. The conference will be in San Antonio and as a Texas family we are thrilled! I think I will be bringing the whole family this year, even though it is still a good 9 hour drive (Texas is huge!!) I sure hope everyone will try and attend, Jake and I had a fabulous time last year getting to know everyone and having so many experts to address our concerns and questions too. As much fun as last year was, I think this year can be even better!! I would love to hear from you about some of your ideas for the upcoming conference. I know Nicora will be reading your ideas as well so here is your chance to let the NPF know what you and your kids would like to see happen this year.

I personally think it would be a ton of fun to have the kids track have a "summer camp" feel to it. I think Jake benefited the most from the bonds of friendship he experienced with kids like him. I like the idea of crafts, swimming, games, and maybe even a field trip to one of the many kid centered activities in the San Antonio area. Jake's biggest and best memories came from just hanging out with kids who also live with psoriasis.

What do you all think? What did your kids benefit from the most? Please post your ideas for this summer so that the Foundation can start planning things for our kids.

Thanks!!