check out our feed on youtube.com! http://www.youtube.com/user/sashalyn we add videos here all of the time- including videos of the dance party from Sophia's second birthday! watch and enjoy watching Sophie grow up and grow strong!!!

As I am updating the front page of the site, I wanted to leave this here as background for folks that might be new to Sophie's story... This was originally written about a year ago! As many of you know, Sophia was born nearly a year ago with some unexpected complications. Her dehydration and low muscle tone were discovered to be products of a rare genetic disorder called Prader-Willi Syndrome. Do yourself a favor, and don't look it up. What you find will needlessly horrify you. You may or may not know that Sophia spent the first two weeks of her life in the Neonatal Intensive Care Unit at Lutheran General Hospital, to the tune of nearly a half a million dollars. What you need to know is that Sophia still struggles with a variety of issues relating to this disorder and, particularly, to her hypotonia (or low muscle tone). For the first months of her life, Sophia ate exclusively through a nasogastric tube, which was replaced in October with a more permanent g-tube (the placement of that tube was her first surgery). Today, while Sophia still gets most of her hydration through her tube, she gets more than half of her nutrients from solid foods that she is safe to take orally, just like any other baby her age. She is slowly transitioning from dependence on her tube to being tube free, which we are really excited about! Sophie gets a shot of Genotropin every night, which is a human growth hormone, that helps her to grow and build the lean muscle mass she wouldn't have otherwise. She will need this medicine every day for the rest of her life. These medicines are WORKING, as we have a wiggly, rolly baby on our hands these days! She also has to take a small dose of Prevacid daily, to combat reflux. Sophia gets all kinds of therapy to work on helping her grow and develop as she should. She is increasing her speech therapy from one day a week to two, has physical therapy twice a week, occupational therapy once a week, developmental therapy twice a month, vision therapy twice a month, and sees a nutritionist once a month. This keeps Sophia (and me) very busy! Sophia works really hard, every day, to make the kinds of gains other kids just make naturally. I couldn't be more proud of her if I tried, and she inspires me to work hard each day to be the best mom I can be to her. If she can do it, then I can, too. On April 8, Sophia underwent eye surgery to correct her congenital esotropia (or wonky eye, as I like to call it), and she was fitted for a DOC-band (or baby helmet) on April 13. The eye surgery shortened the short muscles on the insides of her eyes so that her eyes point in the same direction, and she should be able to see through them both at the same time! (We will know more about the actual visual impact her surgery had on her sight in a few weeks. There is still some slight crossing of her eyes, but we are hoping that this is just her eyes getting used to their new positions.) Her helmet will help her skull to grow into a more symmetrical shape, hopefully helping us to avoid future vision, ear and jaw problems. I share with you all of this information to let you know what we are doing and to let you know that we are accepting help. The first thing that you can do is sign up as a member of Sophia's team. That way, as we come up with new ways that folks can help, you will be kept in the loop. Secondly, you can sign the guestbook. It is important to us to know that there is a community of supportive folks that surround us, as we go through the tough times. Thirdly, you can get creative. Brainstorm ideas on how to help and post them here. Even if you can't make it happen personally, there might be someone else in the group that can pick them up and run with them. For example, our friend Tricky has generously offered to link us to her blog. What a great idea! Finally, if you have funds to give, or need a worthy benefactor for your next fundraiser, look no further. Sophia's medical bills are continuing to pile up and we are far behind in our ability to pay them. We are blessed with hundreds of wonderful friends and know that if you cannot help now, you will when you can, in the way that you can. We plan to continue to keep you up to date with Sophia's progress here on our blog, and thank you so very much for all of your thoughts and prayers. We are grateful for each and every one of them. Without them, I don't think our family would have made it through these very difficult almost eleven months as well as we have.

How funny is it that Sophia was born on May 1, and May is National Prader-Willi Syndrome Awareness Month? Boy- were we made aware! In honor of Sophia's birthday, we would ask that you do something to raise awareness about this life altering syndrome- in whatever way makes sense for you. Sharing our website with others, making Team Sophie your featured cause on your Facebook page for the month, making your child's school/daycare aware that using food as rewards is not healthy (even for kids without PWS!), or making a small donation to Sophia's medical fund or the National PWS website. Anything that you do will be appreciated! Rep. Royce Introduces Resolution Concerning National Prader-Willi Syndrome Awareness Month US Fed News Service, Including US State News. Washington, D.C.: Feb 28, 2009. WASHINGTON, Feb. 28 -- Rep. Ed Royce, R-California, has introduced a resolution (H.Res. 55) "expressing support for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research into this challenging disorder." The resolution, introduced on Jan. 13, was co-sponsored by Rep. Jane Harman, D-California. It was referred to the House Energy and Commerce Committee. A copy of the full-text of the legislation follows: H.Res. 55 Expressing support for the designation of a National Prader-Willi Syndrome Awareness Month to raise awareness of and promote research into this challenging disorder. Whereas Prader-Willi syndrome is a complex genetic disorder that occurs in approximately 1 out of every 15,000 births, and is the most commonly known genetic cause of life-threatening obesity; Whereas Prader-Willi syndrome affects males and females with equal frequency and affects all races and ethnicities; Whereas Prader-Willi syndrome causes an extreme and insatiable appetite, often resulting in morbid obesity, which is the major cause of death for individuals with the syndrome; Whereas Prader-Willi syndrome also causes cognitive and learning disabilities, and behavioral difficulties, such as obsessive-compulsive disorder and difficulty controlling emotions; Whereas the hunger, metabolic, and behavioral characteristics of Prader-Willi syndrome force affected individuals to require constant and lifelong supervision in a controlled environment; Whereas studies have shown that there is a high morbidity and mortality rate for individuals with Prader-Willi syndrome; Whereas there is no known cure for Prader-Willi syndrome; Whereas early diagnosis of Prader-Willi syndrome allows families to access treatment, intervention services, and support from health professionals, advocacy organizations, and other families who are dealing with the syndrome; Whereas recently discovered treatments, such as human growth hormone, are improving the quality of life for individuals with the syndrome and offer new hope to families, but many difficult symptoms associated with Prader-Willi syndrome remain untreated; Whereas increased research into Prader-Willi syndrome can lead to a better understanding of the disorder, more effective treatments, and an eventual cure for Prader-Willi syndrome; Whereas increased research into Prader-Willi syndrome is likely to improve our understanding of common public health concerns, including childhood obesity and mental health; and Whereas advocacy organizations have designated May as Prader-Willi Syndrome Awareness Month: Now, therefore, be it Resolved, That the House of Representatives-- (1) supports raising awareness and educating the public about Prader-Willi syndrome; (2) applauds the efforts of advocates and organizations that encourage awareness, promote research, and provide education, support, and hope to those impacted by Prader-Willi syndrome; (3) recognizes the commitment of parents, families, researchers, health professionals, and others dedicated to finding an effective treatment and eventual cure for Prader-Willi syndrome; (4) supports increased funding for research into the causes, treatment, and cure for Prader-Willi syndrome; and (5) expresses support for the designation of a National Prader-Willi Syndrome Awareness Month.

Tomorrow, at 6:30 am, we are to report to Children's Memorial Hospital for Sophia's eye surgery. Surgery is planned for 7:45 am. I will be updating live on Facebook (via Twitter), but will also post here just as soon as I am able, to let folks know how things went. After the pre-surgical consult, the doctor is no longer thinking we can FIX Sophia's esotropia, but he is confident that the surgical intervention will improve it. I suppose photos (to follow) will tell the tale.
As always, thank you all for your support. Keep sending those positive thoughts, vibes, and prayers our way. We are going to need them!

There aren't even words to express my gratitude to the alumni members of Sigma Lambda Sigma who so generously gave to our family on Saturday night. I always used to sign my emails with a quote by Margaret Mead, about a small group of people making big change... but I am amazed to announce that that small group of people donated $750 to our family for Sophia's medical bills. That one evening's worth of giving will cover Sophia's therapy for one whole year. Thank you so much- all of you- and especially Melissa Roeder and Cristina Mugrage for putting on this 50/50 raffle and making such a big difference for our family. We are in awe of your willingness to give to our little family! Also- since this website was created, private donors have contributed $420 to our fund! That money will go to pay the bill for Sophia's heart and lung monitor use for the month of January, which was a whopping $400! We appreciate you helping us to make sure our baby didn't stop breathing during the night, and alarming us when she did! You're the best! If you want to give to the other mountain of medical bills still outstanding, you can do so here at the "Make a Donation" tab. We are also brainstorming a ton of new ideas for fundraisers... a poker night, a benefit concert, a silent auction, a dinner/dance. If you would like to be a part of any of these events, sign the guestbook and volunteer to take something on! This group has amazing resources- let's use them to the fullest. Thanks again, to everyone for your help. Without you, this would be so much harder than it is.