June 23, 2010
by marfmom
10 Comments
I can’t believe how fast 3 years has gone by! It also seems like a lot longer, but I suppose that’s because we’ve been together almost 7 years now. I am so grateful for a husband who is truly a partner, who does everything he can to support me, and who relishes his role as father. Here’s to many more, Love!
June 21, 2010
by marfmom
2 Comments
Today is a day for a short post. It’s one AM and I’m just sitting down to write after indulging in too many (excellent) conversations on Facebook and Twitter.
I wanted to just take a minute to make sure people are aware of the social networking site NMF Connect. I know some of my readers have found their way here before other NMF resources.
A little over a year ago, the National Marfan Foundation launched an interactive site for patients, their families, and even providers to use as a means to connect and share information. It’s something that some of us had been begging for since, uh, we were teenagers ourselves.
NMF Connect operates a little like Facebook. You can create a profile and join groups for people of related interests. However, there’s also a main forum for general questions, a place to host your own blog, and a group chat window (as opposed to some sites that allow only 1:1 chatting).
I absolutely love it! If I have a very specific medical question of course I still contact my doctor or the NMF’s nurse, Amy Kaplan, but NMF Connect has been ideal for those kinds of questions that doctors really can’t answer. I started a group for women who are parents or are contemplating pregnancy to be able to discuss their options, and another for patients of dural ectasia to share how they handle the pain. Other groups include regional sites, a group for parents who have lost a child to Marfan, one for international patients, and several for related disorders. There are over 70!
This has been a way for me to connect with fellow Marfs from all over the world. I’ve gained insights I wouldn’t have otherwise. The site has also been a really great way to bring the teenagers together in a way they haven’t been before. I’ve seen it provide them with an emotional outlet, as well as leadership opportunities as they share their stories with others.
If you, a loved one, or even a patient has Marfan or a related disorder, I recommend that you check it out!
* I was not asked to write this post or in any way compensated for it. I just really like the website.
And, please don’t forget to enter the Etsy purse giveaway!
June 20, 2010
by marfmom
33 Comments
Today marks the 2nd anniversary of my blog! To celebrate, I’ve got a neat giveaway for all of you!
I have been a big fan of Veronica’s work since I was pregnant for Menininho, when she made me a beautiful bib (her daughter is one of my best friends). The bibs I have received as gifts from her over the past two years are almost too beautiful to use, don’t you think?
So, when she contacted me about doing a giveaway to kick-off the opening of her new Etsy Shop, Bert and Peggy, I was excited! The store has all kinds of fun items, from bird feeders out of porcelain cups to purses to a watermelon bird house. Veronica is known for her passion for rescue animals and that love fuels her work, such that many items are animal-themed. I believe baby bibs are getting added soon!
Veronica gave me a purse to review and I love it! It’s sturdy canvas with soft handles: cute and fun for a casual girls’ night out. It’s also the perfect size to toss in a packet of wipes and a couple of diapers for a short day trip so I don’t need to lug around the whole diaper bag.
And guess what? I’ve been given the same purse to give away to one of you!
Wondering how to win? I’m keeping it easy!
Mandatory entry (do this first): Go check out Bert and Peggy and let me know one other specific item that you like.
Optional entry: Send a tweet about this giveaway (once per day) and make sure to leave the link to the tweet as a comment. If you don’t have Twitter you may make a Facebook status and leave a link to that here, but not both.
Make sure that you leave a SEPARATE comment for each entry! I’ll be choosing a winner via a random number generator.
Giveaway is open to US residents only. It ends Sun. June 27th at 11:59 pm. Winner will be emailed and announced on the blog June 28th. Winner will have 48 hours to respond or a new winner will be chosen.
* I received no compensation for this giveaway beyond a purse to review and a purse to give away.