Saturday, April 22, 2006

Medicine, Medicine, Medicine!!

Oh my goodness! How could I have forgotten?? On our visit to UT we were given another 3 months supply of Emily's Medicine!! That means we have about 5.5-6 months of medicine that we will not have to pay for. What a blessing!! God continues to show us His provisions!

Friday, April 21, 2006

Back from Utah + God

Dear Friends and Family,
We are back from Utah and we had a great visit. It was the normal routine, but this time in particular was very nice. We were put up in a hotel b/c there was "no more room in the inn." Even though there was no immaculately conceived baby born in that provided resting place, it was nice to be alone with each other and Emily. We walked around SLC quite a bit and had a great time talking and doing that mushy stuff that married people do. We don't usually get a chance to act like that, so it was fun. :)

Everyone was happy to see us b/c they are very interested in seeing how Emily has been holding up. We have weathered two chest colds since we last saw them and Emily is making some motions that she was not last time we were there. She was VERY tired the entire day she was getting poked, prodded, electrified, therapized, phlebotomized, and DEXAcized. It was a busy day!

I thought to myself, in my prayerful way, how God was going to use us at this hotel. No sooner had I asked than three excited kids ran up to gaze as Emily...

I'll continue this and another story in my next post. Cheers, Nate

Tuesday, April 18, 2006

Going to UT

So we are getting things together for our trip to Utah this coming week. We were supposed to have made the trip a couple of weeks ago, but Emily was sick and Annabelle ended up going to the ER for some respiratory issues that lasted a couple of days. Everyone is doing well now and that is a relief.

We are still figuring out what will happen with Emily's medicine b/c about mid-June the free stuff will run out. Sometime before then we will have to purchase a new bottle, or stop giving it to her. I have mentioned in previous posts what would happen if we stopped giving her medicine, it is not good.

Monday, April 10, 2006


Families of SMA has partnered with to raise money for FSMA. On Wednesday, April 5, 2006 FSMA was the featured charity of the day. is a search engine, like Google. The site is powered by Yahoo!, so you'll get the same quality search results that you're used to. What's unique is that they have developed a way to direct money to FSMA with every click.
The more people who use this site, the more money will go to research. If 1,500 people search only twice a day that will equal over $10,000 a year for FSMA. Just from searching the Internet. There is no limit.. the more searches, the larger the donation.
So please spread the word to your friends and family. It doesn't matter where you live - anyone can help! Put FSMA in the "I'm supporting" box and get clicking!!!

(Families of Spinal Muscular Atrophy - National Office Libertyville)
Families of SMA