Saturday, July 28, 2007

Preparation

I know, I know - I haven't posted anything in a week. :( Well, we've been planning a big B'day party for Emily tomorrow, 7/29. Over 100 people are planning to attend, so we've been busy preparing all week... to say the least. How neat is that?!?! Over 100 people!!!

This is such a tremendous blessing to be able to host some of the hundreds of people that have kept Emily and our family in their thoughts and prayers. This will be a great day to honor Emily and her life.

Emily has been doing great. The van is a continued blessing as we needed to make two trips to the Docs office and it went so smoothly. We actually WANT to go places now and we even took her to a local lake front where they have live music last Sun. She LOVED it and we felt comfortable and prepared to make the trip. WOW - what a change from just a few weeks ago!!

Anyway, until my next post, we hope that all is well with you.

Peace <+><

Sunday, July 15, 2007

7/15: Emily is 2!!!

We knew she could make it,
but it had to prove true,
Emily has turned 2!!

What an exciting day it is! Our little Emily Hope has reached an incredible milestone for a child with Spinal Muscular Atrophy (SMA). It is estimated that 50% of kids affected by SMA will die before their second birthday. In a small way, Emily's life is showing the world, and the medical community, that SMA kids CAN have a good quality life. With good care, and properly educated doctors and parents, our kids CAN live to 2 years and beyond. With proper nutrition and respiratory care our kids CAN return home from Emergency Room visits happy and healthy. With proper care at home our kids CAN prolong the need for hospital stays, intubation, and ultimately, an untimely death... at least for a time. This care is rigorous and tiring, but their beautiful lives are worth the effort in our opinion.

Thank you all for the support you have given us - it enables us to continue giving Emily the level of care we are compelled to uphold. It has given her the opportunity to experience more of the lovely things - and it has given others the opportunity to experience a different, but rich side of life.

Thank you!

Peace <+>< Nate

Friday, July 13, 2007

It has arrived!! The van of course...

We now have a wheelchair accessible van!!! I never pictured myself in one of these - but now I don't have to. :) What a blessing. As soon as Emily is feeling better we are OFF on some new adventures... WITH HER. We are overwhelmed at the generosity that has made Emily's van a reality. We hope to visit as many of you as is possible in the very near future so you too an experience Emily in the flesh. :)

I'll get some new pics up when I get a chance.

Peace <+>< Nate

Tuesday, July 10, 2007

Coming at the end of the week :)

Well, Lord willing, this is the week that we will get our van. We are incredibly blessed to have raised $18,544.27 towards Emily's van and it is so exciting to think that we will be able to take Emily with us when we go out. It has been a very long time since we've been out as a family.

I just wanted to get that update out - I am actually very, very tired - so I am going to go and relax now. As always, thanks for reading and please keep Emily in your prayers. She has spiked some high fevers and her O2 saturation has been dropping quite a bit.

Peace <+><

Thursday, July 05, 2007

The Van

Okey-dokey. We've come a long way in a very short amount of time! With contributions outside of what can be seen on this site we have raised $18,450 towards Emily's van! We still owe on the mini-van, even though it is totaled, but will also count in the total loss money if worst comes to worst. That would bring the total to $25,150!! Thank you so much for your care and concern for Emily and our family. Most of you will no doubt be seeing MUCH more of her from now on. :)

The other news is that we've decided on a van!! We are purchasing a used wheelchair accessible Ford E-150 Conversion Van from Rollx Vans. I have been really impressed with this company b/c they have been MORE than helpful. Marty has spent hours on the phone with me talking through all our needs and helping me decide what will work. I am confident that this van will suite our needs well. We are not quite to the point where the total cost of the van and other modifications for Emily are covered, but we are well on our way and will not have to pay until next week. That is about as long as we can wait for a vehicle though. As always, we are well cared for and feel that moving forward with this purchase is the right thing to do. :) Thank you sooo much for your part in making this a reality for Emily!!!

Here are some pics of the van we are purchasing --



Peace <+>< Nate