Monday, November 28, 2016

Prayers Please!

Hey all! Tomorrow, we take Isaac down to the hospital for his first injection.  It's exciting, but I'm also nervous.  I'm nervous because our son is getting a lumbar puncture and a spinal injection and we are asking doctors to do that to him.  Jeremiah and I are excited, but tonight at the Crane house it's business as usual. We take pretty much everything a day at a time- schedules, finances, plans- and this huge deal of an experimental treatment for SMA isn't much different.  But tomorrow is a day that we never saw coming, that we never expected, and that we only vaguely and remotely hoped would come.

Please, say a prayer tonight or tomorrow for Isaac and for the doctors and researchers involved in this treatment.  Please pray that the injection goes smoothly, that Isaac doesn't have any pain from it, that he sleeps well tomorrow night, and that the treatment begins to work in whatever small and meaningful way it can.

Happy Advent!

Friday, November 11, 2016

It's Treatment Time!


Hey all!  We are excited to announce that we have a date for Isaac's first treatment!  On November 29th, we head down to Children's Hospital for the first injection. He will have another injection mid-December, and a third at the end of December.  We are filled with hope and excitement, knowing that this treatment could help Isaac maintain his strength, and eventually gain some strength.  We had been warned that the full cost associated with the injections for one year could be $70-90,000, and we have started some serious fundraising efforts.

This Sunday, our friends are hosting a fundraiser and silent auction at the Quaker Steak and Lube in Westminster.  Just mention that you are there for the fundraiser, and 15% of your purchase will go toward Isaac!  Come for some delicious food, a signature cocktail (and kids' version too), bid on one of over 40 auction items, and stay for the outdoor carnival!
Here are the details:
Quaker Steak and Lube
                                                            10392 Reed Street, Westminster, CO
                                                            Sunday, November 13th, 11 am- 6pm

Our friend Linda is a Beachbody Coach, and she has generously offered to donate 50% of her commission to anyone who signs up for personal training with her if they mention Isaac.  Her website is http://www.beachbodycoach.com/esuite/home/linbear888 if you are interested in using and developing your muscles in honor of Isaac!

Our friend Kerry is running the ColderBoulder this December, in her full T-Rex costume! If you want to support the T-Rex in honor of Isaac, please donate at www.gofundme.com/agbytg and mention the T-Rex in your comments!

Some other friends are planning to host a Parents' Night Out in December, with all of the costs going to Isaac's treatment. If you want to host a fundraiser of some sort, please know that we are grateful for any and all help with these medical costs. We brainstormed a few ideas of events that you could host wherever you are in the world.  You could offer a Parent's Night Out for friends, even a small one at your house, with a suggested donation of anywhere from $20-50 per child (depending on the amount of time and activities that you plan).  You could host a wine tasting party at your house, with a suggested donation of $25-50 per person- make it as formal or informal as you like, with as many people as you see fit!  On December 11th, when Isaac turns 34 months, we are asking that anyone who is able "Work an Hour for Isaac."  You simply donate one hour of what you earn at work that day to Isaac, either through our GoFundMe page or by sending us a check written out to Isaac Crane!  If you would like to host a fundraiser or spread the word about Work an Hour for Isaac, let me know.  I will be happy to send you a flyer to use.

We have had a really good couple of months.  Jeremiah had his gall bladder removed and has felt better the past two weeks than he has in years.  Natalie loves preschool and has been very helpful around the house. Isaac is growing like crazy, and in the past month he has started using the words "uh-oh!" when he drops a toy or sees something fall, and "uh-uh" when he wants to tell us no.  We have a few meetings in the works to determine when and where he will be attending preschool (!!!), and he has recently started working with a music therapist and a massage therapist- both activities that he loves.   Our Halloween was pretty great, made all the better by this mild and sunny autumn we are having in Colorado. Natalie went as a ninja, and Isaac dressed up as Captain Barnacle from his favorite cartoon, The Octonauts, complete with a submarine costume for his stroller!  He got to ride on the zipline at speech therapy yesterday (that's Kelli, his SLP, and Jessica, nurse, in the video with him).



We want to thank everyone who donated to the silent auction this weekend! We have some truly amazing and generous items. Hope to see you there!!