I've got all sorts of odds and ends to cover in this post! Noah is doing OK. As expected, his EEG did not show any seizure activity.
That's not necessarily great news. Noah is showing very significant changes that *seem* neurological. They could be related to seizures, to apnea, to brain deterioration, or to other unspecified "disease progression." The best possible outcome here would be to identify the problem and have it be a problem that can be treated in such a way that it improves his quality of life.
The big question now is which testing to pursue and in what order. Seizures are still a possibility, and while seizures would be awful news, there is the possibility of treating them. Apnea would also be awful news but would also be treatable. The other ideas being kicked around are awful but not treatable. At this point we may be looking at a 72 hr EEG with apnea monitoring which would kill 2 birds with one stone, an expedited sleep study (he's scheduled for one in October but our ped does not feel that we can possibly wait that long), brain imaging, etc. I had a long talk with our pediatrician who is fully in line with our constant balancing act of doing things "for" Noah versus doing things "to" Noah. On the face of it, brain imaging would be doing something "to" Noah in the sense that it wouldn't show anything we could treat. On the other hand, it could be useful in the sense that it would allow us to avoid further testing and would allow us to come to terms with these changes.
Right now we really are just plugging along and we know that we will hear from our pediatrician once he and our neurologist have agreed on a plan of attack. We'll go with their recommendations with the understanding that nothing is to get in the way of our boy's birthday party on the 10th!!
While these changes are very, very hard to see, Noah is still sweet, loving, and happy when he's awake. He might not be awake for very long each day, but he wrings every drop of joy out of his waking hours and is as playful as ever. He is getting VERY excited about his birthday as are we all.
We have a LOT going on in terms of people doing things for Noah. I know not everyone is on FB and decided to list everything here in one place.
1. As I stated in an earlier post, the friend who is doing the fundraiser for our bus has ended the Fundrazr one and we are instead using YouCaring to avoid Fundrazr's 5% fee. We cannot post individual thank-you's on this new page but want everyone to know how INCREDIBLY thankful we are for everyone who has helped. If you click the widget in my sidebar, you'll be taken to the YouCaring page (http://www.youcaring.com/medical-fundraiser/wheels-for-the-estes-family/74584) where you can share on FB or Twitter or even grab the code for a widget for your own blog.
2. The same friend is doing a Facebook auction, the proceeds of which will also be going to the YouCaring fundraiser. I'm afraid there is no way to bid if you aren't on FB, but anyone can donate. She has set up a Facebook event for information here: https://www.facebook.com/events/624522874247396/ . Basically if you have an item you'd like to donate, please email Krista at kristaroo (at) knology.net with a photo, description, suggested retail value, and suggested starting bid. Donors will be responsible to ship items directly to the winners. Gift cards are WONDERFUL for this kind of auction as they always go over very, very well and are easy/inexpensive to ship. Even low-denomination cards to restaurants, online shopping like Amazon, iTunes, Starbucks, stores, gas stations, etc. can bring in surprisingly large bids.
3. Another friend is doing a "card shower" for Noah's birthday. Again, there is a Facebook event https://www.facebook.com/events/128551447354008/, but the details are pretty straightforward of course - she's just looking to have Noah flooded with cards for his birthday. A mailing address you can use is in the "Want to send mail to Noah?" tab at the top of this page. His birthday is August 10th and he will be a whopping 7 years old!!!!!
Both the auction event and the card event are public, which means if you are on FB you can invite friends to easily spread the word, but of course you don't need to be on FB to share. We appreciate the kindness of our friends Krista and Marsha so very much!!
4. If you are local and would like to come by to wish Noah a happy birthday, please feel free to do so on Saturday, August 10th between 12:30 and 2:30. He's having a Lego party with friends in the morning and will be asleep by 3:00, but I know he would LOVE to see visitors that day so please do so if you are in the area. There is truly nothing Noah loves more than to to have visitors, so consider our doors to be open that day from 12:30 to 2:30 for anyone who would like to drop by.
5. I've had some questions about comments now that the blog is changed. Yes, you can still comment and the commenting system has not been changed. Comments are moderated so they will not show up right away. If you get the blog in email form and reply, I will get your comment. I may not always be able to answer, but I will see it. :-)
Thank you for sticking with all of this "business." We will never be able to say how much we appreciate the support of everyone who prays for us, ministers to us, and encourages us.
Blessings,
Kate
