If there is a good excuse for this (I'm sure I can come up with one!), its that we have had a GREAT fall. Medically, we have almost NOTHING to report on Noah (except for the fact that he has started pulling his g-tube out of his stomach and playing with/sucking on it, awesome). WHICH IS GOOD! God is continuing to heal him, and has kept him healthy. He isn't even snoring at night. I know I have totally taken this time of health and tranquility for granted. But I still praise God every day for how he continues blessed us.
Ella on the other hand has had somewhat of a rough fall. She has been sick since the beginning of October. After two rounds of ineffective antibiotics, she is finally on a higher dose of Augmentin that should kill whatever nasty bacterial infection has made home in her chest. Her lungs have remained clear throughout the whole battle, it has just revealed itself in the nastiest cough you've ever heard on such a sweet little girl! We're loading up on all sorts of probiotics, Vit D, etc. in hopes of helping her body recover from all these dang antibiotics. Please pray for her! She has been so patient and tough throughout it all, but I can tell it has really put stress on her body. It's hard not to get frustrated with her when she's so whiny, but I'm trying to give her a little grace knowing she just isn't herself. Let's pray this round of antibiotics does the trick and we can start the new year fresh and healthy!
Like I said, Noah is doing awesome! Children's marketing and guilds departments have asked Noah to participate in several different projects for them this fall, which has blessed our family! After the Covey Run Ambassador, Noah was asked to be a featured patient for the Seattle Festival of Trees, which means they have 20 Christmas Trees that are decorated by designers and put on display for purchase or auction at the Fairmount Olympic Hotel in downtown Seattle. Each tree is assigned a patient, and Noah's picture and story was on display next to his tree. It was a beautiful event that we were able to be a part of for the initial tree lighting in November; they even put us up in a room for the night to enjoy it all! You can see his little story that was next to his tree here (scroll down a ways and you'll see him).
Then they asked if they could use Noah's story on their "holiday mailing", which is one of those fundraising letters you get in the mail asking for support for different non-profit organizations. With this project, they sent a professional photographer and one of Children's marketing peeps out to little ole Wenatchee to take pictures of our family! We were a little bummed because Noah was pretty grumpy for the shoot, but they did manage to get a few good ones!
Since then they have asked us to use Noah for Guild Newsletters, and most recently have asked to do another photo shoot with his doctors for ads that will run in the Seattle Times, Wall Street Journal, Puget Sound Business Journal, and local parenting magazines. Noah's a little celebrity in the pediatric medical field here in the PNW! :)After while I started to get hesitant to keep saying yes when they'd ask to use his story. We are honored of course, and think its pretty cool they want to feature Noah, but there are just soooo many families out there, it seems like they could spread it around to make other families and kids feel special? But then, I guess I've come to the conclusion that Noah's story is pretty stinkin' special, and I know that... it touches people. He looks different. And I think a lot of sick kids look pretty "normal". But when they see someone with a special neck and face like Noah, it pulls at their heartstrings and they want to know more. So if this gets people to give to Children's hospital, that's a good thing. And most importantly, if somehow God can use this for His glory, which I believe He is, then Noah's story must be told. THIS is a modern-day miracle.
I thought I already blogged on this, but I went back through the archives and couldn't find anything so I must've not?! I just want to mention that we are a little bit concerned about Noah's development. I think I've hesitated to blog about this because we don't really know for sure if its something to worry about. But here's the skinny.
We expect that Noah's speech will be delayed, and that when he does start learning to talk, he may have some problems because of all the trauma in his mouth. Plus, that tongue is just a monster! Having a big tongue would definitely make it hard to talk. Try it. Hahahaha. It is, right!?
But we are noticing that there are some other delays. And we don't know how much of it is just because of everything he's been through; and that the focus for Noah has been survival and getting through these first couple years. It seems like in the past month things have been better, but he just has trouble listening, understanding directions, etc. And believe me, it's beyond normal almost-two-year-old behavior. :) I know boys are soooo much different from girls, and Ella has always been very exceptionally smart and hits every milestone early. So I have been very careful not to compare him to her, or other kids his age. We are having him evaluated in January in the speech department and OT department for some of this stuff. I am a little nervous about the OT stuff, but I know that if we can catch some of this stuff early, he should catch up eventually. It is just my prayer that God can lift whatever is hindering Noah from developing correctly, if there is ANYTHING. Just trying to cover my kids in prayer. Nothing wrong with that!
And I don't think I'm worrying about something that's not there. We know for sure Noah is a little behind, we're just trying to figure out if its something we need to be worried about and work on, or if its just that he's getting a little bit later start. My faith in Christ says that he is getting a late start, and he will catch up soon. But we would definitely appreciate prayer in this specific area.
I know my thoughts are frazzled; just trying to explain our thought processes over the past few months over this issue!
Looking forward to Kyle's family coming next week for Christmas! Will write more soon. It's LATE!
