Saturday, January 5, 2013


Our friends from Chicago...Chrissy and Aiden :)

Selah did NOT like sitting with Santa :(

Big girl!!

Our second trip to the zoo with aunt Pooh and our cousin Meaghan or as I like to lovingly call her...filthy animal :)

Her favorite puzzle

Her favorite kitchen drawer to open and stand at

So excited that our sweet cousin came to visit!!!

Holding my hand and taking a stroll or as we like to call it, "doing the shuffle"

If only I knew what she was thinking...?!
Another pic from our zoo trip

Hi! I know I gave my word on the last post that I would be back soon with an update and well as you can see, that didn't happen...sorry! I believe I have good reason though...we've had the flu and I've been down with it...yucky stuff!!! So, I've not been up to doing much of anything. We're on the mend though and feeling SO much better than what we were! Anyway, I thought I'd try to fill you in on what we've been up to. And, wish you a belated Merry Christmas and Happy New Year, lol!
We've had a few different things going on. I'm just going to list them as they come to mind and hope that it all rings a bell?! We've recently had two night nurses that started coming to sit and watch Selah. They come four nights a week...they each work two nights. It's been a much smoother process than in the past and I can honestly say that I know it's worked out how it's needed God's almighty timing and ways. I'm thankful and it's truly been a blessing thus far! I pray that we continue to just know God's hand at work in this blessing.
We've also recently made a big road trip up to Missouri to see family...yay...and then on to Chicago to meet a physician at a Craniofacial Center there. Through corresponding with a sweet mama of a little boy that shares Selah's syndrome, I got the contact information for this physician. This mama and her sweet boy are both patients of this doctor and she highly recommended his care. Because the syndrome is so rare and it's not often that we've dealt with a doctor that's performed jaw surgeries on these patients, we decided to look into it. Long story short, we got an appointment and made the trip up to meet this doctor. We got to ask some questions and get his recommendations on whether or not to pursue the jaw surgeries there. He basically said that it was worth trying and that he was willing to work with us if we're committed to all it will entail...the distance, length of and number of hospital stays, financial and out of state costs, etc. We left it at us touching base after the first of the year to decide if we'll pursue the start of the jaw surgeries there, with him, or not. Let me remind you that the consults we've received from the more "local" hospitals in our and surrounding states have said they can't and won't perform the surgeries at this point in time. So, we know that this doctor in Chicago has worked some with patients with Nagers Syndrome and that's encouraging. There's just a lot to consider...or at least it's a lot to me...quite overwhelming...
On a lighter note, this doctor had arranged for us to meet this sweet mama and her son by scheduling our appointments on the same day. Sweet mama...Chrissy...and her in Chicago and were having a check up on that day. She as well as we were unaware that the physician arranged the meeting and we were both pleasantly surprised!!! It was such a blessing to get to meet them in person and to get to hear their input and to ask questions and just to see their smiling faces!!! It totally made the trip worth it!!!
So, we made it home from the trip and spent Christmas and New Year's here...recovering from the flu...yucky!!! :( We are thankful it wasn't worse though and we're thankful to be on the mend!
Other than that, we've been enjoying sweet Selah and just watching her grow. She's becoming such a big girl! She's using so much sign language and she's so intentional about trying to communicate with it. She's taking steps as long as she's holding one of our hands. It has to be on her terms and timing though or else she will melt down and just sit and refuse to walk...oh, she gets it honest! I've been giving her a choice, "Do you want to walk or do you want up?" and she's responding pretty well to that. She seems to feel a little more in control when given those choices and that helps, ha! She's also exploring more...opening drawers and cabinet doors. On that note, recently I started her bath tub water and let her set right in the doorway of the bathroom while I went to grab her towel...right in the next room. She shut the bath door and pulled out the bottom drawer of the vanity...blocking me from being able to get in to her. I tried to calmly say, "clean up, all done, close the drawer" but it didn't work. I began to reach meltdown mode and screamed for Spencer. Selah couldn't get the drawer in and started crying and could hear the stress in my voice. I kept thinking of the running bath tub water. Spencer ran and got a very large kitchen knife and managed to jimmy the drawer in, through the small crack in the door that we could get through. Needless to say, I rushed in and turned the water off and grabbed her up all the time thanking God for no harm done. I was so thankful he was home and could use his firefighter skills. Had he not been home, there would've been another story...a door to replace, a vanity to replace, most likely plumbing to replace, and last but not least and ER visit because of the stitches that Selah and I would've sustained from me busting in the door!!!
On a serious note though, I truly thank God for yet another "affliction eclipsed by HIS glory"...seems small but it is something I'm thankful for...His presence...
Well, I hope this has been an update that's worth the wait, ha. Thank you for your continued prayers and support...more than you know!!!