cancelled.

August was a great month!

One of the most exciting things happened at Noah's OT appointment on the 14th in Seattle. After observing Noah's feed, Keren told us that Noah is EXACTLY WHERE HE SHOULD BE ON HIS PUREED FOOD! I started to tear up! She said that's totally appropriate for his age level, the amount he was eating and the ease and excitement that he was able to do it in. He's grabbing the spoon when it comes to his mouth, trying to be independent and feed himself. He's still not consistent though, every meal is different as far as the quantity he eats and how eager he is to do so, but I was ecstatic to say the least that he has come so far! Because he's totally over the bottle, we are continuing to syringe feed him as much as he'll allow, and trying to introduce the sippy cup. She said lots of practicing swallowing is what's important now to get those swallowing muscles in to shape (since they haven't been working as hard as most babies the past 7 months)! He doesn't do very well with the sippy cup yet, it's too hard to suck the liquid out of a slow flow and a fast flow is just... too fast. So we'll get there. It is such a slow process. Trying to patient, and get excited at the baby steps. YAY NOAH! Biggest accomplishment is that there is no sign of aversion. Thank you Lord. My biggest fear. Funny how fear goes away when faith shows up... (Martha, wink wink!)

We rented a house with Kyle's brothers and sisters on Lake Chelan for 5 days at the end of the month-- 17 of us! It was a blast, so great to spend such quality time with each other and really get to just chat, relax, drink wine, play poker, boat, & swim. The kids had an awesome time, Ella and Noah both loved the water (we had a pool at the house which was sooooo nice), and Ella really progressed with her confidence and swimming thanks to Aunties Lisa & Ashita! Ella loves her cousins, she continues to talk about them. It is really cool to see what a legacy Lee Johnson has left; he truly lives on in his kids and grandchildren. His fun spirit, sense of humor, love for life and his family. Such a great group of people. Can't wait for next year! Kyle always has so much fun with his brothers (duh), I know it was especially special (is that redundant?) for him. Cool to show of his town and new home to his brothers, and of course for them to meet little Noah.

Kyle is so proud of his son.

A week after we got back from the cabin (this tuesday), Lindy flew up from San Diego to spend the week with us. On Saturday after Kyle & I get off work, we're heading to Seattle to spend a couple of days because Lindy's never been, and Noah's got his next OT appointment monday so it just worked out! Exciting month for sure!

And the biggest thing I want to share...

We cancelled Noah's surgery.

Crazy huh.

As I said in the last post, we were not completely at peace with our decision to schedule surgery for November 5th. As time went on Kyle and I both felt less comfortable and increasingly uneasy about it. I kept asking myself and God if it was just normal worry for surgery or if it was something more, my gut instinct or wisdom from God. One of my BFFs Barb was praying that Kyle would make the decision, to talk less of the "mom factor" out, you know, we just worry so much more naturally.

So about 10 days ago I called Children's to make an appt. to see Dr. Perkins to talk about the risks of NOT doing surgery. Expecting a call from the nurse or the scheduler, I was surprised when the doc called me himself. I asked him my biggest question, "Is Noah more likely to need a tracheostomy from swelling during surgery or from the cellulitis infections he will inevitibly face without surgery, especially with cold and flu season just around the corner?"

Perkins said that he is more likely to need one from too much swelling during surgery.

That was all I had to hear.

Noah's airway has always been (and will continue to be) our number one concern and biggest priority in his treatment. Lots of babies with LMs have trachs. They are literally life saving. But of course I want to do everything I can to avoid one. Lots more care needed at home, around the clock, hospitializations, etc. Just a whole other can of worms and more stress that I don't think I could handle right now. So although his eating is not perfect and he's still g-tube dependent, and his LM is big and people stare at him wherever we go, I don't care.

I don't care because he is healing.

Since we've gotten back from Chelan, we're starting to see more extra skin on his neck! There has always been a really stubborn cyst that sticks out front under his chin (Kyle calls it the Jay Leno), well that cyst has shrunk dramatically. So Kyle and I took both of these in to consideration (docs advice + the extra skin) and feel the best thing to do is to just wait.

Oh, the waiting!

I'm choosing to not be fearful this winter about the infections Noah might encounter, even though it does worry me. I'm just praying for God's perfect covering over Noah and that he'll protect him from all disease. With help from Derek's research we're going to pump up Noah's immune system with some probiotics & other fancy (but natural of course) stuff and just PRAY. Knowing that God will carry us through this storm as he has for almost an entire year.

Can't believe it's almost been that long since that first scary ultrasound. But more on that later.

It's late, I gotta get to bed! I'll try and write more after Noah's OT appointment on Monday. His last one was so awesome it's like I don't want Keren to be disappointed, lol, how crazy am I?! Oh, I forgot to mention he is just days away from crawling! He scoots all over the room, in a circle, and can army crawl... but still waiting for the coordinated crawl!

Still appreciate lots of prayers for little Noah. And whoever still reads this, PLEASE show me how I can pray for you. God's been working on me so much lately, with personal issues, and I really want to reach out to anyone who needs prayer, or just a friend. I've been living in a bubble for a long time now and I just don't want anyone to think that my plate's too big to pray for others. I'm learning that I really need some good friends, to lean on and be leaned on, to give and take. Noah is doing EXCEPTIONALLY well, only by God's grace, and I totally know that... and I just want to share with you all about your life's struggles and how God's moving. I'm learning that without suffering and hard times there can be no spiritual depth to a person, no holiness; and without pruning, no fruit.

Just trying to work through some of the battles on my heart lately.

Thanks again for checking in!

Love, Andie