post-surgery update

Hi Friends!

Evie's "bilateral percutaneous tendon lengthening" went off without a hitch!!! We requested that anesthesia try a "laryngeal mask" before intubating her since intubation causes a lot of airway irritation, and it all went great. In summary: We arrived at 11:30, they took us back to pre-op around 12:15, took Evie back to the room around 1:05pm, and were completely finished around 1:50!! It's amazing how smoothly things go when we give God control isn't it!?
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Evie was only upset for a short time in pre-op because she was starving, but the nurses said she was smiling and even giggling when they were giving her gas to put her to sleep before they put in her IV (: What a rockstar patient she is (: Here are some pics from my phone from the day:

in pre-op... mom! i'm starving!

home! still sleepy from anesthesia

just waking up from a 2 hour nap, checking out those new legs...

success! you can see how her feet are flexed instead of pointed!

I need to give a shout-out to my friend Amy, her daughter Lydia has a completely different "disease" than Eve, but similar treatments. It has been so great to bounce ideas off of and encourage each other... Lydia had this surgery months ago... and even went crawling after a brownie a few days ago! I think these girls are destined to be friends for life (:

pre-surgery laughs!

i love this new video thing!!! (:

unprepared...

Hi Friends (:

As I'm sure you know, Evie's surgery is scheduled to happen (hopefully for REAL this time!) tomorrow! I was pretty dissapointed with myself at how incredibly upset I got over the cancellation two weeks ago, so I did a little self reflection. Two weeks ago I had everything ready. My house was clean, kids were clean, outfits picked out, prayer spoken, attempt at a good nights sleep, enough time in the morning to pick up donuts for Lyla, etc. So obviously I DESERVED for the day to go the way I expected RIGHT!? Wrong! God has plans much bigger than ours, and our plans really don't matter compared to His!

SO how have we prepared for surgery tomorrow... Well our house is looking about normal, we're watching the Oscars, and I even took a day trip to Kansas City yesterday to spend the day with some high school girlfriends that I don't get to support often enough. Instead of going into the emotional "mommy-vault" where I try to control anything and everything so that I "feel" like I'm preparing for Evie's surgery, we enjoyed our past week, have continued praying, and we're going to trust God to take care of Eve.

Not only do I believe this is how God wants us to live, but we had an absolutely enjoyable past two weeks where Evie crawled, got 3 new teeth (including 2 molars!) and has had some time to heal up from the cold she developed. God is good, and I'm so thankful that he loves me even when I become an overly-controlling mom in a world where he already has things taken care of.

Love you friends! Surgery is in the early afternoon, and providing Evie does okay with anesthesia we hopefully will not have to stay overnight. Prayers for safety, pain control, and a successful surgery will be much appreciated (:

Evie CRAWLS!!!

Hi Friends! One of you brilliant blog readers made the suggestion of enticing Evie to crawl via chocolate... well I cut up some small brownie pieces and that did the trick! Even caught it on video (: This is the first video I've ever uploaded so we'll see how it works (and it's from my phone so it may not be the best quality but I tried!) (:

Go EVE!!!

brains and body...

Hi Friends (:

We saw the scan results from Evie's MRI on Thursday... and in the doctor's words, her brain looks beautiful! No pressure, no extra fluid, lots of healthy wrinkles, and her little bulge just happens to be the way her skull formed together after surgery #1. GREAT news! No repeat skull surgery in the near future (:

Evie made some huge physical progress this weekend. First, I put her in her crib to play. When I looked over she was on her knees, pulling herself up with her arms. She is FINALLY understanding what those legs are for! Later, while playing with her cousin Henry, she decided she wanted his binky SO BAD that she actually used her legs and arms to pull herself across the floor in a sort of clumsy Army crawl! She made it about 3 feet before she tired out, it was AMAZING... and she got the bink before he did (: Now I just need to find something she wants that bad again... she seems to have my competitive spirit, for the sake of Evie's crawling Henry better be ready for some more playdates!

The weird thing about these new experiences is they break my heart in good and bad ways. I'm sure every parent of a special needs kiddo has felt this way, but this is the first time I've felt it so intensely. Watching Evie try to crawl is so exciting and praiseworthy and celebratory. It's such a huge step for her. It's also really hard to watch her struggle SO HARD to do something that most kids do months earlier with much less effort. She and I watched kids her age run the hallways at church today, and she waved her arms in excitement just watching them explore. It was gut wrenching for me to see. It makes me wonder what she's mentally ready for that her body just can't do, and if I'm giving her the opportunities she needs to grow. It's a lot of pressure to wonder if I am doing enough.

When I posted about planning a few posts ago, I meant to write this verse - "Now listen, you who say, 'Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.' Why, you don't even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, 'If it is the Lord's will, we will live and do this or that." (James 4:13-15). This is a passage that used to bring me a LOT of anxiety. I thought failing to plan was planning to fail, so what did it mean if we weren't supposed to have plans?? I thought that this passage meant that God's plans were different than mine... What I have learned is that God's plans are BETTER than mine. Just under two years ago, I was planning a funeral, but God was planning a first birthday party. He knows how Evie will progress, and I can trust his will for her. It is already better than any doctor hoped in the beginning.

Love you friends (: Evie is still sick, but 'if it is the Lord's will she will have surgery a week from tomorrow.' We have a very low-key week so I will try to get some pictures up. Thanks for praying for us!

what a week (:

Hey Friends (:

Well Evie got a bad case of congestion/coughing/gagging Monday night, so perhaps it was better that her surgery didn't go through. We went to the doc yesterday and she's on a new antibiotic to try to get her cleared up before surgery on the 28th. She's not sleeping well as she constantly chokes on her mucus, poor thing.

We are also going in tomorrow to have a rapid MRI done, followed by an appointment with her neurosurgeon. There has been concern about her brain pressure from her neurologist and myself. Lately she puts my hand on her head and wants me to rub it, and her soft spot is always a little concerning, so we're going to hopefully get it scanned. PRAY that she stays still for the scan, it can be tricky to keep her still.

Sorry for the short update, when Evie doesn't sleep nobody sleeps around here!

Love you friends, I'll let you know how the scan looks (:

the short or the long version...

Surgery update...

The short version: surgery was cancelled, and is probably rescheduled for Feb 28th, two weeks from today.

The long version: We arrived for surgery this morning and Evie was hungry. We gave her a few bites of donut and a couple ounces of formula since the orders said she could eat and we didn't want to send her into surgery starving. The anesthesiologists asked when her last meal was and we told them one hour ago. Apparently we should have been notified that she couldn't eat 6 hours before the surgery, even though the orders were for local anesthetic. I guess they do it different at the med center than they do at Childrens, and these anesthesiologists wanted to be ready to intubate since Evie has a shaky history, which is very understandable. So we left, I cried most of the afternoon, and surgery is rescheduled.

I am disappointed. We have been waiting to do this surgery and scheduled it over a month ago. We have held Lyla and Evie out of activities trying to keep them healthy, John had his schedule moved around, we had Lyla taken care of for the day, and I have spent the last week+ praying and preparing myself emotionally. I know it's not a huge deal in the scheme of things, but it would have worked out so Evie would have her casts taken off the week before we went on vacation to see my grandparents, now they will be taken off when we get back. One of those little things that would have been nice.

Thanks for praying. I know there is a purpose in everything and I'm praying for the right emotions in this situation... I'm sure crying, frustration and being mad at myself for feeding Evie aren't the "right" ones.

Love you (:
Lindsey