Monday, February 28, 2011

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 (:

Sunday, February 27, 2011

pre-surgery laughs!

i love this new video thing!!! (:

video

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 (:

Tuesday, February 22, 2011

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!!!

video

Sunday, February 20, 2011

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!

Wednesday, February 16, 2011

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 (:

Monday, February 14, 2011

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

Sunday, February 13, 2011

15 hours...

Hi Friends!

15 hours and they will be wheeling Eve into surgery. Everything is ready to go, I have our outfits laid out for the morning, and feel somewhat prepared to head to the hospital.

Our arrival time is 11:30am with surgery at 1. There are no "do not eat after such and such time" orders, which is very helpful! Evie will not be intubated, so we shouldn't need to be concerned about her breathing or sedation. I'm not exactly sure how they are going to keep her still with local anesthetic, but we will see.

I was beginning to get anxious tonight, and remembered where we were last Valentines day... Evie had RSV and was intubated at the Med Center with no certainty as to when she would be able to breathe on her own again. She has come so incredibly far, thus a "non emergency" surgery to help her possibly walk someday is a BLESSING!!! and I am honored to spend Valentines day praying for my little girl that I love with all of my heart while she gets her little feet worked on (: and Lyla gets to spend the day with her favorite Aunt Kirst and Nana! John and I will have a romantic lunch in the cafeteria or something special (:

Prayer requests: If there is sedation used that it won't interfere with Evie's breathing. That she won't be in pain during the surgery or following. That she won't panic when they take her away from us in pre-op, and that I won't panic either (: That everything will go smoothly and we will be HOME tomorrow night!!!

Love you friends, we are more than blessed to have all of you praying for us, and the weight of those prayers is deeply felt every day, especially days like tomorrow.

Linds, John, Ly, and Eve (:

Wednesday, February 9, 2011

PHOTOS!!!

the computer's strike against uploading our photos has ended!!! Here are a few from the past few months:

Lyla's first gymnastics meet last weekend (:
Lyla's number one fan!
Papa Steveo and Evie at church
Nate, Ben, and Lyla at Sesame Street Live
mommy love
Grandma Dellie, Nana, and Evie at a wedding
Lyla and daddy kicking up their heelsand my children's favorite... bath time (:

saltines and chocolate milk...

Hi Friends...

I was supposed to talk at our Bible Study leaders meeting yesterday morning about what God has been teaching me lately. I really felt God pushing me toward the topic of planning. I used to be a pretty scheduled person and wasn't overly thrilled when our plans would change. When Lyla was born I loosened up a little, and when Evie was born I apparently lost the brain capacity needed to make plans (: What God has taught me over the past year and a half, is that when our weeks and days are strictly planned, we always feel rushed, and miss so many opportunities to love people. God commands us to love Him with all of our hearts, and to love our neighbor as ourselves. By not having plans, I have learned to take time for others. To genuinely care for the people we run into at our routine places. To learn their names, things about their families, what they care about. To forego a much needed nap to spend time in God's word, or take a mental break and just "be still." My unplanned life is more flexible, less stressful, and full of joy in the small moments of caring for others.

The reason I bring this up is because I intentionally "planned" this week to be an easy week. Didn't make many appointments, figured we would keep Lyla out of any germ infested play areas, and get our laundry and cleaning caught up before Evie's surgery next Monday. Well that changed when Evie got a fever on Sunday. She slept quite a bit and felt generally lethargic. Monday I knew we needed to be on the lookout for seizures, and she had some jerky unusual movements during naptime. We gave her an extra dose of her meds, but around 11:30pm she had a long, 5+ minute seizure and we just couldn't get her to stop. With fear that she would stop breathing, we took a short ambulance ride to the hospital, and upon arrival she was our normal smiley Eve sitting eating saltines and chocolate milk. I tried to tell her if she wants crackers and milk she just needs to ask for it!!! No more scary stuff (:

It's so hard to know what's going on in that little body of hers, so we chose to err on the side of safety this time. We are going to increase her seizure meds until she is recovered from surgery, and keep all of those brain waves going the right direction. She had one funny number on her blood draw come back high (BUN) so we had a redraw today and are looking into what could cause that, but with Eve we just may never know.

Yesterday was recovery day, although I am still in a bit of a fog today. I DID make it to Bible study Tuesday morning, but NOT early enough to share what God has been teaching me (: So you all got to hear it! My plan for this week to be easy and smooth was definitely derailed and I've been a bit of a mess the past few days, but I think we're getting back on the right track.

I have tried uploading pics the past few days, but am still having difficulty, I will try again before I log off tonight. I am not liking this picture-drought we are in!

Love you friends, prayers for Evie to be healthy and STRONG for her surgery would be much appreciated!!! 5 more days to go (:

Lindsey

Saturday, February 5, 2011

testify!!!

Hi there friends!

Sorry I have only been posting weekly, I am trying to get to bed earlier... and well that cuts into my blogging time! Anyway, the title of this post is so appropriate to our lives lately, and it is my privilege to testify to the goodness of God!

A little story from a few weeks ago... John came into our room one night and said "Hey honey, is the ---- account in the bank our Adoption Fund?" and I said "yes" and he replied, "Do you know how much money is in it?" my honest guess was $1,500 and he said "no... almost $5000!" WHOA! SO after adding some Christmas money, our goal of saving $10,ooo this calendar year is over half way complete. PRAISE GOD! When I felt God leading me to a goal of $10,ooo I sort of figured if we didn't get even close that was God's way of saying that adoption may not be for us... but this is ovciously not the case! So we'll keep praying about it, adding a little to the pot here and there, and praise God for his provision!

Secondly this week went off without a hitch. Evie's favorite phlebotomist was working Wednesday, and he got all of her blood in one poke. We had some extra time, so we got her Friday x-rays done, and her EEG. Thursday we got the rest of her blood and urine done, so we didn't even have to go in on Friday! Evie was a rockstar!

Lastly, I was talking to Evie's clinical coordinator yesterday, and we were chatting about some other doctor's Evie has worked with. There was one particular doctor who was pretty insensitive the first time we met with him, and I think I figured out why. He is a bone doc, and the first time we met he basically told us we were dealing with bigger problems than why her bones weren't straight. I knew that, but I wanted his opinion on bones... he was a bone doc. I took it personally, I was 2 weeks postpartum, and in the hospital, so I justified my frustration! (: Regardless, he was talking to Evie's docs last week and said "When I first met that little girl I never thought we would be talking about the possibility of her being weight-bearing" (standing or walking). Basically, he was concerned about her overall health because there was quite a bit of thought at that time, that she wasn't going to make it. Apparently I have been oblivious to these ideas because that thought has never crossed my mind, but I would say there have been several times especially in the first year of her life that she survived against all odds. It has brought me to tears several times in the past few days, how unbelievably blessed we are to have such healing and hope for Evies future.

So thanks for loving us, and praying with us for Evie as she has grown up! We bought her 12 month clothes for the first time today... so now she is only 1 size behind her actual age (: That girl likes to eat!

Love you, Lindsey