partly cloudy...

Hi Friends (:

Well Dr. Pat put it perfectly this afternoon at Evie's sick visit... last Friday she was Sunny with clear skies and today she is Partly Cloudy. Hopefully we can keep away that chance of rain. She most likely has a virus, but we're putting her on precautionary antibiotics, and are going to start breathing treatments to see if it helps to unclog the gunk she has building up.

It just about broke my heart when Dr. Pat said "yeah, she just doesn't have that glimmer in her eyes that she had on Friday." Ugh. add to that a partly cloudy mama.

I truly believe that with loads of prayer and rest Evie will be all cleared up and ready to go for surgery. We have 18 days, and her cold should run it's course in 7-10 provided it doesn't settle in her lungs and grow in there. Will you pray that Evie gets better quickly, and Lyla doesn't go bonkers while I keep her away from any potentially sick human being (that being everyone) for the next two and a half weeks? Also that Eve can keep weight on during her cold... shes already lost 4 oz... shes 11-7.

Thanks friends. Love you.

my BIG girl!!! and her feet...

Hi Friends!

Hope you all had a good weekend, and got a little R&R. We had a great weekend, starting with Evie's 9 month doctor appointment on Friday. Yes. 9 months. Where did time go? I have no idea!

Soooooooo (drum roll...)... Evie is 11lb 11oz!!! Her weight has always been going up... very... s.l.o.w.l.y... but this past few months she had a spike upward! I had that glimmer of hope that she would be on the growth chart (even like .5%) but we are getting closer every visit. Her head circumference, that used to grow relatively normally, dropped significantly, just more assurance that she needs surgery. I asked Dr. Pat if we could measure her from under her chin up around her soft spot... but I guess that's cheating. It was worth a try (: Dr. Pat said she looks the best he has ever seen her. I'm pretty sure I was beaming with pride when we left the office.

Another big step... Evie found her feet on Thursday! Her Physical Therapist and I might just have to have some cake and ice cream and do a happy dance on Wednesday at therapy. We have been raising her pelvis on a little pillow... putting wrist rattles on her ankles... playing "mommy's gonna eat your toe toes!" and all sorts of ridiculous things... and on Thursday she just reached on down and found them. Way to go Evie Jayne!

Lastly (and not as happily), Lyla is coughing, and Eve is congested. Evie projectile vomited twice yesterday... and we think she may be gagging on some mucus. SO we are going to get the cough assist device back on once a day, and suction when she needs it. We haven't had to suction her for about 2 weeks, so it's kind of a bummer that she's congested again. We have been all over town the past couple of weeks enjoying good health, good weather, and good friends, but I'm thinking we're going to have to shut it down until after surgery. We had planned on keeping Lyla home from activities starting 2 weeks before surgery, but it looks like we're going to have to start a few days sooner.

If you could pray that both girls would get rid of whatever little bugs they have, I would greatly appreciate it.

I also want to say THANK YOU to you amazing people I have met through our blog, contacts with friends, facebook, everywhere. Just this past week the girls and I had lunch with a beautiful mom and her 5 month old daughter who also had a lethal prenatal diagnosis. It was so encouraging to talk to her about life with our kiddos, future pregnancies, our families, God's amazing provision, etc. A good friend from church helped me make hats for post-surgery Evie (she did most of the work!), and I received a box in the mail from a blog-friend that I haven't even met who hand knitted a blanket and hats for Evie also. I can't express in words how thankful I am for all of you.

I sincerely Love you all, and feel blessed to know you.
We took pictures of the girls swimming this weekend, I will get them uploaded and on here as soon as I can!
Lindsey

Cemetary song... and the man...

Hi Friends (:

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I've been kind of in limbo lately. I'll be honest, I've been feeling sorry for myself, and I should be ashamed. I feel like I spent most of last summer preparing for Evie's birth, and when they moved Evie's surgery to August 6th I didn't want to spend this whole summer thinking about surgery. Last summer we were picking dates to be induced... this summer we are picking dates for surgery. I really don't think about it all the time, but it's like a little dark cloud following me around, letting Satan bother me when I just don't need it. and I let it get to me.

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One of my Bible study teachers a while ago encouraged us to underline passages that really speak to us, and date them. I found this one a couple of nights ago, dated 8-8-09 "That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever! So we don't look at the troubles we can see right now, rather we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever" 2 Corinthians 4:16-18
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Those were words I was clinging to 6 weeks before Evie was born... 6 weeks before I thought I was going to have to give her to the Lord. I have been spending some time with friends who have special kids, and a lot of them blog. It has been amazing to read their birth stories, but it challenged me to go back and read my own. I'll be honest, I avoid it. I never want to lose the sense of reliance I had on Jesus during the walk through the valley I was in at that time, but I don't necessarily want to relive it either. Honestly, I should read it every day. It would revamp my priorities, expose my faults, and refuel my desire to know Jesus more. and I would definitely stop feeling sorry for myself. I have been blessed more in the past year than some people experience in a lifetime.

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When I was in my car tonight, I put in a Coldplay song that I used to listen to when we would go to the cemetery to spend some time with Evie's doorway to heaven. I will put it as the first song on my playlist. It is a little plot we had reserved for her next to my great grandparents, where John and I could eventually be buried. It is a beautiful green hill, where we sat, thought about Eve, and breathed in the sweet summer air. I would dream about meeting her, and the time we would have together, and I would pray that we would have lots of it. I love the lyrics that say "for you I'd wait, till kingdom come, until my days, my days are done. Just say you'll come and set me free, just say you'll wait... you'll wait for me" I imagined myself waiting for Evie, and she waiting for me. One day being set free to get to know her if we didn't get much time.

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So in closing, I just want to say Thank you Jesus. Thank you for healing my baby girl. Thank you for giving me the strength to survive 5 months of uncertainty. I'll be honest, when I say I don't know how we did it, I do. You promised we would run and not grow weary, we would walk and not faint, and you gave us the strength to give you our daughters future. Thank you for every minute, of every hour, of every day that I have to love both of my girls, to snuddle in our bed, to kiss their faces, to tickle their toe-toes. To you be the GLORY forever and ever. Amen.

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Oh wait a second, I'm not done (:

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I have been reading some fabulous Father's Day posts, and words just can't do justice to the amazing father that John is. I have a few pictures from Evie's birth-day that spell it out pretty well.

Eves first few minutes

Happy Belated Father's Day to the man of my dreams. You have never been anything but proud of our girls, differently abled or not. You are encouraging, supportive, and can make any girl feel like the only woman on the planet. I adore you because I have never felt like you wanted me to be anyone but exactly who I am, and I know our girls will grow up to be confident young women for the same reason. You truly are the best. We LOVE YOU! Lyla, Evie, and mom.

Results and Surgery Update

Hi Friends!

Got a call yesterday afternoon that Evie's CT Scan is unchanged from her last one, meaning her brain pressure hasn't increased at all... PRAISE GOD!

Got a second call this morning, that they are moving Evie's surgery back to July 16th. That is exactly what I was praying for, since John already has his schedule rearranged to have the 6 days following surgery off. Woo hoo! That gives us 3 weeks and 2 days.

I have had a few other things weighing on my mind this morning, but until I get my house cleaned up and my kids napping they are going to have to wait (:

Love you friends! Thanks for praying!
Linds, Ly & Eve

adopted... (:

Hi Friends (:
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Evie, Lyla, and I made some new friends today! A while ago I got an email from a friend of a friend who had been reading my blog through her pregnancy with her 2nd daughter who has Down's Syndrome. She sent me a link to her blog, and I have been following them for the past few months. Her older daughter is just weeks younger than Lyla, and her younger daughter is a few months younger than Evie.
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A few days ago she sent me a quick email to let me know that a few moms from the Omaha Down Syndrome Parent's Network were having a little playdate this morning, and we were welcome to come. Why not! I wasn't sure how well we would fit into a group who already knew each other, and whose kids were all similar, but it was just fabulous. These women all have kids in Early Intervention (physical, occupational, speech therapy, etc), a laundry list of doctors, medical scares, and hospitalizations. It was so nice to be able to talk about Evie, without feeling like I was speaking a foreign language.
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The ODSPN meets once a month for coffee, and I am considering joining. I will have to check out the logistics beforehand... since I technically don't have a kid with Down's Syndrome... but since Evie and I don't really fit into a "group" right now I feel so blessed that we happen to be invited to one. It takes a long time to connect with people, and we got to hang with 5 beautiful families who are in a very similar situation to ours.
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I feel like we've been adopted (:

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Here are a few pics from our playdate:

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taking pics of the kiddies

Evie getting some love

Wesley, Evie, and Macy hanging out
could they be any cuter?

Evie liked all of the attention she got for being the "new kid" (:

Thanks for the invitation new friends! It was a wonderful way to spend a Monday morning.

AND yes, we got Evie's CT scan done this afternoon... I should know the results tomorrow morning. It took us 3 hours to get a 5 minute scan (long story that I'm too tired to tell!) but it's done and at Dr. Puccioni's office ready for him to read. I will update when we know anything about that or the surgery date.

Love you friends! Thanks for reading (:

photos by Brian Lehmann http://www.brianlehmann.com/

take it off the calendar...

Hi Friends,

I got a call on Friday, that July 16th isn't going to work for Dr. Puccioni, Evie's neurosurgeon, to do her surgery. They would like to move it to August 6th. I called his PA because I am concerned about the pressure in Evie's head building, so we are going to have a follow up CT scan done tomorrow to make sure she's okay. She hasn't done one since April 27th, so it seems only appropriate that we check to see how things are progressing. She also said that Dr. Puccioni will be back in the office on Tuesday, and they will try to get Evie scheduled sooner.

I am pretty anxious about the whole thing... August 6th seems so far away, and Evie's soft spot sure looks large and pointed. When we met with Dr. Puccioni the first time we left with the impression that Evie's surgery would be scheduled for 2 to 4 weeks after the craniofacial clinic... which was nearly 4 weeks ago.

Will you pray with me that 1. Evie's brain pressure hasn't increased over the past few months or done any damage, 2. That we can get her surgery scheduled and confirmed, and 3. That John can get his schedule rearranged around the new date? (he already cleared july 16-21!)

Thanks friends (: Love you.

put it on the calendar...

Hi Friends!

Evie's surgery is on the schedule for July 16th, at 8am. Got the call yesterday that it is confirmed. They said we will be there 3-5 days, so I am going to plan on 4-6 (:

Thanks for praying, busy day, will update more later!

Lindsey