Friday, October 29, 2010

one down, one to go!

evie's echocardiogram came back GOOD! i honestly thought i was setting myself up for disappointment, so i tried to tell myself there was only a 20% chance she would pass... but she did!!! we are doing an overnight "trend oxcimetry" on tuesday, basically a machine will keep a record of her breathing and oxygen saturation overnight and if she passes that one we can take off the oxygen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

too tired to even capitalize... crazy week, can't wait to sleep, but had to let you all in on the good news (:
love you friends! thanks for praying (:

Thursday, October 28, 2010

pulmonology update...

Hi Friends (:

Our visit with the pulmonologist yesterday went well. I didn't even have to beg (: We talked about where Evie's O2 saturations are, and he said if we do an echocardiogram and her heart isn't distressed at all, we can try to take her off of O2! So we did the echocardiogram before we left the hospital. I am cautiously optimistic. Evie has been pulling her tube off of her face constantly the past few days, and I almost feel like it's a sign that she's ready to be done... but we need to put her heart and lungs before her and my desire to get rid of all these tanks and tubes!

SO we wait for results. I will post them as soon as I know anything (: If her echo goes well then we have a oxygen monitoring test overnight, and if that goes well I take back the tanks and we have a celebration dinner (: If not, we just wait 3 more months and try again. God is good, and it will all come in due time.

Love you, and thanks for praying!

Monday, October 25, 2010

oh yes oh yes oh yes!

Finally, I got a sitting up picture worthy of posting. You'll have to excuse the slight blurriness... times like this are only captured with the always on-hand cell phone camera (:

Evie and her similarly sized care-bear pal... get her Eve!

AND it is with an unbelievably happy heart that I tell you, Zoe Eliana was born on Sunday morning at 9:51am, weighing 5lb 14oz. From her mom's facebook page I can tell you that she is breathing and eating on her own. She is taking no pain meds, and as far as they can tell isn't in pain! She will have her x-rays and full set of tests when they are released and can go to the Children's Hospital where they live. Thank you Lord!
and THANK YOU for praying friends! You guys are awesome. Love you!

Saturday, October 23, 2010

the little things are big things (:

Hi Friends!

What a good weekend! John and I actually got a babysitter tonight (for Lyla... Evie always gets to party with us) and had a night out with friends. It was nice to get out for a bit, relax, and catch up. Evie is doing great, we have been so busy it feels like! Today we got to go to a friend's Make-A-Wish kick off party, and I am always in awe of the strength God gives a family to not only persevere but to grow and thrive in the midst of health troubles. It's fun to be around families who have struggled a bit, because it's always the little steps forward that are so joyful... something we miss out on sometimes with "normal" kids.

Speaking of little steps, as I mentioned before Evie is sitting up, now for minutes at a time! I still don't have a picture, I am waiting for a good one, which I think may be impossible to capture because I get so excited the picture never captures my excitement (: Hopefully soon I will capture one that is great enough to post! She is also blowing kisses. The really fun thing is that I'll say "Evie, blow kisses to daddy" and she turns to John and blows kisses without me showing her how, or pointing to John.... so she is identifying people, and following instructions without having to be shown. That shows big physical and cognitive growth! Go Eve!

And for a few prayer requests.... we see the pulmonologist this Wednesday, and I am going to BEG to try to wean Evie off of oxygen again. Most of the kids in her clinical trial were on O2 for 4 or 5 months, and we are two months shy of a year, so I'm a little weary of carrying tanks around. I'll probably have to start eating fewer calories when I don't have the extra weight to carry around, but it will be well worth it! (: From what I've heard they have allowed other kids to wean when they are sat-ing around 93-95 consistently, and Evie has leveled out right around there. She was improving and improving, and the past few months she has stayed the same. I feel like this is a sign that she has improved with assistance as much as she's going to, and we need to let her body try on it's own... but I'm not a pulmonologist, so we'll see what the expert has to say (:

ALSO, I got an email last June from a mom, who also received a lethal diagnosis for her unborn daughter of OI type 2 and decided to continue her pregnancy. She was given the same options (by the same doctor in California as us... coincidence, I think not!) as we were, terminate the pregnancy, or donate the baby to science when she passed away (pretty cold hearted... and heartbreaking). Regardless, precious baby girl Zoe has made it to term (HOORAY!) and Chelsea is having her c-section tomorrow. Will you join me in praying for Chelsea, her husband Curtis, and their new baby Zoe? From experience I would say to pray for complete healing, peace, joy in the midst of nervousness, safety for Zoe, and TIME. A lifetime of time.

Thanks friends! I love you so much, and love sharing our little achievements with you (: It blows my mind to know that there are some of you that I will never meet on this side of heaven, but we'll have an eternity to get to know each other. How awesome is that (:

Wednesday, October 20, 2010

my crazy kids (:

Hi Friends!

Sorry it's been a while since I posted, I downloaded my pictures of the girls, and forgot to post them! This week has been unexpectedly busy, but good. We saw Evie's neurosurgeon Tuesday and all is well! Everyone who sees her says "well her head shape is beautiful" which I guess is what they look for. She will have a CT scan to look for pressure in 3 more months, with another appointment. We had Evie's teacher come on Monday and she thinks Evie is progressing beautifully... and her PT and OT came today to the surprise of Evie SITTING up! On her own! She can hold her little body upright for 2-3 minutes (: It is the darn cutest thing. I'm always sitting behind her for when she falls over so I don't have any pictures yet, but promise to get one soon (:

Here are the girls Halloween costume pictures, finally!

Lyla has been telling everyone she's going to be a shark, Evie's going to be a penguin, and "Sharks eat penguins!!!" She has been watching a little too much discovery channel with John (:

Love you friends! I'll be back soon (:

Monday, October 11, 2010

craving God...

Hi Friends (:

This fall has been an interesting time for us. I feel like last year was sooooo so so long ago... and yet just the smells of the season can bring me joy and make me nauseous at the same time. The past few weeks my spiritual walk has felt a little dry. We've been busy, and I just haven't spent the good quality time in God's word that I so need. This past weekend there was another sermon in Revelation that has led me to really dig into my Bible, and I connected with some new friends who love Jesus this past week. The funny thing about God to me, is that once I get a taste of Him, I crave Him to the point where I don't know how I could ever spend a day without Him. And my prayer life goes deep, where I can't sleep because I am so marveled at God's goodness and just can't stop telling Him about it.

I love these seasons, where I appreciate everything a little more. I told my friend the other day "I've been watching Evie sleep a lot lately" which sounds weird, but I have. And I have continued amazement at the GIFT we have been given of her sweet face every minute of every day. I can hardly leave the house without missing her, and I WILL take naps with her when I want... because I can! (:

So thank you God for this season of fullness. Help me to use it to be a good, life-giving, nourishing, mother for my kids, a compassionate wife, and a God-honoring friend.

Love you friends, and YES I'm working on those costume pics, I can't get these kids to sit still! (:

Sunday, October 10, 2010

pumpkin patches...

Hi Friends (:

I am uncharacteristically excited about Halloween this year... maybe because the girls have such stinking cute costumes! (I will keep you in suspense until I get a good picture) ...and because Lyla loves pumpkins. I haven't talked to her much about the scary stuff, and the other day at a friend's party she said "look mom! an x-ray man!"... also known as a skeleton. That's when you know your sister has a bone disease, you're 3 and you know what a full x-ray looks like.
We have already been to two pumpkin patches, and painted our pumpkins. The spray glitter is still drying, pictures to come (: Brian is almost finished taking photos for Evie's story, so I'm sorry you're going to have to put up with my amateur pics... More importantly, Evie is feeling better. She finally stopped throwing up late last week, and is adventurously trying new foods. She's a big fan of peaches, pears, bread, and sugar cookies! When you need to gain weight you get the good stuff (:
Here are some pics from the past week:

Evie looking for daddy and Lyla in the corn maze (photo by Brian Lehmann)

and my amateur photos: Lyla on a pony...

our attempt at taking a cute picture on the tire swing...

pumpkin girls!

the Pooleys patch...

Evie glowing in the corn bin...

Lyla at Valas by the bunnies (:

Lyla and her buddy Matthew...

a scary spider...
Cinderella and Prince Matthew!
Love you friends! Pumpkin and costume photos coming shortly (:

Tuesday, October 5, 2010

sick, sick, sick...

Hi Friends (:

Sorry it's been a week since I posted, this weekend has flown by in kind of a bad way unfortunately! Evie had what seems like the stomach flu all day on Saturday, and a little bit on Sunday. Yesterday she kept her formula down, but vomited up her seizure meds, which she had also done on Saturday and Sunday and last night she was acting a little funny... (most likely having seizures) so we took her into the ER late last night to get a shot of her medicine. She did very well today, we kept her on Gatorade until dinner, and let her have formula at dinner. She gets her meds again tomorrow morning, so you can pray that she keeps them down. Whenever she gets a tummy bug she always has a terrible time keeping her medicine down, I'm not sure if it's the way it tastes or the consistency, but it just throws her for a loop for days after.

In other news, we are going to the pumpkin patch this Thursday with Lyla's preschool, and possibly Pooleys in Bennington tomorrow if Evie feels okay because John has the day off! Lyla got her halloween costume over the weekend... she has been asking to be a Shark and I finally found one (: ... her and John have been watching the discovery channel, and she just loves sharks. So again this year, we were shopping in the boy section of halloween costumes (she was a tiger last year) but shes the darn cutest shark I've ever seen!

I will post some pictures of our adventures later this week!

AND I haven't printed our book yet, so if you still want to leave Evie a note please feel free on the "To Evie Jayne with Love" post!

Love you friends (: Thanks for checking in.