Thursday, March 31, 2011

it poured...

Hi Friends (: - You know, we don't have a lot of "really bad days" around here.. well today it rained... and it poured at our house. Unfortunately we are all exhausted from little sleep the past few days, which magnifies bad days. - Lyla is in a behavioral funk that is exhausting all of my best discipline. An hour of discipline this morning ended in us both crying and hugging it out. We had a pretty abrupt end to vacation, and I think she's just working her way back into normal. - Evie just can't seem to keep her foot down in her brace where it needs to be. She's in a lot of pain, and I have to re-tighten her foot back down every 3-4 hours. She wouldn't even let me hold her this afternoon after I tightened her... more tears. - I recently sent a written Appeal to insurance over a sleep study Eve had done last February. It came back denied, and we received a EOB today saying that Evie's Orthopedic Surgeon is no longer covered under our insurance. This would be the guy that is cutting Evie's cast off on Monday, and has been following her bone growth since she was 2 weeks old. When I called our case manager I had her check our Neurologist since they work at the same building, and she isn't covered either. We have an appointment with her on Wednesday. She has managed Evie's seizures since she was 2 weeks old as well. I love and trust these people, and it will be hard for me to find new docs should we have to. I have some phone calls to make tomorrow, and could use some prayers that I can keep my composure better than I did today. - Top that off with catching my pant leg on the car door, a wet bed after nap time, and a migraine from crying, and I'm suddenly Debbie Downer over here! - I am so grateful for those of you who pray for us, if you could pray for Evie's pain and that her tendon would stretch back out, that would be so appreciated. And for insurance issues, that I can be a God honoring woman when dealing with such a touchy situation. - God is good. Evie is alive. Lyla is a great kid. John is amazing. One bad day isn't so bad I guess (: - Love you friends. - Sorry about the weird spacing on this post... blogger isn't recognizing when I press "enter." must be the bad day fairy again (:

Wednesday, March 30, 2011

she's got her new shoe on...

Hey Friends (:

Well apparently some of you weren't praying after my post on Sunday (kidding!) because Monday morning we picked Eve up out of her bed, laid her in our bed and with both hands she slid her cast RIGHT OFF of her leg! I gasped.. stared.. gasped.. oh great!

We took a look at her foot, which was right back in it's pre-surgery, pointed position. I tried to stretch it back like the doctor did the week before we left as he re-casted her foot, only to hear Eve scream and her foot to barely budge. So I called the doc, who said he could refer me to a doc in Florida (with no insurance) and instead John took Lyla on the boat while I searched for flights, booked flights, got new medical authorization forms for Evie's oxygen, got a new letter faxed to and from Evie's doc, took a few migraine pills, and ate all of the candy in my grandparents kitchen (:

So instead of flying home right now, as we should be, we flew home first thing yesterday morning and got to the Orthotics store at 12:30pm. The orthotic specialist really worked on bending her foot back to it's flexed position, and put her first brace on. Honestly, it was just as torturous as when he fitted her for the brace two weeks ago, probably worse since her tendon had a few days to tighten. We are supposed to take the brace off and re-tighten it several times a day in hopes that it will stretch back out and we won't need to re-cast or re-do surgery. She's in a lot of pain, and isn't sleeping much.

Above are a few pics of her "new shoe," note how much smaller it is than her cast! Also is a picture of her on the flight home enjoying some apple juice. She didn't seem to mind getting up at 4am to catch a flight! (:

Most importantly, I owe an enormously huge THANK YOU to my grandparents, who flew, housed, fed, and entertained us for 8 days giving us the most relaxing fun-filled break we've had since before I was pregnant with Evie. I don't think we even realized we needed a break until we got off the plane and took a deep breath of fresh salty air. We ate delicious meals outside, played in the sun, took much needed naps, and most importantly got to spend valuable time with Grandma Dellie and Papa Bob. I don't know many people who are as generous with the gifts God has given them than my grandparents are. We were blessed beyond words by their generosity, care, love for us, and for our kids. You guys are the BEST!!

Love you friends, Eve gets her other "new shoe" on Monday, hopefully it's a little easier to fit (:


Sunday, March 27, 2011

God is in the small things...

Hello from sunny Florida!

I need to be cautious about how indulgent I get about our weather down here... It was really hard for me to read other people's blogs about traveling when Evie's health was so unstable and we couldn't get more than 15 minutes away from Children's Hospital! I'll keep it short: hot, sunny, clear skies, ocean waves. That about sums it up!

We have had the most marvelous trip... it's almost ridiculous how amazingly well everything has gone so far. Like I said, God is in the small things, and he has definitely taken care of us this past week! I know some of you out there are praying for us, and I have felt surrounded by God's calming presence more than once... and with 2 kids under the age of four that isn't easy!

We decided to fly straight to Tampa and drive down to my grandparents house this year, since Tampa is a direct flight and I was a little nervous flying with battery powered oxygen. We had no disasters, no delay, no spills, no huge messes, barely any tears, and the girls were completely content the whole way! Besides the security guard drug-swabbing Evie's casts (who thinks of that!?) we went straight through security. Evie slept and Lyla narrated our flight to the amusement of everyone around us "Are we flying yet?" she would say, "is it bumpy like the ground or smooth like the sky?" I would ask her, then she would know if we were flying (:

After our flight we were driving down the coast with the Gulf of Mexico in clear sight and Lyla said "guys, I think maybe we should just stay here..." Good thinking Lyla!!! Yesterday we were driving in my grandpa's fancy car, and she said "mom, I really like your new car better than your old green one" ha ha (: She has good taste! It's funny how the mind of a kid works when you put them in a completely different setting (:

Evie is doing great. I know I constantly say that she is the most content child on the planet, but I don't think you understand it until you spend some time with her. My grandparents keep commenting on how happy she is, and they are right. Some people learn to enjoy life at such an early age, the rest of us should take note. The big things become little things when you face mountains like she has (: My one prayer request is that her right cast holds up. Her foot has scooted up about an inch inside her cast, which means her food isn't positioned correctly. The plaster of the knee and ankle have gone soft from her banging her feet on the ground and crawling, so let's just pray that her foot slides back down and stays there!

I was working out at a little gym this afternoon and starting talking with a gal there (yes, I am the annoying person at the gym who bothers everyone who wants to listen to their music and be left alone!) and of course Evie came up. We both teared up a little when she told me that her daughter's son had been mis-diagnosed in utero with Down Syndrome and we talked about how tough that is in a pregnancy. So I gave her my blog address and have been nearly in tears ever since... just considering God's grace in the fact that I even have a blog to continue to write 18 months after we thought Evie's story was nearly over.

Oh yes! and Brian is continuing to work on our story... it sounds like he has some big plans in the works. I am genuinely thankful for his hours of hard work and am praying that God blesses him in a big way. I am not going to elaborate until things are signed, sealed, and delivered, but I am thankful for him even if things fall through (: I always wonder what the article would be called from a "miracle" standpoint, a "medical" standpoint, a "hug your babies" standpoint, an "i love my kids" standpoint... good thing I'm not writing it! I think my story would be called "my life under construction: tears, prayers, laughter, doctors, blessings, life lessons and God's grace."... doesn't sound very professional does it!

Love you friends! Thanks for checking in! Here are a few pictures from my phone, I will download the rest from my camera when we get home.

Lyla swimming "all by my own self!"

the girls hanging out before some family came over for dinner

sand and sun!

Saturday, March 19, 2011

ending on a good note (:

Wow, this week was a week of ups and downs!

Last week was a good one, I substitute taught for my good friend in her middle school math class. Boy did it feel good to get back into the classroom for a day! It has been really hard to sub this year with all of Evie's appointments, but I need to try harder to fit it in (:

This past week my best friend from 7th grade came into town to spend some time with her family. It was SO great to catch up, take a long walk, and just see each other for a while. She is always so encouraging with Eve and all of the other things going on with us.

Eve got her new casts on Tuesday... I thought about blogging that night, but the only post title I could think of was "torture!" It wasn't our finest doctor's appointment... Starting with the sawing off of the old casts, then fitting Evie for braces which really hurt as they were continuing to stretch her feet backward, then putting the new casts back on with more stretching, holding and screaming. I don't think we've had a full hour of screaming like that in a while, but it's done, the new casts are doing their job, and are nicely painted (:

When we left the appointment I asked the doc how long Evie would have to wear her braces, and he said "6 weeks.... oh wait, probably a couple years." For all of you medical students out there, START with 5 years, then go to a couple. So my hopes of having Evie "device free" when she gets her oxygen off (someday) were crushed. But I am constantly reminding myself that Evie has already done better than anyone could have expected and a couple years could be 6 months, or it could be 5 years. Who knows. So the casts come off and braces go on April 4th.

Lastly, we are leaving for VACATION tomorrow!!!!!!! 10 days of fun in the sun, going to see my grandparents. The girls absolutely adore Grandma Dellie and Papa Bob, and I can't wait to spend some good quality time with them. So off to the store to pick up some vitamins and AirBourne to keep all the travel germs away! Traveling with Evie, casts, oxygen, and her meds will be very interesting, but we will get there eventually! (:

I will try to update while we are gone, and post some good pictures!

Love you friends, thanks for checking up on us (:

Job 5:9 "He performs wonders that cannot be fathomed, miracles that cannot be counted."

Tuesday, March 8, 2011

praising... waiting... and accountability

Hi Friends!

Evie is adjusting remarkably well to having two casted legs! She is crawling, rolling, playing the drums on her casts, and making plaster rainbows on the walls: she rolls to the nearest wall and rubs her casts side to side... making beautiful white lines. She has endured enough that I just can't take away her joy of ruining our walls (: It should wash off. Unfortunately, she is now on her 3rd antibiotic, trying to get rid of this nasal congestion. They finally ordered a sinus x-ray yesterday to confirm that her sinuses were clogged, and they looked pretty nasty. We are hoping this 3rd try will do the job.

This has been a God filled week (JOY!) here are a few highlights...

Praising: We were driving to church the other morning listening to the radio when Chris Tomlin's song "I will follow" came on, and Lyla started singing softly "where you go i'll go....where you stay i'll stay.... when you move i'll move.... i will follow you." With eyes full of tears I was reminded that this little sassy 3 year old is soaking up Jesus here and there and I overflowed with joy.

Waiting: I am just in awe of how thankful I am that Evie's surgery was delayed and that she had the chance to learn to crawl. It is such a blessing that she is mobile, even with casts on. God knows what he's doing doesn't he? He stirs my heart with so many ideas and then says "pray. read my written word. and wait for the perfect time." I so badly needed this reminder. Next time I am mad about something being delayed I want you all to remind me of this very post! (:

Accountability: the Bible study I am doing this session is on the life of David, and this past week I was reading about accountability. When David wasn't sure about something, he asked for advice from others who could keep him accountable. I really wanted to get my heart in the right place before Bible study even started in January so I dropped my 3 most watched tv shows (that I am embarrassed to even post!). I was really convicted that I need to fill the remaining space in my brain with a good healthy dose of God's word. When I started praying about adoption and leading a Bible study, God brought 3 amazing women to mind, we'll just call them Carla, Mary, and Suzanne (: These women have dedicated their lives to honoring God with their time, resources, and healthy brain space. When I am tempted to watch the Bachelor (whoops I slipped!) I honestly think "What would ___ do?" I am so blessed to have women in my life who point me in the direction of God's everlasting love. They actually don't even know they are my people, but I soak up any time I get to spend with/email/chat with them.

Last but definitely NOT least, Brian came to Omaha last week and shot some great pics of Evie's casts (:

Love you friends! Thanks for loving us, and keeping Evie in your prayers.

we are stuck with sponge baths until these things come off...
soak up that clean baby smell

love my girls