Friday, April 29, 2011

I can...

stand all by myself!!!

finally loving these braces (:

happiest kids at the hospital (: you can't see Evie's hands because she's clapping

Hey Friends (:

Our crazy busy week was great, although I can't wait to go to BED tonight!!

A few highlights: Evie showed her physical therapist, bone doctor, and geneticist her new milestone... standing!!! Her xrays and kidney ultrasound and most of her blood numbers were normal or nearly normal, and her developmental scale test went fantastic. The lady testing her was shocked at how well she's doing compared to last time... horray!

Thanks for caring about us, loving us, and all of your encouraging notes.

Love you!

Monday, April 25, 2011

April Showers...

bring crazy schedules???

Hi Friends (:

Last week I decided to sign Lyla up for swim lessons to get her ready for the summer, and with that one addition it looks like a bomb went off on my calendar! So I put the kids down early to sit down and take a little break (:

Happy Easter! He is Risen! I have put a lot of thought into how to post about Easter this year. I barely got through the weekend without shedding a few tears whenever a song would come on about our risen Lord. Aria had a scare last week, and I was reminded of how it feels to surrender our children to God. Evie has "coded" twice in her short little life, and both times I felt so out of control and helpless. The first time I guess I was pretty helpful since I had to pump the ambu-bag to keep her breathing, but the second time a rush of hospital staff came in to save her while we stood nearby and tried our best to explain her disease and beg them not to break her ribs with CPR.

When I was pregnant with Evie I told my mom I could handle anything, except if they told me she wasn't going to survive. Obviously that news was devastating. What do you do as a mother? I had another child to take care of, I couldn't cry ALL the time nor did I want to. So I decided Eve's life had already begun, and was continuing on inside of me until it was time to go. I remember spending one night, sitting on the computer just as I'm doing now, looking at headstones because I didn't think I would be able to pull myself together enough to do it once she was gone and I wanted hers to be beautiful.

I read on another mom's blog about visiting her daughter's "doorway to heaven," her place of rest. I read the story of her dying in her mother's arms, as it was thought Eve would do. The only way I survived those few months was knowing that Jesus was waiting to take her home, and she would feel much more love in Heaven than she ever would here on Earth. God loved us so much, that he watched his very own perfect Son die to pay the penalty for MY sin, so that I could spend eternity with my daughter. To prepare a place for us to live, laugh, and spend time together forever.

So I spent a lot of time this weekend sheilding Lyla from the Easter Bunny and focusing her eyes on Jesus. It would be devastating for me if she misses the point. Yep, I'm turning out to be "that mom." (: I know we have a lot of years until she will fully understand the story, but I figure I can't erase what I fill her mind with in these formative years. Hopefully she wasn't the only kid who got a note from the ol' Bunny that said "He Is Risen! Love the Easter Bunny." I told her he is so happy that Jesus is Risen that he hides eggs in everyone's yards to celebrate, to which she replied, "that's weird!" (:

Adding to our crazy schedule, this is Eve's 3 month week of blood draws, urine samples, xrays, a kidney ultrasound, PT eval, and a doctor visit... so we will be at the Med Center every day (: After a weekend of celebrating I'm going to cherish the time we get to spend together, even if it's at the hospital for a few hours.

Love you friends! Thanks for checking in with us, you guys are the best.

PS - I am in the process of uploading pics from our camera... coming soon!!!

Sunday, April 17, 2011

what to say...

Hi Friends!

I'm still here (: Actually I've been to paradise and back in the past week... my older sis earned a trip through work to go to Orlando for a few days, so we left Wednesday morning, spent nearly three whole days laying in the sun or riding bikes, and sleeping all night. It was amazing, refreshing, rejuvenating. And how many women get a few days away with their best friends!? Not many. I'm a lucky gal.

Today I went back to the hospital to see Aria and Anita. I got a text on Friday, that she does indeed have cancer. For details I will let you check out her website so I don't misinterpret any information . I am convinced that there are many instances in which I won't understand why things happen on Earth, but that doesn't make them any less heartbreaking. Keep their family in your prayers as they start treatment and wait to go home. and that I can know how to support them. In such hard situations it's hard to know how to help.

Evie is doing well. Her braces are still on despite her many attempts to take them off and throw them away (: We have resorted to covering the Velcro with work-out bands, so she can't get to them.

I heard the song Blessings by Laura Story the other day on the radio, and it is just so relevant. I found a youtube video if you'd like to hear it. I've had it stuck in my head for the past few days, not by coincidence. So relevant to suffering, heartache and God's mercies.

Love you friends, I'll get some new pics of these cute girls up soon (:

Friday, April 8, 2011

THIS far...

Hi Friends (:

Experiencing miracles is a tricky business. I have been blessed by the miracle of Eve's life so much every day, and in the meantime have met families who are experiencing miracles right along with us. Miracles are awesome. Amazing. Wonderful. Awe-inspiring. Sometimes once-in-a-lifetime. The down-side to miracles, is we usually have to experience heartache first. Big deep painful heartache. Then comes deliverance. Miracles.

Today I got a text from Aria's mom that said "It's a miracle ! Likely neither cancer or graft v host. Going home today" I couldn't help but cry, it doesn't get much better than those three words 'it's a miracle,' not to mention the other three 'going home today.' Hospitalized families long to hear those words. On Monday Aria went to the OR to have her biopsies and tests with an 85% chance of cancer. Answers coming Tuesday. Tuesday there were no answers, but the docs thought Aria might have graft vs. host... meaning her transplanted organs were attacking her body. And today she is home, waiting for final confirmation that she has neither. Cry out to God friends, he HEARS, and he ANSWERS. and some days just SING his praises.

When Aria's mom texted me, I immediately thought of a passage we have been studying in my women's study in 2 Samuel 7, where God makes a promise to David, and David responds by saying "Who am I, O Sovereign Lord, and what is my family, that you have brought me this far?" Honestly friends, I could pray this prayer every morning. Every evening. Two years ago we were in mourning, and God has brought us SO far. Who am I Lord, that you have brought EVIE this far. That you have brought ME this far. That you have brought JOHN and LYLA this far. That you have brought our FRIENDS this far. I am so thankful that God inspired David to write those words, as a written reminder of his faithfulness and how much he LOVES us. I couldn't feel more loved. Thank you Lord.

Thank you for joining me in prayer for Evie and Aria. I just finished reading the book "Heaven is for Real" about a little boy who takes a trip to heaven during an operation in which he nearly died. When he came back he slowly told his parents about his experience, but noted frequently 'Jesus loves the children. Jesus really loves the children. Don't forget, Jesus loves the children.' Thanks for loving my kids Jesus. I need that comfort (:

and I love you friends (: You are dearly loved.

Tuesday, April 5, 2011

on the rainbow...

hi friends!

i can't believe it took me so long to post this good news.....

At Evie's 18 month check-up yesterday SHE MADE THE GROWTH CHART! 3% folks... 3%!! Happy Tears. This is the first time in 18 months we have been above the 0% line... and we even minused 8oz for her cast (:

we're on the rainbow friends... the growth rainbow.

Sunday, April 3, 2011


Hi Friends (:

Thank you for all of your encouraging words and prayers after my last post. They were blessings to me. After I sent my "bad day" post on Thursday night I decided to take a shower and relax a little. Just as I finished lathering my head full of shampoo, all of the hot water was gone and I just had to laugh. Seriously!?!? Guess you can't end a bad day with a hot shower! (:

Friday afternoon Evie had physical therapy and we were concerned about her foot, so the orthotics specialist met us at his office to adjust her brace. He moved the strap down a bit and added some sheepskin (think uggs) to make it softer. She is happier, we are happier, and the sun came out! She is in less pain overall, Praise God.

Lyla had her first soccer game yesterday, it was fun to get outside. She was pretty frustrated by the unorganized nature of the start of the season, but with time and practice I think she will really like it. We get to spend time with the most fabulous fun-natured parents, we have such a great time. Saturday night John and I got to go to a friend's birthday party and kick back for a few hours. We took Evie with us, but had plenty of extra hands to hold her. I think we even got a pic of me bowling with Evie in my sling (: It was a blessing to have some adult time, and can I just say that we have the most amazing friends??? Amazing. God knew I was going to need some awesome people to get me through this journey, and he has provided them every step of the way (you included!).

Tomorrow we have Evie's 18 months appointment (shots - yuck) in the morning, and we get her second cast cut off in the afternoon and replaced with her other brace, yay!!! The first thing we are doing when we get home is taking a BATH! She has been ordered to take sponge baths for the past month so we don't compromise the plaster on her casts and my little water baby is going to be thrilled to get back in the tub.

Insurance is... well... depressing... and it's Sunday so I can't make phone calls anyway. We'll save that explination for another time (:

Lastly, and very importantly, I have a major prayer request. I have mentioned our friends from New Zealand before and they are in need of our prayers. Aria had two 4-organ transplants in the past year and a half and now has EBV/mono, which causes PTLD or post transplant cancer. Tomorrow she has several tests including a lumbar puncture and two biopsies that will tell the family if Aria has cancer. The docs think there is an 85% chance she has it. Will you lift their family up in prayer with me? Let's pray that Aria does NOT have cancer and that the tests are conclusive (there is nothing more frustrating than an inconclusive test!) Also pray that the EBV clears and Aria can go home. Her parents are doing 24 shifts at the hospital, which is exhausting. I went and saw Anita today and she looked amazing despite the circumstances. It's amazing how God gives us grace when we need it. You can check them out at if you are interested. God is good, he heals, he protects, and provides strength to get us through the storms of life.

Love you friends, thanks for joining me in prayer, and checking up on Eve!