Monday, December 28, 2009

But God...

Hi Friends (:

It's one of those days again... one of those "wow this is going to be a long day" days that turns into a "thank you Lord" day. We have appointments 4 out of 5 weekdays this week, and today we were at 2 different hospitals; the first for an EEG, and the second for treatment and an osseous survey (which is just a lot of x-rays but didn't that sound smart!?). Regardless, my precious Evie Jayne was smiling at the end of the day, and I was blessed by the many nurses who stick their smiling faces in our door during her treatment to see how the "cute baby" is doing. She is just so cute!!! I love them, and they love Evie so we're all just loving each other (:

For the biggest "thank you Lord" part of the story... I'll be honest, I was dreading today. I love the holidays... but I am tired, and my Monday list was already overwhelming me when I set my alarm last night. But I got up, hauled the two kids, diaper bag, medical bag, and oxygen tank out the door to head to Children's hospital for our EEG. My amazing friend took Lyla last minute, so I only had to worry about Evie for a few hours.
In the waiting room I met a couple and their son. After having Eve, I notice how nice it is to have people take interest in her, so I asked what they were doing there. Their 21 month son was there for physical therapy. When he was born he had a genetic heart defect, and in September he got a new heart. He was there for physical therapy because sometime after the surgery he got a blood clot and "lost his leg" as they put it... mom shrugged as she said "so we're here for physical therapy, and he's touching lives one person at a time." This family of 3 touched my heart this morning, because they were beaming as they told about their son. He may have lost a leg... but he got a heart.

So thank you Lord, for giving us new hearts... sometimes literally. I titled this post "But God" because it reminds me of my dear friend Bethany who loves this verse (i'm going to start with the verse before it): "Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us." Romans 5:7-8

Next time you are feeling hopeless, friends, remember that in our hopelessness Jesus died for you, demonstrating God's love for YOU. Thank you Lord for reminding me of your love today.

I love you friends, I'll be back with more news, and hopefully good results from Evie's tests! Thanks for praying, I feel it each and every blessed day.

Saturday, December 26, 2009

Merry Christmas Friends!

I hope you all had a wonderful holiday and had some time to thank God for all of His miracles and blessings.
I got my best Christmas present a little late... today in fact... John helped me take Evie's oxygen off and on for a few minutes while I gave her a bath, and to see her little face with no tubes was the best Christmas present I could have asked for. Wow, I love my kids. In addition, we removed her O2 while we monitored her for a few minutes and her stats stayed above 90, it was so great. Hopefully she will continue to get stronger and we can throw these oxygen tanks out the front door into the 5 foot snow drifts in our front yard!... not really, they are pretty expensive!

Signing off, I have a lot of little people to pray for tonight.

Love you friends!

Happy Moments, Praise God
Difficult Moments, Seek God
Quiet Moments, Worship God
Painful Moments, Trust God
Every Moment, Thank God
by Rick Warren
- passed on by Shanna (:

Tuesday, December 22, 2009

thank you Lord!

we are home again. the girls are sound asleep, and i'm going to join them after i do a quick read through about the oxygen set-up we have going on in our living room (:

evie is doing okay, she seems like her happy little self, but she's pretty frustrated having oxygen tubes taped to her face. lyla demanded constant attention after the home health man left until she went to bed, so i think she's doing pretty well.

i am praying this is just a fluke deal, and evie's oxygen will return to normal soon. hopefully it's not the decline of her hypophosphatasia and the weakening of her bones, but just a little lung irritation or something.

if you happen to run into me sometime soon, i will be the lady in the sweatpants who looks really tired, carrying two kids, a diaper bag, and an oxygen tank... ha ha, i love it. it makes me smile just thinking about how ridiculous i probably look, and how wonderful it is to have not one, but two beautiful daughters to lug around (:

thank you thank you thank you for praying, i am so glad to be home. i hope you experience God's blessings to the fullest this wonderful Christmas week, and take the time to marvel at Him sending his Son to earth, so that we can know Him. wouldn't it be so frustrating to be "God" stuck in a baby body? i've been chewing on that one for a few days. he must have progressed mentally like a normal baby... any thoughts? i obviously need to do a little more research. yeah that was a little out of left field! did i mention i'm tired?? (:

i love you my dear friends, and i feel humbled to know you are lifting my sweet child up in prayer. all glory to Him.

Merry Christmas Week!

Hello friends!

Well, it's almost here, one of my favorite holidays. I'll be honest, this past weekend I was filled with anxiety about Evie's condition, longing for her to be "normal" so she doesn't have to struggle with the pain of being "different,"and guilt about not adequately preparing my heart for Christmas. Basically, I was exhausted. I have gotten quite a bit of rest the past few days, helping me to remember that (a) I am not perfect, or supermom, or invincible! and (b) God made me for these girls, and them for me... even when I'm tired (:

Evie is doing okay. Treatment went well Monday but her oxygen saturation wouldn't stay above 85 after she vomited. She has been vomiting a little lately, and they are wondering if she has aspirated some formula/vomit. Her lungs sound clear, so they think they may just be irritated from some reflux. They sent us to the ER after her treatment to have her checked out, and we stayed overnight last night. We are still on the Peds floor - we have seen a pediatrician this morning, and are waiting to meet with the geneticist. He has been overseeing her treatment and will have good insight as to what we should do.

I am hoping that we can go home today, with a portable O2 sat monitor, and oxygen. Will you pray for us that we do what's best for Evie and that her oxygen will stay up? As much as I want to get home before Christmas, Evie's health takes priority. Also prayer that I won't get weary here at the hospital, and that God will provide me with grace for today. It's hard for me to be away from Lyla (even though she's having fun with Nana!) I just get worn out, and miss the semi-normalcy of our life at home.

Thanks for checking in friends, I hope you have a blessed holiday filled with God's peace, joy, and loving kindness. Merry Christmas!

I love what Mary said when the angel told her she was going to be pregnant with Jesus: Luke 1:38 "I am the Lord's servant," Mary answered. "May it be to me as you have said."
What an awesome example of how we should live.

Monday, December 14, 2009

WEEK 2...

Hi Friends (:

We are gearing up for week 2 of Evie's treatment. It will be another busy week, we have things scheduled Mon, Tues, Wed, and Friday this week. Evie has had some trouble with gagging and vomiting, but other than that she is doing really well.

If you could pray for Evie that she would continue to grow and that this treatment would work that is what we are praying for! Also for safe travels to and from the Med Center, I don't think this snow is going to melt anytime soon... and that I can stay positive and upbeat about Evie's treatment with all of the hours we are logging at the hospital, it's difficult to keep focused when I also have to keep Lyla under control.

Love you friends!!! Thanks for checking in and praying!

Thursday, December 10, 2009

so hard...

sorry i'm double posting today -

God has laid some friends heavy on my heart tonight. Could you pray for my dear friend Lindsey who lost her 8 week old daughter Jensina a few months ago? And a guy I knew in college, John, who I found out just lost his wife in an accident this past week?
With the ups and downs of Evie's condition, the thought of actually losing her is painful beyond words. If you could join me in praying for Lindsey, John and their families, and that God would richly bless them during this holiday season in the midst of their greif. They both know Jesus and I'm sure their loved ones are waiting for them in Heaven.

God is big. Heaven is waiting, but sometimes Life is so hard.

Update and Saturday...

Hi Friends,

Evie had her second injection yesterday, and so far so good! She has been coughing a bit and threw up a few times today, which we aren't sure whether to attribute to a cold, flu, or side effects of the medicine. She has been really sleepy, so we think she might be coming down with something. Prayers for healing and staying healthy please! The LIED transplant center where she will be getting her injections is just beautiful, and the nurses were wonderful. I am looking forward to receiving her injections there, it seems like a perfect fit for her (:

Also, this Saturday the Millard West DECA is putting on a Spaghetti Feed at Millard West from 5-7:30pm. They are raising money for Now I Lay Me Down to Sleep for their DECA project. It should be a great time, we are planning on getting there around 6 (: There is a basketball game afterwards if you would like to stay - we have to head out to John's work party.

Love you Friends, THANKS for checking in on us! I can't believe how far Evie has come in these past few months, Praise God for his limitless blessings (:


Tuesday, December 8, 2009

Snuggled in... at home!

Hi Friends!

Evie had her first injection yesterday morning... and it went great!!! No side effects, no allergic reactions, not a thing. Go Evie Jayne! And Lyla was relatively good most of the time for being in a small beige PICU room with no windows to the outside world... Go Lyla! John and I took turns sleeping at the hospital hotel, so one of us could stay with Eve, and Lyla could get some sleep, it was wonderful.

We start injections in the LIED transplant center tomorrow, and continue these on Monday, Wednesday, and Friday for the next 6 months. We are going to try to do them in the late afternoon so John can take Lyla home when he gets off of work at 3:30. Hopefully it will work our well, or we will re-evaluate.

THANK YOU for your prayers, I knew I was being prayed for when I woke up this morning curled up in a plastic recliner with my head on a wooden armrest, and was in a great mood! For someone who doesn't function well on little sleep, that is a direct result of the power of prayer. I have the best friends and family.

It's family time! Thanks for checking in, and I'll be sure to update soon (:

Love you all (:

AND THANK YOU Kristi and Dr. Lutz who have worked so hard to make this treatment work for us. You are amazing and wonderful.

Sunday, December 6, 2009

Packing for the hospital (:

Hi Friends (:
Well, we are starting treatment TOMORROW! It is finally here. I just realized today while visiting a friend that Evie is 11 weeks already... meaning we have been waiting for treatment to start for almost 2 months. I am ready, and nervous. We need prayers that she won't have an allergic reaction to the medication, and that her body tolerates and responds well. Evie is skipping the IV dose of the medication because of the medicine she is on for her seizures, which I am happy about. She will just get a shot, and be monitored.
We will be staying at the hospital overnight, and will be coming home Tuesday. We go back Wednesday and Friday for her 2nd and 3rd shots, and stay a few hours each time for monitoring. Then it's shots 3 times a week for the next 6 months.
I was telling friends recently that I haven't spent a lot of time going back and reading through old posts on this blog... which I should. I decided to check out "September" so I could re-post the verses we had in our hospital room:
Isaiah 40:28-31
28 Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure
the depths of his understanding.
29 He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired,
and young men will fall in exhaustion.
31 But those who trust in the Lord
will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Joshua 1:99
This is my command—
be strong and courageous!
Do not be afraid or discouraged.
For the Lord your God is with you
wherever you go.
Lamentations 3:22 - 23.
Because of the Lord's great love
we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
Revelation 3:20
Here I am!
I stand at the door and knock.
If anyone hears My voice
and opens the door,
I will come in and eat with him,
and he with Me.
wow. compared to what we were facing September 17, 2009 tomorrow is a gift from Heaven. Thank you Lord.
I don't think I'll have a computer at the hospital - I will post when I get back.
Love you friends (:

Wednesday, December 2, 2009

home again!

Hi Friends (:

Surgery went so well, no problems and Evie did great. We waited around for home health instructions, learned how to flush the port, ate dinner, and are going to bed.

Praise God that everything is great, and we didn't have to stay overnight!


Tuesday, December 1, 2009

Surgery Tomorrow...

Hi Friends,

Quick update before bed... Evie is going to have a "broviac catheter" placed tomorrow, Wednesday, at 2pm. It will provide the doctors a place to take blood samples from her during her treatment without poking and prodding in her arm. It is similar to a "port" but doesn't require surgery to take out... one round of general anesthesia is enough for me.

We go in at noon, surgery is at 2, and they will monitor her for at least a few hours afterward. She is scheduled overnight for observation, but they don't think we will have to stay.

Honestly, I am scared. We have had a lot of little procedures, but the sound of "surgery" makes me so nervous. It just sounds like a lot for a little 8 pound body.

Also, we had Evie's 2 month check up today, and she is in the 1% for weight, and 0% for height. They are going to put some more calories in her formula soon, so hopefully that will help her catch up.

Prayer requests: That God will provide the doctors with the ability to perfectly place Evie's catheter, the surgery will go smoothly, and most importantly that her body will react okay to the anesthesia, catheter, and surgery.

After her surgery tomorrow, she has her immunizations and a 24 hour urine sample Thursday, and 3 hours of tests and x-rays on Friday... gearing us up for starting treatment next week. I'll be honest, I've gotten awfully used to having her home, safe in my arms, so pray for me that I can hold it together the next few weeks.

Love you friends (: