Thursday, July 31, 2014

All Good News

Maggie had an MRI today that showed an overall decrease in swelling.  Also the cyst on the right side of her brain had decreased significantly and the one on the left was just a little bit smaller.  This allowed her to be finally transitioned to boot camp the rehabilitation floor where she will be off the monitors and scheduled for intensive therapy at least 3 hours a day.

Maggie's physical improvements have resembled her MRI changes.  Every day she is more verbal and more active.  This includes her decreased need for sleep.  These 2 pictures were taken on different evenings, in different rooms, and late at night when Maggie was having a private party long after bedtime.



On another note, our favorite fellows wrapped up their service with the hospital today.  We will miss Sylar, my Mandarin speaking friend, and the doctor with great shoes (I leave their names off so it doesn't show up on some google search).  Anyway, they all came by to say goodbye and even stayed a minute to chat.  I love that Maggie has made an impression on them and that they will most likely remember her long into their practice.  One of them is coming back Saturday on a social call to play his guitar for her.  How sweet is that?  

This is the point in her recovery when the other doctors go ahead and admit how much better she is doing than they ever expected.  One of those conversations was today with the doctor who treated her in the Cardiovascular ICU.  He was the one who took her personally down for one of her CTs several weeks ago.  We saw him in the MRI suite and he admitted that he never thought she would look as good as she currently does and that her early films don't support her presentation.  Every time someone says something like that, I have the opportunity to brag on all of those who are praying.  God has worked a miracle in this child.  Thank you for your prayers. 

So now we start the next chapter of this journey.  Please continue to pray for us.  I would really like a few days at home all together as a family before the kids start back to school.  




Tuesday, July 29, 2014

One Year Ago Today

It was one year ago today, Monday July 29th, 2013, when my team was starting our first day at an orphanage in Baoji China.  I remember clearly that everyone had gone to their assigned rooms and I was casing the place and getting a feel for what their physical therapy needs were.  I walked outside where there was a class of one year olds in baby walkers all tied together (to avoid escapees).  I glanced over the sea of black hair and brown eyes and there was the cutest set of dimples I had ever seen.  Maggie was looking right at me as if to say, "you found me".  I knew in that moment that she was special and the rest is history...

(This was taken the next day when I was working on my computer and snatched her for a screen shot to send Trent so he could see this precious little one who stole my heart)


We have had several good days in a row now.  Every day she seems a little bit better and a little more functional.  They postponed our MRI until Thursday because CV Anesthesia is no longer available tomorrow.  That then postpones when we can start on the rehab floor.  It is a bit frustrating but there is really nothing we can do about it.

Prayer Requests:
1. For the MRI to look BEAUTIFUL.  It would be awesome if her abscesses were gone.
2. For continued recovery to her previous functional level.
3. For stamina for Trent and I as we try a new system of switching off every 24 hours.
4. For her WBC count to improve.  It is a little low and they are re-testing it on Thursday.  I am really not sure of the significance but the infectious disease doctor wasn't pleased with it yesterday.



Sunday, July 27, 2014

Learning to Conquer

I have been thinking lately that my experience lately with God as Father has felt a lot like how I parent my tween. As a special needs kiddo walking through that stage of life where everyone wants to be cool and sometimes they achieve that by picking on those who are different, Jack has had some tough days.  My first response is always to comfort him.

2 Cor 1:3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort. 


I will hug him and tell him how sorry I am that he is having those experiences and I give him a place to be real honest with me. Like my conversations with Jack, I have had some opportunities to be real honest with God these last few weeks too.  Having a safe place to say what I am thinking and how I feel about what has happened with Maggie has been key to my continuing to seek God authentically through this experience.

My next feelings with Jack are usually to want to rescue him from what he is experiencing.  I have thoughts of withdrawing him from school or other scenarios where life is hard, but then my lenses of eternity set in and I realize that rescuing Jack is not necessarily what is best for him. There is a greater goal and purpose for his life and sometimes I have to let him walk out his trials in order to develop the character he needs to achieve his purpose.

James 1:2-4 2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


Like my parenting of Jack, I don't think God has rescued us from this situation because He desires to do something in and through us.   I believe He is building a testimony for Maggie and that even as a 2 year old, He is using her to draw others to Himself.  He is also turning her into a fighter and He is going to use that to make her into the person she needs to be in order to tackle whatever comes next. 

My message to Jack always ends as one of empowerment.  I know he has what it takes to conquer what life sends his way and through Christ he can do anything.  The same is true for Maggie, the same is true for me, and the same is true for you.

Phil 4:13 I can do all this through him who gives me strength.





I LOVE Mandisa's music because it makes me feel like I can face whatever comes my way.  This has been one of the anthems of hers that I have listened to when I have felt defeated through this.  We were created for a purpose and life's trials aren't always set backs but steps toward developing us into the people we need to be to live the life we were called to live.   





PRAYERS-  My little warrior has had 4 great days.  She has continued to improve without set backs.  On Monday they are going to transfer us to the rehab floor for 4 planned weeks of intense recovery.   It would be awesome if she could break records and wrap that experience up in 3 weeks so we could have a few days before the big kids go back to school.  

Here is a picture of her playing with a good friend of mine.  Thank you again for all of your prayers. 


Thursday, July 24, 2014

Lenses

God is regularly teaching me that the quality of your life is not dictated by your circumstances but instead by which lens you view them through.    I say "regularly" because I seem to have to learn this one over and over.

When I am at my weakest and most vulnerable, I tend to put on my entitlement lenses.  Those are the ones that tell me I was entitled to a summer with my kids complete with swimming, movie nights, vacations, and good times with friends.  They tell me that Maggie had already been through enough and that this extra dose of suffering is an injustice to this child.   Those lenses were purchased at the store of the sheltered suburban life that was built with the bricks of comparison.  They tell me that success is measured in accolades and acquired possessions and that no matter how hard I try, I am never going to measure up.   I hate those lenses but somehow I hold them in my pocket for safe keeping.

   When Trent I were first married, I went years without updating my eye glass prescription.  When I finally did, I remember walking outside and noticing the leaves on the trees and the details all around me.  I had seen it before but I had slowly grown so accustomed to my blurred vision that I didn't realize it wasn't normal.  Trading my old lenses for the right prescription brought everything into focus.  The same thing happens when I trade my lenses of entitlement for my lenses of eternity.  

Experiences like mission trips, adoptions, loss of a loved one, and long stays in the ICU will give you that new set of lenses to view life with.   You are suddenly reminded that life on earth is short when compared to eternity.  You learn to see disasters, abandonment, and other crisis as an opportunity for God to reveal Himself as redeemer.  You see your possessions as gifts instead of trophies and you use your natural abilities as opportunities to do good instead of reasons to draw attention to yourself.  You are less likely to shy away from those who make you uncomfortable and more likely to take their struggles on as your own.  And you smile.  You smile because you know that there is a greater purpose.  You smile because you know that you don't have to worry about measuring up (like you do with the entitlement lenses) but you accept that you have already won in Christ.

I am not saying that life through the lenses of eternity is easier.  Often those who wear those lenses have seemingly more difficult days but they do life better because they have hope and perspective.

That is what God is teaching me today as I watch those around me and ponder what I have been given.  Thank you for praying for Maggie.  She is continuing to improve and we are hopeful for no more setbacks.



Wednesday, July 23, 2014

Better Than I Hoped

So today went a lot better than I expected.  I know that sounds awfully pessimistic but when we were transferred back to ICU, I kinda lowered my expectations.  Maggie started on Heparin today so we were monitoring her very closely for neural changes but she did great and was even spunkier than usual.  Her pain level is down in her arm which helps a lot.  They did not perform her Wednesday MRI today because they got the CT scan last night and plan to repeat that tomorrow.

On a fun note, I was able to go home today and do some laundry and even take a bath in my own tub.  It is the little things that really make a difference for your state of mind.  There was a present waiting at my house from a good friend for Maggie.  It was an all in one instrument and she loved it.  It was fun to see her playing for once.


Overall, she was much happier today with her pain under control.  Tomorrow morning bright and early, they will repeat the CT to make sure the Heparin is not causing any new bleeding.  If it looks good, we expect to go back to the step down unit.    That would be amazing because those rooms are so much more comfortable.

Thank you for all of your prayers.  We are ready to be done with scary set backs and just move toward recovery.  She is moving her left side more and is looking to the right now.   We aren't sure what she can see but it is certainly an improvement.  


As always, you guys are amazing and continue to blow us away with your encouragement.  Thanks for loving my girl.

Tuesday, July 22, 2014

Up--Down--Up--Down--Up

You know that part of the roller coaster where you go through a series of ups and downs that make your head spin so much you feel sick?  Well I think that adequately describes the last few days.

Let's see,  Sunday night I sent Trent back to the Ronald McDonald House to get a full night's sleep with the plan that he would relieve me in the morning.  Well at 5:00 I get the news that we are moving from the ICU to the PCU and oh yes your husband called and he has pink eye so he can't come back until he has been on antibiotics for 24 hours.   I think my response was something like, "Are you kidding me? Pink eye? When was the last time a grown man got pink eye?"

So back to Monday, Maggie started having increased hallucinations.  They performed an EEG and discovered seizure activity in her occipital lobe.  We aren't sure why but a change in her meds has helped with those.


Monday afternoon she started complaining of left arm pain and by night time was really hard to console.  I noticed her oxygen sats were dropping into levels that I had never seen them before.  That activity and discomfort continued into today.  They performed an ultrasound and discovered a clot in her arm.  At first it was reported as deep and then as more superficial.  

This is significant for many reasons.  Her onset of symptoms 3 1/2 weeks ago was left arm pain and now it was back.  We had ruled out clotting disorders after both areas of her brain had grown the same strep bacteria and the clotting tests came back negative so why a clot again?  And what is up with her oxygen sats?

Most of the day was a meeting of the minds.  We were thankful for one MD who really stood up and took charge.  He reminded me of Gru from Despicable Me.  I kept waiting for him to finish his sentence with "mom I made a prototype of a rocket out of macaroni".  If you haven't seen the movie, you should and then you would know what our doc sounded like.  He was great and went to bat for us with all of the other teams who were disagreeing on the best treatment. 

They performed a CT of her head and chest and reported no pulmonary embolism, the areas of her brain are either unchanged or just a little bigger, and nothing on her occipital lobe to explain the seizures there.  This landed us back in ICU to begin a low dose of Heparin.

Here are ways you can pray:
1. That the Heparin would address any clots but not cause bleeding.
2. That she would have relief from her pain and get some sleep.
3. That the areas on her brain would really begin to heal.
4. That God would show Himself to us in ways that we can't miss.  That He would combat the lies of the enemy in our heads and bring peace to our souls.
5. That my other kids would be fine and continue to have fun where they are.  Jack is with a friend and the wonder twins are living it up with my sister. 


Once again, thank you for loving my girl.  I am off now to let a baby sleep and enjoy take out pizza in the ICU kitchen with my (recovered from pink eye- thank heavens) husband (who gets the night shift tonight- Amen).  :)

Saturday, July 19, 2014

Those Who Have Gone Before Me

Different things encourage me each day.  One day it might be a donut with sprinkles from a coworker who knows my weaknesses.  Another day it will be a text from another friend or a visit from an unexpected photography client who took the time care about me personally.  All of those things are amazing and give me the strength I need for the next 1/2 hour but what really keeps me going, when I feel like I can't do it anymore, are the stories of faith and redemption from the ones who have walked this path before me.

I would love to share some of those with you because who knows they might be stories you can lean on someday too.

#1 My Aunt Mary- I have watched my Aunt Mary (who is like a mom to me) grieve the tragic loss of her husband and then her son.  She was devastated and at times I wondered if she would ever recover.  Through it all, she held onto Jesus.  She would quote scripture and tell me that Jesus was the only way she could survive.  I remember her saying that Jesus is the only one who will always be there.  Others will pass away but Jesus will never leave us so how could she walk away from Him.  Her faith has influenced me more than anyone else.  If she can hold onto and even go after Jesus with what she has endured, so can I.

#2 My Friend Joy- My friend Joy has 3 daughters with challenging medical needs.  At different points they have all been critical.   She has been sending me songs and encouraging messages through this.  She said something the other day that I have not been able to shake that I think is so true: 

"I pray that Maggie will get to spend a lifetime here blessing your family. I also want to encourage you because I have almost NEVER heard a person in this world say that it would be a blessing for a child to go to heaven...but HE has shown me that it can be so. My prayer daily is "Jesus come quickly" as in, take us all - today - now - together :) I can't stand the thought of ever sending one of them ahead of me but I know He has shown me that the world has that one wrong. He conquered death. I kind of think that if you go to heaven as a young person, while we are all horrified by something like that, all the souls there celebrate and say "how great, you only had to stay for a short while" and if you go as an old person, while we celebrate a LONG life, there you hear "bummer man, sorry you had to stay so long down there but so glad you are here now!" I may be very wrong on that but I think our world has the value of a lot of days held way too high"

Joys words remind of Philippians 1:21 "To live is Christ.  To die is gain."  
I think Joy gets it and she has inspired me to look at life with a critically ill child differently as well.

#3 The Steven Curtis Chapman Family- Okay I obviously don't know the Chapman family personally but most of us know their story and that is precisely why they give me hope.
They tragically lost their adopted daughter, Maria, several years ago but God has used her story to inspire other families to adopt and give to their non-profit.  That organization built  an orphanage in Beijing called Maria's Big House of Hope and has helped fund thousands of other adoptions.

Seeing God's redemption of their tragedy gives me hope that Maggie's suffering is not wasted.  I pray that He takes her story and uses it to draw others to Himself and to consider adoption.   I know He can redeem her suffering in ways that I never imagined and I hope to get to see that first hand.   The Chapman's story gives me hope in a redeeming God.


So TODAY's UPDATE:  Maggie was fussy most of the day but then they decided to give her the magic narcotic that turns things around.  I hate giving her such strong drugs but it really does make all the difference when she is hurting.  She seems a little stronger today but it was hard to tell because she chased off the PT and OT who stopped by to work with her.

My sister, brother in law, and father drove into town to see her and then take the wonder twins back tomorrow.  Trent let me leave and go have dinner with them and that was a real blessing.

We are still praying for complete healing, energy for the days ahead, and emotional health for all of us.  Thank you for your prayers and encouragement.