MRI results…

So we went back to get the MRI results yesterday and ended up waiting over 2 hours AGAIN (ugh!) to see the dr. for less than 5 minutes. He is a great pediatric neurosurgeon, though, so I guess we have to put up with that.

After he looked at her MRI results, he said that they would do a more extensive MRI next summer where Elisabeth actually goes “under” so they can see every detail. ( The ones she has been having are rapid sequence MRI – not as detailed). The short is the fluid hasn’t drained one bit more since her surgery 2 summers ago, however she continues to make progress and learn. He was very pleased with her jumping/hopping, etc.

So next summer, one of his younger partners (he is retiring) will decide if she needs surgery or two surgeries…so more waiting.

In the meantime, as long as no heachaches and keeps progressing, nothing to worry about. oh my. Not the answer we were hoping for, but it’s not a bad answer either.

For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, “Abba, Father.” The Spirit himself testifies with our spirit that we are God’s children.
—Romans 8:15–16

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Waiting…

So we went for Elisabeth’s MRI last Thursday (June 19).  We signed in, and went straight into the MRI tunnel.  And this time she went in all by herself! Big girl.  Then we waited.  and waited.  and waited.  After 2 hours, and eating every snack in the lunchbox and reading every storybook we brought, I went back to the reception desk to ask how much longer they thought it would be.  “Oh, the dr. is running really behind today.  It will be at least one more hour, unless you would like to reschedule for another day?”  Ummm…yes please.  So we go back on July 10 to get the results of the MRI.  

Which got me thinking about waiting this morning…

So I read a devotional entitled 5 Reasons God Makes Us Wait, and I found I was rushing through it!  Haha.  I just wanted the jist of the article.  I didn’t even want to wait to read all of it.  Isn’t this so true with all areas of life?!

So for now, we wait.  and yes, it’s developing patience, perseverance, character, intimacy and dependence on God, but I’m still not sure I like it.

MRI again tomorrow…please pray

I can’t believe that I haven’t updated in so long! It will be Gotcha Day #2 pretty soon– next month.

But tomorrow is Elisabeth’s 4th or 5th MRI.  I go in the tunnel with her to keep her calm (I kinda lay next to her), and then we wait.  and wait.  and wait.  We are usually there 3-4 hours.  After the waiting, we meet with her neurosurgeon to find out if any of the fluid has drained off the brain.  We are praying for a miracle. or improvement.  But either way, the progress that she has made in the last almost two years has been AMAZING!  Praise God.  I’m pretty sure that I couldn’t learn to speak Mandarin in a couple months, then master the alphabet, and read on grade level in the amount of time that Elisabeth has been able to do it.  Yes, her last report card said she was reading on grade level…

So whatever the results are tomorrow, God has got it.  The improvement is astounding. and amazing.  and can only be Him.

Gotcha Day – today…cool celebration whoever came up with it!

What a great day…Elisabeth ate from Zen Asian Fusion twice (her fav restaurant!) – at lunch, then we brought takeout home for dinner with dad, and in the afternoon a frozen yogurt treat.  Her sister also made her a crown that said “Gotcha Day Princess” – she is wearing it to Vacation Bible School right now. 🙂

Lunch at Zen today

Ain’t nothin’ like a slushy on the beach!

Check Elisabeth’s brainfreeze face. Lol. We have totally ruined this sweet child who came to us delighted with asparagus for breakfast…now we give her artificially flavored and colored slushies. Well, she still has asparagus too…

ANYWAY, I wanted to send an update to you about something that took place this past week. A dear friend, Paige, had asked if we ever took Elisabeth to a healing service at our church, Forest Hill Church. We said that we had not, and life got busy. Last Sunday, at church, the pastor announced that they were holding a healing service on Monday night. So we went. A deacon put oil on Elisabeth’s forehead and prayed for her hydrocephalus (fluid on her brain in the 3rd and 4th ventricle).
I’m not sure what will happen, or what I expect to happen…I do know that God’s plans are not always our plans. I know I prayed for my dad to be healed from cancer and he wasn’t. That has left me a little jaded perhaps. I found myself praying Monday night, “I do have faith. Help my unbelief.” I’m not sure what else to add at this point…I’m still praying that I accept God’s plan and will, whatever it is; especially when I think I have a better one…
my mantra the past few years (stolen from Charles Swindoll) has been:
God is sovereign.
His way is right.
I trust Him.

Gotcha Day is approaching…

Several of you have asked…it is coming up on one year, and yes, there is a celebration for this day…it’s called GOTCHA DAY!  July 22, 2012 was Elisabeth Chen Sitong Kruft’s gotcha day!

We are at the beach right now, and it is glorious. Her first week-long trip to the beach – Oak Island, NC.   Elisabeth keeps clarifying, “We are on bacation now?”  (V’s are hard for her).  “What we do today?”  “How many days we stay?”  She LOVES to know the routine/schedule, so I’ve been thinking about routines and schedules.

So as the day approaches, here’s a great link to what I think we will do on her special day: http://www.adoptivefamilies.com/articles.php?aid=127

ok is the word.

we are thankful tonight.  ok is better than bad news.  Elisabeth’s fluid is still not draining like the surgeon had hoped from the August surgery.  HOWEVER, the fluid has not increased. So another MRI in 6 months.  The fluid is slightly less on the brain than it was prior to surgery, but there is still plenty of it in there.  The dr. said we will hold off on putting a shunt in for several reasons: she is progressing developmentally, her head size is in the average range for a five year old, and she is not experiencing headaches or nausea, etc.

So it’s a wait and see approach.  She could need surgery next year, or when she’s 30.  As long as she continues to progress developmentally and doesn’t have an increase in fluid, we will wait.  Some people live to 60 years old with hydrocephalus until they need a surgery. We are holding off at this point because it she has a shunt put in, it requires a lot of maintenance, as well as replacing it several times (usually).

So what to do at this point? Wait.  Somehow, that’s God’s answer frequently.  And pray.  If we have faith, God can do ANYTHING.  Hasn’t He shown that time and again?!  Pray like mad.  And who knows? in 6 months, that fluid could totally drain…

Thanks for all the well-wishes, prayers, and thoughts today.  You are good people. 🙂  It does our hearts good to know we are not alone in this.  God is good.  God is sovereign.

and as I’ve learned, His plan really is BEST…even when I think I’ve got a better one…

Tomorrow is the big day…

please pray.  At 1:45pm on Thursday, Elisabeth has her MRI to determine if further surgery is needed.  Will let you know.

Elisabeth has a Medicaid card!!!

what a long story.  if you want to stick with the title of the blog – that’s the gist of the story…

in the fall, I was talking with Elisabeth’s Physical Therapist about the cost of shoes and the inserts that she needs, etc., plus all of our medical bills coming in.  She mentioned that Elisabeth might be eligible for Medicaid.  WHAT?!  I thought that was only for lower income…but I checked it out, filled out an application online anyway. It turns out that you can be eligible for Medicaid on a medical basis only, not income.   I did read where the Medicaid benefits are only 3 months retroactive, and at this point, Elisabeth’s surgery had been 4 months prior  (unfortunately).  

A little over a month ago, a woman from Medicaid called and came to our home to meet with me and Elisabeth.  I thought, “there is no way we will get this approved…”  well, God never ceases to amaze me.  We got her new Medicaid card in the mail at the end of last week.  I cannot believe it!  That means we will have help for her next MRI bill (the end of this month), and IF she needs another surgery / shunt , we will have help for that too. God is AMAZING.  Praise Him.

This does not mean that any of our previous bills can be covered or helped in any way, but God has continued to provide our daily needs, and MORE in ways we never ever imagined.  

“But my God shall supply all your need according to his riches in glory by Christ Jesus.” – Philippians 4:19

 

WOW.

God is amazing!!!

Here is the latest update on Elisabeth’s situation for those of you praying (we APPRECIATE it!!!):

• The bills all came in from Elisabeth’s surgery, totaling close to $40,000.  From the hospital alone, the bill was $31,000.
• The bills all came within about 30 days of each other, and we have been praying like crazy…
• Insurance through Darrin covered an amazing amount of over $21,000 of the $30,000, plus a lot of the other bills like MRIs, anesthesiology, etc.
• Then the hospital told us they were sending the remaining bill to the charity department…we have been waiting and waiting to hear from the charity department.
• We just got word this week that the Charity department of Carolinas Medical Center covered over $5,400 of the remaining hospital bill!!!  Praise God!!!
• So while we still have some bills left, they are manageable and we have no doubt that God will continue to provide, as He has every step of the way.  Sometimes we have to wait longer than we would like (ok, almost always we wait longer than we’d like!), but He has always provided.

Lastly, Elisabeth goes back for another MRI on Thursday, April 25.  At this time, the neurosurgeon will decide if she needs another surgery and a shunt put in.  It is looking like that is probably the case, but God can do ANYTHING.  Please pray like crazy the rest of this month if and when you think of it…