Thursday, September 26, 2013

Mayo Clinic Visit - Thanks for your Prayers!

Thanks so much for your prayers leading up to and during our visit to Mayo Clinic!  The Lord gave us so much peace and rest this week!

A list of praises...

1. Will had to be sleep deprived and fast without milk for a long period before the EEG.  Though it was a recipe for meltdown, he weathered this like a champ!  He didn't even cry.  Just whimpers and lots of yawns.  



We played lots of silly games to keep him smiling and awake.  He was a smiley, happy guy 95% of the entire day, so his joy encouraged our hearts a lot.

2.  The EEG was NOT scary at all.  They put a little cap of electrodes on Will's head and squirted in some saline solution - just annoying to him, not painful.  I got to hold him, feed him and have him fall asleep during the EEG, so part of it was just a snuggly nap time!  The other "awake time" part, we read Dr. Suess books and played.  It was super chill.  WAY different than my expectations!


3. The neurologist we met with was so kind and helpful.  He spent a very long time with us answering any and all of our questions.  He made us feel less crazy for advocating and fighting for Will!  He did a good job of making us aware of the risks Will will continue to face, but he was gracious and encouraged us to take it one day at a time.

(After the EEG cap came off, it looked like Will had had a fight with a suction-cupped octopus!)



4.  The EEG results were about as good as they could have been.  There WAS a small difference between the right and left side of his brain, which just showed him that Will DOES have strokes, or dead parts of his brain.  BUT, there was no evidence of seizure activity, which is a huge praise!  He encouraged us to start to wean Will off his medication, which is also exactly what we had hoped for.



5.  We had felt a little skeptical about our neurologist in Sioux Falls, but didn't know whether to stop our care with him or not.  Just a week ago, we received a letter in the mail saying that he had randomly retired...so we're seeing that as the Lord closing the door for that doctor and making it more clear that Mayo is a good option for us.

6.  If anyone is going to have a stroke, the BEST time is in the womb (or right after birth).  The brain hasn't mapped hardly anything yet, so that gives the baby plenty of time to rewire his/her brain and compensate for the dead areas.  We hate that Will had 2 strokes, but we are encouraged knowing his brain was Intelligently Designed to heal itself.

7. Overall, Will is meeting ALL of his developmental milestones, which is a huge miracle in itself.  We are SO enjoying this season with him!

Continued Prayer Requests...

1. The neurologist was a little concerned about Will's peripheral vision.  Will may not end up having the full spectrum of vision that he's supposed to.  Please pray for the Lord to heal this area of his brain and restore whatever vision he's lost.

2. Will is still at an increased risk for epilepsy (continued, random seizures) and cerebral palsy.  He may also have trouble with spatial reasoning (whatever that is) and some more critical thinking that will develop (or not) as he gets older.  Continue to pray for the Lord to cancel these potential outcomes and give Will supernatural ability for the glory of God.

3.  As we start to wean Will off his meds, pray for NO seizures!  This is scary territory for me, but we know the Lord is in control.

4. According to science and the medical field, these dead spots in his brain will never come alive again.  But, we know the Lord has a history of restoration and resurrection!  We would LOVE to see the dead spots come alive and heal, again, for the glory of God.  

And now, for some shallow happenings during our Rochester stay...


To celebrate our happy news at Mayo, we had an impromptu pizza party in our hotel room.  We REALLY miss Papa John's pizza (we had one in Sioux Falls), so we got to reminisce a bit!


Will celebrated by doing his favorite activity - chewing on his "piggies".  He was also kind enough to offer a foot to daddy, in case Mark wanted in on the fun.


Since we moved to a small town with NO Starbucks, it has has become a major luxury and treat.  Mark brought me breakfast and an Americano in bed!  Well...it would have been "in bed" if I hadn't already been up feeding Will.  Rats.  Life with children...


This what a hotel room looks like when a four month old stays with you.  Yes, Will slept in a pink pack 'n' play.  Don't judge him.  He is very comfortable in his masculinity.  Real men sleep in pink pack 'n' plays.


Oh...and this happened.  First time ever.  Triple hooray!


This was also a first time.  I liked it so much, I begged Mark to come back the next day on our way home.  Two Chipotle meals in two days = just awesome.


A little diaper change at the truck stop on the way home.  It was gorgeous out, so we figured our little Bug could use some fresh air.  


Who knew diaper changes could be so cool and stylish?

Needless to say, we made it home safely and crashed in a pile of dirty laundry, spit-covered bibs, messy luggage and sleepy bodies.  We slept well that night!

Thanks for your prayers.  You guys rock.


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Sunday, September 8, 2013

Thanks & Continued Prayers

Hello Friends!

Thanks for your faithfulness in praying for our little family, and especially for Will!  The Lord has been using you to partner with Him in bringing about healing for our little guy.  We are super honored to be a part of a believing and praying community.  You're a blessing to us!...like BIG time.

We have much to be thankful for these days.  Will's doing GREAT.  I've been trying to record some of our praises, thanksgivings and little miracles on my blog at ldeyounge.blogspot.com.  I won't be updating Caring Bridge anymore, folks, so if you're interested in the continued story of God's faithfulness in Will's life, just bookmark my blog or subscribe by email.

Please continue to pray for us.  We are going to Mayo Clinic in Rochester, MN on Tuesday of this week for some tests and second/third/fourth opinions.  Will will have another EEG to test his brain activity to see if he's still prone to more seizures and/or if he has been having seizures that we don't know about.  (This is the most scary part for ME - just thinking about him having those electrodes on again brings back too many yucky memories and thoughts of despair.  I feel like throwing up just thinking about it!  I think the tests will be harder on mama than Will. :)  )  Anyway, we'll also be talking to the doctors about his future, prognosis, development so far, and medication.

I don't know exactly how God will choose to use Will's life, but I am selfishly praying that the EEG would come back totally clean and that his development so far would amaze and totally stun the doctors for the Lord's glory and fame.  We will be excited to tell the docs about how God has been healing him!

I don't really want to tell you HOW or WHAT to pray, because I'd rather you just ask the Lord what's on His heart for Will and our family...and then have you pray those things.  We'd just love for you to stand in the gap for us, especially on Tuesday.

Thanks a MILLION.
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