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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13 comments

  1. just saying... the picture of will smiling with the suction cup marks?.. he looks like me when i was a baby. looks like he got the good genes in the family. :)

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  2. Love the pictures of the diaper change outside. Continued prayers for your family. I will show them to Mark's grandma Bertha.

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  3. SO happy to hear of God's goodness and healing for little Will! Loved the pictures and wow, he does make a diaper change look super cool! :-) He must get this from his Auntie Naomi, LOL (The coolness, not the diaper change)
    Will continue to pray for Will

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  4. Love the blog and all the updates! Just wanted to encourage you a bit... I married a wonderful man 2 years ago. He was born with CP due to birthing difficulties. Of course the Dr. told his mom and dad worst case scenarios and all, but today he works on the farm with his dad, drives cars, trucks and machinery, married and has 2 children, graduated from Hawkeye Comm. College and the list goes on. I am so blessed to be his wife and a part of his family! The Dr's do know a lot, but don't underestimate Our God and the miracles He can do and the Grand plans He has for precious Will. My Husband, Nathan, has issues with his right arm, leg and foot, but it doesn't stop him! He can even change diapers! lol :)What would seem very hard for us to try to do one handed, he figures out how to do it! I know your little Will is a fighter, so hang on the Hope that our Father has a great plan for His life no matter what all the tests and experts say. Love from Ionia, IA! Kim Seamans (Nemechek)

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  5. He is looking like Liza. He is such a handsome boy. Glad for good report and hope things continue that way My prayers continue for Will and you guys are swell parents. Love you. Marv and Sandy

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  6. awesome news, Liza. So sad I missed his dedication saturday....and feeling like a loser friend for not communicating with you about that. Life around here feels a bit haphazard at best. sorry. Think of you often....and love you even more as a mama.

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