Luke's brain

This might be the most challenging blog entry to write. On one hand, to finally know what is wrong with Luke's little body is a huge relief.  But on the other hand, it comes with heartache.  We spoke with the neurologist this morning.  At this point, the lack of Luke's Corpus Callosum seems trivial.  The main concern is Luke's lower part of his brain is small and this empty space is filled with a large amount of fluid.  You can see the above scan, where the black is, is where brain matter is missing and the fluid has filled the void.

He said it is hard to predict what the future holds.  Luke will have delays.  In either specific areas or in all.  He said there will be a limit on how much he will be able to do. As far what he actually does, we will have to wait and see.  Again, we are back to that wait and see.

I've finally realized that I can no longer bargain with God. It isn't, "Please God don't give me anything more," or "Please let this be all," or "Please God let Luke's hearing loss be okay later on."  Instead, it is, "Luke is yours Father.  You are in complete control.  May your will be done. Thank you for him." 

Stefan and I are completely back into that first stage of grief.  We are saddened, by this change in our plans, and are really sad that Luke may not get to experience life like a normal kid.  Satan is at work, and I ask for your prayers that all his evil thoughts be banished from us. 

I know that our heavenly Father has a wonderful plan for our special family.  That he pre-selected Stefan and I to be Luke's parents, and that he chose wonderful siblings like Addie and James to do life along side Luke.

We ask that you continue to lift up our family with prayers.

Love,

The MN Juliens

Agensis of the Corpus Callosum

The MRI showed that Luke's Corpus Callosum never connected.  This is the part of the brain that connects the right side with the left side.  This diagnosis is a wait and see game.  There are some patients that never knew they had this until having an MRI later in life, and then on the opposite end, developmental delays. 

Even though we have answers now, the answer leaves us feeling very sad. Sad is putting it mildly.  We were distraught. The evil one kept putting all kinds of negative thoughts into our heads last night.  It's easy to go down that road, so instead we just kept praying all evening.  Asking God to give us peace, asking God to watch over little Luke, and most importantly, thanking Him for the blessing that our little one is to us. 

Luke is such a strong, tough little guy! We ask that you continue to lift our family up in your prayers.  At this point we are meeting with our neurologist soon, and then it's back home to just enjoy and watch Luke grow and develop.

With much love, The MN Juliens

Recovery

We are sitting in the recovery room right now.  He is quite uncomfortable and has a bit of a bark to his cough (due to being intubated).  He successful gobbled down a bunch of breast milk, but is currently squawking like he needs more.

The MRI results may possibly be done later on tonight.  The doctor on-call will keep us updated.  The anesthesiologist said nothing major showed up on the MRI, but they send it out to the radiologist to do a more in-depth analysis. 

Thank you everyone for your prayers.  Stefan is going home to be with Addie and James and I'm staying over w/ Luke tonight, as he needs to be monitored for 12 hours after sedation. 

Lots of love, The MN Juliens

Psalm 136

As I write this entry, Stefan and I are anxiously waiting in the family room down at Children's Hospital.  A nurse just came out to let us know that they just did his circumcision fix, and are now just starting his MRI.  It will take about an hour (which seems like an eternity on our end).

Pre-MRI.  He was not happy and VERY hungry. His last feeding was at 3:30am, and he didn't go under until 11:15am.  He'll be a hungry little man when he wakes up!

I went to read my devotional for the day, and it was "Give thanks to the Lord, for he is good.  His love endures forever." - Psalm 136.

God knows exactly what we needed to hear right now.  And that was, we need to praise him.  For who he is.  For sending his one and only Son, to save us and for allowing us to have the Holy Spirit.  Our Bible Study is studying the Holy Spirit right now.  On Sunday, our main topic was our prayers and how they should be praise filled, even before we God reveals the outcome.  Our God is good no matter what the outcome.  This morning, our dear Addie asked, "Mommy, what happens if God doesn't answer our prayers?"  I was able to share that God's plans are perfect, and even though it may be disappointing, he promises to love and always be with us, and that he works all things for the good of those who love him.

Stefan and I are able to praise God, right here, right now.  For the blessing that Luke is in our life.  Our prayers are also that everything on his MRI check out.  This is our desire.  And we can trust that God does know the desires of our heart and hears our prayers.

Thank you everyone for your prayers today!  Lots of love, The MN Juliens

Smiles, smiles, and more smiles

What a wonderful moment that I'll never take for granted anymore!  Seeing Luke smile, real smiles, over and over!!  After a VERY long morning nap (he's in the midst of a cold), I fed him and then put in his hearing aids for play time.  I was singing songs, in a very low voice, and he broke into multiple smiles.  They kept coming! Grandma, James, and Addie were all able to see his smiles as well.  :)

Our friend Jessie also graciously came over this afternoon to do a quick assessment and give PT tips to me.  It was great to go over neck muscle and arm/leg muscle tone exercises.  Thank you Jessie! We are so blessed to have wonderful, smart PT friends! :)

Luke

It is such a blessing to watch our little Luke grow.  Addie and James are the most amazing siblings, and their interactions with him are so precious! 

So many prayers have been answered these past 2 weeks.  Luke continues to feed really well, and he is actually enjoying it!  He can feed, burp, and play! No more fussy time, throwing back his head, and bending his back in a C.  We only gave a handful of Zantac doses, so all I can chalk up the change to is prayer and Luke getting bigger.  He over 9 pounds now, doubling his birth weight.

He is interacting more with us.  He holds a gaze for longer periods, smiles (we usually can catch one a day), and likes listening to toys and his mobile with his hearing aids in.

His neck muscles keep getting stronger every day.  He is enjoying tummy time and having his sister lay down next to him and "chat" with him.

As of now, I am scheduled to go back to work on March 10th.  Please pray for this transition for our family.  Even though I am excited to get back and see all my wonderful students, it's always hard to go back after leave.

Thank you again for your prayers!  :) The MN Juliens