Thursday, September 24, 2015

Infantile Spasms

On Tuesday morning the Neurologist and his team came in and informed us that Silas had Infantile Spasms.  I didn't think it sounded too bad but as they continued to talk and inform us of what it was I remember going a bit numb.  What?  I'm not sure I'm really understanding what you are saying...  Infantile Spasms is know to be a very rare and hard to treat form of Epilepsy.  I remember hearing that there were great chances of developmental delays and more Epilepsy in the future.  Our next step was to get an EEG done to see if Silas had any other brain abnormalities.  They told us that this was a really big deal, we wanted to see NO other things wrong.  They left and we hit our knees on the floor, asking our great Lord for healing upon Silas.  We knew we needed Christ at that moment to hold our little boy and to hold us.  We cried a lot, asked a lot of questions, prayed almost constant, and loved up on our little boy.  
Prayer chains began.  Many people from our church called and prayed with us over the phone.  Nana and Papa, G'ma and G'pa came to check our their little grandson.  Pastor Vince and Kathy came to read scripture and pray over Silas and us.  Dustin held me as I wept as I never had before.  I loved my little boy so much and this news was a harder life than I wanted for my little 5 month old.  But God's promises came.  The Lord was nearer than I had ever felt Him.  He held us.  Dustin held me.  I held Silas.  We read over and over in Scripture that there WILL (not might) be hard things in this life.  But we have Christ and that is enough.  
We didn't sleep that night.  We prayed and held Silas.  Morning came and they took Silas away from me to get the EEG scrubbed off before the MRI.  My heart has never hurt so bad.  Silas cried more in those last 24 hours than I could handle and then I had to give him over to be put to sleep.  Putting him to sleep for the MRI went bad and they whisked me out of the room.  I thought I would faint at how much my heart hurt.  But Silas, you made it through and we received wonderful news that the MRI showed everything was normal.  We were so thankful.   

Tuesday, September 22, 2015

A very hard 5 Month birthday

Monday morning Selah woke Silas and I up early.  So the 3 of us headed down stairs, I poured myself a cup of coffee, and got breakfast ready while the kids played.  Around 7:45 I was feeding Silas breakfast (pureed avacado and prunes) and his eyes rolled up for about 2 seconds.  I thought it was weird but they came right back down.  About 10 seconds later this happened again.  When they came down he seemed confused and out of it.  This continued for about a minute.  Around the 3rd one I picked him up and started patting his back to make sure he was breathing.  He held his breath while his eyes rolled up but would breath when they came back down.  I didn't know how to stop it so I prayed hard and began to nurse him.  He stopped about 15 seconds after nursing.  After that he got really out of it and tired and went to sleep.  He slept harder than ever before.  I made some calls saying, "I think Silas had a seizure but I'm not sure" to Dustin, my mom, and the doctor.  The doctor told me to call a neurology clinic and have him evaluated.  After much tears and confusion over the phone the neurology clinic said they would call me back.  While waiting Silas woke up and seemed totally normal.  My dad came and brought the kids to a park.  Alicia stopped by and agreed he seemed fine.  We went on with our day of school and play.  Around 1:30 it happened again, the doctor told me to bring him into the hospital.  My dad came to drive us and Dustin left work to meet us there.  We went to Children's ER in St. Paul.

Silas seemed fine when we got there.  He was babbling and smiling but they decided to admit us to the Neurology floor.  As we were being wheeled to our room Silas had another episode that the nurses were able to witness and it was the first one Dustin saw too.

They needed to hook Silas up to an EEG and video monitor over night to see exactly what was happening.  It took over an hour of Silas screaming while they got the EEG's in place.  By the end it was bed time.  

They had a crib in the room which I asked if I could climb into and sleep with Silas because we had never not slept together.  They wheeled in a bed instead of a crib for us to share.  That night exactly 5 months after Silas was born, I snuggled my little sick boy to sleep and cried all night long.  Dustin and I were constantly on our knees asking God to heal.