Mia Update

So, when I last updated the blog, Mia had been seizure free for a week.  I am sad to report that the seizures still continue.  That was our longest stretch of being seizure free.  We have since increased her medicine again, but it is still not controlling the seizures.  She's had seizures the past three days in a row.  Sometimes we get a break for a few days, but they are still consistently happening. 

One of the medicines she is on (she's on two) takes a few weeks to normalize in your body.  So, we increased this medicine on Friday, but we are going to have to wait a few weeks to see if this new adjustment is working or not. 

At the moment, we are discouraged.  Not hopeless, just discouraged.  We know that God could immediately stop anymore seizures if He so desired.  He is a god of miracles.  But, at the moment, He is allowing this to happen.  We have to trust Him and His plan.  It's just hard to watch your little girl go through something that you have no control over.  And we don't want her to be hurt, so at times it is discouraging. 

When you think of our little girl, will you say a prayer for her.  It means so much that so many of you have faithfully prayed for her and continue to do so.  We are forever grateful for all of you. 

Happy 7 1/2 Mia!

Mia's half birthday was yesterday and of course, the kids were so excited to celebrate!  It's hard to believe she is 7 1/2!  It feels like yesterday she was just a newborn and then we were struggling to reach milestones and now she's a beautiful little girl with so much potential.  Thank you Lord for our miracle. 

Even more cause to celebrate, she has been seizure free for a week.  Her new medicine is working and even though she is a bit tired, we will happily take that instead of seizures.  Here are a few pictures from yesterday.

Happy Easter

We had a rough Easter this year.  Mia ended up having a seizure and falling and banging herself up pretty good.  On top of that, the stomach flu made its rounds through our house.  On the Saturday before Easter, Mia started having multiple seizures during the day.  We ended up talking to her neurologist on the phone and he suggested we up her to the new dosage of meds immediately.  We did that and things have tapered off since then.  Now, because we increased her rather quickly, she's been super tired and out of it at different times during the day.  We are just praying for some normalcy to return to our home this week. 

In spite of all of this, we did have a really nice Easter.  We spent it in Palmdale with my brother and his family.  The kids loved looking for Easter eggs and we had Easter baskets on the table for them when they got home.  They were so excited that the "Easter bunny" had brought them such neat things.  Calvin commented the next day, "How can we tell the Easter bunny thank you?"  I said we could write a note and I bet the Easter bunny would get it somehow. 

What was the most fun for me to watch is how much their knowledge of God and why we really celebrate Easter is growing.  It's really starting to click for them and it's so neat to see them processing all of that.  We talked about how Friday is good for us, but Jesus had to sacrifice so much for us to make it good.  That really made sense to them this year. 

We hope you all had a wonderful Easter!

Melting Mama's Heart

A sweet moment just happened with me and my baby boy.  Well, he's not a baby anymore, but he'll always be my baby boy.  I was lying down with him and singing songs to him right before nap time.  Our usual routine.  He leaned over and kissed me, and then said, "I love you."  And just to make sure I got it, he did it three more times.  Talk about melting a Mama's heart.  I tell him those words every day, today is the first day he has ever said them back to me.  So sweet!

Mia is still having seizures.  We've added in a second medicine, but because we have to gradually introduce it to her, we are not at full dosage for the new medicine yet.  It will be at least another 10 days before we reach the full dosage, so it's tough for us to watch her to continue to have seizures and not be able to do anything about it.  Thank you for continuing to think of her and pray for her, we so appreciate it! 

A Much Needed Update!

It's been a month!  I think that is the longest stretch I've gone without writing.  You see, things have gotten crazy and I got sick.  Not a really good combination, but when mom's sick, everything gets put on the back burner. 

Recently, Mia started having seizures daily, so we ended up going down to UCLA last week and doing another overnight EEG.  This time they did capture a seizure on video and connected to the electrodes.  Praise God!  And so they upped her medicine and we were hoping that would be the answer.  It took a little while to adjust to the new dosage and this past Wednesday, Thursday and Friday we were finally seizure free!  I was so excited because I thought that meant it was finally working, but then today, Saturday, she has had 3 seizures.  Sigh.

So, we called down to UCLA and spoke with the neurologist team and we are going to up her dosage some more.  Please be praying with us that this is what she needs to be seizure free.  Our God is amazing and we want to trust Him and His plan for our little girl.