Wednesday, January 28, 2015

Home

We are home safe from our trip to UCLA.  Everything went great, thank you Lord!

Yesterday we got a call in the morning that said we needed to be at UCLA at 1:30.  So, Nana came over and watched the boys while Mia and I headed down to LA.  I had already talked to Mia about what was going to happen and she seemed totally ok with everything, which surprised me a bit since she does not like doctors or hospitals.  She was just very excited to be doing a girl trip with her Mama and I don't think she really cared where we were going as long as I was with her.  I explained that they were going to give her funny hair extensions and she thought that was great. 

When we walked into the hospital, I was surprised by the flood of emotions that overwhelmed me.  Even though I take Mia to UCLA every so often for doctor visits, we never visit the hospital, so I don't actively think about being there and everything surgically that has happened to Mia.  Anyway, walking into the hospital just brought back such raw emotions.  I had to take a few deep breaths and keep walking because part of me wanted to turn around and not even be there. 

I look at Mia and know how far the Lord has carried her.  She truly is a miracle.  And I can't take back what happened to her and I know without a doubt that God is using this for His glory.  And it is amazing what He has done, how He has healed her beyond what doctors could ever imagine or believe.  Yet, I would take it back in an instant, I would go back in time and do it all over again if that didn't have to happen to her.  No one wants their child to struggle or go through painful times.  But since I can't do that, I am so grateful.  Grateful for a sovereign God who has used Mia's tragedy for His glory. 

She of course was clueless to all of this, I love the innocence of this age.  We got a little snack, checked in and were told that we'd have to wait...a bed was not available for us yet. That makes me laugh because I am such an on time person.  If you tell me to be there 5 minutes before, I'll be there 10 minutes before.  I am so prompt and it drives me crazy when we go to doctor appointments and everyone is late.  I'm learning to let that go and to readjust my times...it's ok to be 5 minutes late, I will have to wait less and they will not cancel my appointment, they will happily take my money. 

Around 3:30 we finally got our room and we settled in.  Jimmy came in to "do" Mia's hair.  We showed her the extensions and talked about the sticky glue and she was ok with all of that.  She was even ok with Jimmy's blow dryer (a tiny air gun).  What she didn't like was the way the air gun made the glue very cold on her head.  So, every time he glued a lead down, she fussed.  But, she was a trooper and 23 leads later, she was done and that was the worst of the worst.  It was so minimal, which has been so different than any other hospital stay. 



She was settled in her bed and they had a video monitoring her, that way they could visually see what was happening if she did have a seizure.  She pretty much watched videos the entire time.  She was happy as a clam to do that and since we got there too late to get anything from the play room, it was fine.  You do what you gotta do sometimes. 

Even though no one came and bothered us all night long (another hospital miracle), it was still a long night when you end up sleeping in the same hospital bed as your kid.  I did get enough sleep, but it was pretty restless sleep. 

This morning the team came and saw us and told us that her EEG showed no seizure activity, which is great.  Sometimes people who have seizures can be having seizures without any visible signs, so this was great news that there were no seizures happening.  Her brain did show some abnormal activity, which was to be expected.  It happens more at night when she is sleeping, which was explained to be normal because of the state that the brain is in when you sleep.  But nothing that is worrysome or troubling.  If you have too much abnormal activity, that can lead to seizures, but hers were not. 

So, praise God for a great report!  That's not to say that she hasn't had some isolated seizures in the past few weeks, but nothing underlying is happening.  So, going forward we will continue with our current medication and we will keep an eye out for unusual activity and if it continues, we could change her medicine or look into other reasons why this is happening. 

She was happy to leave and when we were walking out she told me, "Mom, I do not like doctors or hospitals."  Which made me smile, because that is the Mia I know.  She has her opinions and we are grateful for them. 

Thursday, January 22, 2015

Testing

Over the past couple of weeks, Mia has had some moments where her behavior has been unusual and possibly indicative of seizure activity.  It's happened three times and after letting her neurologist know, he thinks it is in our best interest to do an overnight EEG study on Mia to see what's happening before we adjust any of her seizure medicine.  So, next Tuesday (assuming all goes as planned), we will be heading to UCLA to do an overnight study. 

She had one outpatient EEG done when she was less than 3, so quite a long time ago.  It was a short one, it only lasted an hour or so.  This one will be much more extensive.  In particular, she doesn't like me even mentioning the doctor, so please pray that she would be at ease when we do go down there.  I always debate about when to let her know that something is happening, especially as she is getting older and more aware of things.  I think we will discuss it a few days before to prepare her and hopefully it will be an easy overnight trip. 

It's not painful, but they do stick a ton (yes, literally a ton) of electrodes all over your head to map your brain activity.  I imagine that will not be comfortable and especially with sleeping, so prayer that it go smoothly and as painless as possible for her would be awesome.  There was a mention that we might have to stay an extra day if they don't get what they are looking for that night, so hopefully that will not be the case.

On a side note, they found our suitcase!  It went to Georgia instead of North Carolina.  We got it back last week, so it had a bit longer of a vacation than us, but it did make it back!  That was awesome because while we can replace all the stuff that was in it, medical supplies are expensive.  So it was a praise and a blessing to get it back. 

Tuesday, January 06, 2015

Happy New Year!

We have been going non stop since December.  At least that it was it seems like.  Between church activities and holiday events, it's been crazy over here. 

We flew to North Carolina to visit my brother and his family over Christmas.  It is always overwhelming trying to plan for a trip and especially one in an area that you are unfamiliar with.  Packing may have been the worst part.  We ended up having one large suitcase, two smaller carry on bags and one medical suitcase with all of Mia's stuff.  Brad and I also each had a backpack and we checked two car seats.  Thankfully my brother had one we could borrow, so we only had to bring two of the three along!  We were grateful when we arrived at the airport and were able to check everything in.  In the chaos of the moment, I ended up not getting a receipt for Mia's medical stuff, but I watched a tag print out that the representative assured me was for her bag and so I just assumed (ugh) that everything was fine.  Of course, guess who's bag didn't make it!  Yes, Mia's medical stuff.  I was just grateful that Brad had encouraged me to put a few supplies in a different suitcase, just in case.  By the grace of God, we were able to get the stuff we needed there and we survived the week, but our suitcase never did make it!  It is in suitcase limbo.  Somewhere circling on some conveyer is our suitcase.  Sigh.  So, now I am in a long process of trying to get reimbursed for stuff that I don't have a receipt for and no one has record of.  Wish me luck!

The kids loved being around their cousins.  There was always something exciting happening, even if it was just running up and down stairs.  Of course, Asher didn't do so well with the stairs and ended up tumbling half way down one of the sets.  That put me and Brad on high alert and it was hard to completely relax.  But, I was grateful for time with family and really enjoyed the time we had there. 

We made it home, but are now struggling with adjusting back to our routine.  Asher, especially, is having a hard time...maybe just the age or a combination of both, but he's been up a lot at night.  I just want my baby who sleeps through the night back!

We then had a late Christmas here (on New Years) with Brad's family.  And all of a sudden, it's time for school again.  We are working on getting back into the swing of things!  I will post pictures soon. 
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