Summer!

Summer has officially arrived.  At least for us it has. 

On Friday we had a bit of a scare.  I was getting Mia's evening dose of medicine ready and I noticed we were nearly out, so I grabbed the box with the other bottle in it only to realize that there was no other bottle.  We had already grabbed that bottle and we didn't have any more medicine for her.  My heart panicked.  I had enough for her evening dose, but not enough for her morning dose.  By the grace of God, Costco was open (we get our meds there) and the pharmacy was able to add her order to the list, however, they weren't for certain it would arrive the next morning.  It showed the medicine was available, but they said if someone else placed an order for it before them, then the medicine could go there instead.  We immediately asked our friends and family to pray.  It was a rough night and morning for me, but by the grace of God our medicine made it to Costco in the morning.  She got her dose a bit late, but thankfully she got it.  I'm such a planner and I'm usually ahead of the game in reordering medicine because I don't want to be in a position where we don't have any, but this is the first time we get two bottles in a prescription and so now I've taken both bottles and put them where her meds are and when I only have one bottle left, I will know it's time to reorder. 

We started Mia's new medicine and she is still having seizures.  We anticipate that happening for a bit while we are weaning her off one medicine and increasing the next medicine.  But, please, as you remember her, keep praying that she would be seizure free soon.

Mia and Calvin started swim lessons this week.  We are taking them to a gal's house who does private lessons.  They are having a blast.  They both love being in the water and aside from sticking their faces in, they are working hard at everything else.  Today she had Calvin floating on his back by himself.  He didn't know it, but he was doing it. 

Mia is now 40 pounds!  Woohoo!  I almost can't believe it.  40 pounds is a big deal because now she could technically ride in a booster seat instead of her forward facing car seat.  We will keep her in the car seat as long as we can because it is safer, but it's nice to know there are some options.  And she's getting bigger!  It took 7 1/2 years, but we've made it to 40 pounds!  That's a big deal.  :)

We are winding down with school, but will continue to work on things over the summer.  Just not the same intensity as the school year.  But overall, the kids do better when we have a bit more structure in the day, so continuing on with some school stuff will be great on multiple levels.  Mia did super well this year.  She still has some struggles, but overall, she's did a great job of keeping up with all of her goals.  Her favorite subject was always science.  She studied stages of life, plants and animals, the human body and we ended with bugs.  The kids especially liked growing butterflies and ladybugs...I mean ladybird beetles.  I can't figure out why we don't use their formal name.  ;)

Neurology visit

We were in LA yesterday for Mia's neurology visit.  She has still been having seizures so at this point we are going to take her off the first drug she has been on for almost 7 years now.  Now we will be adding in a new drug instead...it is geared towards seizures that involve falling.  We are hopeful that this will address it, but like always, the increase will be gradual so we might not notice the change for a bit.

As always we keep praying for wisdom for her doctors and healing from God.  Thank you for praying for our sweet girl!

Ups and Downs

Last Friday Mia had three seizures.  Up until then, she had been having 1 a day for the most part.  So, I emailed her neurologist and he said that if things didn't change by our appointment next week Thursday, he was going to have to rethink his entire strategy for her seizures.  After that, we suddenly had a long stretch without seizures.  I began to think, hey, maybe this is it and the medicine has finally taken full effect in her body.  But then, yesterday afternoon she had a seizure and today we have had two. 

It is just such a battle.  I have so many questions swirling in my head.  And it is somewhat of a guessing game towards figuring out what medicine is going to help.  And unfortunately, I've read too much information on the internet and in the back of my mind, I wonder...what if nothing helps? 

When I start to feel that way, I stop, take a deep breath, and then give it to God.  It doesn't matter what science or the world says.  If God says yes, then God says yes.  And I have to continue to trust.  He's provided so many miracles for her already.  I'm so glad I'm on His side. 

Satan tries to defeat us.  He will use every tactic to discourage us and bring us down.  And God never promised that life on earth would be easy.  But God does promise to never leave us. Deuteronomy 31:6 says, ^"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

I'm going to cling to the truth and continue to give everything to God and wait for his timing.  Thank you Lord for our precious daughter, for loving her more than we could ever love her and for providing abundantly for her.

Thank you for praying!!!

Still

I know that I wrote in our last blog update that we were discouraged.  It's just been a long few months that has reminded us of how desperately we need Jesus.  God is very clear that life may not be easy.  (John 16:33)  In fact, we are to count it as joy when we have trials.  (James 1:2)  Talking to some of you has given us a renewed strength that we are not alone.  Many of you pray daily and continue to ask us how she is doing...and take such an interest in her because you love our daughter too.  And we are grateful.  Forever grateful that you care for our daughter so deeply.  But more than that, we have an amazing Creator who formed Mia just as she is.  He knew before the world began what her life would look like.  He knew yours too.  And He loves each of us more than we can imagine.  Yes, life is not always pretty.  Sometimes we have to go through rough stuff, but we don't have to go alone.  We have a God who wants to carry us each step of the way. 

This week we have still had seizures.  I'm less discouraged and more hopeful this week.  I trust God completely.  At this point, we just have to daily give it over to Him.  He's blessed us with doctors who are great and who care for Mia.  We continue to pray for wisdom over their direction with medications, but ultimately we trust God for her care. 

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.