Thursday, May 21, 2015

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!!!

Wednesday, May 13, 2015

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. 

Wednesday, May 06, 2015

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. 

Monday, April 13, 2015

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.




Tuesday, April 07, 2015

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!

Monday, March 30, 2015

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! 

Saturday, March 21, 2015

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. 

Tuesday, February 24, 2015

Happy Half Birthday Calvin!

Calvin turned 4 1/2 on Feb 21st.  It is a Sturm tradition to celebrate 1/2 birthdays...you get 1/2 a cake and 1/2 the birthday song sung to you.  You also get 1 present and your age in dollars ($4.50 for Calvin).  Brad has been encouraging me for awhile to do this for our kids, but I kept forgetting...until I put it on the calendar.  It is amazing what you can remember on the calendar.  So, we started the tradition this year with the kids.

They were excited, the idea of a 1/2 birthday is different for them.  Calvin made the comment, "so tomorrow I turn 5".  Not quite, not quite.  But anything for celebration is fun! 









Yeah, I can't tell if that cake was good or not.  What do you think?

Tuesday, February 03, 2015

Construction Party!

We celebrated Asher's birthday last night.  The kids were so excited for the big day, they had been counting down to it from last week.  It was a construction party for the toughest worker.  They all loved it.










Monday, February 02, 2015

Happy 2nd Birthday, Asher!



Dearest Asher,

It's your special birthday!  You know, the birthday where your year is the same day you were born.  Happy 2nd birthday big boy!

It's been such a joy to watch you grow this past year.  You've matured by leaps and bounds.  Literally.  You love to leap and bound off any piece of furniture, regardless the height or what's below.  Daddy often comes home and asks where your new scrape or bruise comes from and we don't always have an answer.  The scrapes and bruises do not slow you down at all, they're just a formality to you.

One of your nicknames is Asher the Destroyer.  It is fitting, if there is a tall tower or a nicely organized playroom, it is your job to destroy that.  Happily.  Which, is probably very typical of a kid your age.  It can be rather frustrating for your older siblings, but thankfully they know you are in the toddler stage and they give you an extra measure of grace.  Secretly, they are probably hoping this stage will pass quickly.

You love to eat almost anything, but your absolute favorite food is ranch dip, if we can call that a food.  If there is dip, you are in heaven.  And you don't just dip fries or chicken, you dip everything...apples, crackers, even cookies have been dipped in ranch dressing.  Hey, maybe you are on to something new here?  One thing that delights us is how much you love your vegetables still.  If it is green, it's a hit!  Woohoo!!!

You are quickly progressing in speech.  You still struggle with certain letters, like c and l, so when you say Calvin, it comes out as Talvin.  And a cat is a "tat".  It's fun to watch you grow and learn.  You love to play with markers, crayons, glue and stickers.  Art is one of your favorite activities.  You also love to play with legos and puzzles, and of course trucks!  You can't get enough big trucks.

You are still a mama's boy and will accept no substitute sometimes.  Mama loves to sing you to sleep at naptime and nighttime.  Your favorite songs are Jingle Bells, Twinkle Twinkle Little Star, You Are My Sunshine and Winnie the Pooh.  Usually after multiple rounds of each, you eventually close your eyes into a peaceful sleep.

We love you dearest son.  We are so grateful that God placed you in our family and we get to watch you grow and mature.  One of our favorite things is listening to you pray.  We can't always figure out what you are saying, but at the end you give us a nice, loud Amen.

Thank you Lord for this precious son!

Love, Always and Forever,
Mama, Daddy, Mia & Calvin

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. 

Monday, December 08, 2014

Intentional

We are trying to be very intentional with our time this Christmas season.  We want to take time and do some fun things with the kids.  It is so neat to watch them get caught up in the excitement of the season. 

Grandma Cheri took Calvin for a day at her house and he made cut out cookies.  He frosted a few there, but brought back a dozen or so for all of the kids to frost at our house.  They loved it.  Asher only frosted one because he realized how great it tasted and he couldn't get past eating the frosting. 








There is a place in town called Christmas Town and it has lots of different kid activities.  There is an upfront fee to get in, but once in everything except the food and gifts is free.  We went there on Saturday and the kids had a blast.  They got to sit on Santa and Mrs. Claus's lap.  When asked what they wanted for Christmas, Calvin wanted a frog that jumps and Mia wanted a fox.  I love that they haven't been consumed by the materialism of the holiday yet. 





There were several bouncy houses, most like your typical birthday bouncy house rental, but one huge one that was a snowman.  It was super windy at the entrance and Calvin just couldn't get the courage to go in by himself and the others weren't going in with him, so they settled on bouncing in the birthday style ones for awhile. 


There was a hayride to look at the lights and face painting, along with ice skating.  The kids loved the ice skating, although it wasn't truly ice skating as it was more wax than ice, but you could get going a bit with the skates. 


There were plenty of lights and overall the kids had a blast.  It was worth the time and effort to go out there.  At the end there was a huge slide that Daddy took them on.  They loved it. 



The kids would definitely go again.


Friday, December 05, 2014

Juggling

I feel like I am in a circus most days.  I am a juggler trying to keep all the balls in motion and it seems like the balls keep flying in during December.  If I look at the whole month, it makes me want to crawl into a hole and hibernate until summer.  Then I have to take a step back, breathe, and take it moment by moment.

The one thing I have learned being a mom is that moment by moment is doable.  The whole picture, not so much.  Take today for example.  I had to make the kids breakfast, get them dressed, do schoolwork with Mia, take Mia to vision therapy, make lunch, empty the dishwasher, load the dishwasher, wash the clothes, dry the clothes, fold the clothes, put away the clothes, exercise (myself), do Mia's daily medical stuff, get Asher down for a nap, make dinner, and so on and so on.  I could easily get overwhelmed just thinking about my day, but I take it in chunks.  First we work on breakfast, then we work on the next task.  And amazingly, God takes me through each moment graciously.

Asher didn't want to take a nap today and since he has a new found freedom of being able to climb out of his crib at will, it makes naptime and nighttime more difficult.  I know naps are important, I don't want cranky babies and yet I can't force the kid to sleep (although if I could, I would).  So, realizing the impending doom that it wasn't going to happen at the usual time, much to my dismay...I rearranged our schedule a bit and tried a little later.  Thankfully, by the grace of God...and this is where He is so gracious, Asher did go to sleep.  Thank you Lord!

It's just a constant juggle to me and I know that I would fall flat on my face if I didn't have my God walking right beside me.  If it was me, by myself, the game would be over.  But, somehow the Lord has taken me through 7 years of being a mother.  Looking back, it is only with His help, that I have managed to get here. 

What just boggles my mind the most, is that God loves me so much, that He wants to be part of my mundane, ordinary day.  And not just mine, but every single one of yours too.  He wants to help me with my juggling and walk beside me moment by moment, I just need to ask Him to be with me and He will.  And He does that for anyone.  Anyone who calls on His name.  Isn't that amazing!  I can't keep three balls up in the air without help and He juggles an infinite number with ease.  I'm so glad He's on my side.  I really couldn't imagine life without Him. 

Saturday, November 29, 2014

Thanksgiving

We had a wonderful Thanksgiving with family.  We celebrated with Brad's parents on the actual day and then with my mom and family on the day after.  We ate way too much turkey and pie...as always, right?  The kids really enjoyed all the festivities, they especially liked playing Thanksgiving BINGO (nothing fancy, just with Thanksgiving pictures instead of numbers) at Nana and Grampapa's.  Mia especially liked playing cards with my side of the family, it might be in her blood to play cards.  Just fun family games, no betting. 

We also ended up taking some family pictures, here are a few from our photo shoot. 






Monday, November 17, 2014

LA Check Ups

Mia and I were in LA last week for her annual echo on her heart.  It looks fabulous. It is hard to believe that 6 years ago we were getting ready for heart surgery over Thanksgiving week.  I remember that day vividly.  Waiting in the waiting room, getting updates and then a final positive report.

I love that her cardiologist tells us every time that we should just think of Mia as having a normal heart.  She's doing that well, which is so awesome!  Praise God! 

We've had quite a journey over the past few years and we are so grateful for God's healing power in her little life.  She is quite the testimony to our God.  We are just so grateful for how far He has taken her.  Thank you to all who continue to pray and have faithfully prayed for her! 

Tomorrow we are off to LA again for an annual visit with the orthopaedist.  Mia has some mild scoliosis that they continue to monitor, along with her hips.  Her ball and sockets have never completely come into a tight position because of her muscle weakness.  But all of these things are minor and we just continue to watch them with annual check ups. 

Thursday, October 30, 2014

Pumpkins, part 2!

We finished the pumpkins tonight.  The kids and I braved Walmart to get some candles.  Note to self, don't go to Walmart the day before or the day of a holiday...it was a nightmare.  But we got back home safe and the kids were so excited to see their pumpkins lit. 






Calvin's pumpkin is on the far left, a traditional jack o' lantern face.  Mia's is in the middle...any guesses?  Of course, a fox for the fox lover.  And Asher's is on the right...what they call a silly face.  Daddy gets the credit, he carved 90% of the pumpkins, the kids just told him what they wanted.  I did a few minor details on the fox face.  Aren't they fun!


Wednesday, October 29, 2014

Pumpkins!

Last week we went to the pumpkin patch as a family.  We had a great time picking out pumpkins and enjoying the pumpkin patch.  And then tonight we finally carved our pumpkins.  Asher and Calvin thought the insides of the pumpkin were gross, and Mia felt like it was stringy and slimy, but she jumped into cleaning out her pumpkin whole heartedly.  She was a real trooper.  I will try to get some pictures of the finished project up, but we didn't get a chance tonight. 







Sunday, October 12, 2014

Happy 7th Birthday Mia!



Happy Happy Birthday SweetPea!

Mommy and Daddy can't believe that you are 7 today!  My how time has flown by these past seven years.  I still can vividly remember the day you were born.  Being so anxious to finally meet you and hearing that first cry after you were born.  1:03 pm.  5 pounds 4 ounces.  So petite and tiny, you know you still are petite and tiny, but you have the biggest heart that a little girl can have.  You are always sharing and always helping others with a smile on your face. 

This year you grew another 2 inches!  Either that or your pants got shorter.  You also gained some weight this year, you are now hovering around 36 pounds.  That elusive 40 pounds is just around the corner...

You graduated out of physical therapy this year and now only have a couple of other therapies.  You continue to ride horses at MARE and this year you've been riding the horse Lady quite a bit. 

On top of all of that, you now do school at home!  And you love it.  You are a great learner and it's so neat watching you learn daily new skills.  You are adding and subtracting, telling time, writing sentences and your favorite subject is science.  Right now you are learning all about trees and the different seasons. 

Calvin also likes to do school with you at home.  He is your best friend.  This year we put your beds in the same room and you two love it.  In fact, you keep asking us for bunk beds.  One of these days we will do that and we might even put Asher in there with you all too! 

Asher is mostly your little bother, but you are learning that he is just a toddler and he has a lot of learning to do.  I've watched you give him a lot more grace these days and show him more love.  He is going to be so lucky to have such a nice big sister like you!

We love you sweetpea!  God has blessed us with a beautiful little girl.  We look forward to what God has for your year 7!

All our love,
Mommy and Daddy, Calvin & Asher

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