Hope

I have decided that I am not a good blogger at all.  I'll think about sitting down to write a post, but then life gets in the way and six months go by since my last update!  All is well with us, but it's been a crazy couple months.  But, let me back up because the week we are entering needs a little explanation.  We celebrated Sophie's 2nd birthday on July 28th and it was wonderful.  Yet, two days later she got a fever and was hospitalized for SVT (rapid heart rate) which we then discovered seemed to be triggered by fever since the same thing had happened a couple months prior.  This time, however, her heart rate had not come down by the time we got to Children's and she had to stay overnight.  There was a new medicine added and then we were sent home.  Our fall season was calm, but busy.  Kayla and Madelyn started school again, 2nd grade and Kindergarten, and were both playing soccer and taking swim lessons.  We had a wonderful Christmas, but the day after...Sophie got a fever again.  It seems that any time she has a growth spurt and outgrows her medicine dose...a fever sends her heart rate up in the 200s.  Very scary.  This time we spent 5 hours at Fauquier Hospital's ER before being transported to Children's for the next two nights.  Needless to say something needed to change and her cardiologist advised that it was time to go forth with scheduling a catheter ablation to cure this heart arrythmia once and for all.  He had wanted to wait until she was a little older and see if medicine could keep it at bay for the time being, but after three trips to the hospital in eight months we were ALL ready to try something else.

So here we are...three days away from her heart surgery.  It is an outpatient procedure so we are hoping she won't have to stay overnight, but it will depend on how it all goes that day.  They will make an incision in her groin area and put a catheter up through the vein that leads to her heart.  They will do a study to find out where exactly the extra electrical pathway is that causes her heart rate to spike and then do the ablation to get rid of it.  And if all goes well...she will be CURED!!!  This weekend we are weaning her off of both heart medicines so they don't mask the arrythmia at all.  There is a 90% success rate for this procedure and we are ever hopeful and praying that it goes smoothly.  Sophie has been taking medicine every day of her life, for seizures or heart arrythmia, so one exciting thing is that Tuesday will be her first medicine free day EVER.  I will be more satisfied on Thursday if we are home with a cured little girl who doesn't need any medicine unless she is sick.  Another big milestone for us is that it has been a year this week since she took her last seizure medicine.  Almost 2 1/2 years seizure free and 1 year with no medicine at all...PRAISE GOD!!

Please keep us all in your prayers on Wednesday, February 27th as Sophie heads for surgery for the second time in her little life.  It has been a rough past two months as we were trying to keep her healthy and fever free until her surgery, yet life threw us multiple colds, ear infections, one case of the flu, and one case of strep.  Yet she remained healthy and I am so grateful for that.  But, it has been stressful for me.  I feel like once I get through Wednesday I will be able to breathe again.  It's hard not to think "what if the surgery isn't a success...what about that 10%...what if something happens to her during surgery" but I keep turning to God trusting that He wouldn't lead us on this path if it wasn't the right one for us.  He has yet to steer us the wrong way.  I think back to Sophie's early months when I didn't think life would ever be the same.  That we would have a very sick child who wouldn't be able to do all the things that other kids can.  We have been blessed more that we ever imagined.  She is the shining light in our lives who continues to hit all the milestones that kids are "supposed" to.  Sometimes they are a little later than usual, but I believe that God planned all along for Sophie to do things her own way and in His timing.

Oh, and that same sick baby girl from 2 1/2 years ago?  I am looking at preschools for her to go to in the fall.  She knows her letters, numbers, colors, shapes and can recite full episodes of Dora and Bubble Guppies. :)

Our God is bigger than any diagnosis or outlook a doctor can deliver.  Take that Tuberous Sclerosis!

Two Years

"I praise You because I am fearfully and wonderfully made; 
Your works are wonderful, I know that full well."  -Psalm 139:14


It's hard to believe...Sophie is TWO!  It seems like the time has flown by.  Her life began with a whirlwind of health issues, but she has grown into such a sweet little girl who has surpassed all of her doctor's expectations.  She is still seizure-free since her surgery back in October 2010 and has been off all seizure medications since February of this year.  She is a true miracle and such a blessing to our family.  She is talking more each day and tries so hard to keep up with Kayla and Madelyn.  They all love to have "dance parties" in the basement listening to Kids Bop, Selena Gomez and VBS songs.  Sophie is always in the mix too...singing and dancing right along with them.  She is really going to miss her sisters when they start school in just three weeks.  I am looking forward to having time with just Sophie this coming school year and trying not to think about how grown up the older two are getting...second grade and kindergarten!  Not sure when that happened. :)


It has been on my heart for awhile to create a slideshow for Sophie, especially after a friend introduced me to the song "What It Means To Be Loved" by Mark Schultz, which seems perfect for our journey these past couple years.  I feel like her second birthday is such a milestone...she's not a baby anymore even though she'll always be our baby. :)  Enjoy!


http://smilebox.com/playBlog/4d7a49314e6a45324f54593d0d0a&blogview=true

Toddlerhood

It's official...we have a toddler.  Sophie took her first steps at the beginning of January and is now walking all over the place!  She turned 18 months old last weekend and is showing every bit of it.  She is into everything and has quite a temper.  She fits right in with her sisters. :)  Kayla and Madelyn really enjoy Sophie now that she is "fun".  What they don't enjoy is when she takes their things or draws on their pictures!  She really is a lot of fun.  Loves to be read to, play with dolls and listen to songs from our Music Class that we go to on Fridays.  It's hard to believe that she's really not a baby anymore.  Where did the past year and a half go?  Some parts of it seemed endless, but in retrospect it's flown faster than it did with the other two.

Kayla is doing wonderful in first grade.  She just got her 2nd quarter report card and it was great!  She will be turning 7 in March and has decided to get her ears pierced.  She has started joining me on my 2.5 mile walk I do on the weekends and it has been bittersweet to share that time with her.  We just walk and talk about anything and everything.  She is really growing up.

Madelyn loves her second year of preschool and can't wait to go to Kindergarten in the fall.  I can't believe she is going to be 5 in June and that I'll be putting her on the bus to elementary school in just six months.  She seems to have grown up so much faster with a big sister to follow.  She is very independent and can play by herself for hours.  She loves puzzles and anything that you really have to focus on.  She'll be starting to play soccer this spring and we think she's going to love it!

Mike and I just try to keep up with all three of these little (and not so little!) girls.  We're looking forward to doing some more weekend trips as a family in the spring and summer...and maybe another week at the beach!

We continue to be thankful for God's blessings in our lives.  Sophie is a true miracle with all she's overcome and the expectations that she's surpassed!!!  Oh, and I almost forgot...by the end of February she will be off of ALL seizure medicines!!!!!

School Days

Today we sent Kayla off to school as a first grader!  Hard to believe.  It was such a bittersweet time at the bus stop since all five of us were there.  Last year her first day of school was so hectic b/c Sophie was still in the hospital and I was scrambling to be everywhere I was needed.  I was there to see her off to kindergarten and then hopped right in the car to drive to Children's to be with Sophie.  I didn't come home again until later in the week when Sophie came home.  It was wonderful to send her off to school today under normal, happy circumstances and our complete family!  Madelyn has two weeks until she starts her 2nd year of preschool.  She's so excited to be in the 4 year old class, "the big kids" she calls it.  Also hard to believe that in a year she'll be getting on the bus with Kayla to go to kindergarten herself!  Time flies.

We just got back from another week in OBX...this time, just the five of us.  It was a fun week of beach and pool.  Sophie is being a typical one year old and in the throws of fighting naps and getting into everything she can.  She is completely mobile and has her own style of scooting/crawling.  And she's quick!  We have upped her physical therapy to 2x/ month since she's mobile now and the phys therapist wants to see her have a crawling pattern where she alternates her arms and legs like babies typically do.  With the low muscle tone in her hips she holds her right leg bent forward for stability and while it works for her now, it will delay her walking eventually if we don't get her muscles strengthened.  I am looking forward to more focused time to work with her with the big girls getting back into the school routine.  Also looking forward to getting back to my Thurs morning Bible study and our Music Class on Fridays.  Summer was wonderful, but it's nice having a schedule again!  And college football starts soon...and cooler weather.  I love fall!!!

This fall will mark a big milestone for Sophie too.  On Oct 22nd she will have been seizure free for ONE YEAR!  Her surgery was such a blessing and it's hard to believe how far we've come.  She is such a shining light in our lives and continues to bring us so much joy each day.  Kayla will be playing soccer this fall and we look forward to seeing how she enjoys that.  Madelyn continues to be the comedian in our family and is very secure in her roles as big sister and little sister.  As we were walking home from the bus stop today she said "Sooooo Mommy, what are we going to do without Kayla today?"  It already feels right having our school year routine back.  Here's to a fun fall season!

11 months

Sophie is 11 months old today.  It's hard to believe that in one month we will be celebrating her first birthday.  In some ways this year seems to have flown by and at the same time dragged on.  She is such joy in our lives.  I have truly never seen such a content, happy baby.  She is so good at entertaining herself and also loves to be played with.  Kayla and Madelyn love to play with her and make her laugh.  She wants sooooo bad to crawl and is making progress with rocking on her knees, but I think it will be awhile before she's mobile.  Her physical therapist has us working to build muscle tone in her hips so she'll have the strength to move those legs and get where she wants to go!  For now she sits happily, turns in a complete circle, and scoots where she wants to go.  In some ways it is a blessing for me b/c as soon as she is mobile my life will change with having to chase her around!

We are spending this week at the Outer Banks with my family.  My mom and stepdad rented a beautiful oceanfront house for all of us.  It's wonderful being with everyone and the kids are having a great time, as are we.  I remember last fall when my mom told me she was booking this trip and in the midst of Sophie's health issues I told her "There is no way we will be able to go.  We won't be able to do things like that anymore."  My mom insisted that we would be able to go, but I didn't believe her a all.  I was foreseeing a future of constant doctors and ER visits as Sophie was having daily seizures that we couldn't get under control.  It's amazing how God has led us through this past year.  Sophie is doing fantastic and we would've never imagined that we'd be here at the beach just relaxing and having a great time when we were going through all of that last year.  My mom was right though and it is a blessing to spend this week with my family. 

Tonight I'll be making cornbread (a favorite of ours) to celebrate and Friday is a big deal for us too.  That will be Sophie's last dose of Phenobarbital which is a seizure medicine she has been on every day of her life.  We will have successfully weaned her off of two seizure medicines and if all continues well then we'll start weaning her off the last one on November.  God is good!

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." -James 1:17

New Blog Name

I've been wanting to re-name my blog for awhile.  It started out as a way for people to stay informed about Sophie's health and has served its purpose for that.  In the past months as she has been doing so well I feel like it has moved toward being a way for us to update about our whole family.  I struggled with what to re-name it and the other night it came to me.  I was praying before going to sleep and the word "footprints" came to me.  I thought of the "Footprints in the Sand" poem which has always been a favorite of mine.  I feel like "Footprints of Faith" sums up our journey with Sophie in the past 10 months and our future as a family of five.  We have become so secure in the past year that God has a plan for of our family and where we are headed.  There is such comfort in that.  It's like a weight lifted to not have worry about where I'm headed because He knows and has always known.  I can relax and enjoy living knowing that He carries me through the good times and the bad times.  His plan usually makes sense in retropect.  And the parts that don't make sense will someday when we see Him face to face. 

Footprints in the Sand
by Mary Stevenson

One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most, you should leave me."
The Lord replied, "My precious, precious child, I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints, it was then that I carried you."

Tangled

Our house has been taken over by Rapunzel and all things “Tangled” lately!  The girls and I went to see the newest Disney movie last fall and pre-ordered the DVD so it would arrive soon after its release at the end of March.  It is such a cute movie and I love the soundtrack so much I don't even mind playing it for the girls in the car! 

This blog post has been about a month in the works because in listening to one of the songs from the Tangled soundtrack I can't stop thinking about my life in the past year.  April 15^th was an emotional day for me because it was a year ago that day that we had our ultrasound and found out that Sophie had health problems.  Yet, I look at her now and she is thriving...such a joy in our lives!  And we've made it a year...a long year...and life is better than we ever imagined it would be.  When I listen to the song “See The Light” some of the words capture exactly how I felt and now feel about my littlest girl.  I spent so much of the past year feeling “tangled” and just not knowing how to process everything that was going on.  Some days felt like madness and I struggled to find God and His plan in it all.  Sophie is 9 months old now and I realized that I do “see the light” after going through a period of darkness.  We live such a normal life with her that sometimes I forget what we went through in the beginning and that she could still face issues in the future.  But, there is a constant peace that reminds me she is meant to be with us and that whatever we may face in the future she will be fine and we will be fine.   I am so in love with this sweet little girl and it's hard to believe that she will turn ONE in less than three months!

Here is a link to the video and the lyrics to “See the Light”.  While the words are intended for a love story between a boy and a girl, I think you will see how they remind me of  Sophie and our journey so far.  God has blessed us so much by placing her in our lives.  She is truly a shining star!

http://www.youtube.com/watch?v=ut1_0cRRYeE&feature=related

SEE THE LIGHT (from the Tangled soundtrack)

All those years watching from the windows

All those years outside looking in

All that time never even knowing

Just how blind I've been

Now I'm here, blinking in the starlight

Now I'm here, suddenly I see

Standing here, it's crystal clear

I'm where I'm meant to be....

CHORUS

And at last I see the light

And it's like the fog has lifted

And at last I see the light

And it's like the sky is new

And it's warm and real and bright

And the world has somehow shifted

All at once everything looks different

Now that I see you.

All those days chasing down a daydream

All those years living in a blur

All that time never truly seeing

Things the way they were.

Now she's here shining in the starlight

Now she's here, suddenly I know

If she's here it's crystal clear

I'm where I'm meant to go....