Sophie Kate’s Journal

What a beautiful weekend we had here in Alabama filled with our regular allotment of baseball games and sunscreen. We also attended Stadium Fest this weekend which was a family day at Samford University with Christian speakers and Christian musicians and then fun things for the kids to do too.  Getting to hear Chris Tomlin perform some of the songs he is best known for was a highlight for me.  Getting to stand in long lines for inflatables and water is sure to be the highlight for Chad.  It really was warm here Saturday bordering on down right hot.  It’s like we forget year to year how hot it actually gets here.  We will be begging for this day when we are all sweltering in the low 100’s come August.  I guess we just need to be eased back into it.

One of the main speakers (Rick, a radio personality here in Birmingham) spoke of the mediocre, lukewarm Christian.  Those of us who grew up in the church….we know the words to all the songs, we know the right words to say and we know how to pretend like we have the perfect life, but what kind of impact have we made for Christ?  We live this long and for the most part healthy life giving little to no thought of those around us who don’t know our Savior.  He was very blunt in his delivery and it would have flown in the face of a lot of Christians, but it was something we all needed to hear to push us out of this rut we get caught up in w/everyday life. 

We are here for one reason only and that is to spread the message of Jesus Christ.  It is a message of love and hope in a hopeless world.  Rick lost his youngest son in a drowning accident over a year ago and has since used his son’s story to share with so many about God’s love and faithfulness.  The impact that the life of this little 2 1/2 year old has made for the Kingdom has been far reaching, what is our impact?  Wow, that will convict ya, won’t it? 

Rick doesn’t want people to talk about the tragedy of his young son’s life cut so short, he wants people to see Jesus.  When I see Sophie Kate through the eyes of this world, I see tragedy and sadness.  I am utterly devestated and can see myself very easily falling into a hole of deep dark depression, but when I look at her through the filter of the cross, I see hope.  Glory to God y’all this life is not all there is, this is earthly pain and it will not last forever, Hallelujah!  One thing I have heard Rick say several times is that he knows God loves him, but Rick knows he is not the only one God loves.  I have to let that sink in….God loves me but I am not the only one He loves.  “For the Son of Man came to seek and to save that which was lost.” Luke 19:10.  May God be glorified through Sophie Kate’s life and through the lives of all the children like her.

Didn’t intend on going so heavy on you on a Tuesday, but that’s just what has been on my heart since Saturday.  What a neat experience it was to look out over the crowd of thousands all worshipping God together, all denominations, races and ages, pretty cool! 

We didn’t think we had enough children to keep up with among the thousands that were in attendance, so we thought we would add one more to our group just to make it a little more challenging, Cooper’s friend went with us.

This is how Grey spent part of Stadium Fest, until he rolled off , oh yes he did.  He (and we) quickly found out that that is an awful way for “he” to wake up.  The short version of that is….we left within the hour. 

How we ended up w/o a picture of Miss Sassy is a mystery to us all b/c she was sporting one of her cute summer dresses that day and also may or may not have had her toenails painted pink.  She did great Saturday, we were at Stadium fest for 4 or 5 hours and she was an angel, which is more than I can say for Grey after he took his fall off the bleachers.  He did make a quick recovery though when we rode the buses back over to our car.  Who knew riding a school bus for the first time could be so fun to a 3 year old and so not fun to an 18 month old.  SK did not appreciate the bumpiness that is a yellow school bus, just another fun weekend here.

Thanks for checking in on us, have a good week.

I feel like I need to catch everyone up on what SK has been up to lately besides receiving a great blessing from the most awesome fundraiser ever!!

Therapy continues to go well, it’s a painfully slow go but at least it’s a go.  Sophie Kate is starting to put weight on her feet on dry land instead of just always in the pool at “wet tots.”  Although as a side note, “wet tots” has been very beneficial to SK since her surgery.  There is just so much she can do in the pool that requires 8 arms to do outside of the pool.  She is really moving her legs well by herself when we position her floating on her stomach with her legs free to move.  Also, she continues to love standing in the pool while rockin’ her itsy bitsy ankle weights.

Sophie’s therapists have been commenting how overall, she seems to be more relaxed and her muscles don’t seem to be as stiff as they usually are, I have definitely noticed that too.  We aren’t giving her any more of her medication than we had been but we have changed the times of day that we are giving it and I do think that it has made a difference.

My girl still loves to be outside and with very few exceptions to that rule taking her outside will cure her of almost any crabbiness.  She is also engaging in more meaningful eye contact and certainly knows when someone says her name or speaks to her.  So if you see Miss Sassy out and about please don’t hesitate to speak directly to her, she really does know.

Inchstone Alert: We got our first laugh/giggle out of Sophie Kate on Tuesday (April 21) of this week!  It was very soft and very faint but it was a little laugh nonetheless.  It happened while her physical therapist was here at the house just being silly with her and wiggling her.  We have discovered that SK LOVES to move.  She gets a huge grin on her face when we wiggle her arms and legs and just be silly with her, but this past Tuesday was the first time that that HUGE grin broke out into a little laugh.  Oh, how it makes me long to hear the sound of that sweet angel’s voice.

Sophie Kate is also sitting better these days, she is able to sit “criss cross applesauce” with me holding her hands.  This is where she was presurgery so hopefully now that we have caught back up, we can start making some postitive progress toward sitting completely unassisted.  If you don’t know, the goal is to have our girl sitting unassisted by 2 years old, it’s a biggie and we are not giving up on it.  

Wanted to catch y’all up with some random pictures….

The boys of summer…

Now that’s a game face.

I cannot tell y’all how much I love this picture!  The big thing this year is eating sunflower seeds and then spitting out the shells, that’s what Cooper has in his mouth.  It must be a boy thing, SK, they just like to spit.

And of course a post is not complete w/o some pictures of Grey in his underwear, I know y’all have missed him as much as he has missed y’all.

Trust me, he does have underwear on.

Sophie Kate Easter morning.

My boys and my princess…

Thanks for checking in on us, hope y’all have a beautiful weekend!

Well, this time last week guys we were in the thick of it up at Chick-fil-A.  What an awesome day that was, God’s hand was evident over the whole day. 

One of the neat stories that came out of that day for me, was the story of the $2 bills.  A pharmacy owner in a south Alabama town handed out bonuses to his employees, $700 for full time employees and $300 for part time employees.  The business owner’s only request was that 15% be given to someone in need and that the rest be spent at local businesses.  In order to track the impact of the bonuses, this business owner handed them out in the form of $2 bills.  Well, I don’t know how any of those bills made up here to Trussville but y’all wouldn’t have believed the $2 bills in Sophie Kate’s donation boxes.  Oh, it still gives me chills.

I was also told of two boys (ages 8 and 12) who did chores to earn extra money and also used their allowances in order to donate money to our little Sophie.  Wow, does that speak to the character of those two young men or what?

Also, those who worked at Chick-fil-A last Monday spoke of the great atmosphere that was in their store all day.  No one was irritable or angry about waiting in the long lines.  It would have been so easy for y’all to have turned around and driven somewhere else to eat and I am so grateful to you all for waiting in those lines, whether they were in the store or in the drive thru.  Y’all made this day the huge success that it was. 

On that note, I did want to point out that $1500 of the Chick-fil-A money came from the receipts saved for Sophie, the other $4000 came from donations, AMAZING!  In addition to all that, we have also had various other family, friends and Sunday School classes who have donated money to us on behalf of Sophie Kate just because of the fundraiser, whether they ended up eating there or not.  So the updated total that has been given over the course of this entire fundraiser is….$7,357.00.  Praise God, what a blessing this is!!

I have been told by several people since Monday that there should be no question about how much our family is loved by our church and by our community, I certainly have to agree with that, but please let me clarify that it’s not just b/c of the money that was raised for SK.  There were a lot of people needed to make Sophie Kate day a success and everyone came together in such a great way.  The number of volunteers was exactly what we needed and everything fell into place so perfectly.  I have to give a HUGE shoutout to Theresa Suhr and Traci Collins, boy were they ever the backbone of this whole thing, love you girls.  Theresa, so glad that you were up to the technology challenge that this proved to be for you, we are all so proud.  Traci, thank you for organizing the lunch preorders in such a way that that Melissa had to say “enough, no more,” that’s a great problem to have.

Also, there have been volunteers at my house to sit with SK, so that I can have some grown up “time out,” there have been meals brought, laundry done (loved that one) and grocery shopping completed just to name a few.  We do feel loved and sooo blessed to be a part of this community. 

You all have given me something that I will carry in my heart always and when things get bad and I get down, I am going to think back to this day and I will always be reminded that I am not alone here.  

Thank you for the beautiful display of God’s love that we have been shown.

Don’t have time to post much, baseball has us running crazy tonight, but I wanted to let you know that we had a special visitor today….

Yes, that’s right, Trussville $5500.00.  You have blessed our family, thank you for your willingness to be used by God in such a moving way.  Don’t you love how the “cow” signed the check, too cute, more to come later.

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We are all still dragging over here, we just haven’t quite recovered yet from all the excitement of yesterday.  I have to say though that it is the "best," most content exhaustion that I have ever felt.  First of all let me start by saying that I do not have any numbers yet.  Melissa, from Chick-fil-A, has gotten in touch w/us and has said she would like to meet with us on Friday, so we may know something by the end of the week.

My heart is full and I have so many things to share with all of you.  Let me start off with "How ’bout that weather?"  For those of you who don’t live here, I want to let you know that since Monday April 13 had shown up on the 7 day planner(a week ago) all the way up until probably noon yesterday, we had a severe weather threat here.  One in which they predicted thunderstorms, tornadoes, large hail and damaging winds.  Y’all, I was checking the weather all weekend long and let me just paint a picture in your minds of what I saw.  Big, beautiful, bright sun on Easter Sunday, big beautiful, bright sun on Tuesday and a big fat dark cloud with rain and lightening bolts coming out of it for Monday, April 13.  I couldn’t believe what I was seeing, but man, we were plowing ahead and we were not going to let that get us down.  I had to let that go, I turned my worry and fear about the weather over to God and knew that He would accomplish his plan for SK’s Chick-fil-A day regardless of the weather.  Well, let me tell ya, the only place that saw big fat dark clouds, rain and lighting bolts around here were the forecasts, hallelujah!  The sun broke through around lunch time and stayed out all afternoon with no threat of thunderstorms in our vicinity.

Y’all we serve a God who is not bound by the things we are bound to like time, circumstances, or mother nature.  Praise Him, He does not have to work within the confines of our 7 day planner!  He absolutely can or He can choose to part those clouds and let that warm sun shine down on his creation, either way, His Will will be done.

For many people, SK’s Chick-fil-A day started at 6:30 am and from the reports I got, the drive-thru traffic started soon after, people ordering for their co-workers and offices.  Lunch and dinner followed with a full restaurant and a drive-thru wrapped so far around Chick-fil-A and out of the parking lot that I couldn’t even see the end of it.  People were circling multiple times and were parking in adjacent parking lots.  It was really something to see.

Our church was so helpful to us in getting word out to the community about Sophie’s fundraiser at Chick-fil-A, from printing all of our flyers to putting it in the church newsletters to even putting it on the church sign the day of the fundraiser.  We are so blessed to have such a supportive church family.
 
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Sophie Kate did really well.  She made appearances at breakfast, lunch and dinner, with only about a 4 hour afternoon break at home to rest and regroup before dinner.  These next pictures are SK fading fast with about 2 hours left to go before the day was over, but she just couldn’t take any more.

Going, going….

Gone.

Well, it’s obvious from the length of this post that the fundraiser blogging cannot be contained to just one post, so I am going to wrap this one up and save some of the most touching stories of the day for the next post.  I still feel like I am all over the place with my thoughts, hope they weren’t too hard to follow, more stories and pictures to come.

Trussville community, our family is overwhelmed by the out pouring of love we have been shown today.  We are still trying to take in all of the moments and stories that have blessed our hearts.  We don’t have any final numbers yet, but stay tuned b/c I will be posting them when I get them.  I have so much to share with y’all from my heart today, I just don’t even feel like I can make complete sentences at this point.  See, I can’t even come up with a good title for today’s post (what kind of title is Update). 

Wow y’all, God showed up in a mighty way here today and we are just humbled and speechless right now.  All glory and praise goes to the One who set things in motion a year ago in preparation for what took place today and His name is Jesus!!  God, humble our hearts and fix our eyes continuously on You, that nothing will be directed our way or placed on us, but that You and You alone are given all glory, honor and praise for anything and everything that is accomplished through Your perfect will.  Thank you for showing God’s love to us today, pictures and stories will follow soon. 

Alright local group, it’s finally here, Sophie Kate Day at Chick-fil-A.  All of our praying, planning and organizing comes down to this, please come and eat at the Trussville Chick-fil-A today, Monday April 13 between 6:30am and 9:00pm and tell them to “Save your receipt for Sophie.”  Rain or shine it’s going to be a fun day at Chick-fil-A.  Thank you all for your support, we are looking forward to seeing everyone there today. 

I hope my friend doesn’t mind me plagiarizing her facebook page, but I thought this was so interesting.  Our calendar coincides with the Hebrew calendar this year, so as we remember today, Good Friday, we can know that it really was on this very day that Jesus was crucified for the sins of the world.  On this very day, the Son of God was mocked, beaten, abused and ultimately died b/c of my sin and your sin.  On this very day, God showed mankind the amazing, unfailing love that He has for us.  A love so deep and so pure that He desires for none of us to die w/o knowing Him and w/o having a relationship with Him.

Praise God, that the story doesn’t end there.  Three days later Jesus rose from the dead and shattered the curse that sin had on our lives.  Because of the death and resurrection of Jesus, we can be forgiven of our sins through His shed blood.  He lived to die so that when we die we can live, if we have asked Him to be Lord and Savior of our lives.  Oh, I pray that you have.  There is no way our family could have gotten through the last 17 months w/o leaning on falling into the arms of our Savior. 

I so need to hear myself say these words b/c most of the time  I want to scream that “it’s not fair.”  I feel angry about what has happened to my little girl and I blame God.  I ache and I hurt and then I decide that I am going to handle everything myself.  I wonder “why” and let myself believe that I will never be able to get past this and then I think there is no way God still loves me or understands what I am going through and yet through it all He continues to love me, strengthen and comfort me with His unfailing love.

So let’s rejoice that our Redeemer LIVES and that in Christ alone our hope is found……

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We have been visiting way too many doctors offices lately.  Nothing major just your everyday run of the mill draining of an abscess, a scope for SK’s airway b/c of her “noisy breathing” and then coughing, sneezing and all manner of other gunkiness.  When we left the doctor’s office today, we all realized that SK may actually make it a whole 3 weeks before we have to see a doctor again.  Wow, wouldn’t that be something.  On that same note, I have to tell y’all that we are trying to get SK on the Medicare Waiver program.  Well, one of the questions we were asked in our telephone interview was “Do you see a doctor at least every 3 months?”  Chad quickly replied, “Oh that we could get to the point where we ONLY saw a doctor once every 3 months.”  My other favorite question that I am asked every time we go to an appt. and/or are admitted to Children’s Hospital is “Do you see any other specialists for your child?”  My response?  “Yes, lots” and I leave it at that, thinking to myself, please don’t go there, neither you nor I have that kind of time today. 

Anyway, back on track to the doctor’s appointments.  The gross drainage is gone(yay), SK’s little bellybutton area still has some healing to do, but it is looking much better.  We saw her ENT b/c her “noisy breathing” seems to be getting nosier.  He put a flexible scope into her airway and looked down to her vocal chords (not fun AT ALL), but actually concluded that she doesn’t look as bad as she sounds.  I’ll take it, good day sir.  No seriously, considering everything our girl has been through and how many times we have heard that everything will be fine and then it isn’t, I was thrilled with a “things don’t look that bad” report.  He said at this time he would not recommend any intervention since she didn’t seem to be in distress.  Of course he couldn’t leave us without one last “my goodness she is quite noisy though.”   That’s my girl.

Lastly, SK does have another cold with coughing, sneezing and bringing up all manner of secretions.  Even now I can hear the familiar sounds that come from her room all too often.  The droning sound of the humidifier, the repetitive turning and clicking of her feeding pump, and the familiar sound of SK’s breathing that we have all grown to know and love around here hopefully helped out tonight by being propped up on her wedge. 

Despite all that we have been dealing with over the past week, Sophie Kate still continues to feel better physically from her surgery a little over a month ago.  The more I see her regain the more I am reminded of how much she truly lost and how much that surgery set her back.  She is sitting with minimal assistance from me for a few seconds at a time.  She hasn’t done that since Valentine’s Day and I mean wouldn’t even entertain the thought.  She is also rolling over again from front to back.  I know, I know that used to be one of her favorite tricks but she hasn’t done it for almost 2 months.  Guess what…she’s back rollin’ rollin’ rollin’.  Putting weight on her feet and trying to stand also used to be a favorite past-time of Miss Sassy, that’s been absent for months as well, until last week at Wet Tots.  She did a lot of standing with her teeny tiny ankle weights, no joke, she totally rocks her itsy water weights.  She is also attempting to put some weight on her feet outside the water as well.  Thank you, Jesus!   

On a completely different note, we are all pumped that baseball season has finally started around here.  It is a welcome distraction for SK and I from doctor’s visits, therapy, classes and the many other evaluations and appointments we have every week.  I love the sounds of the ballpark, especially Grey’s running commentary whether from the bleachers or from the dugout.  Oh yes, he’s so close to the action that he can actually smell it, eww gross! 

I’ll leave you with this picture from Cooper’s last baseball game after a beautiful slide into 2nd base.  That’s right baby, there’s no crying in baseball.