It's Spina Bifida Awareness Month

Hi Everyone,
It's October and that means Spina Bifida Awareness Month.  Since I don't have as much time to blog as I used to with home schooling, I have decided to repost some posts from last year where I recapped our journey with Toby, his medical issues, and so others can see more about Spina Bifida. If you have any questions you would like me to answer - feel free to ask in the comments section and I will answer through the blog. Happy Reading!


"D-Day" or Diagnosis DayAugust 31st is a date that will forever be etched in our memories.  We went in for a routine 20 week ultrasound, and I had scheduled an appointment afterwards to meet with my doctor.  Bruce and Conor were with me, and of course the doctor was running behind.  I remember Bruce pacing in the waiting room, and I looked at him and said, "I would tell you go to work, but I think you should be here for this appointment."  It wasn't that I had a feeling of gloom and doom, but I think God was preparing us for what was next.  I will never forget the look on my doctor's face or the words out of her mouth, "There's something wrong with the baby."  At the time she didn't think it was Spina Bifida; their biggest concern was the shape of his head - suspected hydrocephalus.  Conor hid in the corner as I broke into sobs, and Bruce's stomach had dropped out that he almost passed out.  A few hours later - minus Conor - we were sent to OSU Maternal Fetal Medicine, and a level 2 ultrasound confirmed the diagnosis: Spina Bifida and Hydrocephalus.  The doctor told us we had options....termination if we wanted to.  It wasn't something we ever even considered - I could feel him kicking inside of me, moving...I had life inside of me.  We knew no matter what lay ahead, God would be faithful every step of the way.

The e-mails, letters, and cards full of verses and encouragement came pouring in.  Some of the best advice was, "God has a plan for your baby."  Another wonderful mom - Carol Lyden - who's own daughter has Spina Bifida ran into me in Meijer one night.  She hugged me and said, "Congratulations".  Although, at the time I didn't completely understand what she meant, I do now.  Having Toby has changed our lives forever - for the better.  I was asked today during a presentation to nursing students at NCH what has been the biggest life lesson I've learned.  My answer: "My faith in God is deeper than ever before, and I've learned gratefulness."  No matter how bad it is - we always have hope.  Even in death, we have hope - the hope of heaven.

So, our experiences with NCH began even before Toby was born. We were referred to their Fetal Diagnostics Program. This helped us prepare for Toby's birth.  We toured the NICU, met with doctors in the Myelomeningocele clinic, and met our neurosurgeon who would perform his first two surgeries.  I even had a fetal MRI.  I have heard so many stories of doctor's giving parents horrible predictions and worst case scenarios of what their child won't be able to do.  That was not the case with us.  Mostly, they just educated us about the beginning of life, birth, and the rest was left to God. I'm so thankful for that.  Our first experience with family centered care.  Stay tuned for more tomorrow....

The Good, Bad, and Ugly of Home Schooling

I haven't written much about our decision to home school this past year.  It's felt very private, I guess, and I wasn't ready for the questions or criticism that might come with it. I can tell you that it wasn't an easy decision.  Two falls ago, I began to feel this nudge from the Holy Spirit during a Bible study on Genesis and Abraham, and trust me in saying that I fought God on it for months. I would read questions like:

“What things of the world around you is God calling you to leave behind in order to follow His word and trust his promises?  In what way is He asking you to trust Him, though you cannot see ahead?”

"Where has God called you to separate yourself to Him?”

“Are you hesitating right now to answer a call from God, because you are afraid of what you might lose, rather than moving forward according to His promises?”

“As you discern God’s will in your life, whose voices are more important to you and which are you more willing to obey – the voices of your family, your friends or your Lord?”

“The thrill of undertaking a new challenge or answering a new calling always comes with a cost.”

“God calls His children to take the long-term view.  Where does shortsightedness undermine you or the future of your family?”

 “What do you look for first as you make choices?  Do you choose based on what will bring you and your family closest to God by faith?””

“What struggle with fear are you experiencing right now?  Will you trust God rather than forming a wrong strategy of your own?”

“How will you reject your fear and your own designs, and trust the Lord for His direction and protection for your life?  Will you trust the Lord to fulfill every promise He has given you in His perfect timing.?

“What are you holding back from God because of fear?  What new step of obedience has God called you to take?  Will you dare to begin to experience even in small ways God’s similar blessing on your life?”

Can you say "Dagger to the heart?"  And trust me, there were even more quotes and questions to this - I had to cut it down so this post wouldn't be a chapter in length.

We loved the schools the boys were in (Toby in one different from Conor and Garrett) - but God was moving, and so we began to pray.  Bruce wasn't as convinced at first, and so I also committed him to prayer, and eventually God moved his heart also.

How did our year go?  How is the new year beginning?

Our first year has been rough - crazy rough.  We had really good days and really bad days. There were days when the kids are fighting/arguing and driving me absolutely crazy.  There were days when I am/was hauling all four to the hospital for an appointment for Toby, and I worry about everything they are missing.  Then there are wonderful days.  Days where all four kids are playing together on their own - Toby is included. We are doing a fun experiment in science, and they are really learning the material.

The new year has begun, and this time Toby has joined us.  We joined a home school community called Classical Conversations.  It follows a classical form of education, and if you aren't sure what that is - try reading:

The Core: Teaching Your Child the Foundations of Classical Education by Leigh Bourtins
A Well-Trained Mind by Susan Wise Bauer
Simply Classical: A Beautiful Education for Any Child by Cheryl Swope

All three have really influenced a change in how I look at education.  I won't go into that now, but we are two weeks into it and I can say that I LOVE IT!

What I’ve Learned Our First Year of Home Schooling

1.  Homeschooling is not just doing school at home:

It's exploring, investigating, taking the time to truly learn something together.  It's doing life together.

2.  Before you begin your year or even your journey, work out your main goals and purpose and write them down.  When days are not going so well, go back to those goals and remember the main reason why you are doing this.

For us, God called us to it out of a great private school situation, I must admit, kicking and screaming.  We were comfortable, we have Toby, who is in the hospital almost every other month – I had no idea how we would make this work, but it’s worked.  The main reason was that we felt the kids needed our family to be just that – a family - moving in the same direction.  Our main goal is for our children to know Christ, to grow in our relationships with Christ and each other, and to glorify Him. That is happening - our kids are more content, settled, our life is actually less chaos.  TRULY IT IS LESS CHAOTIC!

2.  Curriculum isn’t meant to be followed word for word, step by step.  Tailor the lessons to your kids and to your needs.

                I scrapped so many curriculums last year it’s not even funny, and I bought one curriculum I thought I would love, and I didn’t.  The point is that if something isn’t working it is okay to change.  That’s been very hard for me to accept, especially when I felt like I was wasting money.  I also learned to change the curriculum to fit my kids.  Late December, I realized with a sinking feeling that my fifth-grader was in a fourth grade math book, and he’s really bright in math.  He was bored, and I was frustrated that I had missed this.  I had to let it go, we ordered the right level and will catch up this year.

3.  Sometimes four kids are all going to need help at the same time.  I needed to learn to function in chaos. 

It’s very hard for me to work in disorder and function in chaos.  I really struggle when my schedule is up in the air and the whole month is not planned out in advance.  Homeschooling has taught me to let go of that schedule and roll with it.  There were days we completely skipped the books to work together to clean the house.  Days when one appointment at the children’s hospital took an entire day and the kids were working from their backpacks.  Home schooling is about doing life and doing it together.  I really had to let go of the guilt that some weeks we were spending so much time at the hospital or missing days of school work because our son had yet another surgery.  God gently reminded me that it’s good for the kids to see how my husband and I were handling these situations, being real, and learning life lessons instead of school lessons.

4.  Keeping a schedule and being prepared is important, especially for kids that easily get distracted.

Our best days are those when I am up before the kids, have had my quiet time with the Lord, prayer, and planned our day.  I am not a morning person and so this is really a struggle.  When the kids had to be at the bus stop by 8:15 a.m. it was almost easier because we were accountable to the school to be there on time.  With home school our days are more relaxed, but I’m striving to keep that accountability in place.  It grows my relationship with God, my husband and my children.  All of us are also learning flexibility. I have one child that is very self- motivated and can complete his work without too much prodding from mom, and another that is extremely reluctant to do much without me holding his hand.  There are days I feel like pulling out my hair, but then I remember the main reason we are doing this, and we keep going!

5.  Learning happens anywhere and anytime

I used to be a school teacher. In some ways this is helpful in home schooling and in some ways it means I expect home schooling to be like a classroom, which is definitely not the case.  I am learning to create learning opportunities everywhere we are – at the grocery store, gas station, even doctor’s appointments.  Another mini-goal we have had is to teach our kids to critically think and become life-long learners. There were times when I just wanted to give my kids the answers to problems so we could be finished with the subject and move on to the next (I had to check off that box), but that’s not learning. The best way we can do this is to create opportunities for them to ask questions and search out the answers.  Instead of feeding them the answers, give them the tools to learn it on their own.  Another way is to model how we are continually learning and growing in different areas in our lives. 

5.  God is in control and He will fill in the gaps!

There’s a quote that says, “If He leads you to it, He will get you through it.”  There are days I feel extremely overwhelmed by the responsibility of it all – the spiritual, emotional, and educational training that falls on our shoulders.  The Holy Spirit gently reminds me that His power is limitless, and as it is true that I can’t do it all on my own, I can do it only through HIS strength.  We are going to make mistakes, forget things, and even sometimes completely blow it.  His grace is there to cover. A few months ago my sister and I had a conversation about our growing up years and something she said will stick with me forever.  She said, “Would you admit that the mistakes our parents made in raising us have been the biggest areas that God has used for our growth, our repentance, and our good?”  It is definitely the case.  God has used those things to teach me, grow me in my relationship with Him, and refine me.  God is so incredible that He can make something good – even out of our own sin.  I’m amazed at that and in awe of His grace.   “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”  Romans 8:28

Finding the Right One

Our biggest prayer request right now is for us to find the right nurses. This is a huge weight on me, and I am trying to trust God, but it's also difficult at times, because I feel like we are getting looked down upon because we didn't just hire the first nurses we interviewed. Please pray for us in this. Toby is doing great - my mom is here again (thank you, Lord for providing for the other boys!), and we have our training on the ventilator today! :) Yikes! Thank you in advance for praying specifically about the nurses.

Walking on the Water

The last few Sundays the messages at church have really been convicting my heart and encouraging me at the same time. We have been talking about missions and our responsibility to step out in obedience to whatever God calls us to do.  We've asked ourselves, "What is God calling me to step out in obedience to?"  Our worship band began singing Hillsong's Oceans.  It isn't exactly a new song (the album has been out a year), but it's new to me.  God has been using this song and Stephen Curtis Chapman's song "Take Another Step" to reveal some things.

Hopefully I can articulate this in the way I feel I need to, but in SCC's song - it talks about how life is like being in a marching band during a parade.  You're going along and your steps are strong and straight - the flags are waving, everything is peachy.  Then, a storm comes up.  The lightning and thunder flash and crash, and everything goes black, you aren't sure where to go or what to do.  It reminds me of Psalms 119:105 "Your word is a lamp to my feet and a light to my path."  I heard a pastor say once when the darkness is all around you, a lamp doesn't light up very much - it will shine only right in front of you.  If you hold it by your feet it will light your steps, you don't always see the end or see the big picture, but it will light your path step by step.  God's word does that for us through anything we face in life.  It will light our way if we allow it to guide us.  We may not see the end, but we can see the next step.  In the song "Take Another Step" the message is how as Christians we talk about walking by faith and not by sight, but it's another task when you are actually called to do this.

"But none of us can even begin to truly understand
What it means 'til all the lights go out
And there we are, nothing to hold on to
But the promises God's made to me and you.

If there's an ocean in front of you
You know what you gotta do
Take another step and another step
Maybe He'll turn the water into land
And maybe He'll take your hand and say
Let's take a walk on the waves
Will you trust Me either way

The last part of the song references two instances in Scripture where people were faced with taking steps of faith.  The first is Moses leading the children of Israel away from slavery under Pharoah's rule.  Behind them was Pharoah's army approaching fast to take them back into captivity.  He had changed his mind and he didn't want to let the Israelites go.  In front of them was the Red Sea, God caused a pillar of cloud to stand between them and the Egyptians, "Then Moses stretched out his hand over the sea, and the LORD drove the sea back by a strong east wind all night and made the sea dry land, and the waters were divided." (Exodus 14:21).  Moses had to have faith that when God told him to stretch out his hand God was going to do something.  The people had to have faith walking through the middle of that sea, that the waters would not come down on them.  Each of these steps required obedience and faith on their part, that God was faithful and He would be their salvation.

In the second part of the song, it's referencing Peter.  Jesus had just fed the five thousand plus women and children with five loaves and two fish.  Then, He made the disciples get into the boat and go before him to the other side.  He dismissed the crowds and then went into the mountains to pray and be alone.  The boat was a long way from land and a big storm came up.  They saw someone or something walking on the water. They were afraid it was a ghost, but Jesus spoke to them and told them not to be afraid.  That's when Peter asked, "...Lord, if it is you, command me to come to you on the water.  He said "Come".  So Peter got out of the boat and walked on the water and came to Jesus." (Matthew 14:22-33) Sometimes, Peter has a bad reputation because eventually he takes his eyes off Jesus and begins to sink, BUT he was the only one to get out of the boat.  

God is teaching me that sometimes He's asking us to take steps of faith when things are going well.  Our steps are sure, and that still small voice calls us to obey Him in a certain area.  Sometimes, though, it's through trials and difficulties.  The storms come, and He's asking us to trust Him and have faith through this. We have to trust His promises: "I will never leave you nor forsake you.  So we can confidently say, The Lord is my helper; I will not fear; what can man do to me?" (Hebrews 13:5b-6)

So, this morning during church I sat sobbing while our worship team sang Hillsong's Oceans: Where Feet May Fail.  I'm pretty sure that anyone whoever sees me at church on Sunday thinks I'm always an emotional basket case. I can't explain it, but almost every Sunday, God is speaking to me through the messages and the songs - convicting me, teaching me, and yes, inspiring blog posts.  I don't know if part of it is the emotional release of praising God through song, and the fact that all week I am holding myself together, never focusing on the hardships of our journey.  Then, on Sunday I have time to stop and get perspective, to really focus on HIM (although I try to have quiet time every day).  But, it's also my day of rest, not only physically, but emotionally and spiritually - a day of release to lay my burdens down (not to mention our Pastor's messages are truly Holy Spirit led).

The way this song speaks to me is that in our case with Toby, we did not choose this journey of special needs.  We didn't choose special needs, hospital stays, agony, pain, and hard things.  Sometimes people do choose this journey- God calls them to adopt children with special needs and they take that step of faith and obedience.  However, God chose this path for us - He called us anyway through allowing circumstances that then forced a decision on our part.  Were we going to trust, love and obey with how we lived our life through it or would we fight against Him, shut him out, blame Him, grow bitter, cynical, and let it destroy our faith? Would it grow our faith or end it?

The song "Oceans" says:

"Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior"

I realized this morning, that my feet would have never wandered into this with Toby - I would not have chosen it, but God led us to trust without borders.  He has taken us deeper than our feet could ever wander. There have been several blog posts lately about how sometimes that phrase "God will never give you more than you can handle" is really not true, and I agree.  I cannot handle this in my own way, my own strength, or with more faith in myself.  It's His strength, His promises, His plan that I trust.

I also realized that if I had to go back and God allowed us to choose - I hope I would choose this path all over again...I truly think I would. Not because I'm a hero or a martyr, but because of how my faith has grown, what I've seen God do, how I've seen it grow all of us.  I often tell others I know God in a way that I never would have, had life's journey not taken us down this path.

This song is also my prayer that God will lead me into a place where my trust for Him is without borders, to take me deeper with my faith in Him. Sometimes that's really scary, and I do wonder what God will call us to next.  Not that I believe He wants to cause us pain and heartache, but He does want our faith to grow - He wants us to be ever living life dependent on Him.

A few weeks ago I was getting Toby ready for church and he said something to me that he really hasn't ever said, "Mom, why do bad things always happen to me?" (I believe he was talking about all of his surgeries). It was a really tough question and I stumbled a lot, but basically reminded him that yes what he goes through is very hard, but we still have much to be thankful for.  Then, I reminded him of heaven, and the fact that we have the hope of heaven when we know Jesus as our personal Savior (which he does).  One day he will run and not need his wheelchair. One day he will not need his trach to breathe.  He asked me, "Mom, how does God do that?"  I told him that it's through God's power - He makes all things new and Toby said, "It's kind of like magic."  I told him yes that God's power is amazing!

No matter what God calls us to do - whether by asking us to choose a path He's called us to (ahem...homeschooling) or causing circumstances to change the course of our life the hope of heaven is ever sure.  He is standing on the waves holding His hand out to us - we just have to step out of the boat.

Hello Mornings

My husband can tell you with complete assurance that one of my favorite places to be in our house is my bed.  I love its warmth, comfort, and I love to sleep.  Getting up early has never been my forte.  I am a night owl, love to stay up late, and then sleep in the next morning.  Carrie getting up early is an oxymoron, but over the past eighteen months, I have been trying to change that.

In November of 2012, during a women's conference at our church, a friend told me about a blog and online challenge group called "Hello Mornings".  It's a way for Christian women to connect for accountability through social media (Twitter, Facebook, and Instagram) literally across the globe.  What's the purpose?  It has three goals: Time With God, Plan Your Day and Move Intentionally (better known as exercise).  During that conference, I felt God convicting me to be more intentional about my days, my parenting, my marriage and my personal relationship with God.  The introduction of Hello Mornings has really had a positive effect in my life, and I can certainly tell a difference when I'm slacking and not getting up early to pray and read my Bible.  This call to obedience to be more intentional also began the call to home school, which was a HUGE step of faith.

Each quarter there are challenge sessions, and the new session starts February 24th, with registration opening February 17th.  I am an Accountability Captain this session, which basically means I should be the first one up in the morning posting on our group for others to check in, and encouraging/praying for members in our group.  My friend Heather is my Co-AC, as I cannot do this alone.  She has really helped me with the accountability factor as we text each other the night before to make sure we are getting to bed early and in the morning to see if we are up.  I have really needed that consistent accountability and encouragement for the times I fall off the bandwagon!

I'm anxiously awaiting the start of the new session.  To say that I've been a slacker the last few months is quite the understatement, and I can see how it affects our home school days as I'm still trying to squeeze in a shower at 7:00 or 7:30 a.m., and get breakfast.  My goal is to be up at 5:30 a.m., but 6:00 a.m. is sometimes more realistic.  My sleep is very precious to me, so this has been a sacrifice, but I'm trying.

I have been cursed with perfectionism in that my involvement in any type of activity is either ALL or NOTHING: 110% or 0%.  Hello Mornings has really helped me to realize that I'm not perfect, there are days I will sleep in, days I will make mistakes, but to keep plugging ahead and trusting God ultimately that He will give me the strength to get through each day even when I am sacrificing hours of sleep for Him!  He can and does do that - He will bless me with energy to face each day.

If you are interested in joining us this session, click on this link - and look for our group - under my name and Heather Hysell.  Registration begins Monday, February 17th for new group  members.  If you can't join our group, there are many others to choose from, and I can guarantee that it will be a blessing.  The free Bible study this session is on the book of Ruth.  If you aren't able to join a group this session, please take a lot at the blog, and read more about it.  Even if you aren't a morning person like me and take a few steps towards an intentional day, I know you will be blessed.  Hello Morning!

God's Amazing Love

So, needless to say it's been a pretty rough week.  Monday started off with the news that Toby needs yet another surgery on Friday.  His rods are not staying attached to his ribs or his pelvis like they should.  He was also referred to the bone density clinic to see if that may be one of the reasons the hardware continues to work itself through his hip bones.

For some reason this surgery is hitting me harder.  It's not any different than the one he had in September, except this time it's the right side instead of the left.  Maybe it's because VEPTR feels like a ticking time bomb, and you never know when it's going to go off or when the surgeon is going to say enough is enough - his body can't take anymore - and we are running out of options to straighten his spine.  Maybe it's because it's that time of year, and several days in the hospital throws me for a loop.  Maybe it's the crazy list of "to-dos" that gets longer and longer.  I am such a perfectionist, that I don't know how to let go - every thing that I have listed in my mind that must get done and it will get done!!!  I'm sure it's a combination of all of the above.

After the surgery news, I took Caris over to the lab for her first blood draw.  They had to take around 35 ml of blood out of that sweet girl (that's over an ounce of blood).  We are seeing a new doctor that takes a more natural approach to medicine, and we are wanting to get to the root of why two years ago she developed respiratory issues and has been on Singulair ever since.  Every time we try to stop it, she gets a respiratory illness.  I really do not want her to be on this medication long term, but something is causing respiratory issues (coughing, wheezing, runny nose, etc.).  When we went in for the blood draw she said to me, "Mommy, I will try to be brave."  She was so brave, didn't even really cry until it was over.  We are trying to get her off dairy, but oh my goodness - it is so difficult.  Food allergies are a new hurdle for us, and I admire all of you that deal with this on a daily basis, especially when it is life threatening.  I can't even imagine, but it's yet one more thing to deal with right now.

We had a wonderful time on Toby's Make-A-Wish trip to Disney.  The trip was perfect, and I promise to post pictures and details soon.  The timing was perfect, we met wonderful people, and Toby and our family was treated like royalty.  It was such a blessing; we had a great time together as a family.

Your love and prayers have been surrounding us.  I am at peace in my grief, and can feel the arms of God holding me right now - He truly is holding all of us up.  It is so hard for me to accept help, I feel like I can never repay what everyone has given to us (meals, visits, prayers, house cleaning).  I know that I should not look at it as a tit for tat, but I am wired in such a way that I don't want anyone to ever think we are "that needy family" that never gives back.  I also want our children to serve others - to not feel entitled.
I'm also learning, though, that it blesses others to give to us, that our kids are seeing real life - what it's like to give to others, how to be thankful and humble in tough times.  It's also sinking into my heart that we all give in different ways, and God is still using us...that is humbling and awe-inspiring too.

Today, the most amazing display of God's love happened to me, and I was so thankful to share this with our kids afterwards.  My middle sister Lynsey and her husband Anthony have been staying with us this week. They are in the process of moving from Nicaragua to South Dakota, and are going through major transitions of their own.  Last night, Lynsey, Caris and I had the wonderful opportunity to do some Christmas shopping together while the boys were blessed to see OSU play basketball.  I bought some Christmas presents at Kohl's, and realized as I was checking out that my coupon for 25% off wasn't good until the next day.  I could only get 20% off today.  I went ahead and made the purchase because I'm not sure when I'll get the time again, but today it was bothering me so much I decided to go back to Kohl's and see if they would make a price adjustment.  PLUS - I can earn Kohl's cash today.

I know I can be long-winded, but bear with me.  So, being my Type A self, but also having some extra time today while the boys were at gym class, I ran over to Kohl's.  For once in my life, I went up to Customer Service - calm and not demanding that they "fix this" for me.  I politely asked if they would return the items, and offered to take the returned items to one of the longer cashier lines to re-pay for the items, get the bigger discount and the Kohl's cash.  She said, she didn't mind doing it there, and I offered a few times, but she was gracious and returned the items, and then re-rang.  As often is the case at Kohl's, one of the items rang up more expensive because they change their sales for the weekend, and so I mentioned to her that I may not take that item, but would wait until the end to decide.  Then, I decided to just take it, the price difference wasn't that much. After a moment she said, "I'll just change the price to what it was yesterday."
For a moment, I was taken aback, and then I began to tear up at her kindness.  She was being so patient, and God prompted me to tell her about Toby.  I told her that we have a six-year old son who's having his 22nd surgery tomorrow at Children's, what she did had truly blessed me, and I thanked her for her kindness.  She turned to me and grabbed my hand and said, "I prayed this morning to give someone a blessing today, and I didn't know who that would be...it was you."  We both teared up then, and we talked about God's amazing blessings and how good He is.  She asked more about Toby, and I was able to share about him. She told me she would say a prayer for him.

It was just an amazing moment, and God was able to show me how He connects the body of Christ through complete strangers. I know right now there are people that don't even know us personally praying for us and for Toby.  The Bible says, "How precious to me are your thoughts, O God!  How vast is the sum of them! If I would count them, they are more than the sand..." (Psalm 139:17-18a).  What is truly awesome about God, is His love is available to anyone - no matter what you've done or who you are.  It's not an exclusive club and there isn't anything you have to do to earn His love.  There is one thing, that is required, though, it's surrender - to turn from sin and accept His grace and forgiveness.    Some have mentioned that our strength is amazing, but it's not mine - it's God strengthening me (Philippians 4:13).  Some have said that they don't know how we can go through so much and still have smiles - again it's not us, but the peace that surpasses all understanding when we lay our burdens at His feet and let Him carry us through. (Phillipians 4:6-7) Some might say that this relationship with God is not for them - it's not available to them, but it is - we pray you will see that and accept it.

I am beyond blessed today and am so thankful for all of you.  Thank you for storming the throne of grace with your prayers, we are lifted up.  I am rejoicing in God's plan and taking today one hour at a time.  God holds tomorrow, and as He has proven to us over and over and over again.  He is faithful and His love is amazing.  Surgery is at 10:40 a.m.  We have some crazy snowy weather coming in this evening, so planning ahead for that possibility too.  We will keep you posted.

(P.S. It was the Kohl's on Sawmill Rd.)

Shunt, Shunt, Shunt

I apologize for not finishing out my series during the rest of October; as you can probably tell, my blogging can be inconsistent! GASP!  

Do you mean that having four children, one with major medical and special needs, doctor appointments, dentist appointments, traveling to visit family, home schooling, sports practices, running a half marathon, and just being a wife and mom doesn't lend itself to copious amounts of time to blog?  Uh, NO!

I do intend to complete what I started; I have a few more posts I want to share to summarize our journey with Toby.

Today's post is about our experiences with the shunt. The shunt was developed by an engineer in the 1950's for his son.  Ironically his name was John W. Holter (Toby's Grandpa's name is John Holt).  He and his wife had tried for ten years to conceive, and then their son was born with myelomeningocele and hydrocephalus. The device he invented - the shunt - helped his son live until the age of five, but then he passed away from complications related to his heart.  My information came from this article (they state his condition as "meningomyelocele").  

Hydrocephalus is a condition in which the ventricles in the brain are producing too much cerebral spinal fluid (CSF) As I understand it, and correct me if I'm wrong on this, Spina Bifida friends, but all ventricles produce CSF.  However, as a result of the open hole in the back in utero, the ventricles are programmed to overproduce fluid because it's leaking out through the open hole instead of recirculating though the CSF system.  Once that hole is closed after birth, the ventricles continue to overproduce CSF therefore causing the head to swell.  Not all kids with SB and hydrocephalus require a shunt, but Toby did.  His first shunt was placed when he was 4 days old.

 

Shunts are very fickle devices.  Some kids keep their first shunts into adulthood, others only last a few days. The device is a catheter (think straw) with little holes in it that is placed surgically into the ventricles of the brain.  It is attached to tubing that goes down the neck and ends into the abdominal cavity.  There the excess CSF is reabsorbed by the body.  There are risks of it clogging, failing, breaking, coming apart at the distal catheter, and also infection.  There are also programmable shunts and shunts that has tubing that ends in the region of the heart.  Toby's is a ventriculoperiteoneal (ends in the abdominal cavity), and his is not programmable.  

This site is where I found this picture of the shunt.  That same site also has a great MRI picture of the brain with normal ventricles and ones that are swollen with fluid.  Here is a link to more information on the shunt.

Toby's first shunt failure occurred when he went back into the hospital with his breathing issues around 2 1/2 weeks. He had his first shunt revision on January 25th, 2007.  He was barely a month old.  It was very obvious that he was in failure; just inconsolable - crying constantly.  I think the fact that he became hyponatremic (sodium drop), and is changes in blood pressure and temperature were also shunt related.

His second and third shunt revision wasn't until November 9th and 10th of 2010.  This was the first step in finding out whether Toby needed his spinal cord detethered.  The doctors typically explore the shunt first.  In Toby's case, he definitely needed this revision.

There have been other times when we've suspected it wasn't working - the mamas in the Spina Bifida community affectionately or unaffectionately call it SMP (Shunt Malfunction Paranoia).  Toby typically doesn't have the "normal" symptoms of shunt malfunction.  The last time he had a shunt malfunction completely turned our lives upside down.  I had been suspecting for awhile that something wasn't right.  He was impatient, ornery, and his nystagmus (eyes jumping) had gotten really bad.  I called our nurse case manager in the SB clinic that week telling her of my suspicions, so she had the doctors order a limited MRI along with his other tests for clinic that Friday.  

Before this, typically, CT scans were used to check shunts.  Unfortunately, this test exposes kids to large amounts of radiation.  I think I've read that one CT scan is the equivalent to 100 chest x-rays of radiation. The neurosurgeon Toby had at birth left to start an SB clinic in Arizona.  We switched to our current neurosurgeon and he prefers to use the limited MRI's to check brain ventricles for swelling. The benefit is the little exposure to radiation.  The downside is they are really loud, and Toby screams the entire time.  It's really hard on him.

After getting all of Toby's tests and waiting forever to see doctors that day in clinic, our nurse came in looking grim.  The MRI didn't look good - it showed swollen ventricles, and neurosurgery wanted us to head to the ER right away.  He had a few more tests, and then the resident dropped the bomb of trying out a new surgery on Toby called an ETV or Endoscopic Third Ventriculostomy.  The link explains this procedure much better than I can.  He was admitted and had surgery on March 17th, stayed a few days for observation and then went home.

That week we were keeping a close eye on him.  With the ETV, a little more CSF stays in the ventricles than with a shunt.  The risk is also that the fenestration they make in between the third and fourth ventricle can close, so we were watching for that too.  The doctors also left the shunt in, and they had discovered it was indeed clogged.  They leave it in because it requires another surgery - another incision in a different part of the head to take the shunt out.  It can also work as a back-up in case the ETV doesn't work, even though it was partially clogged, some of the catheter was still draining fluid.

Then, Saturday morning around 6 a.m. I woke up to our nurse yelling, and Toby's pulse-ox was going off.  I ran into the room only to see our son's eyes rolling and immediately I knew he was having a convulsive seizure.  We checked to make sure he didn't need to be suctioned, and then we called 911.  That ride to the hospital was one of the longest in my life.  I remember arriving, being ushered into critical care.  By this time, Toby had stopped seizing, even though, I can't really remember when the seizure actually stopped because he was just staring off into space.  My first thought was that there was too much pressure in his brain, the ETV was not working, and he needed to immediately go into shunt surgery.  The medics got an IV in, and they drew blood to test for a variety of things.  The biggest thing that came back was his sodium was low - hyponatremia again.  It was 118.  They began to run high concentrations of saline but not too quickly or it could cause seizures also.  He began to seize again, and this time I can't remember what time it stopped.

I don't remember much after that, but here are a few memories:

*His sodium was corrected and he was still seizing....

*Bagging - I remember the RT's and nurses bagging him off the ventilator because his oxygen was dropping, and he was fighting the vent.
*A nurse with a face I don't remember hugging me as I stood watching them work on him, and I could only break down into sobs.
*Bruce showing up in the ER and he and I sitting on the floor watching them wheel him up to the PICU.

*An employee from admitting trying to get my insurance information as we tried to follow Toby up to the ICU - and a great feeling of wanting to smack her - this wasn't the right time.

*Being ushered out of the PICU as the chief resident in neurosurgery prepared to do a ventriculostomy - basically they put a cathether in through the ventricle to test the levels of pressure.  They ended up having to do this bedside as the OR was booked with other cases (It was the weekend).

*Sitting in a room waiting, praying, sobbing...

God was definitely with us through this entire process, even though I really questioned His wisdom in allowing this to happen.  I felt like He had moved His hand of protection from Toby - we hadn't had an emergency like this in awhile, and so I wondered why He had decided to allow this.  In the PICU that day, the neurologist on call for the hospital was sent by God.  She was/is so knowledgeable about seizures, and her approach to Toby's care was so family centered.  One of the rotating doctors in the PICU also had just finished up time with neurology, so I felt like they both had a plan.

I remember laying on Toby and crying out to God to stop the seizure as he continued to seize, medication after medication had been thrown his way, and still nothing was working.  He tremored every few minutes, which they said was still convulsive seizing, but his body was just too tired to do it all over.  I remember asking the doctor what would happen if they couldn't get it to stop, what would they do. Her response was anesthesia or some type of heavy sedation.  They finally had to use versed to get it to stop (a sedative).

Then, they put on the EEG leads to see if his brain was still seizing, but his body could no longer respond. The intracranial pressure monitor never did show an increase of pressure in his brain.  It was clamped most of the time (it's the yellow/orange tube coming out of Toby's head in the photo below).  The doctors couldn't really explain why this had happened.  We believe it was a reaction to the ETV surgery and his sodium dropping.  There were only a few cases of kids having seizures after the surgery, but Toby added one more to the medical literature.

The middle photo on the right with his one arm in the air, was the first time we saw him make a voluntary movement.  Bottom left was his first smile.  Middle were the incisions from the ETV, and the other was the intra-cranial pressure monitor.  

By the next evening, he did start to wake up and the EEG showed no seizure activity.  I'm not sure why, but seizures have always been one of my greatest fears.  The doctors haven't ever been able to give me a straight answer on how long he seized - we know it was between 4-6 or maybe even 7 hours straight.  I kept praying that I would hear his voice again, see his smile, and have him look me in the eye. I also realized how greatly I had taken those things for granted.  It reminded me again to be thankful.

Even though, Toby was waking up and was moved out of the PICU. He could barely hold his own head up, so the doctors began to talk of moving to the Rehabilitation unit.  This way he could get consistent therapy and learn to sit up, move, write, and eat again.  We did move to that floor after about a week.

Toby was learning to throw a ball again he could barely hold himself up or his arms over his head; he was so weak.

Toby only spent about 5 days in rehab.  You could tell by the end of the week that he just needed to go home.  In two days it would be Easter, and I couldn't handle one more day being in the hospital.  He was discharged on Good Friday!

I read Psalm 31 over and over during this hospital stay.  The verse below rings out its' truth over and over:

Psalm 31:4-5a "But I trust in you, LORD: I say, "You are my God."  My times are in your hands..."

Just last month we had a follow up appointment with his neurologist.  The same one that was there in the chaos, the same who happened to be on call for the hospital.  We talked about the seizure again, and I asked her to pin down for me how long he actually seized.  It was going to take too long to dig through all of his medical records, even electronically (that's scary), but she reminded me that once someone convulsively seizes for 20 minutes it's too long.  After that they risk damage to their hippocampus in their brain.  The amazing thing, and this is God's healing, is that Toby's MRI right afterwards, and every one since has shown no damage to that area of his brain.  I am reminded that our times are in His hands - our very life and breath. He knows all.  So much good has come out of that situation:

*A reminder to me that I am not in control was one of the biggest, a renewed trust in God's faithfulness.

*Deeper thankfulness for the abilities that Toby does have, instead of focusing on what he cannot do.
*A renewal of our full nursing hours; this sounds crazy, but right before this our insurance tried to cut them and then because of this situation, they couldn't justify it.

*The ability to declare God's healing in Toby's body and brain.
*In many ways I think it prepared us for the road ahead with the multiple surgeries on Toby's back/scoliosis.

*We saw the body of Christ reach out to us through a brand new church we had only been attending for a few short weeks before this situation...and it led us to stay there - a church that has a passion/gift for reaching families of children with special needs. 

Some may ask if we had do make the decision to do the ETV all over again, would we?  I think we would, we made the best decision we could with the information we had at the time.  Even though there are days, I still question whether it's working properly, it has taken away some of the worry whether or not the shunt is working.  This is only what I can think of right now, although I know there may be many more in years to come as God reveals His purpose as He sees fit.  He has a way of bringing back these situations and we can say, "Oh, that's why that happened." To God be the Glory, Great things He has done.