Did He Really Mean Everything?

Over the past few weeks, I have been contemplating thankfulness.  What does it truly mean to be thankful?
I chuckle to myself, as I am often quoting Philippians 2:14 to my kids "Do everything without complaining or arguing."  No one had to teach my kids how to complain or argue.  As soon as Conor learned to speak in complete sentences he was negotiating with me, and I think he was 20 months old.  As they have gotten older, they are even more skilled at complaining and arguing.  I have been trying to teach them thankfulness with our "thankful tree", and in various other ways, but then I was convicted.

This still small voice asked me:

"Do you model this for your children?  Do you complete every task without complaining or arguing?  What about the small "grrrrs....." your children hear?"  (I'm not always particularly fond of that still small voice.)  I realized that when our kids groan when they are asked to do chores, they are copying what I model many times - expressing frustration, angst, over trivial things.

So, today I went back to read the passage in Philippians.  "Did God really mean to do everything without complaining or arguing?"  I think I would have to say "yes" - it means everything.

During our time with family in Michigan for Thanksgiving, I realized how frequently I express my angst and frustration out loud at silly little things:

traffic,
the kids' rowdiness,
drying dishes that weren't clean and getting salad dressing on the dish towel,
the wireless internet not working,

I remembered the verse and realized that I'm not a very good example to my children, and the verse does say - Do everything without complaining or arguing.  The chapter goes on to say, "so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe..."

How am I shining light to others (especially my kids - because they see the real me)?  Is it through gratefulness?  I have to be honest, that personally I tend to weather the bigger trails alright, I struggle more with the the every day little things that I can control.

As I think on this even further, I realize that having an attitude of thankfulness means having an eternal perspective.  All of this stuff on earth will not last.  Laying up for ourselves treasures in heaven is what matters most.  As a saved believer in Christ, I (we) have HOPE - the ultimate HOPE of heaven.  We have salvation from our sins - we didn't have to die on that cross and suffer the ultimate penalty.  Jesus died in our place.  Even if we face death ourselves there's still hope - nothing we face, nothing is so bad that can take away that hope.

I sometimes feel that because of the many trials we have suffered with Toby, I have a right to complain - or eat more chocolate, or get a massage.  I have a right because I've suffered.  I might get someone angry for throwing this next thing out there, but when people say "Oh, no one should ever have to go through that.  No one should ever have to watch their child go through that."  Why?  What makes us so special that we deserve to never experience any type of hardship?  I honestly don't have an answer, but know that in our circumstances, if we had not gone through our times with Toby, I would not have learned to rely on God, trust Him, know Him intimately - His faithfulness, love and mercy because I would be relying on myself.

Jesus didn't deserve to die on the cross for sins he didn't commit.  He didn't deserve to leave heaven's perfection to be a man, and subject himself to being a human?  If anyone didn't have a right to experience sorrow and hardship it was Jesus.  He was led like a lamb to slaughter and yet He spoke not a word.  I have often wondered how martyrs can face death with such courage and bravery, and choose not to denounce the name of Christ or salvation.  How can they choose to die for their faith?  I think part of the secret is having an eternal perspective; this life is a vapor, and heaven is waiting for us immediately after we close our eyes in death.

Now let me throw in a bit of a disclaimer here - I don't think that the verse means that we never grieve, have sorrow, sadness, or even express constructive criticism in ways to improve various things.  It's the attitude of the heart and having an attitude of thankfulness.  I could go on and on about how we are blessed to live in America, we are so rich compared to other countries, but I won't - just to say this.  The fact is, we are blessed, our "needs" are usually not necessities.  If you have a chance, click on my sister Lynsey's blog and hear about living 3 months in Nicaragua - trust me, you'll never complain about doing laundry again!

In an effort to teach my kids not to groan, complain and mumble about having to do simple chores, I'm trying to model it in my own life.  When tempted to get bent out of shape because someone spilled sticky juice in a dripping trail across the floor, I try to change my mind-set and be thankful for having juice to begin with or clean running water for that matter, I am healthy enough to kneel on the floor to clean it up, I have children to make the messes and the list goes on and on.

I just finished reading this wonderful fiction book by Lynn Austin about three Swedish sisters that immigrate to the United States.  In the book, Sofia sings this wonderful old hymn - I will close with a few verses from the song: "Children of the Heavenly Father"

Children of the heavenly Father, safely in His bosom gather;

Nestling bird nor star in heaven, such a refuge e’eer was given.
God His own doth tend and nourish, In His holy courts they flourish

From all evil things He spares them, in His loving arms He bears them.

Neither life nor death can ever, from the Lord His children sever

Unto them His grace He showeth, and their sorrows - all He knoweth.
Though He giveth or He taketh, God His children ne’er forsaketh;
His the loving purpose solely, to preserve them pure and holy.

Wow, and that's reason enough not to complain.

My Mom - A Tribute!

I know that in writing this blog post, I'm probably going to embarrass her, but I just have to post it, and hope she'll forgive me later.  :)

Today, I need to write about my mom.  I am the oldest of three girls, and growing up I was a pretty independent, strong-willed, want my own way kind of kid.  I've always been headstrong, and when an idea gets into my head, it's pretty hard to change my mind.  (Hmmm..after typing that I realize where Caris gets it).

Between my mom and my two sisters, we have always had a close relationship.  Oh sure, we locked horns during the teenage years, I really liked to argue and be in charge.  Mom was always reminding me that she was the mother NOT me!  However, one of the biggest reasons why our relationship has withstood through the years has been just that - our parents taught us how to have open honest relationships - not perfect - but real.  They taught us how to be real with God, how to build our lives on the truth of God's word, and how to relate to each other.  My mom was always there, willing to talk, never too busy to sit in our room at night and discuss all of our triumphs, joys, and sorrows.

My mom is one of the most self-less people I know.  Through the births of all of our babies, she's been there.  Sometimes speeding through the 270 mile-trip to make it to the hospital just in time.  If mom's coming for a stay, you can count on the fact that she will cook, clean, do laundry, and clean - did I mention that my house is always clean when she leaves?  She's a gem!

After Toby was born, it was evident that we would need help more than ever.  He was in the hospital almost the first three months of his life, and my parents were there - either caring for Conor and Garrett at our house or taking them home to Michigan.  So, over the last month with both of Toby's surgeries, my mom has come again.  It was especially difficult this week because not only was Toby in the hospital, but both of my grandfathers have been in the hospital.  My Grandpa Fabian (my dad's father) had a major back surgery October 22nd, and my Grandpa MacGillivray (my mom's father) had his hip/knee replaced in two separate surgeries after the titanium rod just broke in two a few weeks ago.  Both of them have had a really rough road, and I can't imagine how hard it was for my mom to leave them to come to Ohio to help us.

I appreciate her help more than I can ever express.  Even though, we always have plenty of offers to help with the kids while Toby's in the hospital, it's hard to take up the offers when it would mean organizing dozens of people at various times, remembering who is supposed to be where and when while we stay at the hospital with Toby.  With my mom coming down, she's able to stay - keep the kids on their consistent schedule, and help maintain their normal lives - practice, homework, school lunches, etc.   One goal I've always had through this journey has been to keep things at home as peaceful as possible with the other children, so they aren't affected as much by the upheaval.  My mom allows us to do that.

She's had to give up a lot - change around her work schedule, although flexible, it means doubling up on her jobs in different weeks.  She gives up time with her husband, spending money on gas to travel, missing time with her own church activities to help us, and this time she's also been needed by my grandmothers to help them.

And this is the point where the tears begin to fall....If I could describe her, I would have to say:

Selfless, Loyal, Faithful, Servant, Loving, Kind, Full of wisdom...and the list goes.

She's an example to us and so many others of the Proverbs 31 woman: (vs. 25, 26, 28a, 30)

"Strength and dignity are her clothing, and she laughs at the time to come.  She opens her mouth with wisdom, and the teaching of kindness is on her tongue.  Her children rise up and call her blessed...Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised."  

I know I can call her for advice, she always listens when I need her, and sometimes just need to vent.  She also has amazing wisdom - someone that is willing to give me parenting advice in gentle ways, without being judgmental.  I appreciate her wisdom and the loving way she imparts it.

My only desire is that I can be a mother just like her, and I fall so short.

Looking back over the years, I can also see God's provision in an amazing way.  My parents were really young when they were married (really young) - facing an unexpected pregnancy they had many options, and yet they chose life, marriage, and then chose God.  I was that unexpected baby, and I'm so thankful they chose life.  They've been married 35 years, and though it hasn't been easy, they have allowed God to mold, break, cleanse, and change them - not willing to be stuck in their ways - but used by God - clay in the Potter's hands.

A few months ago it hit me that even in the middle of hard circumstances 35 years ago, God was making provision.  He knew that I would need young parents to help us during these times with Toby - to have energy to play with our kids, run them to practice, and help take care of us.  I'm so thankful that indeed "All things work together to those who love God."  He can take any circumstance and use it for His glory.

So, Saturday, Nov. 24th is my mom's birthday - and in a way to honor her, I write this post.  Thank you mom for all you've done, for all you do, and all you are.  I honestly do not know what I would do without you - and am so thankful to God that He gave me such awesome provision in your servant's heart.  I love you, and pray that God will use me in the lives of my husband, children, and others to bless them the way you have blessed us.  My prayer is that I will be able to imitate you in some small way.  Happy Birthday - I love you.

The Columbus Marathon

October 21st was a big day for Toby and our family.  This year the Columbus Marathon/Half-Marathon named Nationwide Children's Hospital as the beneficiary of the race.  It coincided with the opening of the new hospital, and for each mile there was a patient representative that cheered on the runners and raised money for the hospital.  Toby was chosen to be Miracle Mile Patient #7.

Last October was my first time running a half-marathon.  I have been running since 8th grade track, and I really do enjoy the long distances.  Over the years I've done a few 10-milers, a 30K (which is 18.6 miles), and then finally a half-marathon.  I chose to run last year for many reasons, but one of the biggest was to raise money for Momentium.  All the money raised goes to support crisis pregnancy centers in the area in which you live, supporting women and men to choose life when faced with an unexpected pregnancy.   The great thing about Momentium is any one can run/walk a race in any state, at any time and set up a fundraising page to raise money for their local crisis pregnancy centers.  It's an amazing program!

Even before we knew about the NCH Marathon this year, I had chosen to train to run it again and raise money again for Momentium.  Then, they approached us about Toby being a Miracle Mile Patient, and the race took on another special meaning for us.

My family came into town for the race, and we invited everyone to come join Toby to cheer on the runners.  His mile was decorated in green with t-shirts and lots of signs.  Toby's shirts said:

"Where There's a Wheel, There's a Way"
Toby's Warriors (Phil 4:13)
(On the left is Toby's teacher's aid at school - Kim!)

I heard this quote at the National Spina Bifida conference this year and knew it should be the theme for the race.  We also added "Phil. 4:13, which is the Bible verse that says, "I can do all things through Christ, who gives me strength."  We are often quoting this verse to our kids and especially Toby because God can give us the strength to do all He wants us to do!

Some of our signs said:
"Do, or do not, there is no try." (Yoda from Star Wars)
"May the Course be with you!" (Another Star Wars quote)
"Reach for the Stars, Run Hard."
"Thank you, NCH and Runners."...and many others.

My youngest sister Shauna also came with her family and ran the race with me - this would be her first half-marathon.  I tend to be pretty competitive, so my goal was to beat my previous time from last year.  Unfortunately, it seemed there were a lot of obstacles to this - I had been fighting illness and chest pain from a very stressful week (preparing for Toby's upcoming surgery two days after the race), fatigue, two nights of interrupted sleep, less training than last year because of time constraints, but God truly gave Shauna and I the strength to finish strong.

The day of the race was chilly.  I was so thankful for Bruce, my mom (my dad couldn't make it because of his work schedule - such a bummer) and Bruce's parents as they were able to get the kids ready to leave the house by 6:15 a.m. to make it to the mile before the roads began to close.  As you'll see in the progression of the photos - it was quite dark when they arrived!  Many friends and family came out, braved the cold and even brought their kids to join with Toby in cheering.

Bruce said Toby loved it, and they counted he probably gave out about 1,000 high-fives.  People stopped to give him notes, flowers, and hugs too.  I stopped and kissed him and the other kids on my way by.  He was our half-way point, and it really helped us to stay motivated till the very end. 

In the end, Shauna and I finished strong.  We kept each other going, even stopping for a potty break and lots of high-fives along the way, we beat my time from last year by over a minute (under the 2 hour mark).  I know that it wasn't me, it was God giving us the strength to get through.

At one point I saw this verse on other runners' shirts: "Hebrews 6:19 - We have this hope as an anchor for the soul, firm and secure..."  Awesome reminder of the hope that we have in Jesus Christ.  He has been our anchor through so many trials.

My sister Lynsey also sent me an e-mail reminding me of these verses:

“Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us RUN with ENDURANCE the RACE set before us, fixing our eyes Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.  For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart.”  Hebrews 12: 1-3

She reminded me of how training for the race, also had prepared me for Toby's surgery two days later - and the marathon we are running in life.  We do not have to grow weary and lose heart because our hope/anchor is in HIM - fixing our eyes on Jesus!

Thank you to everyone who donated, participated, prayed, and made Sunday such a special day. 

Our Crazy Life

Soooo...as of this moment, surgery is scheduled for October 23rd at 8:30 a.m.  We met with neurosurgery last week, and Toby does need the detethering done before they put the rods in.  We looked at the MRI results, and he has a huge syrinx (fluid filled cyst) in his spinal cord, which could be as a result of too much fluid in the ventricles of his brain (i.e. still needs a working shunt) or the need to be detethered. After much discussion, we have decided to also do a shunt revision with the de-tethering.  We will never know whether the issues Toby has had are related to the ETV not draining enough cerebrospinal fluid from his ventricles, so this is our opportunity.  Essentially he will have two surgeries in one - #13 and #14 - but same anesthesia time.  

I'm nervous to say the least.  I realized later that twice after Toby's had surgery on his spinal system his sodium has dropped and we've had issues.  I really don't want to experience another 4+ hour convulsive seizure - I called the NS nurse on Friday and expressed my concerns.  She assured me that they will monitor his fluids really closely, and I'll probably push for getting his sodium checked after he's released from the hospital just to be sure.  I feel like if something happened, it will be on my shoulders, because I was the one that asked the doctor if we could do the shunt too.  He just hasn't been the same kid - after thinking through it, he ultimately made the decision to go ahead, but it still makes me nervous. 

After all of that, I have been considering what will happen to this scheduled surgery next week if the orthopedic surgeon decides not to do his back surgery by the end of this year.  If you remember he's been on vacation, and has no clue what has transpired these past few weeks.  It doesn't make sense to de-tether the spinal cord if we delay the rod surgery because scar tissue will form and he'll just need the detethering done again. 

SO, after all this planning, etc. everything could change.  I'm hoping/praying that it doesn't.  I have grieved through these surgeries, and now am ready to have them done, complete, and for Toby to be able to heal and move on - so pray that everything continues to fall into place.  We are moving forward as if surgery is October 23rd.  We'll see!

So, we have a lot going on right now.  Toby had an appt. with the his regular surgeon today - to get a new feeding tube.  It's called a Mini-one Balloon Button.  It's smaller, flatter, and skinnier than his other Mic-Key button, and hopefully will be better for him.  After the appointment we went to the lab to get blood drawn for all the pre-op stuff.  It was tough - they couldn't get the vein on the first try, and Toby was a crying hot mess!  He had an autonomic response - ears turned red, face, sweating profusely.  Thankfully, they got it on the second try, but afterwards he was exhausted and fell asleep in the van on the way home.  I think this is because his blood pressure drops when his autonomic system is under stress, and then he just fell asleep.  He is better tonight.

This week Toby also has a pulmonary appt., a complex care appt., and we are trying to stay healthy through all of this.  I also have to take Caris for an orthopedic appointment.  I think she might have a leg length discrepancy, and so we are just getting it checked to make sure her hips/legs are okay.  

Sunday, is the Nationwide Children's Hospital Marathon/Half-Marathon.  We are making all the plans for Toby to cheer the runners on, and my sister Shauna and myself are running the half-marathon (it will be her first and my second).  I'm excited for most of my family to come in for a visit, but we have a big week, a bigger weekend, and an even bigger week next week.  Did I mention that Toby's IEP meeting is Monday?

Whew - we surely covet your prayers through all of this - and for mommy to stay healthy and sane! :)

Some Answers

It's taken me a few days to process everything from Toby's MRI on Thursday.  Toby also had a GI appointment this week, so let me start there, and hopefully I can sort through everything. 

(P.S. If you follow Toby's CB site - this is the same post, so I'll save you some time by posting that here instead of you having to read the whole thing!)

GI appointment - This was a follow-up to discuss how the motility medication was working.  Toby is taking flagyl 7 days a month to stimulate his motility and improve his belly distension. It is helping.  His belly still gets distended, but it's not nearly as bad as it was.  We have also been able to cut down to a bare minimum dose on the cyproheptadine (or periactin) for his appetite stimulant.  We played with it quite a bit a few months ago and have it down to where it it still helping him to eat what he needs in calories, but not have the side effects that we were seeing from it. We also discussed the MACE vs. cecostomy with the GI doctor, and also asked about a motility study.  A few weeks ago in Myelo clinic, his developmental pediatrician had mentioned that before they do the bowel surgery they typically like to do a motility study to see if the kids will be continent, and if the surgery will be effective. I like that idea just because we've had so many issues with motility. GI doctor said he wouldn't recommend an in-depth study, the fact that the enemeez enemas work as well as they do, and he's fairly continent in between is evidence that the cecostomy/MACE would be good for him.  When we get closer to doing that surgery (probably next spring/summer) we can do a sitz marker study. Basically, Toby would eat some markers that I believe have barium in them, then they take x-rays and see how fast his digestion progresses.  I really like the idea of this study - had heard about it at the National SB conference this year, and just makes sense to me.  Nothing earth shattering, but a good follow-up.

So, on to the MRI...

We were instructed to arrive at 8:00 a.m., no food after midnight, and clear liquids up until 7:30 a.m.  The MRI was scheduled for 11:15 a.m.  Afterwards, Toby would be discharged (he has to be technically admitted to pulmonary floor so they have a ventilator for him when he wakes up after the anesthesia in the PACU) and we would head over to meet with the neurosurgeon to discuss results and possibly surgery.

I have learned that nothing at the hospital EVER goes as planned. The MRI didn't happen until 2:15 p.m., and then the neurosurgeon ended up having to leave early so he stopped by the waiting room to discuss what they had completed so far (his brain), and told Bruce he would call me on Friday.  BECAUSE, I wasn't in the waiting room when he called.  I have met a wonderful new friend who's son has Spina Bifida, 22q syndrome, a congenital heart defect, and might be getting a trach next week. (Please pray for them).  Little Aiden has been through a lot, and he was in the PICU on Thursday, so I snuck up there to visit and talk to his precious mommy.   But, I missed the doctor, which was so frustrating because I wanted to walk away on Thursday with answers, a surgery date, and everything wrapped up in a nice neat package WITH a bow!  That didn't happen, and I should expect that by now, 

I'm so glad I visited Aiden and Kayla, realized that even if I had been in the waiting room it wouldn't have changed anything.  They hadn't even scanned his spine yet, so the NS wouldn't have had many answers anyway!

Deep Breath!
Are you still with me?

So, the doctor called on Friday, but I missed the call (of course). I called the NS office back, but of course there are no live people that actually answer the phone.  I tried the doctor's secretary, and his nurse (I have both of their direct lines memorized - go figure) and got voice mails.  I paused a moment to take a breath and got the bright idea of calling the main hospital number and to ask for Dr. G - directly.  Guess what?  

I was connected  - pronto, and we were able to have our long conversation, all questions were answered, and we have some dates scheduled!!

Quick synopsis of MRI:
Brain and ventricles - look great, in his opinion the ETV is working, even though we don't feel like he is totally back to baseline or what he was before the ETV/Seizure, in the doctor's words "He's safe!" For now we will let this go.

Spine - He's tethered. We knew this, all SB kids are tethered.  He has a tethered cord in the S1 region, and a pretty large syrinx (fluid filled cyst in the actual spinal cord).  He also mentioned there is a sac of fluid where he's tethered.  Before they do the VEPTR surgery (growing rods to correct the scoliosis), Toby will need a spinal cord detethering.  They don't like to put the rods in while they are tethered because as the back grows and is stretched, the spine/cord are also stretched and can cause more scoliosis and neurologic damage.  He even went so far to say that sometimes the orthopedic doctors end up having to take the rods back out, so we will do the detethering first.

The other part of this was clarifying some things that I have been wanting to ask for a long time.  One of the most commonly asked questions in the SB world is what is your lesion level?  This means where was the break in the spine, and what muscles/nerve function did it affect?   Here is a link to a photo that describes some of it (hopefully the link works).  We've always been told that Toby's level is L3/L5.  Bottom line - Toby's lesion is about that level, but his actual function is L1/L2 because he can move his legs from his hips, but that's it.  He has no quadricep muscles, and can't move his legs from his knees.  So, when they do the cord detethering they typically cut an incision above where the spine is tethered, and then work to separate it and all nerves from the scarring, etc.  The fact that Toby's level of function is much higher than where he's tethered means even if something goes crazy wrong in surgery - it shouldn't affect his function (because he doesn't have much).  I look at this positively and also want to cry because I wish he had better function than he does.

The biggest risk of surgery is CSF leak.  He mentioned that if he can't get the back closed back up properly because of leaking fluid, he will put a lumbar drain in for a few days.  Spinal fluid and a healing incision don't mix well. The surgery will last at a minimum of around 6 hours - and he even broke that down into time frames for me - anesthesia, hooking up electrodes/monitoring wires, actual incision, detethering piece, closure, and the anesthesia piece.  It's possible he will need to be in the PICU because most of the nurses on the pulmonary floor (where we always have to be) aren't comfortable with neuro stuff/lumbar drains.  He is going to ask if maybe a few neuro nurses could float to pulmonary so he doesn't need to stay in PICU most of the time.  We will see.  
We have an appointment this week to see the MRI pictures (I love this about Dr. G) - he pulls things up on the computer and explains all the detailed MRI pictures.  He will also examine Toby.  Surgery is tentatively planned for Oct. 23rd - they were working on putting the request in late Friday, so we should get an actual surgery date this week.  These dates are perfect for us because Toby can still participate in his Miracle Mile for the Nationwide Children's Columbus Marathon/Half-Marathon on Oct. 21st.  My sister and I are running the half-marathon, and my parents are also coming down from Michigan, so Grandma Fabian can stay afterwards to help out while Toby's in the hospital - planning on about a week stay.

About 4-6 weeks later, probably the beginning of December, Toby will have his rod surgery on his back.

Another deep breath - whew!!  

Still with me?

I felt much better on Friday after speaking with the doctor, and having a bit of a plan.  I just needed to be Patient!

Let's Get On With It!

Yesterday Toby had the full MRI of his brain and spine.  We were admitted to the new hospital pulmonary floor.

Arrival at 8 a.m.
Scan at 11:15 a.m.
No food after midnight
No drink after 7 a.m.

Actual scan wasn't until 2:15 p.m.
Arrival home at 6:15 p.m.
No food for almost 24 hours
No drink for 9 hours
Poor baby
Long day
Toby was whipped

So, the new hospital is just beautiful.  Every room has this wall behind the bed that changes colors and looks like an outdoor scene.

We had a great view of downtown Columbus.  This photo was taken out of our window!

There are two flat screen televisions - a small one by the bed for parents, and the large 42-inch screen for the kids.  Toby enjoyed watching movies on the Get Well Network (it's an interactive program that allows you to play games, watch movies, and also do any educational type things that you need with your child).  Toby was in rare form yesterday - laughing and being silly.  He had two great nurses that just fell in love with their "Miracle Mile Patient".  When we left both of them walked us all the way to the van - his entourage! :)

So, I had been preparing Toby for this day and we've also been discussing his future surgeries.  For the first time he remembers being in the hospital this past March/April when he had his ETV and his major seizure a week later.

March 17, 2012

He always asks me if he will have to stay or will he be able to go home afterward.  Then, he cheers when he finds out he doesn't have to stay.  It's definitely getting harder emotionally to do this!  We had a great laugh in the van, though, because he asked, "Mom, do you remember when I told the nurses that you were in the potty?"  At first, I had no idea what he was talking about, wondering if he was talking about something at home with our home care nurses.  Then, I remembered that this was something that happened his last stay and he remembered that.


You have to understand that for the first time Toby is remembering things and talking about them.  Mentally, physically, and socially he is maturing and this is so encouraging for us to see his conversational skills expanding.  The mere fact that he does remember the last stay, something that happened, and that he asked me about it is AMAZING!

We sat in the O.R. waiting room for awhile, and then I decided to go and visit a new friend whose son was inpatient. While I was away, I missed our neurosurgeon stopping by.  He had to leave early, so he stopped by and spoke with Bruce and then left.  Bummer!

Bottom line - Toby will need a spinal cord de-tethering surgery.  The doctor looked at what they had scanned so far and said his ventricles looked good, and it appears his ETV is working.  They were still scanning the spine, but the fact of it is (and I've known this for years)...all kids with SB have tethered spinal cords.  It was interesting this year at the National Conference to sit in one of the sessions and see how low in the back our kids' spinal cords are compared to other healthy kids.  It's pretty low.  After initial back closure surgery, the scar tissue (which helps the healing process) adheres to the spinal cord.  Putting the rods in for the VEPTR are going to stretch him out and also stretch his cord, so they need to release it.  I was expecting this, preparing for it, but it's still not easy.  Toby's back scar isn't pretty - it stretches across his entire back and is a jagged diagonal scar.

This is Toby's back scar, and that red mark is from his night-time brace, which is why I knew that his scoliosis was getting worse and he would need rod surgery.  

He also develops scar tissue quite readily, we know this because of his prior surgeries and his bowel obstruction last fall, which was a result of internal scar tissue adhering to his intestines.

The surgery makes me nervous.  This will be surgery #13 and #14 for our Toby.  He's been through so much, and the release can be pretty complicated.  I'm expecting it to be complicated.  I was also so frustrated yesterday because
A.  I missed talking to the doctor - he spoke with Bruce, but I didn't get a chance to ask all my questions.  B. We didn't walk away with dates on my calendar.  I wanted to walk away with dates!
C. I'm having to wait again.

Now, that we've accepted that he needs these two surgeries - I just want to get them scheduled, completed, healing done, and move on with life.  I want to be able to PLAN!  Planning is what I do best, but instead we have to wait..and wait some more.  I'm ready to get on with it.

God continues to teach me that it's HIS timing.  This is not in my hands, I can't be in control, and waiting is what we need to do right now.  It's tough waiting.  Did I mention I don't like waiting?
We have several pre-op appointments, and scheduling through the hospital is never quick or easy.  The orthopedic surgeon really didn't want him in-patient during cold and flu season, and we will be smack in the middle of it.  The neurosurgeon thought the de-tethering would be end of October, with VEPTR around the beginning of December.  There are holidays to plan around, childcare to arrange, others are waiting on this to get their own schedules fixed in place.  But, then I look back earlier in the week to Monday when we didn't even have an MRI scheduled.  Three days later, the MRI is complete, done!  God's timing is not my own - He continually reminds me of that.  I can't control everything is lesson number 2 - and His plan is always better than anything I could come up with on my own.  So, we will wait.

Some funny sayings from our Toby this week:

"Mom, I have big muscles just like the "HULK"!"
"Mom, I love you - you are my best girl!"  Melts my heart...
He told the nurses in pre-op waiting, "that he was shaking his bootie!"

When the Unexpected is Expected.

Today Toby had his Myelo clinic appointment.  This is the day when we sit in a room for several hours (about 5 to be exact), and all of the doctors/therapists/specialists come through to discuss all the areas that are affected by Spina Bifida - Urology, Physical Medicine, Developmental Pediatrician, Neurosurgery, Orthopedic Surgery, Neuropsychologist, Occupational and Physical Therapist - not to mention our contact people for the companies that do adjustments on our wheelchairs and braces.

I went in today hopeful - not a lot of things to discuss in most areas.  A few questions about various things.  The biggest issue being Toby's back.  He has been wearing a night-time back bending brace for almost a year because of his severe scoliosis (early onset for kids with SB).  Over the past few months we've had issues with his brace leaving marks on his back - then we have to leave it off for a week or so, and try again.  We've had the brace adjusted once and it helped some.  I have been wondering if his back is getting worse.  About 1 1/2 years ago - the orthopedic surgeon and I had talked about the possibility of Toby needing titanium rods to straighten his back.  It's called VEPTR or vertical expandable prosthetic titanium rib. They attached from the ribs to the pelvic bones on both sides of the spine (out a little ways) and straighten the scoliosis.  They also have to be adjusted for growth - which is a surgery every 6 months until the child stops growing.

So, we saw most of the specialists today - got some more information about how Toby would need to have a motility study done before the MACE and Mitrofanoff surgery.  That was good to know, something we can talk to GI about.
Down to radiology for a back x-ray
Discussions with the nurse
Neuropsychologist stopped in
Adjustments to Toby's wheelchair
Developmental pediatrician

I went in to the day hopeful that his back had stayed the same - maybe it was just my imagination.  Maybe he's outgrown the brace and needs a new one.   Then orthopedic surgery comes in.  I saw it on his face -

Toby's back has a 55 degree curve - lying down...it's probably 80 or more sitting up. I remember Dr. K telling me before that once the scoliosis hits 50 degrees it starts to do permanent damage to the spine.  He needs surgery - soon...October.

Tears
Discussion
Questions
More questions

They want to do the surgery in October - trying to avoid major respiratory illness season.  Switching around other patients already on the surgery schedule.  It looks like the schedule is open the end of October - after the Columbus Marathon/Half-Marathon (sigh of relief).  At least Toby can be out there inspiring others in his Miracle Mile - Mile 7!

Have lots to do - clear the surgery with pulmonary, move up his MRI under GA of his brain and his spine to check cord tethering.  It's possible he needs it detethered before the rods are put in...can't stretch the spine out and still have it tethered down low - can cause problems.  Lots to consider.  Lots to pray about.

I knew it was coming - sort of expected it, but still held on to that hope that it was a year away.  I wonder if I knew it instinctively, which is why I put off scheduling the urology surgery.  It's still hard to hear the words when they actually come out of the mouth of the doctor...even when you are expecting the unexpected.  Grief hits hard - harder than I realize.  This is tough.  I don't like how the grief paralyzes me, don't feel like cooking dinner, playing with the kids, rotating seasonal clothing (I found those swim trunks and tank tops and realized the weather isn't going to get warm again - really should clean that stuff out).  Instead I want to cry, but need to hold it together.  We knew this was coming - just didn't expect it - the unexpected, yet it's expected (ironic).  I know God knew it was coming - it's no surprise to HIM.  I'm glad, glad He encompasses all time and knows the outcome in October. That He is with us every step of the way...but for now I'm going to go cry a little and grieve.  I have learned to do this, to adjust to the new normal.  Grief helps, but it's also hard.  I'll try to post more details later - especially as we begin to understand all the details.  Thanks for listening.

Comfort Zone

I really enjoy doing things that are within my comfort zone.  If I'm unsure about a situation, place, opportunity - it takes me awhile to get used to the idea before I will venture into new territory.  Some a lot of times I'll avoid it all together if I'm not comfortable enough.

Having Toby (and kids in general) has really grown me in this area.  Before Toby, I would NEVER be the first to approach a stranger or begin a conversation.  Post-Toby, I am more open to this, especially if their child is in a wheelchair, has a trach or a ventilator.  In fact I met a very good friend at the zoo when Toby and her daughter were babies - we connected because of our kids' trachs!

There are times that I'm at our local children's hospital by myself because of a meeting or other event (I volunteer on a few committees),  I'll see a child that reminds me of Toby, and I want to rush up to the family and introduce myself and hear their story.  I'll give them a special smile.  I'm sure they're thinking "wish this weird lady would stop looking at us and smiling!"  But, it's hard not to empathize because we get it, we understand.

On the flip side, it's also difficult to venture into any new situation with Toby.  It took me several months to warm up to the idea of flying on a plane with him when he was a full time ventilator patient a few years ago (ask Bruce - ha!).  Even attending our new small group tomorrow night has my stomach in a few knots.  Do they really want a wheelchair in their house? Considering a new location/event, we have to ask ourselves:

How would will we get Toby around?  Grass, mud, and sand are not a wheelchair's friend
Will Toby even be able to participate in any activities?
What about his food schedule?
Where in the world will we do our straight cathing?  (this is ALWAYS an issue)
What will the weather be like? (heat and rain are not friends of a trach)
Is there enough room for Toby's chair?  Will he beat up all the walls in a friends' home?
If we spend the night - what are the sleeping arrangements?

For these reasons and a bit because of sleeping space, we have never gone to visit my youngest sister and her family in Indiana (over 5 years!)...until Labor Day weekend.  A conversation with Conor birthed the idea, and after some hotel reservations and planning, we thought, "Why not...let's just do it?"  So, we did.

We had a lot of fun visiting Shauna, Jonathan, Addy, and Brenden.  The kids had a blast playing together, and Toby scooted around their house like a champ.  They have a small four-wheeled all terrain vehicle that we rode for hours and hours.  The kids loved it.  I really enjoyed time with my youngest sister - it's fun to have our kids grow up together!

Toby enjoyed his little buddy (even though Toby doesn't look too sure in this photo).  The favorite things of the weekend were of course the four-wheeler, Shauna's ipad, and Snappy (their cat).  We are not blessed to have pets at our house (I'm allergic to cats), so whenever we are at someone's house with pets - especially cats or dogs, the kids love them to death.  Snappy wasn't too sure about our kids, but after awhile he got used to their rowdy ways and enjoyed the attention.  Did I mention the kids really liked the four-wheeler?  We weren't on the road home, five minutes when the kids were asking if we could get one for our house.  Hmmm..sure our home owner's association would love that!

Don't you just love those smiles?

There are times when we just can't take Toby certain places, it's not practical or safe, or honestly it's just way too much work to get him there and all of his equipment.  (You should see how much we have to pack when we travel).  However, we have learned through the years that venturing out of our comfort zone usually reaps more benefits and enjoyment than the cost of time and energy it takes to get him there - and it's worth it to invest in our relationships and spend time with those we love.


 

Some Smells Are Worth A Thousand Memories

All it took was walking into the doctor's office and a short conversation with the receptionist to bring on the tears.

the sights...
the smells...
the memories...

I am an emotional mess and I can't even blame it on hormones.  Since we moved three years ago, I haven't been back to this particular ob/gyn office.  I typically go to the one closer to our house.  It's strange to face the memories of hearing the very first time there was something wrong with our baby.  It was August 31st - our "D-Day"!  The Defining Day when our lives changed forever.

A little while later I'm in one of the exam rooms talking about the family with the nurse practitioner.  I share my thoughts with her, she's sympathetic - it's just so strange to be back in the room where the doctor revealed the news, "there's something wrong with your baby."  The NP says that sometimes our senses remember before the mind does.

How interesting, how true.

I wonder why these memories hit me now?  Why can't I hold back the tears.  The ironic thing is that I did have a few appointments at this office when I was pregnant with Caris.  It's not like I hadn't been back there.  At 6 weeks, I had an ultrasound because of spotting.  It was something new, something I had never had with any of my other pregnancies, and because of Toby I was more on edge.  I remember waiting back in the ultrasound room,  The last time I had been in this room was while pregnant with Toby.  As I was waiting for the technician I turned and looked at a bulletin board of various ultrasound photos (no names) just pictures and dates.  I remember sitting there reading the captions declaring happy news:

"It's a girl!"
"It's a boy!"
"It's twins!"

I smile.

Then "Lemon-shaped head".  I slid off the table and walked over to look at the date on the ultrasound - August 31st - It was Toby's ultrasound photo.  The tears fell, the grief came back.

I'm not sure why it hit me this time.  (And no I'm not pregnant!)  I do know that certain smells take me back.  Who can forget the smell of the green hospital soap?  That will forever remind me of when Toby was in PICU.  It's good to look back and remember, it's good to grieve.  Most special needs parents will tell you that at various times in their children's lives they have been at one stage or another of the grieving process.  I'm still not sure why visiting the doctor's office this week brought back the tears -- August 31st was just a few weeks ago, and it was the day I spent around five hours on the phone regarding a possible cut in nursing hours, so I'm sure some of it is stress and remembering the day our lives literally changed forever.  In some ways I wish I could tell myself then what I know now - maybe the grief wouldn't have been as strong, but then again maybe I wouldn't have believed the blessing Toby would be - 6 years, and 13 surgeries later.  It's worth it - it's all worth it!

"Ditro from a "pan"!

(It's always fun and interesting to think of titles for these posts).  

Here goes with an update:
First of all - God is so incredibly good - He is faithful.  I received an e-mail later Tuesday night from our doctor.  Our insurance agreed to keep the hours at 16 through the end of December.  They are requesting some additional documentation from the agencies of when he's on the ventilator and how much he needs suctioned.  It makes me nervous because he's on the vent. less now than ever (with no naps now in the afternoon), but his suctioning actually has been more of late.  He had a cold a few weeks ago and ever since then he leaks copious amounts of secretions out of his trach.  Maybe it's the weather?  Who knows.  I am working on trying to get a contingency plan in place; we may have a few other options.  I'm also looking at how many hours can we manage with if it's less after the first of the year, so we're not blind-sided if they cut again and this time don't reinstate them.  We shall see.  For now I feel like I can breathe again...and I'm so thankful for all of your prayers.

Now to cover why we're talking about ditropan again.  Yesterday Toby had the full nine yards of bladder testing: (here is a recap of what each test does)

Renal ultrasound: ultrasound of his kidneys

VCUG: this is where they fill the bladder with a barium type substance in fluoroscopy and watch to see whether he has reflux up to the kidneys and what the bladder neck looks like (is it leaking or holding the urine in the bladder)
Urodynamics testing: this is where they hook up different electrical wires and also fill up the bladder with saline this time to see what the pressures in the bladder are.

Results:
Renal ultrasound: everything looks good.
VCUG: he doesn't have reflux.  They were especially looking for the leaking this time because he has had that significant change in his bladder in the last few months.  It used to be that he was dry mostly in between caths, and now he's not at all.  Our cath volumes are very low (75-100) compared to before (250-350).  Of course during the test, he didn't leak at all.  BUT, even though clinically he didn't show leakage, he is leaking.  On a good note - his bladder capacity is still excellent - it holds  A LOT.  

Surprise! - the radiologist also said that Toby has left his dysplasia meaning his hip is out of place.  This is common in kids with myelo, but no one has ever told me this.  Nice?  huh.  I don't think it changes anything - doubt they'll do surgery on it, but it's definitely something to ask about at Myelo Clinic in a few weeks.
Urodynamics: There was a distinct difference in the bladder pressures in Toby's bladder this time from being off the ditropan. It used to be that they would get high when he had about 250 ml in his bladder, now they got high around 120 ml, which means he definitely needs to be on the ditropan for now.  The higher pressures mean the bladder overworks and then the bladder wall thickens.  You want the bladder to be a smooth - not overworked muscle.

So, what does it all mean?

Toby is going back on the ditropan.  To be completely honest, I never really saw a difference off of it.  He still gets sweaty, his cheeks and legs still get blotchy when he overworks himself (which leads me to believe that this is completely tied to autonomic issues in his body from his Chiari II Malformation).
We also discussed in depth the MACE and Mitrofanoff surgeries. It appears he will not need a bladder augmentation - it's big enough and holds a lot of urine.  But, he will probably need the bladder neck tightened or even closed off so he won't still leak.  The point of the MACE and Monti for short is to be dry clean and independent.  Dr. J (whom I just love) - the urologist and I discussed at length the different between the cecostomy and the MACE to manage bowel continence.  He tends to like the cecostomy better, but is willing to do the MACE for Toby because that seems to be the way we are leaning.

I'm still a little bit on the fence between the MACE and cecostomy, but am so glad to have a doctor that is willing to work with us and make the best choice for Toby.  With each appointment and discussion I feel more at peace with the decision to move forward with this.  I also understand the differences better, the methods of how the different procedures are done (which I won't bore you with now).  Toby wants to be independent with cathing, he asks to cath himself, but sitting up in his wheelchair he can't see anything to do it himself.  This would allow for that.

So, when's surgery?   Not sure yet - because I need the orthopedic doctor to look at Toby's back.  I think his scoliosis is getting worse. When Toby sits on the floor his rib cage sticks out horribly - his spine is very curved.  I want to make sure he's not going to need rod surgery in the next 6 months-1 year before we choose to do the MACE and Monti.  We'll talk more about this at Myelo Clinic with the Ortho Surgeon.

Last, but not least - Toby is going to have another sedated MRI of his brain/spine, everything either in Sept. or beginning of October. We are still seeing his eye gaze issues, nystagmus, looking out of the corner to see things, etc.  The neurosurgeon wants to cover all basis (looking at syrinx, tethered cord, etc.) just to make sure the ETV is working, etc.

Whew - that is a lot of updates, but they are things that I've been processing for awhile, but haven't wanted to mention.  Figured it was time to talk about all these different aspects.

P.S. Bruce is the one that thought up the saying "ditro" from a pan...because when we have pancakes for breakfast - his saying is "cakes from a pan", so we have thought of all kinds of different words we can say that are "from a pan".  Just our humor in every day life! :)

Riding This Roller Coaster Again

We are riding the roller coaster of whether or not we will lose our nursing hours yet again.  Didn't we just go through this in March?

Friday morning I received a call from a new nurse case manager at our insurance leaving a message that effective tomorrow (Saturday 9/1/12) (this was about 14 hours later) our nursing hours would be cut from 16 a day down to 12 a day.

Oh the emotions started rolling, the panic, the fear and tears.  I realize that this just doesn't affect me, it also affects our nurses - they lose a patient to care for. How in the world are we going to divide up those hours between day and nights shifts?  How do I choose?
So, long story short, Bruce was able to get an extension of one week from insurance to allow us to appeal the decision yet again. We have a back-up with Toby's waiver, which should provide nursing care in the event that insurance doesn't, BUT...and here's the big BUT - we have to prove to the state that insurance denied coverage and all appeals have been exhausted.  Then, we have to wait for someone to make a decision of yay or nay.  If nay, then we can appeal to the state through a hearing.  If you're getting my drift - you are understanding that this is the biggest headache.  

Friday, I was so frustrated because I spent almost 5 hours total on the phone calling various parties involved trying to figure out what to do next.  It took so much time away from my kids (grrr...frustrating).  Did I mention that we went away for Labor Day weekend and I still had to pack for a family of 6, plus all of Toby's medical equipment and up until 3 p.m. on Friday - I hadn't packed a stitch of clothing.

What happens next? 

Bottom line - some time this week our doctor will hopefully get in touch with the medical director from insurance to do a peer to peer review.  This is step one for the appeal.  If insurance decides against then we appeal to the state.  In the meantime we have to abide by the 12 hours a day.  

Please pray for us - if this is God's will for us to have less hours, I'm trying to accept that, trusting that He has a plan.  When I think about the day to day, I have no idea how we will manage, but He is sufficient, so I choose to trust in Him and not insurance or the state.   Trying to trust, even though it's so hard...

Back to School...Again!

It's hard to believe that the summer is over and school has started once again.  Last week Conor and Garrett went back to school.  They had a great first week!

2nd Grade & Fourth Grade

A new pose!

The boys typically ride the bus to school, but I took them on the first day.  We went with Garrett into his class, and Caris was pulling on Garrett's arm asking him to come home.  She isn't going to know what to do without her two big brothers at home!  (True confession - I took these pictures after school, the morning was too hectic)

So, Caris, Toby and I met up with a friend (Janae) at the park:

Toby's arm is fine, by the way, it's his new thing - he likes to wrap his arm in ace bandages.

Today was Toby's turn to start school.  He's attending preschool for another year.  It was a tough decision, and sometimes it's hard to see all the other kids his age going to kindergarten this year.  We felt like it was the best choice for him, especially because of the rough start he had to life.  Sometimes, I compare it to being a preemie - he didn't start to actually move around and explore the house until age 20 months, babble and say words until age 2 years old, so developmentally he's behind, even though he'll be six in December.  I also know that in the next year we are facing another large surgery and possibly two - if his scoliosis is as severe as I think it is, he's going to need a major back surgery also.  So, it's off to preschool again.  I did shed a few tears, realizing how much he has grown, changed and learned since we put him on that bus two years ago for his first year of preschool!

He looks like such a baby on the left, doesn't he?

It's been a good week of school starting again...and even time for some silliness:

A Family Adventure

It's been a VERY LONG time since I've posted an update (so long)...but as a new school year has begun today, it's time to start blogging again.  You've noticed it's updated (new background/fonts/etc.)  I've also added a new tab at the top that will be updates related to Toby and his medical condition, etc.  

So, here goes:

This year we decided to go on a family adventure and go....(drum roll please)....

CAMPING

This was Toby and Caris' first camping trip.

To give a bit of background -  I grew up camping - all over northern Michigan and the U.P. (Upper Peninsula - for you non-Michiganders).  I have many family memories going to Mackinaw City, Mackinaw Island, Burt Lake, Cheboygan, Petoskey, Copper Harbor, Tahquemenon Falls, etc. (all places in Michigan!)   I enjoy camping - I don't enjoy the dirt so much, but I love being outdoors and the memories it creates for our kids.  Our campground usually has lots of trees, showers, and decent (not always clean) bathrooms

Bruce and I tent/cabin camped with Conor and Garrett when they were little, but after Toby was born and he came home with all of his medical equipment - AND a trach (i.e. no WATER immersion) I never thought we would ever be able to camp again.  This year we did it!

Bruce and I jokingly said we couldn't call it a family vacation, but more of a family trip or family adventure because it was going to require a lot of work and letting go of the whole dirt thing for this Type A - Clean Freak!

Most years my family (think parents, sisters, brother-in-laws, niece, nephew and extended family like grandparents, second cousins, aunts, uncles) camp in northern Michigan, and this year we joined them.  

We rented an RV, which was delivered to the campground, and made an adventure out of it.  Here are the top ten reasons we enjoyed camping this week:

Reason #10 - Hiking in the woods

Reason #9: Visiting MaMa Mia's in Mackinaw City and the Mackinaw Bridge Museum - a family tradition since I was a kid!  I didn't take a photo, but also buying eating good old fashioned Mackinaw Island Fudge!

Reason #8: The gorgeous sunsets

Reason #7: Making sand castles with Uncle Anthony, enjoying the beach and warm water

Reason #6: Watching Caris get dirty in the mornings - just seconds after putting clean clothing on her.

Reason #5: Watching Toby dance with Grandma 

Reason #4: Playing Miniature Golf and getting a hole in one!

Reason #3: Watching the Mackinaw Bridge light up and driving over it to the price of $8.00 just to have the thrill!

Reason #2: Having campfires and delicious hot smoes (s'mores)

Reason #1 - Spending time with my wonderful family!

I won't deny that it was A LOT of work - especially with Toby - all of his care (trach, vent, cathing, bathing, bowel program - lots of work).  BUT, it was fun!!  I'm sure we will do it again in the future - a few years down the road!