Expectations

Isn't it funny how disappointment is often linked to how we expect a situation to turn out, or how we expect life to turn out. Many misunderstandings, heartache, and pain are over a disappointment in expectations. We expected to have a healthy baby when we had Toby. I may expect my husband to respond in a certain way and he doesn't, then I'm angry or frustrated. Just since May we have experienced the sudden death of my grandmother and step-grandfather, a weird yearly unexplained rash on my hands, arms, neck and face that caused my eye to swell shut, a broken arm, unexplained mold on the back of hanging pictures in the boys' bedroom, and a broken dryer.

When I called my husband to explain the broken dryer, that just so happened to stop working on the day he was flying to Atlanta.

"Don't you think enough bad has happened to us recently, can't we get a break?"

His response:

"No, that's life, Carrie."

And you know what, he's right. One thing God has been teaching me lately is how comfort and ease of life is a false god in my life, and especially in the lives of American Christians. On my very very worst day, it's still better than someone else's best day. So, then I began to wonder should I just expect everything to go wrong and then be surprised if it goes right? Do I need to change my expectations? Instead of expecting life to be easy, comfortable, less chaotic, and organized - do I expect it to be the opposite and maybe I won't be half as surprised or grieved when curve balls are thrown my way. It seems a gloomy way to look at life - glass half empty instead of glass half full.

I DO NOT believe we should live without hope or look at life negatively, but the Bible does instruct us NOT to be surprised when bad things happen.

Peter talked about this,  in I Peter 4:12 "Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you."

Jesus said in John 16:33, "These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world."

In this world you have tribulation, and we will. Don't be surprised when the fiery trial comes, yet so often we are. I have been currently reading through a book called Teaching From Rest: A Homeschooler's Guide to Unshakeable Peace by Sarah McKenzie, and it's message (Biblically based) has been teaching me not only how to home school from a state of rest, but how to life life from a state of rest even in the midst of absolute chaos.  Even if you aren't a home schooling mom, I highly recommend the book (she has a new edition coming out in August) because what she talks about is so applicable to LIFE. In the chapter The Cake Under the Couch, she relates all of those little daily things that happen to us - the broken dryer, the toddler tantrum, the car breaking down, etc. and says, (these were my list - she listed different things)

"Can you hit the pause button on your frustration long enough to realize that people rank infinitely higher than anything else on the list? Have you considered that God may have scooted these people into view for the very purpose of slowing you down? (p.23)

Whatever is getting in the way of your plan for the day,...whatever that intrusion into your grand plan for the day is, it's also an opportunity to enter into rest. (p.24)

and now a quote from C.S.Lewis

The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own' or 'real' life. The truth is of course that what one calls the interruptions are precisely one's real life - the life God is sending one day by day; what one calls ones' 'real life' is a phantom of one's own imagination. 

-C.S. Lewis (McKenzie, A Homeschooler's Guide to Unshakeable Peace, p.23-24)

I laughed when I read this because this is ME. I lament the juice spilled on the floor, or the broken dryer (did I mention our dryer is broken - just in case you missed that), the little inconveniences of every day life because they interrupt my plans. They interrupt my comfort. I just want them to be over with so I can get on and live my "real life". Yet, that is life. These interruptions should also be driving us to interact with the people in our lives to take the time to get on eye level with that child and say, "It's okay, let's clean this up together." instead of ranting and raving how their mistake interrupted plans for the day. (I am so guilty of this).

But, what about the BIG things? Death, diagnosis, disease, health issues - those aren't small things. How do we live from rest in the big things? The same was with the small - taking time to trust, rest, pray, and live connected with the One who knows and has experienced life as we know it.

Hebrews 2:17-18

Therefore he had to be made like his brothers in every respect, so that he might become a merciful and faithful high priest in the service of God, to make propitiation for the sins of the people. For because he himself has suffered when tempted, he is able to help those who are being tempted. 

Hebrews 4:15-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need. 

Our pastor preached on these scriptures last Sunday and pointed out that Jesus is the only God of all the religions of the world - the God of all gods who came to earth to be like His people. He left the glory of heaven to experience life and suffering, ultimately to die a death for sins he did not commit so we could have a relationship with him. He doesn't ask for us to be perfect, to follow a set of rules, but to lay aside our sin and follow Him.

He experienced so many things as a man on earth:

*financial hardship (but the Son of Man has now where to lay his head, Luke 9:58), 

*emotional suffering (Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done, Luke 22:58), 

*loss of relationship (He was betrayed by Judas)
*physical suffering (beaten, crown of thorns, cat of nine tails, crucified)
*persecution and mocking (And Herod with his solders treated him with contempt and mocked him, Luke 23:11)
*betrayal and denial (by Judas and Peter)
*temptation (Matthew 4)

Yet, through it all, the writer of Hebrews says we do not have a high priest who is unable to sympathize with our weaknesses. He knows suffering. He wept when Lazarus died, even though He knew He would raise him to life again. He experienced hard things and can sympathize with us in our weakness because He isn't the God in heaven so far removed from us, but He is Emmanuel - God With Us.

I want to fall on my knees and worship and cry, "Holy, Holy, Holy."

As a result I can go on and have new expectations, not that life is going to be easy or that life isn't going to be....."life", but that He is with me. He will never leave me. He is faithful. He is merciful. His love is never ending. The more I live connected with Him, the more I bring my petitions before Him, my weaknesses, my failures - the more His Holy Spirit empowers me to face circumstances that are beyond my control and I can have peace in all circumstances, joy in trials, faith in hardships.Whatever we face, with Christ, there is always hope, and I can put all my expectations in Him because He never fails.

Toby's Summer Update

No news is always good news where Toby is concerned. Although, we have had some things going on, it’s been hard to find the time to sit down long enough to let you know how he’s doing. Overall, he’s doing well. We have gone four months without a hospital stay and that is always a success in my book, and I’m truly thankful for the downtime.

He has had a lot of appointments in recent weeks/months. He was fitted for compression socks to help with his circulation because of his legs/feet turning purple. I will say that it has improved. It’s also Murphy’s Law – as soon as we get the socks, his circulation gets better and he doesn’t really need to wear them as often. I think the warmer weather helps too.

Three weeks ago, we picked up a pair of knee splints, which are braces Toby will wear at night to help stretch out his knees so they will straighten. They are pretty tight.

Which leads me to….spinal cord detethering surgery.

The neurosurgeon and I have been doing this dance for about a year of getting to know each other and him getting to know Toby. He was new to NCH last April. He is also very conservative when it comes to surgery, and I’m thankful for that, but it’s very possible Toby need his spinal cord untethered again. It’s been quite a struggle because his left hip is so tight and barely abducts anymore. It’s causing some skin issues, issues with dressing, cleanliness, etc. It’s really tough – really tough. All of this tightness in his legs, knees, and now his left foot – which now turns up and in, considerably – are in my mind pointing to his needing surgery. Last week we went to see the orthopedic surgeon about the hip, and he said there really isn’t much he can do for him either.  The neurosurgeon wanted to see if the knee splints would help improve his knees, etc.

It’s hard to think about him having this surgery – we’ve kind of gotten used to him being so tight and drawn up together, but it’s really starting to prevent him from doing ADL’s or activities of daily living like getting dressed. His legs will draw together and you can barely pry them apart. We still help him a lot with dressing his lower body because it’s so difficult. It would take him 15 minutes to get shorts on.  Even sitting in a chair is difficult because his legs curl up underneath him. I’m amazed when I think back to just about three years ago when he was so loose, he could go from lying on his stomach to sitting, while moving his legs into a splits position. It’s hard to explain, but he just seems too young to have so many difficulties.

June 17^th, Toby got his second set of Botox injections in his hips. I thought for sure that he would need detethering surgery right away, but the Botox has bought us some more time. We saw neurosurgery last Friday and had a long discussion about it. He basically said if he did the surgery, it would be very aggressive. He would find the point where his function is lost on the spine and cut the spine right there. Of course this made me cringe. It seems so permanent and what happens if there’s a new medical development that allows him to walk later in life, but yet we made the choice to sever his spinal cord. His thinking is to minimize having to go in and detether again. The more you do it the more scar tissue you create and the more you have to do it. He said, “It’s crazy that kids like him at eight years old are in here with 30 surgeries.” I agree. He did ask if things got worse after every lengthening surgery. I can’t say that it happens each time, but over the past two years he has gotten progressively worse. The neurosurgeon is going to pow-wow with the orthopedic surgeon, and they will get back with me. We just aren’t sure what to do. A month ago before Botox I was already for the surgery because of the issues we are having. Currently, the Botox has helped a lot, his hips and knee contractures have improved – especially with wearing the knee braces at night.

August 7^th, Toby will be having surgery #30. This time he is getting a new set of VEPTR rods because he’s outgrown this set. It should be pretty routine; he’ll be in a few days. It won’t be quite as invasive as the full insertion he had about 18 months ago because the hooks stay and the rods detach and then are reattached. He does have one hook coming through his bone in his right hip, so we will know in a few weeks if they will have to fix that piece.

I apologize again for the delay in updates. We have been incredibly busy. I will definitely post updates when he has surgery in August or after we hear back from neurosurgery on what’s next. 

It's a Good Friday For Many Reasons

Today is Good Friday. It's an amazing day of remembrance of our deliverance from sin through Jesus' death on the cross. We now await to celebrate His victory over death on Resurrection Sunday. I am always in awe of these verses:

"But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, and by His stripes we are healed" (Isaiah 53:5)

Because of Him we have redemption and are at peace with God because our sins are forgiven. Praise God!

Good Friday also holds significance to us in regards to Toby. There are certain dates that are etched in my mind. They are memorials to the scars, pain, and victories we have celebrated these past 8 years. There's...

*D-Day or Diagnosis Day (August 31, 2006),
*The day our lives were turned upside down and Toby went into respiratory failure (January 15, 2007)
*The day Toby got his trach (February7, 2007)
*The day we brought a medically fragile baby home with a trach, ventilator, gj-tube, and private duty nursing (March 19, 2007)
*The day of Toby's ETV surgery (March 17, 2012)
*The day of his awful seizure (March 24, 2012)

And then, there's April 5th, 2012 - It was Good Friday. Three years ago on Good Friday (and yes I know today is April 3rd, but it's close enough!) Toby was released from the rehab unit, after being in-patient for almost two weeks and his awful convulsive seizure that lasted four to six hours. I've never been able to get a clear answer on just how long it was. The neurologist reassures me that after 30 minutes they get concerned about major damage to the hippocampus in the brain, and so four to six hours is quite long enough.

We know. We lived it.

We watched it, and grieved through it wondering if it would ever stop, and if Toby would ever wake up to talk to us again, squeeze us, and tell us he loved us.

He did, and I'm so thankful.

Since then, he's had some major ups and downs. He's had 17 surgeries in the 3 years since. Wow! I truly had no idea until I went back to look at my spreadsheet on that one. 17 - Double Wow!

One thing I have learned through this journey is never to assume your current circumstances will be this way always. Things change, sometimes for worse, but often times for better. We've had some really tough medical stuff to deal with, but we've also seen Toby grow and get stronger.

Here are a few updates since February 2015:

1. Toby's had some issues with circulation in his feet. They turn a very dark purple color, especially his right one. His capillary refill (or blood return) is slow, and so we saw Physical Medicine for that in Myelo Clinic a few weeks ago. They are recommending custom made compression socks to help the blood to flow back up out of his legs instead of down to stay there and pool in his feet.

2. We had a pulmonary appointment March 2nd. Toby is doing well, and for the first time ever we don't have to see him for a year unless there's an issue. He will most likely always need his ventilator and trach, and so he is as stable as he can be with both. During this appointment Toby told Dr. K that he wants to be a doctor when he grows up. Dr. K was a fellow when we first met him, and has followed Toby for the last 8 years. Out of all of our doctors, he's probably the one we've seen the longest that hasn't retired or left NCH. He told Toby he wanted to be the first to write his letter of recommendation when he applies to medical school. I teared up!

3. Toby can sit up on the floor by himself with his arms up for 60 seconds. Now, I know that sounds ridiculous to celebrate, but Toby is essentially paralyzed from the waist down. He has some feeling in places, but you just try to sit on a bottom that's numb. We saw his Physical Therapist for the first time in 6 months, and her last goal was for him to be able to hold his arms in the air for 20 seconds. He blew her away with 60 seconds, and did it twice, which leads me to number four...

4. Toby's upper body strength is really amazing. He is often trying to get up on his hands and knees. He scoots around the floor while sitting up by just using his arms, even though his lower body is dead weight. Sometimes, his pants fall down from scooting around so much and we all laugh! Poor kid!

His newest trick is that he can get from his chair to the floor mostly by himself. In fact today he did it without an adult around and fell into Caris' bunk-bed ladder and bumped his nose. It's fine, and he's fine, but we told him to make sure he has a "spotter" around. 

5. We went back for yet another Myelo Clinic appointment to discuss the Botox injections and whether or not they were effective. They have helped loosen his muscles some, so the doctor wants to repeat them about every 3 months. We also have stretches we are doing twice a day. PT also recommended dynamic knee splints to wear on one leg per night and then alternate. These are adjustable by an angle at the knee, so we can continue to stretch his legs out, so they aren't so drawn up underneath him.

6. Bowel program/Bladder Stuff - most of this is going really well. Toby is in underwear consistently during the day. We are still dealing with a few nighttime accidents, and so the colorectal team recommended adding a water soluble fiber like pectin to his diet. We are going to try an apple pectin because I wasn't keen on the chemicals in citrucel and Sure-Jell (yes, they wanted us to use Sure-Jell). The hope is that it will allow for less leakage if his stool has some slight bulk to it. Sorry about the "poop" talk, but that's the story of my life. I await the day my life doesn't revolve around pee/poop talk, but alas, it is my fate.

7. Medications are decreased/g-tube might come out. Toby is really only on one medication consistently for his appetite. He takes a pro-biotic, Vitamin D, and now we'll add the pectin, but we aren't using his feeding tube hardly at all. Just this week, we asked the night nurses to stop using it at night for fluids. He's drinking around 25-40 oz. consistently during the day, and since he's off any major medications through the tube, alas, we are going for the six month goal of no usage, so hopefully we can get it out this fall.

8. Toby's back is doing better. He does have some very prominent rods, and if he's ever sitting on the floor, you can see them through his shirt. It's crazy! He has had some skin issues, but I consistently use frankincense (an essential oil) on those spots, and they have healed. The NP in Orthopedic surgery made fun of me in clinic about them, but they work, so I don't mind.

9. Wheelchair update. We are currently waiting on approval or denial from secondary insurance on Toby's motorized wheelchair. There were some issues with it and it had to be resubmitted. I'm hoping that he will have it soon before summer especially so he can be active and play outside with the other kids, keep up with them, and be in the grass. Pray with me on this!

10. Neurology discharged us! Since, Toby hasn't had a seizure in almost 3 years we no longer have to see neurology. She told me to call her if we ever needed anything, that we wouldn't have to jump through any hoops, etc. to get answers, but we don't have to follow up with her unless we need to. One less doctor. Can I get a woo hoo? :)

Last, but certainly not least, and this is the main reason for my post tonight is a video of Toby's strength. He's been out of commission from sled hockey this winter from his many surgeries, and then our schedule just didn't allow for him to go. I wasn't even sure they were still holding practice. Well, tonight, he went to the last practice and did amazing. I can't get over how strong he is.

Here is a video of hockey last fall:

Here is a video of hockey practice tonight:

Mind you, he hasn't been to practice since last November, but that doesn't seem to stop him. Although the season is over, he will be anxious to play again in the fall. For now, we move on to Miracle League Baseball.

Thank you for the walk down memory lane, and for allowing me to catch you up on all of the medical updates. It's been awhile. We are so thankful for how far Toby has come from three years ago when he could barely hold his head up after that awful seizure. I'm so thankful that God continues to walk with us through this journey. He is ever faithful.

In no way do I try to compare Jesus' death on the cross and resurrection with what we have gone through, but yet as a result of that - He is with me. As a result of that, I can know Him and have a relationship with Him. As a result of that, He hears my cries and is near to me when my heart is broken. As a result of that, we have the hope of heaven - I know Toby will walk and run. He will play and breathe on his own without equipment, and we will spend eternity praising Him for His grace, goodness, and mercy. It is indeed a Good Friday!

Feeling Like Mary

If you haven't heard the song "Born in Me" as sung by Francesca Battistelli, I highly recommend it. This time of year always takes me back to what it may have felt like to have been Mary carrying baby Jesus.  Eight years ago, I was expecting a special baby too, and he was to be born three days after Christmas.  Every year at this time I am a little more emotional than usual, a little more cognizant of the birth of Jesus. I can imagine what it may have felt like to have been Mary when the angel came to tell her that even though she was a virgin, she was with child and it was the Messiah - the one they had been waiting for- --  to save them.

We also received startling news that held much fear and trepidation.

I would like to put a disclaimer in here, and clearly state that I am respectfully making this analogy. In no way do I equate Toby to Jesus.

However, I imagine that Mary must have been feeling some of the very same things that I felt while expecting Toby: fear, anxiety, joy, wonder, questions of why God had chosen her to be the mother. Many times through the story of Jesus' birth you read about angels reassuring Mary, Joseph, Zachariah, and the shepherds to not be afraid - so I know that those involved had fear over the birth of Jesus.  It was a few years ago, actually, around this time of year that I felt like God helped me to connect to what Mary may have experienced.  Expecting Jesus may have been similar to expecting a child with special needs.  There were many things for Mary to fear - stoning because she was found with child before she was married, the census and taxes that took them on a far away journey to Bethlehem right around her time to deliver.  She was facing so many unknowns.  And then there was Jesus, who was/is perfect and sinless. Mary and Joseph were imperfect and sinful, so imagine trying to raise a child, a perfect child, when in reality every time they may have gone to teach or discipline Jesus - the sin wasn't in Him, but them.  You see this in the story of their trip to Jerusalem.  On the way home Jesus is no where to be found.  They go back to the temple and he's teaching the scribes. It's hard to tell from the scriptures exactly, but I can imagine they were frustrated to find that He wasn't with them, and what does He tell them.  "I have to be about My Father's business."  Oops - not His mistake, it was theirs.

Mary also knew the reason for His birth, that He was born to die for her own sins.  I wonder if every day leading up to His birth she had to daily trust God for what He was giving her. I wonder if every day after his birth she had to trust God because each day took her one step closer to His death.  The same God that chose Mary and Joseph to be Jesus' earthly parents, chose Bruce and I to be Toby's parents...that's an awe-inspiring thought, isn't it?  Just think about that.  If you are a parent, God chose your children just for you, just as God chose His plan of redemption from the beginning of time.

At one point in Francesca's song there's a phrase that says, "I am not brave, I'll never be, the only thing my heart can offer is a vacancy." This is also true of each and everyone of us. Pastor Dean (our pastor) often says we are "Undeniably flawed, but unbelievably loved" and it's because of our fallen sinful state that we need Him and our heart/lives to vacant so He can fill us, love us, and redeem us. The only thing I can offer Him is the surrender of my heart and life for Him to use me in any way He sees fit. The same God who entrusted Mary and Joseph to be the Son of God's parents, has also entrusted us with His purposes when we know Him and call Him our Savior.

So, this time of year always holds extra special meaning for me, and I pray because of this post you might find a place for Him in your life too.

The Need for a Shunt

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 put in an ICP Monitor - 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. 

Two times in Toby's life his sodium has dropped below normal levels and both were closely related to shunt failure. The condition is called hyponotremia. Just last week a neuro-ophthalmologist told me that at the base of the third ventricle in the brain is the hypothalamus, which controls sodium levels/hormones, etc. It's possible that too much pressure there or a cut as in the case with the ETV messed with his sodium levels and caused them to dip.  It was interesting to learn this bit of information.

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.

Learning to Speak

If I had to choose between Toby being healed enough to walk or talk, I would choose the latter any day. When any person gets a trach, they lose the ability to talk with their mouth.  The trach bypasses the throat/vocal cords in breathing through the mouth and nose so the vocal cords aren't vibrating to produce sound.  When I made that realization, it was pretty devastating.  There were days when we had to rely on the ventilator alarms or pulse oximeter to let us know when he was upset because the high pressure alarm would go off or his heart rate would be so high from crying that alarm would go off.  Watching your child cry with no sound coming out broke this mama's heart every time.

After Toby began to be able to hold his head up and sit up with some support, we began to teach him sign language.  I just "happened" to come across the Signing Time DVD's at the library, and we were hooked. Rachel Coleman's personal story is one that many mothers of special kids can relate to - I personally connected with her not only because of her daughter Leah, who was born deaf, but also her daughter Lucy, who has Spina Bifida and Cerebral Palsy.  The first video we watched was "My Favorite Things", and at the end of the video there's a song called "Shine". I remember sitting in front of the television with tears running down my face.

Sometimes I see you stuck
For such a long time 
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do 
Until somehow you do 
And you do — you do — you shine

The days and months and years, 
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine 
And you do, you do, you shine

Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
everyone will see
Shine Shine Shine Shine Shine 
I’m so glad you are mine
And you’ll shine in your own time

Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do it 
And Trevor will do what Trevor will do when Trevor is ready to do it 
And Lucy will do what Lucy will do when Lucy is ready to do it
And they’ll do it in their own time

This song made me realize that Toby would "shine" in his own way and in his own time.  He was going to pave his own path, and God's plan for Toby was just that - just for Toby. In some ways it took the pressure off.  It didn't matter if he was developing as quickly as his siblings or meeting that list of requirements on the developmental milestone list you get from your pediatrician's office.  Toby is uniquely "Toby" just as Conor, Garrett, and Caris are uniquely themselves, and God's plan for their lives is individual to each of them.  I've also learned that for our family - our main goal is to SHINE the love of Christ to others - so they can know His hope, His love, His plan for their lives, and God was and is doing that through Toby.

So between 20-22 months of age, Toby began to make noise around his trach.  He had a bit of an air leak, which means some air would go over his vocal cords, and he began to babble. We were constantly getting the camera out to take video, and as you can see her - this is what Toby thought of us trying to get him to talk!

Slowly, slowly we began to hear some words.  He said  "baby" and "mama" around 26-27 months - so he was well over two before he really began to "talk".

I remember the first time we had to tell him to "be quiet!"  I never imagined that we would tell him that. I also want to take a moment to thank his speech therapist.  He began working with Miss Jen when he was around 2 1/2 years old; I remember specifically asking our ENT Nurse Practitioner if there was a speech therapist that knew how to work with kids with trachs in teaching them how to talk.  Enter: Miss Jen. She has been working with Toby for almost 6 years now, and he has come so far under her therapy. Another reason he's done so well is his ability to wear a passy-muir valve.  This is a special device that can be used in ventilator tubing or directly on the trach.  It forces the person to move that air up through their mouth and nose.  When he used it in his ventilator tubing, he didn't do very well.  The high pressure from ventilator breaths was too much for him to handle, but once he began to wean from the ventilator, he tolerated the valve really well.

Toby's Grandpa Holt loves to sing and play the piano.  He would come over even and he and Toby would practice singing - even before Toby had the breath support to sing a full sentence.  Now, Toby can sing an entire song, and has the breath support to do so.  His one vocal cord still doesn't move exactly like it should, which causes his singing to be off key at times, but it doesn't matter.  "Make a joyful noise unto the LORD!"
The first time we heard Toby sing "Jesus Loves Me" with Grandpa - there wasn't a dry eye in our house. Enjoy this video also (I wasn't able to put it in the blog - so here's the link to youtube).

Mobility and Independence

Spina Bifida is a diagnosis with varying degrees.  Some kids walk with very little bracing, some walk with more support and a walker or crutches, and some can't walk at all.

Some of you may be wondering if Toby will ever walk, so today will answer that question.  Our hope and prayer from the very beginning was that Toby would learn to walk.  A lot of his movement (rolling, sitting, crawling) was really delayed not just from the paralysis in his legs, but also from restriction of being connected to the ventilator tubing.

We began using these pedi-wraps to straighten his knees and give him stability in his legs.  You can see here, he's hooked up to his ventilator, but still practicing his standing.  After this we had to advocate very hard with the physical medicine doctor to write him a prescription for braces.  It took several months to convince her to give Toby a chance, instead of deciding for him that he would never walk.  His first set of braces were HKAFO's (Hip, Knee, Ankle, and Foot Orthotics).

Toby seemed to be making some progress, but he really has little knee or foot movement, so all of it comes from his hips.  We realized pretty early on, that he would either need a really strong upper body to do a swing through gait or reciprocating gait by using his hip flexion to move one leg and then swing the other leg. He also has a significant leg length discrepancy where one leg is longer than the other, so he's also had to have his shoes adjusted.

Then, he outgrew his first set of braces, and we moved and switched therapists.  This time they decided to try HKAFO braces where the knees were completely stiff and couldn't bend.  It seems great in theory because it gave him so much stability, but they weren't practical at all.  For instance, he can't ever wear them outside of therapy or in practice walking because the knees were always bent:

The process of getting casted for braces can appear medieval in some ways, but it's painless, and doesn't take very long!

Toby's also had a mobile stander that we purchased used to help him put weight on his legs.  He loves it when we get him into it, but alas last week we sold it and passed it on to another family who needs it.  Toby's leg length discrepancy is too great.

In the past year, with his severe scoliosis, and the titanium rods holding his spine in place, we have realizing that most likely Toby isn't ever going to walk independently.  I'm learning to accept that he's going to be a full time wheelchair user, but I have to be honest it's really been a struggle.  With each back surgery, he's lost a lot of function even in being an independent mover - sitting up on his own, going from lying to sitting.  The permanence of it has been very difficult to accept.

After February of this year (2014) when the surgeon attached some screws into his spine to secure the left rod, things finally began to look up.  He made it through that recovery - 2 long months of now sitting up or moving his wheelchair on his own.  Now, he's sitting up on his own, getting dressed again independently (for the most part), and pushing his wheelchair. Some mornings I find him doing push ups in his bed while sitting, and he can lift his entire body off of the bed with his arms! He also started playing sled hockey. I really wanted him to try it, but was so afraid because of the chance that a rod would break.  Do you know what his orthopedic surgeon said, "Toby has to be a kid, and if that happens, we will deal with it when it happens!"  That was so freeing for me.

We are thankful for these new opportunities and I've learned that independence in his mobility is also very important. Just recently, we got a prescription for a motorized wheelchair. It's something that I fought with every breath the last several years, but then this summer I watched as every time he would want to go next door to play with the neighbor kids.  Someone had to push him, someone had to take him.  It was so heartbreaking to see him sitting in his chair, a bystander, while other kids played tag and climbed their play set. I knew then that it was time to at least get a motorized chair for outside play and independence.  I want Toby to be as independent as possible, however we can teach him that or allow him to have that, we will!  He will still use his manual chair for in the house and other smaller areas to keep him active and fit, but now we will have another option for independence.