Every Step of the Way...23 Days

When I committed to doing a blog every day for 25 days, I think I should have thought it through a bit more!! I haven't written this much in....well...ever.
23 more days until the race.  

If you would like to donate on Toby's behalf, click here

The next step in our journey with Toby began on the evening of January 14th.  While I was nursing that day, I began to notice that something wasn't right.  I suspected he may have reflux.  He had projectile vomited a few times, and a lot more milk was coming out than going in.  I wasn't panicking just yet because I had a similar issue with Garrett.  I had so much milk that he couldn't eat on both sides or he would vomit it all back up; his tummy was too full.  I tried to slow things down with Toby too, and then that evening I called my friend Sonya.   She's a dear friend from college, a nurse, and one of her boys had severe reflux, I knew she would give me good advice.  The biggest fear in the back of my mind was shunt failure because a major symptom of that is projectile vomiting.  That night things got worse, and Toby started to make this awful sound when he was breathing called stridor.  In the middle of the night milk was coming out of his nose.  by the next morning his breathing was really fast.

When we had left the hospital eleven days prior to this, our case worker handed me a huge binder with different doctors' names and phone numbers. It contained a variety of different information related to Spina Bifida: orthopedics, physical medicine, urology, developmental pediatrician, and neurosurgery.  I felt overwhelmed that morning because I had no idea which doctor's office to call.  What area did this fall under?I called a friend who is a pediatric nurse practitioner, and she had me do a respiration count, and then said, "he needs to go to the ER."  I don't know why I didn't think of that.  She came over to stay with the boys, while Bruce and I headed to the ER.

We were admitted later that day to the Infectious Disease floor because the ER doctors suspected RSV.  I knew they were wrong, but I didn't speak up; no one in our house was sick, even with a cold.  In the back of my mind I kept going back to what I had read - that this was a symptom of his Chiari II Malformation. Chiari II is named after a man named Arnold Chiari.  During brain development when a baby has hydrocephalus, certain pieces and parts of the brain - specifically the cerebellum end up being a different shape, size, and cause it to be displaced into the brain stem.  Your brain stem is where the vagus nerve is located, which controls breathing, swallowing, etc.

Within a few days, Toby failed a swallow study - he was aspirating his food into his lungs, so they put in a nasal gastrointestinal feeding tube placed (through his nose), and once again I was back to pumping.  His oxygen was low, so he was hooked up to oxygen through a nasal cannula. They also ruled out any shunt issues at this point, but he cried often.  It was just awful - I can remember being so frustrated that I couldn't feed him.  One night he was just miserable, and I was there holding him in a rocking chair with my back to the door, he just wanted to nurse.  I was so angry, and I can remember a PCA (Patient Care Assistant) opening up the door to ask, "Mom, are you feeding him.?"  My reply was, "No, but I want to."  What was so frustrating is that I hadn't been there for the swallow study.  It wasn't supposed to be for a few more days; I had gone home to get rest, and then they had a cancellation.  Just the day before, an occupational therapist had evaluated me nursing him to see if the swallowing was positional; her conclusion was he could continue nursing.

Then, ENT came up and put a camera through his nose to look at his upper airway.  His vocal cords were paralyzed, and neurosurgery ordered an MRI to see if he would need a Chiari decompression.

On Thursday, he had an MRI.  They didn't get any decent pictures because he was retracting too much when he was breathing.  I can remember carrying him back up to the floor from radiology, and he was completely limp in my arms.  The PCA came in to do vitals and his blood pressure was 140/80; temperature in the low 96's.  "Something is really wrong," I told her, "I'm really worried."  Toby had been a very strong newborn; we would have to lay him on his side to change his diaper because of the open hole in his back, and he would roll over on me.  He was that strong!  Now, he was limp - I just remember his arms/legs hanging down past my arms.  One of the residents called an ICU doctor to come up.  She is an older cardiac doctor that has been there forever - Dr. Kraenen.  She took one look at him and said, "Get him in the PICU right now!"

Then, it was the "Running of the Bulls" (as my friend Allison calls it).  Blood tests were being ordered, people were rushing in, and I was falling apart.  Dr. Kraenen gave me a side hug and said, "It's going to be okay, he's going to be okay."  The major reason for his limp unresponsiveness and crazy vitals was his sodium had dropped to 108.  They put him on an IV drip of saline, scheduled for a PICC line for antibiotics, and then an EEG to make sure he wasn't having seizures.  Normal sodium levels are between 135-145...anything below that and you run the risk of seizures.

The mask was just awful; it never stayed on right.  It was also really strange because one eye was always cracked open a bit; it sort of creeped me out.

Once he was in the ICU hooked up to the sensitive monitors, we started to see the apnea episodes.  When you look at this screen below you can see:
HR (in green) - 112
BP (in purple) - 75/32
Temperature (in purple/Celsius) - 35.6
Respirations (in white) - 8
Oxygen (in blue) - 100

We would have to rub his arm to get him to keep breathing.  The doctors would then try to wean him off of CPAP, and he would code - turn blue, oxygen and heart rate dropping.  That happened so many times I lost count.

By this time, his sodium was staying level.  He finally was maintaining his own body temperature (prior to this he needed warming lights, etc.), and his thyroid tests came back normal.  They were trying to figure out why his sodium dropped.  They also wanted another MRI to see if he had any damage to his brain from the low sodium.

As I was driving back and forth from home to the hospital I was listening to a CD by Stephen Curtis Chapman.  The song called "Believe Me Now" really spoke to my heart during this time:

I watch you looking out across the raging water
So sure your only hope lies on the other side

You hear the enemy that's closing in around you
And I know that you don't have the strength to fightBut do you have the faith to stand

And believe me now, believe me here
Remember all the times I've told you loud and clearI am with you and I am for you

So believe me now, believe me now

I am the one who waved my hand and split the ocean
I am the one who spoke the words and raised the dead
I've loved you long before I set the world in motionI know all the fears you're feeling now

But do you remember who I am?

Will you believe me now, believe me here
Remember all the times I've told you loud and clear
I am with you and I am for you

So believe me now, believe it's true
I never have, I never will abandon you
And the God that I have always been
I will forever be, so believe me now

I am the God who never wastes a single hurt that you endure
My words are true and all my promises are sure

So believe me now, oh believe me now

So believe me now, believe me hereRemember all the times I've told you loud and clear

I am with you and I am for you

So believe me now, believe it's true
I never have I never will abandon you
And the God that I have always been
I will forever be, so believe me now
Believe me now, believe me now

God was asking me to trust Him.  He was telling me that He was with us, that He would always be God no matter what happened with Toby.  He promised that He wouldn't waste this hurt we were going through; that I needed to believe.  I have clung to this song over and over through the years.  Even now, listening to it my eyes fill with tears.  One day at a time; He taught me to take things one day at a time.  He holds the future, and He can return to the earth at any moment to take us to heaven...then all that worry would have been for nothing.  I needed to trust Him one moment at a time because HE IS TRUSTWORTHY.  

  

Every Step of the Way...24 Days

24 Days Until the Race...
Toby's Birthday 

Today, I want to feature Toby's birth.  I was actually due on January 12th or 13th (I can't remember now, isn't that awful), but because of the risk of infection with a vaginal birth and the open hole in his back a cesarean section was our only option.  It took us awhile to choose a good date for his birth.  They were coordinating between the days my OB was in the operating room, Toby's neurosurgeon's surgery days, and the most important thing - having the baby before the end of 2006 for a tax credit.  You can just guess who in our family pushed that one!  At 39 weeks at 9:59 a.m., Jacob Tobin Holt was born.  He weighed 5 lbs. 11 oz. and was 18 1/2 inches long.  During my pregnancy I began reading a book called Living With Spina Bifida.  There's a part in the newborn chapter that discussed how some time babies can have severe side effects from their Chiari II Malformation such as: stridor, weak cry, difficulty breathing, central apnea, feeding and swallowing disorders, reflux, and failure to thrive.  I was fairly familiar with some of these things because some very close friends of ours have a son the exact same age as Conor who has a trach and a ventilator.  In Spina Bifida it's fairly rare for kids to run into all of those things at once, but for some reason they caught my attention, and I began to pray that Toby would be able to nurse well, have a good strong cry, and avoid all of the above list.

When he came out, he was screaming and later in the NICU, he peed and pooped on his own, his legs were moving really well, and so we were all feeling much better about everything.

Why Jacob Tobin?

Most people don't realize that all three of our boys go by their middle names, and so does my husband.  It's a family tradition, and in spite of my objections, I lost that argument before we had even conceived our first child.  The conversation went something like:

Me: "I used to teach school, do you realize how confusing it is for kids to go by their middle names?"
Bruce: "I've lived with it my whole life." I couldn't argue with that logic.

I fell in love with the name Tobin.  It sounds silly, but I first heard the name of a character in a movie, and I just liked the way it sounded.  I can remember telling my mom what we thought we might name him and her words were (I don't think she remembers this), "I don't like it!".  My mom and I are very close, and I wasn't offended.  After his diagnosis and some research, we had more reasons to like Tobin and the nickname that we really wanted to call him "Toby.  They both come from the name "Tobias", which means "God is good". It fit perfectly.  Even in the middle of those dark days, God was faithful, and He is very good.   The "Jacob" piece came from realizing that both Conor and Garrett have Biblical first names (Benjamin Conor and Matthew Garrett).  We concluded we may as well stick with the trend, and Jacob Tobin was decided in the car on the way to his delivery!

I wasn't able to hold my baby after his birth. I remember sitting in the post-op area in extreme amounts of pain sobbing.  Bruce and my mom were in the NICU with Toby, and I was alone.  It was awful.  They said I could see him and touch him before his transport to Nationwide Children's, and finally after what seemed like forever, they began to move me to the NICU so I could see him.  We met in the hallway.

That evening my dad brought a photo of Toby to me so I could look at it while I was pumping.  One of my heart's desires were to nurse this baby, and so I pumped as if my life depended on it.  I pumped so much my milk came in before he even really tried nursing.

Around 5:00 p.m. that evening Toby also had surgery to close the open hole in his back.  He came through like a champ.

The next day, my doctor released me from the hospital for a few hours.  I was still cringing in pain from my c-section and was doped up on pain medications.  This day we held him for the very first time:

One of the biggest lessons I learned during this time was a reliance on God like I've never known.  It was so difficult being separated from my baby. Riverside Hospital graciously put me at the end of the hallway away from the nursery and the other moms.  I also learned to cry out to Him in our pain and suffering.  I read the book of Job, and realized that he was identified as a man after God's own heart, but he didn't sit quietly in a corner while he suffered.  He lamented, wept, and I was shocked that God allowed him to talk to Him like that.  It really taught me that it's okay to NOT BE OKAY.  It's okay to grieve though my circumstances, and lay it all at his feet.  That open communication with the Father creates an intimate relationship - and a trust like I had never known before.

Four days later they put in his shunt to treat his hydrocephalus.  Hydrocephalus is where the ventricles in the brain are over producing too much cerebral spinal fluid.  All of our brains produce CSF in the ventricles, but because of Toby's open hole in his back, the ventricles are programmed to produce too much because it's leaking out that hole instead of being recirculated through the CSF system.  Once the back is closed it can cause the brain/head to swell and ultimately death.  This little invention called the shunt is a small catheter inserted in the brain that drains the excess fluid from the brain into the abdominal cavity.

We also learned to straight cath at that time.  Even though he was peeing on his own, all families at NCH learn to straight cath before taking their babies home from the hospital.  I was devastated that he needed cathing, and I remember being ecstatic the first time he peed on myself and Bruce.  

On January 4th we took Toby home from the hospital.  I love these photos because he doesn't have a trach yet.  I remember feeling completely overwhelmed.  He needed straight cathing every three hours, nursed every 2-3 hours, and we were having to change make sure poop didn't get on his bandage or into his incision on his back.  The straight cathing and nursing didn't necessarily coincide on that every 3 hour schedule, which made for a very tired mama, and the other two boys (3 years old and 20 months weren't even home yet).

When they came home to see Toby, they fell in love with him at once. I  laugh at these pictures, but poor Conor's little eye was turning inward so badly.  He needed surgery to fix his eyes, the glasses just weren't cutting it.  This would happen a few months later.

Every Step of the Way

We have been really slow on getting the word out, but Toby has chosen to participate once again in the Nationwide Children's Columbus Marathon. He will be a part of Mile 19, which is the Encore Mile involving most of the children or alumni from the marathon last year.  It's been hard for me to get my act together with our crazy summer, Toby's several surgeries, home schooling, and just life in general.  Bruce and I are actually running the half-marathon this year.  It will be my third race and his first.  Training has not been as consistent as in the past, so I'm not expecting to go under 2 hours as in past years, but we are excited to be doing this together.  It's the first time in almost twelve years that we have had time (and the childcare and nursing care we need) to run together.

The count down has begun.  We have 25 days until the race.  Starting today (or tonight) I want to feature photos of Toby, share his story and how we are so thankful that Nationwide Children's is right in our backyard.  Although not every experience has been picture perfect, they have been with us every step of our journey.

We have also set up a fundraising page...click here

25 Days Until Race Day:

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

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

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

Double Digits

I can't believe Conor is now in the double digits.  The big 1 - 0!  Where have the last 10 years gone?
It seems like yesterday he was just a baby.  After two plus hours of labor, an hour of pushing on my side, an internal saline catheter, an internal fetal monitor in his head, six pounds and eleven ounces of bouncing baby boy came out.  It's a boy!  We had not found out what we were having.  It's a shocker, I know.  I am your typical planner/control freak; you would think I would want to know so I could plan, decorate, and prepare. We didn't, though; I also LOVE surprises - really love surprises, and there isn't much more fun than having the doctor declare, "It's a boy!" or "It's a girl!".

I remember that Conor was really strong.  He came out of the womb raring to go.  In this photo he was just a few hours old, and he was already trying to hold up his head.  He has been raring to go since the beginning and hasn't stopped since.

In this picture, Conor is one-year old.  I just love his hat and little smile.  Again, I'm just amazed at how fast the time has gone.  I know that this has contributed to our decision to home school.  Our children's pastor at church told me there's an app called "Legacy" in which you put in your child's birth date and it counts down the time until they graduate.  It's crazy, but we only have so many minutes and hours to pour Christ into our kids before they are gone.

Conor, essentially had two birthday celebrations.  One was with family.  For Toby's fifth birthday we learned about an organization called Icing Smiles.  They do special cakes for kids/siblings that have life threatening illnesses.  I had prayed about whether to do one for Conor this year, and then I had the thought - if something happens and Toby's medical situation would interfere with Conor's birthday, I'll get a cake.  Just a short time later we learned that one of Toby's surgeries would happen right before Conor's birthday.  That sealed the deal, I contacted them and they enlisted a local baker to make this cake.  It was amazing.  We were actually able to keep the cake a secret from Conor. He is so nosy and listens in on every phone conversation; he wants to know everything, but this time I was able to pull one over on him.

We joked that this was the birthday that never ended.  Toby was released from the hospital the afternoon of Conor's birthday, and the following weekend he had a party with his friends.  They played football outside, rode scooters in our basement in the dark with only glo-sticks to light the way, ate, had cake, and a few slept over.  They had a lot of fun!

I know a few of these pictures are blurry (my camera is awful), but Conor has such a great look on his face of laughing; I just love it.

Playing football!

Doing a group shot - serious and then silly....

To top the birthday off, Bruce has a friend that owns a Ferrari, and Conor had a chance to ride in it.  It really was the icing on the cake!!!

Even little brother got a chance to take a ride!

Permanence

Is it alright if I'm completely honest about this journey as a mother to a child that has special needs?  Since you said, "yes", I'll continue, and even if you said "no".  In the very beginning when we learned our sweet unborn baby had Spina Bifida, it was hard.  August 31st is the anniversary date and most parents will tell you that it's the date of a turning point in their lives.  It's a date that defines the "before" life and then the "after" life.  I grieved, I struggled, but truthfully I didn't really struggle with the acceptance.  It was the way it was, and either we were going to embrace the situation, heal and move on or we would be miserable.  I clearly remember having a conversation with my Mother-in-love (yes she truly is!).  She mentioned that she was praying for healing, and my response was that she could continue to do that, but I really felt like God was telling me "No, I'm not going to heal Toby; I have chosen this path for you, and will walk with you through this."  I also didn't struggle with the "why?" Again, this is my experience and I'm not telling you this to say it's wrong to ask why, I just didn't.  I felt like I could accept the "whys".  My faith in Christ began at a young age, and I know that here on earth we will experience suffering and trials.  Bruce and I had just finished a Bible study in the book of Ephesians, literally weeks before the news, and we had learned about trials.  I know that we suffer for many reasons, but here are a few I've learned:

1. So our faith grows to maturity and genuineness:
I Peter 3:6-7 "In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory, and honor when Jesus Christ is revealed." and
James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything."

2. So we learn to trust God and not ourselves and learn a greater dependence on God:
II Corinthians 12:9a - "But he said to me, "My grace is sufficeint for you, for my power is made perfect in weakness..."

3. We live in an earth that is cursed by sin, and bad things happen to all people:
Job 5:7 "Yet man is born to trouble as surely as sparks fly upward."

4. To learn gratefulness and thankfulness - there is always something we can be thankful for in any circumstance:
"In everything give thanks; for this is God's will for you in Christ Jesus."

5. We are able to comfort others with the comfort we are comforted with and are able to help others that are going through rough times.  There is something wonderful being able to relate to others that really truly "get it" - they understand what you are going through.
II Corinthians 1:3-4 "Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God."

6.  For God to be glorified:
John 9:1-3 "As He passed by, He saw a man blind from birth.  And his disciples asked Him, "Rabbi, who sinned, this man or his parents, that he would be born blind?  Jesus answered, "It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him."

7.  So others will be drawn to Christ through our testimony:
Psalm 40:1-3 "I waited patiently for the Lord; And He inclined to me and heard my cry.  He brought me up out of the pit of destruction, out of the miry clay, and he set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

BUT, right now I'm struggling with the "permanence" of our situation.  I have mentioned this before, but when you have a special needs child it's the trial that doesn't go away.  The alternatives are death or Christ returning to take us to heaven.  The first is unfathomable to me - or something I wouldn't wish for, and the second is imminent, but we can't predict if that will happen in our lifetime.  So, we have to continue on living. It's not as if I'm living every day in a cloud of gloom and despair, but grief has a way of sneaking up on you at a moment when you don't expect it.  It can cause a perfectly normal looking woman to burst into tears in the infant department at Babies 'R Us because her child never got to wear those sleepers with zippers because of his feeding tubes, or at the park watching all those kids running around - her child will NEVER walk.

Last week in church was a perfect example.  Our pastor is preaching a series called "Reel to Real" The "reel life" being what everyone sees: the FB, blog, movie version of our lives where we put our best foot forward. The "real life" is what is true, real, etc.  Every week there has been a short video sharing people's "real" stories of God's transforming grace.  This week it was a story of a wonderful family and how their daughter was diagnosed with multiple sclerosis.  After a few years, she has been mostly healed from it.  Then....I lost it.

Healing - something that I do pray for in Toby, but don't expect this side of heaven.  I know that he has been healed in many ways - he's talking, he eats some solid food, he doesn't need his ventilator all the time, BUT he won't be healed, and for the first time in my life I'm asking why.  I know the answers, "My grace is sufficient in your weakness. "We are going to face trials of many kinds so it produces patience in our lives." But, I am needing something more - I want a personal answer for me - why did God choose us, this situation with Toby - why did He allow it to be so hard, so permanent?

There have been many friends along the way - some who do not have special needs children, but you can sense in them an understanding and empathy not many others show.  I am so thankful for these friends.  They are listening to the voice of the Holy Spirit.  They take the time to hear beyond your words, to listen, hug you, pray for you, at the exact right moment sense your needs and somehow give you the right words to explain what you are going through. They take the time to show empathy.  A dear friend gave that to me this morning - She said it, "Carrie, it's the permanence of it, isn't it?  She hit the nail on the head.  I'm struggling with the permanence, why did God allow Toby to have "this" version of Spina Bifida?  Again, I'm not walking around in doom and gloom all the time, but the grief has a way of sneaking up on me and yelling "Boo!"  Then I burst into tears and have to leave church to sob because I can't contain my grief (and I did).

I know God is saying to me a couple of things: "Seek me and find me - pray for the answers you are seeking." Secondly, that I have to continue to take every step in faith - not comparing our situation to others, but trusting that God's plan is perfect - it's completely perfect for us, right now, in this moment, for our situation.  His grace will be sufficient; His love will be there - it's greater than anything I can realize or expect. Lastly, as our pastor said this past Sunday this is about God's glory - showing His glory through our stories. It's not about me, it's not about Toby - it's God's story - His ever sufficient grace and mercy picking me up daily to not just survive this journey, but to thrive and have true joy.  Psalm 40:1-3 (see above) has sort of become my theme for this special needs life - my goal, my desire.  The last part says, "He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the Lord." If one person comes to know the Lord - to have a personal relationship of complete dependence on Him through our situation - it's worth it.  If one person is encouraged in their faith and is more intimately connected with the Father - it's worth it.  My prayer is that many will see our faith and will trust in the Lord because He hasn't failed us yet!

I'm a Wimp!

I just have to give some accolades to all single moms and dads, and anyone who has a spouse deployed or one that works and is gone a lot.  Here's why, and it starts with a run-down of my day:

6:00 a.m.  - Alarm goes off, and I hit the snooze button a few times, then realize Bruce is up doing his 10-minute workout that he does every morning (he's so disciplined).  I know that I should probably get out of bed, and then the idea comes that if I beat him into the shower, I won't have to squeegee it afterwards (Rule in our house - last person in our shower has to squeegee the water off the tile).

6:40 a.m. - Toby is awake already.  That kid can go to bed at midnight and still wake up around 6:00 a.m. I get him up early to see if we can manage to do a mock run-through of what school will be like tomorrow. He takes FOR--EHHH-VER to eat breakfast, especially because we're including solid foods in his diet now, and every meal is a struggle.

7:00 a.m. - I've eaten breakfast, and am working on cutting up vegetables to get dinner for our neighbors in the crockpot - they just had a new baby (insert "ooohs and aahhhs")!

8:00 a.m. - All the kids are up; Toby is back with his nurse getting ready, having managed to eat breakfast a little faster this morning.  I'm frantically trying to finish the dinner so we can get out the door at 8:15 a.m. Toby has an ENT appointment at NCH (downtown) this morning.

8:50 a.m. - We arrive at the hospital, having managed to arrive about 25 minutes early for his appointment. Why so early you ask?  I wanted to get Conor, Garrett, and Caris into the sibling clubhouse, which is now located at the opposite end of the hospital from our appointment.  Because the handicap lot still has free parking and is closer to the appointment; we opt to park there, walk the distance and manage to get the kids in right away - then trek back to the other end for the appointment.

9:45 a.m. - Toby's appointment went well.  It was a follow up after his bronchoscopy and ear tube removal. She opts for a hearing test because he hasn't had one since infancy.  He passes with flying colors.  I joke with our nurse that "at least something on Toby works the way it's supposed to."  In this journey, we have to keep our sense of humor.

10:08 a.m. - I manage to make it back to the sibling clubhouse before the allotted pick-up time of 10:30 a.m., and we head home without traffic to run a few errands.

In order to not put anyone to sleep that is reading this - the rest of our day consisted of: a few more errands, a text from a friend to meet up for lunch - hey why not?  I'm always up for Chick-Fil-A.  Caris down for a nap; reorganize Toby's medical supplies and update his medical history; make some phone calls for some volunteer work; finish dinner for our neighbor and deliver; hold the sweetest newborn baby girl; hurry home to eat the other half of dinner and then rush all four kids in the van only to arrive late for Garrett's soccer practice once again (I didn't use to be late all the time).  Caris, Toby, Conor, and I played in the park during practice, and by 7:45 p.m. we are headed home.  At this time Conor is in tears with a headache that we can't figure out the origin of, and then has chills. I sent him to bed while I get Toby ready for his hour long bowel clean-out process, then realize that Conor is probably having side effects from the flu-mist vaccine he received on Monday - FABULOUS!  We skype with Grandma and Grandpa while Toby is on the potty (no shame here) and Garrett manages to help Caris wash her feet, get her a snack, and read her a story.  He always steps up to the plate when I need him and Conor is MIA.  At 10:04 p.m., Bruce arrives with a peace offering (caramel sundae) because he has been gone since 7:00 a.m. this morning, and knows that I struggle through days like this when he's not home in the evening to run one-on-two defense with the kids vs. one-on-four like tonight.

I cringe every time he calls me to let me know that he has a late appointment or meeting, especially the nights we don't have a nurse in the evenings to help with Toby.  It's rough - and I realize a few things:  a)I'm thankful for my husband, and pray for those that do this parenting thing alone for whatever reason, and b) I'll readily admit that I'm a wimp - and have a hard time surviving without my other half, so I'm thankful he has the job he does, and the next time he tells me he has another late meeting I'll try not to complain as much!

....By the way, did I mention my sweet Toby is starting kindergarten tomorrow? Boo - hoo!

I Can't...I'm in a Wheelchair

So, this blog post has been especially difficult to write because I'm really grieving.  I'm sobbing as I type. Finally, two friends helped me to admit that:

I'm scared about Toby's future, terrified really, and I'm grieving about it.  I'm also upset - upset that he can't walk, or even crawl and may never do either.  It's really hitting me hard... really hard.

Just recently a friend posted on her son's Caring Bridge page how she's struggling with comparison - comparison being the thief of joy. (Please read her July 31st entry - scroll to the end);  I was so thankful for her post because it helped me finally admit to myself, and my Savior that I'm struggling with comparison too - and fear.

Tonight as I was getting Toby dressed after his night-time bowel routine, I put his shorts on and prepped him to leave his room.  I told him,  "Toby, you really are going to need to start doing this (meaning putting his own shorts on) all by yourself."  His reply to me, "I can't, I'm in a wheelchair."

It broke this mommy's heart....

Of course, I told him about all the amazing things that kids can do in their wheelchairs, that yes of course it's harder for him to put his pants and shorts on, but that he's done it before.  He is stronger because of it.  But, honestly I just want to sit down and have a pity party.

I've been playing that comparison game again and it is robbing me of my joy...so and so's child is participating in that cool sport, so and so's child is walking now, so and so's child is etc. etc. etc.  Some days I need to get away from Facebook, and stop reading everyone's updates.  I try to focus on the things that Toby can do, the things we can be thankful for- He's alive, He isn't on his ventilator 24/7, etc.  BUT some times I don't even want to do that. I just want to cry, sob, and throw a little temper tantrum that "THIS ISN'T FAIR!"

Then, the fear creeps in.  Fearful that we aren't letting him get involved in enough sports - being active enough so he'll be active when he's older.  Adults with SB really struggle with weight issues as they get older, especially ones in wheelchairs and then it affects their quality of life.  I really want him to be active and fit so he doesn't struggle with that.  I fear that he is too dependent on us, that I do too much for him.
Another big struggle with adults is time management and independence.  With Toby's recent back surgery he really hasn't been able to do much by himself.  He has contractures now in his hips and knees, so his knees can't extend completely, which means he can't stand.  His braces don't fit him anymore, and his old ones kept his knees locked straight.  It's not safe for his tendons/joints to have them straight, if we could even get them straight in the braces because of the contractures.  The rods are also prohibiting any type of intensive physical therapy.  Every time we leave PT, I feel more discouraged because she tells me more exercises and movement he should/should not do.  She's been communicating with his orthopedic surgeon.  Most recently it was no twisting of his spine, so hitting baseballs.  Yesterday, in desperation, I asked her if we can work on crawling (army crawling) so he can be more independent.  We are still transferring him in and out of bed, in and off the commode, in and out of his shower chair.  She is worried that it will extend his spine too much, put too much pressure on those rods and go against the doctor's orders.  It crushed me - so all he can do is sit in his wheelchair? That's all!!

Just a few days ago, I told Bruce that I felt like we sort of got the double whammy with Spina Bifida AND the trach.  We love the water,  the beach, water skiing, water parks, the Great Lakes, camping, etc. (well, Bruce doesn't LOVE the beach so much), but it's really hard to take our kids to those places because of Toby.  He has a trach - he can't be immersed in water because it will go directly into his lungs.  It might cause an infection or worse drowning.  Is he still going to be sitting in the zero-entry end of the public pool when he's 10 or 15?

Another friend who has a younger child with Spina Bifida and a trach wrote a blog post recently called "Standing is Stupid".  (Her blog is amazing by the way - she has a gift with words).  It's an amazing perspective and one that I'm struggling to accept - that Toby may never stand or walk or swim or run, and that is is okay.  We will have to focus on the things he can do - and give him as much independence in that chair.

Toby loves to play doctor.  He doctors his JT doll (It's his Medical Mini-me), and one of his nurses always plays as his assistant.  We need to foster that love, and continue to encourage his independence.

One day none of this will matter at all - He will walk, run, and breathe in heaven and God will make him whole.  For now, I will grieve, cry and have my fit and when the sun comes up in the morning I'll set aside my grief and move on because that's what you have to do - keep moving on and accepting that God's grace is sufficient even when Toby's in a wheelchair.