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.

Bladder Infection Yet Again

We might have a possibility of filling our night nurse position - we're hoping to interview her some time this week; we'll keep you updated. Toby also might have a bladder infection again (I'm about 95% positive he does). We took a sample today and they will test it; we should know by Wednesday. It frustrates me that he will be on yet another antibiotic, but this too is in God's hands.

Lastly, Bruce and I are starting the process of looking for our next place to call home. Please be in prayer as we search for a home that will incorporate Toby's mobility needs as he gets older. We're trying to take this into consideration, which obviously limits our choices, so your prayers with us on this would be wonderful. Some days I think that our search is hopeless, but I also hear God continuing to ask me to trust HIM. He will provide, and the only way that we will be able to explain it is that God did it and not us!

More Milestones - Getting Wheels!

Toby began to really grow and change; he was finally hitting some milestones, and he began to get ornery.  A ventilator has auditory alarms, so if it becomes disconnected or has too much or not enough air pressure you will know it. I can't even remember how old he was, but he learned around 16 months or so how to cause too much air to come through his ventilator tubing to set the alarms off so we would come running and see what was the matter.  He also would untie the ties that held his ventilator on to his trach so we would see what would happen.

Some of his favorite play things were his suction tubing, suction catheters, and ventilator tubing, etc. I love these above photos because he was sneaking into his suction bag to see how much he could unload out of it.

His favorite play things!

We also learned fairly early on that Toby had a really fun sense of humor.  He would laugh a lot, and even now he says a lot of really witty things that just crack everyone up in the family.

In this picture, Toby hid his pacifier inside of his onesie, and you can tell by the middle photo that he thinks it's very funny.

At first when Toby came home from the hospital on a ventilator full time, I had little hope that he would ever be able to walk or handle a manual wheelchair.  With all of that equipment - where in the world would you put it on a manual chair?  Our first chair was an Otto Bock Kimba.  It was a medical stroller that had a ventilator tray underneath; a place for the HUGE car battery we needed to give the ventilator power (before lithium ion batteries for ventilators),  oxygen tank holder, etc.  It was great, but it was very heavy.  I do remember being so excited when we graduated from the double stroller - with Toby in back and ventilator in front to the Kimba.

Here's the Kimba; and oh my goodness those cheeks:

Around the age of 22 months we began to talk to Help Me Grow, who did therapy in our home through the county about a manual wheelchair.  They worked it out with Columbus Medical to outfit a manual chair with a ventilator tray on the back.  Some doctors, etc. had told us that it couldn't be done; but the guys there work miracles.  Today, a new friend's son has this chair - it's actually been passed on to two kids we know in the area with Spina Bifida.

Now, that ventilator weighs about 17-18 pounds.  It's heavy, so at first it took him awhile to be able to move that chair very well, but he did it.  When Toby was a little over 3, and we had to give the chair back to Help Me Grow (they graduate out at the age of 3 and are then serviced through the counties' board of developmental disabilities); we began to look at other chairs for Toby.  At the time, I will admit that I didn't do enough research, and just accepted what they told me insurance will cover. Toby was just coming off of his ventilator for short periods during the day time, so they did outfit this chair so it would also support a ventilator. We had to plan for the "what-ifs" at the time, and unfortunately it made the chair extremely heavy.
This is also the chair he has now, although it's been modified recently to make it lighter. Stay tuned, tomorrow we're going to share about walking and talking!

Milestones

After Joshua led the nation of Israel across the Jordan River, God commanded one man from each tribe to take one stone from the Jordan and pile them up where they stayed that night.  Joshua 4:6-7 says, "that this may be a sign among you.  When your children ask in time to come, 'What do those stones mean to you?' then you shall tell them that the waters of the Jordan were cut off before the ark of the covenant of the Lord. When it passed over the Jordan the waters of the Jordan were cut off.  So these stones shall be to the people of Israel a memorial forever."

In the same way, God has taught me to take the time to "remember all the times He's told us loud and clear - I am with you and I'm for you!"...to remember His promises.  During the times of doubt and darkness, we can look back and remember the times He has carried us through.  Even looking back to those dark days in the PICU, I forgot how bad it was - how many times we almost lost him.

Today I want to walk through a few of Toby's milestones.

His first several years were full of doctor's appointments, therapy, bladder infections, G/J tube replacements in Interventional Radiology, sleep studies, CT scans, bladder testing, ventilator checks, blood gases, urine cultures, x-rays, an EKG, loads of antibiotics and blood tests!!  He also had a lot of digestive and belly distension issues.  This is something that would be an overwhelming problem for 6+ years until he got his cecostomy (July 2013).  He had barium swallow studies, upper GI scopes, and even a rectal biopsy testing for Hirschsprung's disease.

When Toby was around 6-7 months old, he finally began to smile - and he hasn't stopped since.  His smile completely lights up a room.  One of my nicknames for him has been "Sunshine" because even on our darkest days, all I have to do it look at his smile and it makes the clouds go away - truly...just look at these pictures:

This was one of his very first smiles!

He loved to fall back on pillows; even  now he loves to go fast and be twirled around; he loves roller coasters.

I can't help but laugh out loud at these pictures.

At first, it felt like Toby was always behind.  He didn't like therapy very much...well you can tell by these photos what he thought about it at first:

Oh my goodness, just look at that face!

Learning to sit up on his own.

 He often had his pacifier in his mouth because he cried all through therapy!

Starting to like therapy; this was before those ZipZac chairs - Help Me Grow therapists brought this out to help him get used to wheeling himself around.

One thing that really bothered me was that he couldn't eat by mouth.  Eating is more than just, well, eating...it can be a social event too.  After being around other mommies of kids with special needs that were similar to Toby's, we began to learn different things.  We heard about Cincinatti Children's Hospital amazing Aerodigestive Team. It's a team of doctors made up of ENT, Pulmonary, GI (Gastro intestinal), plus nurse practitioners, speech and occupational therapists, nurses, etc. that collaborate together to help kids with complex airway and digestive issues.  Toby definitely fit the bill on that one.  So, we made plans to go down there.

At 15 months of age, Toby had a huge list of testing down at Cincy Children's.  It included a FEES test, Upper GI (checking reflux), x-rays, a Bronchoscopy, and an overnight Impedence Probe to look at reflux also.  The biggest findings were Toby had a lot of airway issues - trachealmalacia, bronchialmalacia - basically a floppy airway.  They also said he had a short trachea, but the best news of all was that Toby was SAFELY SWALLOWING by mouth and could start eating.  We started with just tastes of baby food, and then it led to eating a teaspoon, tablespoon, etc.

On the left was the photo I took after three days in Cincy.  In the middle are his feeding tubes.  The white one is the feeding tube going into his small intestine with formula.  The green one was coming from his stomach, and it meant he had safely swallowed the green bananas.  They colored them green so we would know if he was aspirating or not because we would suction green out of his trach. On the right was a few weeks later - trying it out at home.  Those are also green bananas!  Maybe that's why his favorite color is green!

This is what Toby thought of the therapist feeding him, but he gradually progressed to the far right...then this:

Feeding himself for the first time.

Today - eating pancakes!

Another thing they thought they found in Cincinnati was a bowel malrotation, where basically the intestine is twisted around and can possibly cause a bowel obstruction or even death.  They suggested he needed surgery to fix it.  After a lot of back and forth between Cincy and Columbus, we decided to come back to NCH and talk to our own surgeon..  She wasn't so sure he had the malrotation.  She and the radiologist here in Columbus, both thought that it just appeared that way on tests because of the way the J-tube was going into the small intestine. We decided to go ahead with an exploratory surgery anyway, and in the mean time Dr. C (who is now retired) decided to do a nissin, so we could treat Toby's reflux and possibly get rid of needing the J-tube altogether.  In surgery they in fact found that he had NO malrotation, BUT one positive that came out of this was Toby could now have food into his stomach instead of his small intestine.  This meant less time hooked up to the feeding pump - he eventually graduated to just at night, eating baby food during the day, and about 3 years ago got rid of the pump altogether when he began to eat enough pureed food by mouth all the time.

Nissin Surgery; oh my sweet boy.

This was when Garrett said that "they cracked Toby open.

Toby still has a ways to go with his eating.  Just in the last month, I have been able to order him his own kid's meal at Chick-Fil-A. I'm almost felt like crying. He's also been out to breakfast with daddy as a father/son thing Bruce does with the kids, and it's wonderful.  When I lament how many milestones he hasn't reached on time, I just have to look back and realize how far he's come and I am so thankful!

Siblings and Spina Bifida

One question that we get a lot is how to Toby's siblings handle having a brother with a disability.
Today I would like to answer that question.

I would like to think that they do really well - at least it seems from my perspective.  Our kids were very blessed to be around Evan so much when Toby came home with all of his equipment, they were sort of "used to it."  It wasn't a big surprise to them.

This is a set of my favorite pictures of Conor and Toby together.  I think Toby was trying to get his glasses!

One part of my personality, whether a blessing or curse, is needing justice and fairness in my life and the lives of those around me.  I try to keep things equal for the kids.  I know that at times this is dangerous and very impractical, so God is teaching me that everything in life isn't fair (obviously - we are living that out), but also that we need to teach/correct/instruct/rebuke our kids based on their personalities and learning styles.  I'm learning (focus on learning) to show my love to them according to their love language.  I'm also learning how to home school according to their learning needs. HOWEVER, one advantage to this, is we try very hard not to allow Toby's hospital stays to interfere too much with their own events - like sports or birthday parties, etc.  We try to allow them to have their own interests/lives outside of Toby.  In a gentle way, we also point out to them the many things they can be grateful for.  They have experienced many fun and exciting events because of Toby. They have had opportunities beyond anything most kids experience at their age - Blue Jacket hockey games, Crew soccer games, even our trip to Disney last year with make a Wish, and being on the television show - Tanked, etc.  So, even though some days can be really tough as Toby's sibling, some days are really fun too!

Each of the kids has a unique relationship with Toby.   Conor is his protector and a bit bossy, which lately has been a good thing.  He's been the one sibling who can motivate Toby to eat his solid food at every meal. He's good at thinking of ways Toby can participate (he's also good at this with his friend Evan).  When he first came home, he loved holding Toby - would read to him, and wanted to always be with him.

When Toby came home, Garrett was so little, so he didn't care too much about holding him, but that later changed.  He is our empathetic, bleeding heart. One time when Toby had surgery, and they came to visit he said, "They crack Toby open" and  "It's not fair."  He wanted Toby to come home from the hospital, and he was 3 1/2.  One time, Toby was crying during a trach tie change (those white ties that keep his trach in his neck), and he thought we were hurting him.  He said, "The nurse made me mad!" He's also my kid that runs from the room with a queasy stomach if too many secretions come flying out of Toby's trach.  Garrett is also the one that I think the instability of those first few months really affected him the most.  He turned 2 when Toby was in the hospital, and emotionally it caused too much instability.  I really have to work hard to communicate with him all that is happening when Toby goes in the hospital, so he doesn't fear the unknown.

Just a few months ago, I had to sit down and explain what Spina Bifida is, why Toby has a trach, a feeding tube, and a ventilator.  I just assumed he knew, but he was too small to remember when Toby came home with all that equipment.  I have to remember NOT to assume anything when it comes to Garrett - he has to talk things out.

Caris is Toby's playmate.  She is pretty mature for her age, and Toby is immature in some ways, so it makes it a perfect fit for them to play together.  She likes to pretend, and I can see how developmentally she has really helped him a long.  Sometimes, I laugh and cry when I compare their writing and Caris' handwriting is much neater than Toby's.

When Toby saw Caris at birth, it was love at first sight.  We were so nervous about it because prior to this Toby was afraid of babies and toddlers...but his little sister was a completely different story.

Toby used to HATE having pictures taken with his siblings.  He would cry and cry.  I also laugh looking at the middle photo because Toby looks as if he's ready to rip out his g-tube!

Two years ago, I attended the National Spina Bifida Conference, and sat in on a sibling panel.  It was amazing to hear those teenagers' stories.  They opened the panel up for questions, and you could tell that each of these brothers and sisters were so thankful for their sibling with Spina Bifida. It had taught them so much - most of all to give to others and how to be unselfish.  Hearing their perspective caused the tears to flow; it was a very emotional session, but also helpful to hear their perspective, and I pray that when my kids are grown, they will also be thankful for each other - and for Toby, and what God has taught them through him in their lives.

I would also predict that at least one of our kids, including Toby, may end up in the medical field with all the medical terms and procedures they know!

Bringing Medically Fragile Baby Home - Oct. 8th SB Awareness

I apologize for missing posting yesterday, but I was blessed to have a dear friend come to visit me  - Jen Potter, who's son has Spina Bifida.  We met online through an SB Yahoo group several years ago - Owen and Toby are about a month apart.  We met in person for the first time when she came to our church for a conference for moms of kids with special needs.  After that we attended the National SB Conference together in Indianapolis, and since then have been able to get together several times. We also share home schooling, which has been wonderful for us!  She's a truly kindred spirit, and we had a great time together the last few days.

I digress - here's today's post:

Finally, after spending almost 4 weeks on the step-down floor.  Toby was ready to come home. Basically, we had a crash course in nursing and respiratory therapy in a few short weeks.  One of our favorite floor nurses and respiratory therapists came with us - Rita and Johnny.  They taught us everything we know. Johnny has since retired, but Rita still works at NCH, and I am always guaranteed a wonderful supportive hug when I see her.  We love her, and she loves Toby.  Toby came home in his own personal chariot - ambulance transport!

Oh my goodness, we were scared to death bringing Toby home.  We were beginning a new normal that not only included all of his medical equipment: ventilator, oxygen, suction machines, feeding pump, nebulizer, concentrator, and ambu-bags, it also included all the supplies that go with those items.  Another part of this  was adjusting to having strangers in our home: private duty nurses, physical, occupational and speech therapy, respiratory therapists, nursing supervisors, case workers from the county, and the list goes on and on.  They were there to help us care of him, but the chaos and lack of privacy really got to me at times.

Just a little picture of our home set up.

Our second night home, sleeping on Daddy.

The first nurse Toby had during day-shifts was truly sent from God.  She had experience with respiratory issues from her children being premature, and that really helped with Toby.  God truly used her to keep him out of the hospital that first year.  He was sick many times with urinary tract infections, respiratory infections, but not once was he hospitalized for any type of respiratory illness. Somehow, we always managed to take care of it at home.  She was proactive with breathing treatments and calling pulmonary for a steroid if his lungs sounded diminished.  She started putting him on his tummy within a few weeks of being released from the hospital, so he could strengthen his head, neck, shoulder, and tummy muscles.  He hated it!

It took some time for us to get into a routine, but the boys loved their little brother right away. One day when Toby's alarms were going off Conor said, "It's okay, Mom, the nurse will get it!"

A passage of scripture that I have clung to over and over, and I know I've shared it before on this blog, but it begs repeating is Psalm 40:1-3

"I waited patiently for the LORD; And He inclined to me and heard my cry.  He drew 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."

There have been many times that we have had to wait patiently to see how God was working.  While Toby was in the PICU, we were in a pit of destruction - the miry clay...sinking in sadness and despair, wondering if Toby would make it to his next breath.  He has drawn us up out of that pit many times, setting our feet upon the rock, and giving us a new song.  This song is different than before - changed - because we are different, we have changed.  I'm so thankful we have that new song to praise God for his faithfulness.  I always say, every morning God's grace and mercy pours out on my heart, so I can face a new day and take those firm steps of faith, that no matter what will come - He will be with us - every step of the way.

October 6th SB Awareness - Toby's Trach and a Big Decision

Toby was doing fairly well with his trach, but he would still have really long pauses in his breathing, especially when he was asleep:

He also got really puffy, and they had to put him on lasix to get rid of his extra fluids.

On February 12th, Toby had his fifth surgery in six weeks.  This time it was for a feeding tube or g-tube. We were really hoping he could be fed into his stomach, but...just when we thought things were becoming stable, curve ball after curve ball was thrown our way.  The night after g-tube surgery, he coded again around 2:00 a.m. - turned blue and gave his Grandma Holt quite a scare.  We still aren't sure what happened, but I rushed to the hospital right away, and they put him back on ventilator support.  A few days later, after a bolus (large amount) of milk into his g-tube, he began to act strangely - lethargic.  Fearful he had aspirated or had an infection, they ordered a bunch of labs, blood cultures, etc.  Only to discover his IV was gone, and after trying five times to put an IV in, they settled on a tiny one in his head.  This would hold them over until he could go back under for a PICC line.

Sometimes when you are living day in and day out in the ICU - you start to lose all sense of reality, and that was definitely the case for us. I just wanted some sense of normalcy - whatever "normal" might be.  God was continually asking me, "Do you trust me?"  "You know I trust you, Lord."  But, I certainly felt like Thomas, "I believe, please help my unbelief."  Josh Wilson released a song last year called "They Just Believe" that goes perfectly with that passage of scripture, and describes how we have often felt on this journey.  You can find it here.

At this point, the PICU doctors began to plan that Toby would be on a trach mask (see middle and right photos above) when he was awake, and just need the ventilator while sleeping.  On February 20th, Toby was FINALLY stable enough to move out of the ICU and to the step-down pulmonary floor.  We were ecstatic.  He had been in the PICU around a month, and it felt wonderful to have a room with a bathroom in it - and windows.  Oh yes, what are those?  (This was before hospital renovations)

This is one of my absolute favorite photos of Toby in the hospital. After many weeks of holding onto life by a thread, he began to do normal baby things, like sit in his bouncy seat.

Then, one of the hardest realities hit us square in the face.  After reviewing Toby's entire medical history thus far and his sleep study, the doctors felt that Toby needed to go home on a ventilator 24/7. It's wasn't completely unfamiliar because of being around Evan, but it was definitely not what we hoped for.  They said even when he was awake and breathing, his breaths weren't deep enough, and this put him at great risk for pneumonia.  What happened if he got sick?  He would end up right back in the hospital. When, the pulmonary fellow broke the news that day; I sat there and cried.  One thing that I have learned on this journey is when you are raising a child with special needs you live on a grief continuum.  In the beginning when you first learn the news you are in denial and angry...then the full force of grief hits - mourning the changes in your life, mourning what your child has lost. After awhile, healing comes and there's acceptance and you learn a new type of normal.  Then, you have those days when something changes, perhaps it's a surgery or another diagnosis.  Perhaps it's just watching all the other kids at the playground run around and play when your child can only watch - and the grief slaps you in the face again.  I have learned not to fight this cycle, but to roll with it.  I have learned that grieving through our circumstances brings healing and yes even joy.  I've also learned that when I hold it all inside, and I don't grieve - it will come back and bite me in the bum (as my kids like to say) and the littlest thing will send me sobbing to my room.

It's always interesting for me to see this picture of Toby - his little tiny body and that heavy ventilator tubing.  

Toby loved his pacifier very much!  He also loved sleeping with his arm out or over his head.

Finally, we began to make plans to bring our medically fragile bundle of joy home.  God was every faithful - with us every step of the way.  One Sunday morning, Bruce and I were able to attend church together and the choir sang this song:  "Bow the Knee"  I'll end today's post with the words (Click on song to hear it):
May the journey we are on encourage you to draw closer to God; He is all we need...He has been guiding us every step of the way.

Bow the Knee

There are moments on our journey following the Lord
where God illumines every step we take
There are times when circumstances make perfect sense to us as we try to understand each move He makes When the path grows dim and our questions have no answers turn to him

Chorus
Bow the Knee
Trust the heart of your Father
When the answer goes beyond what you can see
Bow the Knee
Lift your eyes towards Heaven
and believe the One who holds eternity
and when you don't understand, the purpose of His plan
in the presence of the king, Bow the Knee

Verse 2
There are days when clouds surround us and the rain begins to fall
the cold and lonely winds wont cease to blow
And there seems to be no reason for the suffering we feel
We are tempted to believe God does not know 
when the storms arise, don't forget we live by faith and not by sight