A Growing Boy

It has been several months since I've shared any updates here. Mostly that is because we've had a lovely summer and I have not been able to bring myself to sit and write boring updates. I love that life right now in medical land is pretty boring! We have been outside, gone to a Celtic festival, been swimming, visited the Columbus Ohio Temple grounds, had campfires, enjoyed the Renaissance festival, and just had a relaxed, family oriented summer.

Mason is learning and growing like a typical four year old (4 years 8 mos). He's opinionated, determined, and still shy around unfamiliar people. He loves to use his hands in things like playdoh and thinking putty. He sword fights with his brothers.

He bosses people around and does chores and laughs at jokes. He likes playing Minecraft. He loves to hold his sister's reptiles. This one is Mufasa, a bearded dragon.

He had Myelo clinic this summer and saw all his specialists. One giant good news we got was that his scoliosis has improved. The orthopedic surgeon was surprised but pleased. His curve is now only 13 degrees, very minor. As a matter of fact they would not prescribe bracing for someone who was presenting with a 13 degree curve. However, as Mason already has a brace we have the option of using it. Mason's skin is very sensitive and we've struggled to use the brace without rashes, eczema, and breakdown, but we're trying using it when his skin can handle it, and we're doing lots of play based physical therapy at home to keep building and strengthening the muscles in his core and back. Right now Mason has been dealing with a bout of eczema that even medicated creams are not healing completely.

He's waiting for an opening for PT to try out using a walker. It's just going to be another option during his standing time each day, it would not be practical for him outside the house for several reasons. For one, he can't actually use his hands to do anything (play!)when holding on to a walker. For another, he can't bend over to pick up anything because of the bracing he has to use. This week Mason will get new HKAFOs (standing braces) because he outgrew the old ones. I'm slightly nervous because we made some changes but we think he's ready for less support at the hips, so he's moving from a plastic back piece and belt to a leather belted area. We'll see how it goes.

Today Mason got new glasses. These are the first pair he's had since his double eye surgery several months ago. Now that the healing is officially over his vision has improved. He does still have double vision without glasses as his eyes turn in, but glasses can correct that turn now - without bifocals. This is a large improvement because before his glasses could no longer compensate even with a strong prescription and bifocals.

He also had a urodynamics test (bladder pressure test) today. It was the first one since his medication dose change months ago. He passed with flying colors and the increased dose of medication has improved his bladder pressure. Basically, that means his bladder is paralyzed well enough that it can hold a normal amount of urine without spasms. Spasms are bad because they thicken the bladder wall and can cause reflux into his kidneys, damaging them.

Five years ago when we first learned of Mason's diagnosis before birth I couldn't picture what his life would be like. I just had no idea. While he has had more than his share of surgeries already (18), comes with a few daily medical requirements, and has more than the usual number of appointments, on the whole he is a typical little boy. It's a joy to be his mother!

New Glasses Time!

Mason's new glasses are in!  This time he chose black frames.  He is also sporting bifocal lenses.  So far he doesn't seem to mind the bifocals so I'm hopeful that he'll adjust to using them with no problems.

We are also having new lenses put in his orange frames so those are away being done now that we have the black ones in.  Then he'll just get to choose which color glasses to wear each day when he gets up.

He is handsome as usual!

Enema Updates - A New Setup

Life quickly becomes routine even when there are special needs involved.  For nearly 2 years we have done a cone enema every single night with Mason.  He simply doesn't poop (neurogenic bowels that are pretty bad) so in combination with paying attention to how much fluid he drinks, what foods he is eating, and taking Miralax daily, we also have to do an enema. 

If you really want to understand how huge this update is then please take a moment to remember what our enema routine has been. 

We use a cone enema because Mason’s anus is really weak and doesn’t hold fluid in well.  So what you’re looking at is a bag to hold fluid, a tube, and a white cone on the end of the tube.  We use water and mineral oil currently for the fluid.
There is a lock that slides open and shut to control the flow of the solution.  The cone keeps things from coming out.  Why is that important?  Well, we want the fluid to have time to go up through the whole colon.  The cone mostly keeps Mason’s bottom from leaking.    
The process takes time and will take longer the older he gets.  For nearly two years we've laid Mason on his side on a towel right outside our tiny bathroom.  We hang the bag inside the bathroom on a hook.  Then we put just part of the cone tip into his bottom and hold it there.  Open the lock and let the fluid in, then close the lock and wait, holding that cone in place.  Our wait time is about 10-15 minutes.  During this time we need to keep Mason happy laying on his side, and we have to keep holding the cone in place.  It’s a good thing he’s so easygoing!  This has become a special tv time for Mason.  He can choose a cartoon to watch on the Kindle Fire while he's laying here. 
When our timer beeps we remove the cone and move quickly to the toilet.  That means standing up, picking Mason up, and setting him on the toilet. It is sometimes a very messy moment...ahem.  We need to keep Mason on the toilet until he poops.  (Isn't that a cute photo?  It's from a year ago!)  When he is older he will learn to use his abdominal muscles to try to bear down.  For now the most effective ways to get him to engage that abdomen are:

• Laughing like crazy.
• Coughing
• Crying

Mason is finally at a point where he'll cough at us when we ask - which we do on and off while sitting on the potty.  The other thing he does on the potty is play games with us or continue watching a show, taking breaks to cough.  This part of the process takes between 20 and 40 minutes, making our enema routine about an hour long every single night.

Another challenge is that Mason doesn't have the balance to sit on here safely on his own.  Daddy or I sit on a low stool right in front of him and hold on to him.  It's pretty awkward because of the small bathroom (there is a sink right behind you) and it gets more awkward when you add in the fact that I'm pregnant and growing rapidly.

NOW you can understand why today's change is going to be wonderful on several fronts.  Here is our new setup:

 

We bought this Drive Medical Folding Bedside Commode on Amazon and it arrived today.  We put it together and left off the bucket that would normally act as the toilet bowel.  Then we adjusted the seat so it sits a few inches above our actual toilet seat.  Why?  Because that way I can slip my hand in between the actual toilet and Mason's bum up on the new seat (with our soft potty insert on the gray seat).  I hold the cone in while Mason is already sitting on the toilet!  It is a little messy when I take the cone out, but not as messy as it was lifting him off the floor and carrying him over to the toilet like we had been doing.  No more transferring from the floor to the toilet! 

Other wonderful things about our new setup:

• The arms!  This folding toilet setup has armrests that Mason can use when he's feeling unsteady.  If he tips to the side he catches himself on the armrests.  It's a beautiful thing.
• I can sit on a taller stool, making it a more comfortable process for me or another adult to do. 

 

 

An enema is one more thing that *needs* done in our life. We have to be home for at least an hour every single evening to do the enema.  We also have the every four hours cathing schedule (8am, 12 noon, 4pm, 8pm, 12 midnight).  Then we have physical therapy and stretches to do several times a day.  Oh, and his medication needs done twice a day (8am and 8pm).  Add in cooking and mealtimes, playing, homeschooling siblings, cleaning the house, and life in general and you can see why we live by a routine.  We have to!!!  However it IS routine for us.  This is just normal everyday life now and feels that way.

Oh, and if you made it this far did you notice Mason's new black glasses?  I'll post about those soon.

Myelo Clinic Today

Today was Mason's full team appointment at Myelo clinic.  Every 6 months he has this long day of checkups and testing to keep track of how he is doing in a variety of areas.  I thought I would share a few of the highlights for those who are wondering how he is doing at age 3. 

Developmental Pediatrics - According to this doctor Mason is doing great in overall development (outside of those pesky physical milestones like walking that he'll never accomplish).  He's speaking, figuring, sitting, playing, and progressing.  Yay!

Physical Medicine, Physical Therapy, Orthotist, Wheelchair Fitting, and Orthopedic Surgeon - I'll cover these three together because they are interrelated in some ways.  We came to clinic with all Mason's equipment (wheelchair, AFOs, stander, HKAFOs) and some questions. 

1. How can we help Mason learn a safe way to climb down to the floor from his wheelchair?  Currently, if he climbs down by scooting forward onto his footplate and then to the floor he scrapes his back (right across the large scar where his back was open at birth).  This is bad.  So between the specialists the current plan is two-fold.  First, we'll work on teaching Mason to turn around in his seat and climb down backward like he does climbing down the stairs.  The difficulty is maneuvering the lower half of his body into the right path (because he can't feel anything) and not hurting his knees when they come down onto that hard footplate.  We'll work on it at home and then if we can't get a good climbing pattern figured out we can access physical therapy for some help.  The second part of the plan is that our wheelchair company is creating a padded footplate for Mason's wheelchair so it won't be so hard on his knees or back when climbing down.  We have to be careful that it doesn't interfere with his ability to climb UP though. 
2. Do we need to add a heel/wedge to Mason's HKAFOs or one shoe?  His legs are not even when in a standing position, partially due to the small contracture of his left knee from the large callus that femur made when he broke the leg last fall.  Partially it is due to his hips, which are a bit unevenly seated in their sockets as well.  What this means is when Mason uses the HKAFOs in his stander he still gets a red pressure mark on that thigh that no matter how many times we've adjusted the HKAFOs we can't get rid of.  This limits his time standing.  The standing is part of our treatment of his osteoporosis, helps his bowels function better, etc.  We really need the standing and would like to be able to do it for 2+ hours per day.  Right now we've only been able to do about 30 minutes at a time before the pressure happens.  The current plan is to try adding the insoles back to one shoe to see if it helps.  We can call the orthotist to get a heel added to things if this isn't effective.

Occupational Therapy - Mason passed all of this with flying colors.  Basically she evaluates fine motor control and feeding difficulties.  He colors, draws, stacks blocks, threads large beads on string, etc.  I knew he was fine in this area already. 

Urology - Today Mason had ultrasound done to check his bladder and kidneys. The scans showed that they are stable - which means what we're doing is working.  We continue with his current medication and catheterization schedule.  We also discussed enema options with urology.  What we are doing is working well (cone enema).  That is great.  However in the future we know we want to transition to a different enema setup that is more independent for Mason to do himself.  They referred us to the Colorectal specialists to begin that evaluation and process.  (For those in the know, we're looking at the Peristeen system. Many people around the country travel to Cincinnati Children's Hospital for their week long program but we're blessed that one of the main doctors from that program is now heading things up at our hospital. ) 

Mason busy making friends.

Orthopedic Surgeon - Yes, this is the second time I'm mentioning this doctor.  Why?  Because we have a separate issue that we will be watching with just them.  Today they sent Mason for spinal x-rays to check the curvature on his spine.  Developing scoliosis is something that in not uncommon with Spina Bifida, especially with Mason's level of paralysis (incomplete T12).  Today we saw that he does have a curvature beginning but it is below 10 degrees so it is called Mild Spinal Asymmetry.  If it increases to more than 10 degrees it will be scoliosis.  For now we will track this every 6 months.  If the time comes that his curve increases we have a variety of treatments depending on how severe the curve becomes (from bracing to spinal surgeries like a fusion or having rods placed). 

Well, those are the major things from today! Next week he has his vision checkup with his developmental ophthalmologist.  He's hoping to choose new glasses - I'm wondering if he'll try a different color. Overall Mason is a happy, growing little boy who is busy enjoying life.

Wheelies, Picking up Toys, and a Video

How about some Mason updates? 
My cutie pie is growing and learning new things on his own schedule.  The newest skill is likely to give me gray hairs - wheelies. 

That's right, Mason is a little daredevil.  We've raised his anti-tip bars to accommodate his wheelie fun so he can tip further back. 

While these pictures are cute, wouldn't you like to see a video?  Mason was happy to do one this morning.  Enjoy!



I also had someone ask about if Mason can pick things up from the floor when in his wheelchair.  The answer is it depends!  If he has his tray on the wheelchair he cannot reach anything on the floor.  However when the tray is off he can lean down to grab things so long as they are not flat on the floor.  So a toy car would be easier to pick up than a piece of paper. 

 He was feeling extra cooperative this morning when I got the camera out so I got a few pictures of him picking up toys from the floor. 

Here is the first toy pickup.  It was pretty easy, a Duplo tree that is a few inches tall.

The second was a Duplo train piece, shorter to the floor and therefore harder to reach.  As you can see, he is able to reach to the floor, thank goodness for seatbelts!  He uses his wheel or armrest with the hand not holding the toy to help sit back up because his core is not quite strong enough to do it without one hand helping.  We're working on those muscles!

Does Spina Bifida Cause Bone Density Issues? A Reader Question

I had an anonymous question on my last post that I really wanted to answer.  It was asked:

Is low bone density a side effect of Spina Bifida?  If so, why?

That is a great question!  Low Bone Density is not an automatic side effect of Spina Bifida.  However Spina Bifida is part of what has contributed to Mason's!  Because of the extent of Mason's paralysis from Spina Bifida he cannot stand or bear weight on his legs at all.  One large factor in strengthening a bone's density is USING the bone, applying weight and pressure to it. 

To combat that the plan has always been to use HKAFOs (standing braces) and a dynamic stander that holds Mason's legs straight and holds him in an upright position that would place pressure on his leg bones.  It was to be a therapeutic, several hours daily practice.  We started that process when he was a year old. Here is a post about Mason getting HKAFOs with pictures.  Here is a video of Mason learning to use the Dynamic stander.  He was 13 months old for both of those.

Unfortunately at 18 months old Mason's tethered spinal cord became symptomatic.  Over a 4 week growth spurt the stretching of the cord caused contractures in both of Mason's hips and feet.  They no longer went into a normal standing straight position.  That meant he could not wear his HKAFOs to use his stander.

What should have been quickly addressed with a tethered cord release was not.  He developed a sacral ulcer that same month that took 8 months to heal.  Until that was healed the surgeon could not do the tethered cord release.  8 months without standing or bearing any weight.  Then, once the detethering was complete and Mason healed we found that only one side of the body's contractures resolved themselves.  The right hip and foot needed tendons surgically released.  That happened this past August, at the 13 month mark of not being able to use equipment to stand.  That is over a year and in Mason's case that was enough time for the bone density to be lost and the bones to weaken.  Following that surgery he had the two month saga of casts and two broken legs from those casts. 

That brings us to today!  It is a really great illustration of how complex God created our bodies and how changes in one area affect so many others. We have seen this in so many ways with Mason.  One area affects another and what seems to be a single skill or ability is actually the interplay of myriad body parts and systems.  Imbalance in one area dominoes out to affect others. 

There are other factors that can go into osteoporosis (which is what Mason's bone density issue is called).  A lack of certain vitamins or minerals can affect the body's ability to build strong bones.  For example the body needs calcium, potassium, and Vitamin D available to build and strengthen bones.  Which is why our nephrologist has done a full blood panel on Mason to check his vitamin and mineral levels as well.  We should get those results next week. 

Thank you Anonymous for the question!

Bathroom Issues Part 1: We're talking pee!

 

It is still October and that means it is still Spina Bifida Awareness month! This week I'm sharing a bit about bathroom issues. Today we're talking pee!  Because Spina Bifida is a snowflake disability, where each person is affected uniquely, let me start by sharing how SB affects Mason's bladder.  He has what is called a neurogenic bladder.  In essence, his nerves do not send accurate signals to or from these areas. 

For the bladder this means frequent spasms that thicken the bladder wall making a small bladder capacity and risking urine refluxing backward into his kidneys.  This reflux can permanently damage the kidneys. (If your kidneys are too damaged you either need a transplant or you die.) Mason's body does not feel when he needs to pee and he has no control of the peeing process (either peeing on purpose or holding it to get to a bathroom).  This will not change as he grows up.

Right now Mason is on a bladder medication called Ditropan to stop the spasms.  It has some side effects, including dry mouth, lack of sweating, and easily overheating.  The medication paralyzes his bladder to stop the spasms, which keeps the wall from thickening. 

We need to catheterize him regularly to empty his bladder now.  Based on measuring the volume of urine he holds, pressure in the bladder at different volumes, etc, we currently cath Mason every four hours: 8am, 12pm, 4pm, 8pm, 12 midnight.  Mason gets a break from midnight to 8am (yes, we get up at midnight every single night to cath him.)  He usually stays pretty dry between cathing.  If he laughs a lot or cries a lot around the time he is due to be cathed he will leak.  He wears diapers and will continue for the foreseeable future. 

Mason has already begun to take an interest in taking over his own cathing.  Right now that means he likes to help hold the catheter once it is in place and he helps remove the catheter when the bladder is empty.  Around age 5 or 6 he should be able to cath from start to finish independently.

A Bit of Back Story:

I remember the first week home from the NICU with Mason.  Cathing was so hard that I cried nearly every time.  I had this squirmy baby who wanted to be anywhere but laying on his healing back surgery and head incision from his first shunt, I was recovering from my own major surgery and dealing with postpartum hormone changes, and cathing an uncircumcised little boy posed its own challenges. Doctors were not willing to consider circumcision until Mason was several months old, had been evaluated by the urologist, and was healed from the major surgeries he had already been through.  I remember crying and thinking I would never figure this out.  Now I can laugh at it.  A little practice and cathing became our new normal.  Not only can Daddy and I cath him, we've taught two other people as backup (Grandma and big sister Makayla). 

That's all for today!  If you have any questions related to Spina Bifida feel free to leave a comment and I might just feature it in a post this month!

Happy Shuntiversary Mason!

In the Spina Bifida and Hydrocephalus world you celebrate some unusual holidays. Today is Mason's Shuntiversary!  One year ago today the shunt in Mason's brain was fixed for the sixth time.  Pictures from the next morning are here.  He was not even two years old and had gone through more shunt revisions than anyone close to his age that we knew.  Every shunt revision is a brain surgery. 

 

The shunt is simply tubing and a valve.  It's job is to siphon off the extra fluid from the ventricles pf the brain when the pressure gets to high, draining it down into Mason's abdomen where the fluid can be reabsorbed.  You see, Mason's brain isn't positioned normally in his skull.  It actually grew pulled toward the back, with the bottom of it down in his neck vertebrae.  His goes down to C3.  It gets in the way of the fluid that should be draining down the spinal cord.  This is called Chiari II Malformation.  Mason's Chiari is currently asymptomatic, not causing any symptoms, which is a huge blessing.  When children have problems with their Chiari they face things like breathing and swallowing issues, among other things.  (I know you're wondering if Mason could develop symptoms - yes.  It is possible.  We pray he never does, but as he grows there is a chance he could become symptomatic and need surgery to remove part of his skull and neck vertebrae.)

 

Back to the shunt - we're grateful for it. Without it Mason would die as the pressure built up in his skull and damaged his brain.  Today, for the first time, Mason has had a working shunt for an entire year!  Will this be the first October of his life to NOT have brain surgery?  I'm praying it is!

More Questions: Therapy and Educational Options

 

Time for another reader question to raise awareness for Spina Bifida! 

"What are your plans for school?  Will the school district help with Mason's therapies and equipment?"

This is something we've been talking about recently.  Mason receives his physical therapy through the Help Me Grow program right now.  Once a month they come to our home, show us what to work with Mason on, and answer our questions.  Then they leave us to do the day to day work ourselves.  When he turns 3 in January he will no longer be eligible for the program. 

We've had our very first discussions with Help Me Grow about transitioning Mason out of their program and more discussions are on the horizon.  They were shocked that we would not consider sending Mason to preschool so we could take advantage of free physical therapy and get him started on academics.  To be honest, this did not surprise me.  In our area it is unusual for any child not to attend preschool, but more so if your child could be doing speech, physical, or occupational therapy.  The entire Help Me Grow program is structured to make a seamless transition for the child from their program into the public school preschool programs.  As a homeschooling family we have not chosen to send our children out to a preschool program or to a public school for their education. 

For Mason this means two things.  First, we will seek out private physical therapy when needed.  We could drop him off at the school for therapy each week but we would not be welcome to participate nor would the school want us there.  To them we are a distraction. We prefer to know the exercises and activities the therapist does so that we can include them in our daily routine at home. Which is more effective?  1-2 hours of physical therapy a week or a daily physical therapy routine?  Obviously, the consistent daily effort is more effective.  Our plan is to seek a physical therapy provider who will help us develop a daily program addressing Mason's needs, then evaluate and adapt it as needed.

Mason's needs change.  Right now he cannot climb up the stairs.  Two months of wearing casts and not being allowed to climb has left Mason weaker.  A hip surgery has left him needing to learn new ways to climb as his leg now works differently.  Once a week therapy is the least effective way for Mason to regain the strength he needs.  One hour a week of helping him with a new climbing pattern will be ineffective.  He needs a daily workout, encouragement, and help practicing new climbing patterns.  We can do that at home!  Putting him in preschool isn't effective as he would still only have one hour at most of physical therapy a week.  The rest of the time he would be restricted to his wheelchair to do 'school work', exactly the opposite of what his body needs.

The original questioner also wondered about equipment.  The school district would not help with the cost of any equipment for Mason. We have to pay for equipment ourselves if insurance does not cover it.

The second aspect of the school question is the academics.  If you've read my other blog, Our Busy Homeschool, you have seen the rich opportunity homeschooling offers.  I know that homeschooling is the best option for our family.  Learning is a natural part of life and we treat it as such.  We do not believe that the 'one size fits all' educational model in our country is as effective as the personalized tutorial education homeschooling offers.  I truly think each family needs to do what works for them - be that private, public, or home education.  I'm grateful to live in a country where each family has options in the educational arena and the freedom to pursue them! 

Have you been enjoying these posts where I answer reader questions? If you have any questions related to Spina Bifida and it's effects on the whole family just ask! 

How Does Mason Handle So Many Appointments?

Today's reader question for Spina Bifida Awareness month:

How does Mason do with all the doctor's visits and therapies? 

He's cheerful!  As a matter of fact I whine and complain more about it then he ever does.  The hour drive each way is my least favorite part of appointments.  Sitting in waiting rooms, dealing with medical professionals and having to explain his medical history yet again, having students or residents who think they know more than mom - it all drives me batty.  Mason wheels through it all with a smile on his face.

He is wary of strangers, especially if they speak loudly.  He isn't a fan of male doctors and nurses unless he knows them well.  This wariness spills over into everyday life.  If you see us out and about at church or elsewhere Mason will probably be silent and ignore your attempts to talk with him.  He'll wheel away if you come too close while you are talking to him.  It is quite a difference from life at home where he talks non-stop, asks questions, and tells people what to do.  As I type this he's saying the following to daddy (I'm typing his exact words):

"You use that screwdriver fix mouse?  Mommy, Daddy need that screwdriver fix his mouse.  What this?  Batteries?  I going to charge this.  Daddy we need this battery.  I can't open it.  We need scissors."

Seriously, the boy didn't say two words when he turned 2 years old in January and now he speaks paragraphs at a time.  But have a stranger talk to him and he'll clam up.  Once he gets comfortable he'll talk again but it takes a while and it helps if you talk quietly to him.

We try to do a few things to help smooth this medical appointments roller coaster. 

1. Music and audio books in the van. Mason likes music and enjoys listening to stories.  He's easy in the van which is a total blessing.
2. Things to look forward to.  We talk about what we'll do, who we'll see, or where we're going.  For example today was, "We're going to take pictures with your Curious George toy and get stickers."  That would be the x-ray for the bone density scan.  This Friday we'll talk about seeing Margaret, our nurse coordinator at Myelo Clinic, and walking to see the fish tank at the hospital. 
3. Food and drinks.  We ALWAYS pack a cooler with snacks, a meal, and drinks.  Even a quick appointment of 45 minutes has us gone from home nearly 3 hours with the driving.  Our average appointment is 4.5 hours out of the house but the many cast change appointments in the last two months averaged 5.5 hours each.  Mason and Mommy bring food so we're always able to snack during long waits or on the drive home. 
4. Paper, pen, and playdough.  We bring along a small baggie of things to do but these three almost always are Mason's top choices. 
5. Kindle Fire with videos.  We have a Kindle Fire just for Mason.  He uses it each night during his hour long enema.  He also brings it along to appointments.  The only rule right now is he doesn't use it on the drive, it is used when we are actually at the appointment.  He occasionally paints on a free app, but usually he just turns on a video to watch. 

Will Mason always be this easy going about his many doctor's appointments?  We will have to wait and see!

How Does Having a Child with a Disability Affect a Marriage?

Time for another reader question to help raise awareness of Spina Bifida's effects on the entire family!  Today's question is:

How has having a child with a disability affected your marriage? 

Before having Mason I had no idea of the far-reaching effects a child's medical needs could cause.  The incidence of divorce in the United States is crazy-high and when you add in caring for a child with medical disabilities divorce becomes even more common.  Why?  Stress, money issues, lack of time - those predictors of divorce - are multiplied when you add in the child's medical care.  I know my own situation is not unique! I can sum it up in three words:

Stress - We have all the usual stressors but add in worries about Mason's health, surgeries, post-operative care, physical therapy needs, medications, equipment, changes in function, and so on.  We can let these stresses overwhelm us or we can choose to focus on them as a team.  My husband Jason is the one who works full time outside the home.  Despite that, when he is home he is fantastic about being part of family life with all our children, including Mason and his medical needs.  He diapers, cleans the house, catheterizes, does Mason's enema, lifts, carries, plays, and is a wonderful husband and father. 

What I have to be sure of is that I keep him in the loop of any medical changes.  He rarely goes to any of Mason's medical appointments because if he's not working he's the parent holding down the fort with the seven other children while I go and focus on the doctor's visit.  He also isn't home many evenings when Mason's enema happens.  As we adjust Mason's Miralax dose every day based on how the poop is coming out (or isn't!) I have to keep him up to date on that. 

I also have to be careful not to dump all care responsibility on my husband the moment he walks in the door from work.  Yes, I've been juggling homeschooling, medical care, eight children, cooking, and housework all day every day.  He, on the other hand, braves the world to work hard at a job that he doesn't love in places that are not always the best areas from long before the sun rises often not returning until the sun has set.  I am so grateful for him!  I try not to think of him coming home as my time 'off' Mason care.  Yes, he can pitch in, but I try not to dump it all on him and hide in the bathroom for the rest of the night.  ;) 

Money Issues - As a single income large family money is always tight.  Add in the gas money to get to and from many medical appointments, cost of medical supplies, special foods (allergies), cost of medical equipment, diapers, and more when raising a child with medical needs and money can be spent on paper long before it makes it to the bank account.  Here, too, we can face money issues as a team or argue over it.  As much as possible we try to check with each other before making any unexpected purchases, we stay in touch with bill paying and budgeting, and we try to find inexpensive ways to have fun.

Lack of Time - This area may well be the most difficult in some ways!  We need to spend time together to keep our relationship strong and thriving.  Some of this time can be working together, sure, but to keep our relationship alive we need time to relax together, talk together, etc.  Due to his work schedule many nights he goes to bed before the children and gets up around 3:00am to start his workday, so going to bed at the same time doesn't happen often.

For the last two months we were not even sleeping in the same room because of Mason's medical needs.  While he had his casts on doctors required him to sleep on his back.  No rolling around into weird contortions, especially once they realized how breakable his leg bones were.  So Mommy slept beside Mason for two months.  Not a great way to strengthen a marriage...

Knowing this, we both had to make deliberate efforts to find times to connect.  Some days that was making children move to different seats at the table so we could sit beside each other at meals.  Or it was staying up late when he was able so we could snuggle up on the couch and talk. Or other things.  ;)  It was keeping outside commitments to a minimum so when we could be together, we were.

 

 It was grossing the kids out by kissing often.  It was listening to each other's day and sympathizing with the hard parts.  Or sending a spouse to take a much needed nap. 

Marriage takes hard work but it is worth it!  Selflessness, love, patience, and working together all keep our relationship thriving.  Be sure to share your tips for keeping your marriage healthy in the comments, along with any questions you have for me.

You Asked... Sibling Relationships

We're raising awareness of Spina Bifida's impact on the whole family this month by answering YOUR questions!   A friend on Facebook wanted to know the following:

Do you feel there is more /less /different sibling dynamics with him? Do your other children feel left out and/or over protective of Mason. I'm curious how the relationships have changed among the kiddos.  - Diana

These are great questions!  By the end of this month my children will be 13, 10, 8, 7, 5, 3, 2, 1, with Mason being the 2 year old.  I think that being the mother of a large number of children works in my favor here because I can see that each of my children has a different relationship with one another.  For example my 5 year old son Oliver and his 3 year old brother Caleb are buddies.  They play together more often than they play with any other sibling.  Daniel and Joseph (age 7 and 10) are another pair that spend a lot of time together because they both love building with Legos.  Emma age 8 is more an equal opportunity sibling.  She likes playing with the little boys in silly toddler and preschool ways but will then turn around and draw with the 13 year old Makayla.  Mason has a special relationship with his oldest sister Makayla but he is an equal opportunity buddy and will happily play with each sibling. 

 

Do my other children feel left out because of all Mason's appointments and care?  Not generally.  We try to include them when they are interested.  Sometimes they choose to come to appointments.  Other times they help play with him during the hour long nightly enema or participate in his physical therapy games.  When he's recovering from surgery and not allowed to crawl around they'll bring special games or toys to the couch to play with him.  We approach it with a "we all have different things we need and we're a family so we work together to meet those needs" mentality. 

Sometimes my other children do get a little overprotective of Mason, usually when he's just had a surgery.  They're very conscious of any restrictions he's under, like not crawling when wearing casts, and help keep him still.  They offer to carry him or push his wheelchair more than he needs, so we have had to work on having them wait for Mason to ask for help.  On the flip side they are aware of times when Mason wants to participate with a group and they find a way to make it work.  They may carry him upstairs or bring their friends downstairs where he is. 

 

I think my children's relationships have been influenced more by being a large family with many siblings than by having a sibling with a disability and medical needs. 

 

I've received several more questions I plan to answer here over the month of October.  If you think of anything you're curious about just ask! 

Your Questions: How We Handle Accessibility Issues

 I've had some great questions about Spina Bifida as it impacts our family!

Q: How does he (and you) deal with inaccessible places?

A:  This has a range.  Some places are not accessible to get into.  For example our local nature center is in the basement level of a building.  There are no elevators.  It is two flights of stairs to get down there.  It ends up being one of the easier accessibility problems.  We went on Monday as a family.  Daddy carried the wheelchair down the stairs while Mommy carried Mason down the stairs.  Then he went into the wheelchair to explore the rooms, and eventually onto the floor too, playing with some of the toys. 

Other places are not accessible for a wheelchair throughout most of the area.  We have an upcoming trip to the pumpkin patch/farm.  They have an enormous play area outside spanning the fields and barns. First obstacle?  Huge hill down (with steps cut into the hill).  Second obstacle - maneuvering a wheelchair on grass/ uneven ground/smaller hills.  Third obstacle - corn maze (they simply roller over the corn plants when forming the maze, so the ground is nearly impossible for even an adult to push Mason's wheelchair through.)  Fourth obstacle - Mason can't climb onto ANY of the play equipment, unless they've changed some things. 

How will we handle it?  Some areas we'll carry Mason, lift him up out of the wheelchair onto play equipment, etc.  Other areas we'll help push him (ex: in the grass) when he wants us to.  The corn maze?  I'll be wearing him in the Ergo carrier.  Some activities he'll need held high enough to participate, like rubber ducky races in troughs.

 It's a very physically demanding day when we visit inaccessible places.  Going on the trails at the arboretum is like this.  We can sometimes push the wheelchair over trails, while other times we're deep in the woods going over roots and up hills so someone carries Mason.  We take things as the come and try to stay flexible. 

Mason is not yet 3 years old.  There will be many more encounters like this to navigate as he grows up.  I have already started noticing them.  For example:

•  When I went to Cub Scout Day Camp one day this summer with Joseph I saw the many places I'll need to be able to lift and carry Mason to get him into or out of the area for an activity when he's 8-11 years old.
• Going to visit someone's house and realizing their doors are accessed only by stairs so we need to carry Mason in the house AND carry his wheelchair. 
• Then once we are inside I realize the house doesn't have wide enough spaces for him to use his wheelchair, or is a split level with steps up and down in many places inside.  He'll have to crawl, which at age 2 isn't so unusual, but when he's and 8, 12, or 16 year old crawling around it will be unusual. 
• Watching young men pass the sacrament trays and wondering how Mason will do that and wheel around at the same time.  (I'm sure he will figure it out, it's just another thing).  Of course, our young men are sitting up on the stand for the beginning of the meeting, which is up several steps and has no ramp, so Mason can't get up or down anyway. 
• When the youth group plans an activity away from the church (my oldest attends now, you have to be at least 12) and not only is the place their going semi-inaccessible (outdoors at a farm) but the leaders don't have room for a wheelchair in their vehicles, aren't used to lifting a teen in and out of a vehicle or wheelchair, and the activities are things like mechanical bull riding which Mason wouldn't be able to do because he can't climb onto OR grip the bull with his legs.  Falling off would be certain and he would be likely to break a bone or two in his legs because he couldn't control his limbs in the fall.  (I could list a lot more youth activities I've cringed at already, thinking about the accessibility...sigh.)

Accessibility is just one of the things you deal with when a wheelchair is part of the equation.  Like most things, we'll figure it out as we go along.  Our goal is to not let accessibility determine what places Mason can go.  If we need to do some lifting and carrying we will.  If Mason wants to participate and wheelchairs are not an option and that means he needs to crawl in the dirt we'll grab the knee pads and ignore the ruined clothing.  It's going to be an interesting adventure!

I'll be sharing answers to YOUR Spina Bifida questions all month long so if you have any be sure to leave them in a comment!

October is for Your Questions!

 

October is Spina Bifida Awareness Month, which, as you probably know, is near and dear to my heart.

This month to raise awareness of Spina Bifida I will be answering ANY and ALL of your questions about how SB affects Mason, my other children, my marriage, my extended family, and life in general. All you need to do is ASK. So leave a comment and start asking your questions!

October also holds a very bad trend in Mason's life and we'll hopefully celebrate a 'shuntiversary' this month marking 1 year since his last shunt revision.  Every October of his life Mason has had emergency brain surgery to replace a clogged shunt.  Can this October be different?  I'm praying that it will be!

3 Years Ago Doctors Dropped a Bomb

 

Three years ago today we heard words you never expect to hear at an ultrasound, "There's something wrong with your baby."  Three years ago we began a roller coaster of research and doctors and ultrasounds.  Within a week we had met with specialists who explained that our yet to be born son's spinal cord was sticking outside of his body (spina bifida), that it was just a matter of time before his brain developed too much fluid (hydrocephalus), that both his feet were bent and twisted (clubfeet).  Words like disabled, paralyzed, wheelchair, permanent brain damage, and abortion were thrown at us through the cloud of our grief and worry.  "I'm sorry," was repeated over and over by doctor after nurse after surgeon. 

I process things by writing and started this blog right away, keeping it private at first.  We began searching out a community of individuals who had traveled this path before us and discovered that few, if any, had blogged about the journey until their child was a few years old.  I resolved through my tears that I would share our ups, downs, fears, joys, and life online.  I had already been blogging for years about our family's homeschooling journey and beginning another blog was easy and familiar. It was one of the few familiar things during that time.

There were ups and downs during the rest of the pregnancy but an underlying feeling of peace.  We knew that God had created Mason and that this was no surprise to Him.  We loved and looked forward to holding our son and getting to know his personality.

 

Mason is now 2 years and 7 months old.  Our family has dived deep into the world of medical needs.  There have been surgeries, fourteen of them, mostly on his brain, but also some on back, legs, and even bottom.  We navigate the waters of appointments and medical equipment and insurance companies.  Some of the things we heard those very first days after diagnosis have come to pass but many more have not. 

You can look at the bare facts - paralyzed, wheelchair, disabled, will never walk, cannot live without the lifesaving brain shunt that has failed six times already, a lifetime of surgeries ahead.  Those paint a picture in gray that seems dark and sad and hopeless.  It is an incomplete picture, woefully inaccurate.

 

As you get to know my son Mason you begin to see a vibrant world painted with colors - joyful, smart, bossy, loving, determined, alive, thriving.  Mason is a child full of personality, a child who just happens to have some physical challenges.  Yes, they will shape him.  They have shaped our whole family to be more aware, more patient, more in awe of God's creation.  Mason tackles life head first, finding a way to do what he wants, painting his picture in broad strokes of color - especially orange.  He loves orange!

 

If doctors paint a grim, gray picture of your unborn child's life with Spina Bifida or other diagnosies - hold on to hope.  God's picture is so much brighter and awe-inspiring.  Your child is not broken, a mistake, an accident.  They are God's creation lovingly made.  He has a plan and a purpose for your child.  There will be hills and valleys along the way.  It will be the adventure of a lifetime!

Day 2: Feeling Better

Mason had surgery two days ago and is feeling much better today.  So much better that he's already belly crawling all over the floor, has figured out how to sit himself up despite the mermaid wrap on his legs, and is becoming quite annoyed with my reminders to lay down.  One thing he loved this morning was having a picnic breakfast. It worked much better to do this on the floor than on the couch. 

He played with playdoh for quite a while and I'm still finding bits of it on the floor. He also played upstairs in the bedroom with some of his siblings but it's harder to belly crawl on the carpet up there. 

Today's quandary: How can I protect his toes from the floor when he's on his belly playing and eating?  They stick out the ends of the casts and they way the brace holds him they point straight down to the floor.  Then he moves with his arms and they are dragged, bent, and scraped along awkwardly.  Of course he can't feel it at all, so he doesn't know if he's hurting them or not.  I tried putting socks on but really they don't provide much in the way of padding.  We'll play around with it.  I also have tried rolling up a towel or blanket under his ankles when he's just laying in one general spot eating, drawing, or playing with playdoh.  It even slides along with him for a bit on the wood floors, but not at all on the carpets. 

Mason is napping right now, which is why I can blog for a bit.  He has asked for his wheelchair 8 times so far.    

Happy Birthday Mason! 2 Years Old!

How quickly time flies!  Today Mason turns 2 years old.  I have walked down memory lane this week remembering this beautiful, messy, unpredictable journey.  Last year I shared what I would say to the doctors during my pregnancy with Mason.  In just one year's time so much has happened.

 

This year Mason got his first pediatric wheelchair and truly mastered it.  He uses it most outside the home at church, the hospital, and such.  He does use his wheelchair at home part of each day and enjoys the added height for getting into things he can't reach otherwise. 

 

Mason has had five more surgeries this year, bringing his total to eleven so far.  They have been a variety, from shunt revision to smoothing out his back scar, to closing a pressure sore - and reclosing it.  Mason is patient and cheerful no matter what the doctors do and frequently charms the nurses with his smile. 

 

Mason went from drinking formula to finally eating solids.  It was a slow, uphill climb but now he uses a fork and spoon and actually chews food.  I'm so glad the oral aversions he struggled with have passed!  He is still pretty selective in what he eats.  He loves fruit and grain, tolerates veggies, loves green smoothies, and is not a fan of meat most of the time. 

 

 

Mason has learned many new skills this year.  While he still crawls on his belly, and always will, he can sit up unsupported now, play with two hands while sitting, and climb entire flights of stairs.  He still uses his hands to balance when sitting some of the time and is just barely able to tip a sippy cup up to drink while sitting now, with breaks to balance again.  He loves to draw, color, write, and do anything with pens, pencils, markers, and paint. 

 

Mason is slow to talk but quick to understand.  He is only using single word sentences, similar to a few of his older brothers at the same age.  At the same time you can give him two step directions and he follows them easily. 

 

 

He is still a fighter, finding a way to do anything he wants.  He is also a bit of a comedian, making faces and laughing often.  He loves wholeheartedly, adores his siblings, and his favorite animals are squirrels and cats. 

 

It has not been an easy year.  I have learned and grown more than I believed possible.  There have been tears and worry, fear and many more unknowns.  We have unresolved medical issues that will be addressed in the coming weeks and months.  Despite that our day to day life is joyful and I love seeing the two year old Mason.  I look forward to another year of watching this little boy grow!

Fixing a Failed Surgery –The Plan for Now

Isn’t that a cute face?  I was trying to get Mason to look at the camera and he did for about two seconds.  His eyes kept drifting back to the Eye Spy Picture on the wall.  This was our room at Plastic Surgery today.  He had a lot of fun finding things in the picture, I just wish it had been placed lower on the wall so he could have touched it from his wheelchair.  It was actually higher than MY head standing up, which seemed especially weird for a children’s hospital. 

Our visit with Dr. P today went okay.  The cultures from the incision came back clean, with no bacteria or infection.  That is a wonderful thing.  According to Dr. P the incision looks pretty good for what we’re dealing with but it is still a bad thing to have happen.  (See what happened HERE if you missed that post.)

The plan is still a bit uncertain.  For the moment we continue daily bandage and packing changes.  In two weeks Mason has a checkup.  If Dr. P sees what he needs to then (some clearing out of the incision so it is not seeping so much) we might schedule surgery to attempt reclosure. 

Did you notice the words might and attempt?   

Spina Bifida patients with nerve damage like Mason has tend to be very slow healers.  His body doesn’t receive all the signals it needs to get things healing quickly and well.  So in a second reclosure Dr. P would use different techniques that will involve different sutures, long-term stitches, and some scarring.  The technique is similar to what is done with a gunshot wound to the abdomen.  And it may not work, it may reopen again. 

If things don’t look ready in 2 weeks we’ll keep packing the wound and changing bandages and check back later. 

If he does surgery and the incision reopens again we will have to go the slow route.  That involves continued packing and bandage changes for months as Mason’s body slowly heals from the inside out.  Probably 6 months at the minimum. 

In all honesty I’m praying and holding on to hope for surgery in 2 weeks.  I can’t think about what it would mean to keep doing this bandaging and packing long-term. 

Crazy Factoid: The Tegederm used to cover Mason’s packing and gauze costs $2.50 PER sheet.  1 sheet = 1 bandage change.  6 months of bandage changes equals $450.00.  That does not include other supplies like the packing strips and gauze, or extra bandage changes for messy bowel movements.  Thank heavens for insurance!

Myelo Clinic–Things Not on My Radar

Time to update again!  Mason had his team appointment in Myelo Clinic yesterday so we’re full of information, not all of it good.  Read on! 

First we’ll talk about the good.

Mason is doing great from a occupational therapy standpoint.  He uses his fingers and hands appropriately to manipulate things, stacks blocks, does puzzles, passes things hand to hand, etc.  With the obvious long-standing limitation that he does these things best when he’s strapped into his wheelchair or something that supports his sitting so he can use both hands and remain balanced. 

Urology took a look at Mason’s bladder and kidneys yesterday by ultrasound and they look beautiful.  The ditropan (medication to paralyze the bladder) and cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) is protecting those organs well.  No changes here.

Weight gain has finally been accomplished!  Mason had not gained any weight in over 6 months, sitting right at 24 lbs.  He’s now 24 lbs 11 oz.  Slow, but it’s something. 

Eating skills are progressing again.  After all Mason’s oral aversion issues around the brain surgery fiasco last fall and winter was (5 surgeries in 4 months) he is about where he should be with eating.  He uses a fork well, is figuring out a spoon, and finally closes his mouth to take bites about 75% of the time.  This shows itself in big ways like Mason actually taking bites of a bagel or other food instead of everything needing cut into bite size bits.

On to the not quite great but also not bad news:

Poop is still a work in progress.  We’ve been doing daily cone enemas for a month or so to clean Mason out and keep poop off his butt wound.  They work most of the time in combination with his Miralax.  We’ve reduced the Miralax drastically over the month to find a balance between soft enough for the enema to work and firm enough that he’s not pooping in between enemas and getting his wound dirty (infection risk).  It’s just a balancing game that varies daily based on what Mason has eaten and drank that day.

Wound Update!!!  He is healing S.L.O.W.L.Y.  He had some dead skin building up around the edges of the wound in calluses so he had debriding yesterday.  It sounds nicer than it is.  Basically they laid him on his belly and went to work with tweezers and a scalpel to cut off tissue.  Mason didn’t feel a thing, of course.  As a matter of fact his reaction was to fall asleep for his nap.  Yes, I’m serious.  They didn’t get all the calluses off but we’ll see how they’re doing in a few weeks.  Here’s a picture for those who have asked.  We’re to keep changing his bandage with every diaper change and continue limiting his sitting time in things like the booster seat at the table, his wheelchair, etc. 

The Bad

Now we come to the part of the visit I don’t want to think about.  The scary part.  You see, going in I had a page of questions and concerns.  It’s the only way to keep track of everything when seeing so many specialists in one day.  On my list was a reminder to let the orthopedic surgeon know Mason’s right foot/ankle and hip have had drastic changes in the last two months.  They have always been ‘tight’.  The hip is hard to straighten, the foot/ankle is hard to bend into a ‘flat’ position like when you are standing.  Which is why I do stretches and physical therapy several times a day with Mason. 

In the last two months it hasn’t mattered how diligent I was, we were seeing things regress.  We can no longer straighten his leg at the hip completely and cannot get his foot/ankle into a flat or neutral position.  That triggers a few problems, including not being able to fit/wear his HKAFO braces for standing, not being able to wear the foot brace at night without bruising, not able to wear any structured shoe, etc. 

We saw the physical therapist first.  She quickly told me I was right, there was a significant difference, and went to grab a few people.  Neurosurgery and orthopedic surgery.  WHAT?!  Neuro?  I knew that was not a good sign. 

The neurosurgery nurse asked me just two questions to start:

1. Has Mason had a significant growth spurt in the last few months?  Yes, he’s gained nearly 2 inches.
2. What changes have we seen in his body?  The ankle and hip contractures.

Then she said words that hadn’t even been on my radar.  “We’ll need to check for a tethered cord.”  My heart dropped into the floor.  I knew in theory that one day Mason might face that.  You see, when your spinal closure is done at birth the cord and nerves may begin to attach or tether to the scar.  A spinal cord is not stretchy.  Often when a child has a growth spurt their body stretches and the cord does not.  That causes neurological symptoms, and very often damages the spinal cord or nerves further. 

If Mason’s cord has tethered they will do a surgery where they try to separate the cord and nerves from the scar.  In the process there are very real risks that they will cause MORE damage to Mason’s nervous system.  In other words, he could come out of surgery with even more paralysis and problems.  For example, that hip function he has, the ability to pull up at the hip, could disappear.  The weak abdominal and back muscles we already fight to help him sit and balance could be made weaker or completely paralyzed.  I just don’t want to think about it. 

I’ve gotten comfortable with Mason’s disability.  Things like a wheelchair make me happy, they give him independence.  I’ve accepted what limitations he has and thrill to watch him push and make the most of what he can do.  A tethered cord could make us go through the process all over again with new levels of disability.  Loss of function.  Three little words that could change everything.  Again. 

What Comes Next

There is still a possibility that Mason’s cord is not tethered.  We may just be facing some leg surgeries to cut tendons, casts, and a lengthening process.  If I had to choose I would take that in a heartbeat.  Even if his cord is tethered we may end up needing those surgeries too, to stretch out and lengthen things that have pulled tight.

We expect to hear from the neurosurgeon Monday with a plan for a sedated MRI of Mason’s spine.  Under general anesthesia they’ll take a series of pictures and compare them to his baseline MRI done earlier.  They will look for changes and go from there. 

Another scary thing to think about is that a tethered cord can happen again.  And again.  And again.  And each time there is a risk of doing more damage. 

In My Head

How does this feel as a mother?  Terrifying.  Helpless.  Angry.  Peaceful.  Talk about a contradiction!  While I want to cry and shake my fist and pound on the doors of Heaven asking ‘why?’, when I look back at Mason’s life so far I have peace.  I always remember the very first priesthood blessing I had when we learned Mason would be born with Spina Bifida.  Here are my thoughts from the very first post on this blog:

“…the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk.”

I know none of this is a surprise to God.  He’s with Mason and He is with us on this winding, uphill climb.  The best part is that He never leaves us to climb alone.  We have the God of Heaven and the Savior of the World on our side.  He is strong when we are weak.  His atonement strengthens us to take one more step.   He gives us peace no matter the circumstances and he loves us through our tears, our anger, and our fear.  His mercies are new every morning.