Monday, October 20, 2014

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!

Thursday, October 9, 2014

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!

Wednesday, October 8, 2014

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! 

Tuesday, October 7, 2014

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!

Sunday, October 5, 2014

Side Effects From Surgery, Two Broken Legs, and Nearly Two Months of Casts

Mason has had his casts off for just over a week now so I thought a quick update post was due.  Life is returning to normal, or what passes for normal around here.  The coming week is full to the brim with medical appointments (20, fourteen of which are for Mason).  By Friday afternoon Mason will have had a renal ultrasound, bone density testing, and check-ins with every specialist he has other than his eye doctor.  The majority of those will be done in Myelo Clinic on Friday but the renal ultrasound and bone density scan are Monday morning. 

We have noticed a few unplanned side effects stemming from Mason's hip and heel surgery and subsequent two broken legs.  For nearly two months Mason was very limited in his movement, much of the time not allowed to crawl around at all. Changes are not that surprising when you remember that.

Side effect #1:  Mason's body is weaker.  He is no longer able to climb our flight of steps to go play upstairs.  He struggles with the one and two steps to get up onto the couch or landing.  It is hard to watch because he is getting frustrated and asks us to carry him upstairs.  I'm grateful that he has the words to ask for what he needs or wants.

Side effect #2: Mason has to learn to control his right leg all over again.  His right leg now flexes wonderfully at the hip which means he cannot use it in the same way.  The only voluntary movement he has is pulling up at the hip, not straightening it out.  Before surgery it would only flex so far which made it easy to wedge his leg under himself in the climbing process to get higher.  It didn't usually flop out from under him.  Now he needs to learn an entirely new pattern for climbing!  This is what we are working on together right now, in addition to some other general PT moves like push ups in his wheelchair and Mommy stretching his legs and feet at least 5 times each day while we wait for leg braces to be made.

Side effect #3:  Mason asks to watch cartoons often.  He could only do so much when stuck sitting or laying down for weeks on end and got into the habit of watching several cartoons on and off all day in between playing games, drawing, playdoh, and looking at books.  Now that he is mobile we've cut out the extra tv time.  The first day or two he was upset when his requests for a favorite show were met with "No."  Now he usually accepts it and moves off to play again. 

Side effect #4:  Mason's legs are different sizes.  This is a result of the large callus formed around the broken femur.  You can see it very well in this picture:

The difference is huge!  We have to pay attention to the pants we put him in to be sure they are loose enough for the large left thigh. There is also a difference in the size of his lower legs, with the larger one being the opposite leg where the broken tibia was.  That one formed a callus over the bone as well, just not quite so large a one.

As you can see, Mason still crawls using mainly his upper body strength and dragging his legs along behind him.  We have seen him begin to play around with getting his knees under him in a traditional crawling position and just sit like that, on hands and knees.  It's quite a workout and the least bit of movement causes one or both legs to slip out from under him. 

Mason is still our happy, slightly bossy, talkative boy.  He is 2 years and 8 months old and amazes me every day!  He is learning to share, to set boundaries ("Stop pushing my wheelchair!"), and to ask with his nice words ("please").  Life is good!

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.

Saturday, October 4, 2014

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!