Tuesday, June 16, 2015

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. 

100_4570We 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.
100_4574There 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.    
100_4575The 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. 
IMG_20130817_195651When 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.

Friday, May 22, 2015

Eye Checkup Time!

Yesterday Mason visited his developmental ophthalmologist for his yearly checkup and new glasses.  Last year Mason got glasses to help correct the over focusing of his left eye that causes it to turn inward.  These glasses have worked well for Mason, though within a minute or two of removing the glasses his eye will turn inward again.  It does it when he is focusing closer in, not when looking far away. 

The appointment was long.  First you have a basic exam with the nurse and the doctor.  Then they dilate your eyes, sending you out to the waiting room to let the eye drops take effect.  Then you go back in for a second eye exam.  Diagnosis happens.  Then you take your new prescription next door to order glasses.  All of which took two and a half hours.  Thankfully I knew what to expect and we had packed things to do and a full lunch.

In true Mason fashion nothing stays quite the same.  His eye prescription is a little bit stronger this time around.  He also will be getting one bifocal lens!  The doctor feels that the left eye could use the extra support of the bifocal when looking at things close up because his eye is beginning to turn in a bit even with the glasses when doing activities like drawing or looking at things up close.

Mason knew he would be getting new glasses today and we had been talking about color choices.  For several weeks he had said he was picking black frames.  In the end that is exactly what he chose! All those color chips above were his options for the Miraflex frames.  He tried on quite a few colors, a few different frame shapes too.  Mason actually still fits his orange frames so we have decided to get new lenses put into them as well.  He'll have two pair of glasses available just in case something happens to the first pair.

Friday, May 15, 2015

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.

Wednesday, April 29, 2015

No News is Good News

Blogging here seems so sporadic but that is usually a GOOD thing, it means Mason's health is going along on a nice, smooth path with nothing unexpected.  We've had fun as a family and just this week was Mason's first family bowling trip.  Here are some general health updates:

  • We're struggling to get his braces adjusted right.  The HKAFOs (standing braces) are not quite working out.  Because one of his knees won't straighten all the way due to the broken femur and extra thick callus the healing bone laid down the braces put pressure on his thigh.  That means right now he can't wear the braces for more than 30 minutes at a time, when we would like to see him getting 2-3 hours a day in them.  (Remember, standing promotes bone growth and density, helping his osteoporosis. That is why we keep adjusting the brace and trying.)
  • Mason is scheduled for his third IV infusion for his osteoporosis next month.  We're almost through the first year!  One more dose after that and it will be time to check his bones to see how they have responded. 
  • We've taken the arm rests off Mason's wheelchair.  This may be temporary, it may not.  The idea was for Mason to try it and see if he likes it.  (It makes the chair lighter for him to push, means less is in his way when climbing in or wheeling around, etc.)  It does, however, mean he's had to develop a new climbing pattern and some more upper body strength.  He figured it all out while we were waiting for our physical therapy evaluation next month at Myelo clinic.
  • Bathroom business - Mason's nightly cone enemas are going pretty smoothly. We've gotten a decent handle on the amount of dietary work we do (lower amounts of dairy, added almond milk and the needed miralax, encouraging drinking water often and juice once per day) so we have been able to avoid major constipation backups for a while.  This is a huge deal!
The last few weeks have been so interesting to watch.  I've been through it before as Mason is my 7th three year old, but it is always fascinating.  Mason has started to pretend play.  He becomes a sea turtle (with a pillow for a shell), he turns a tub into a car to drive, he decides he is a frog.  He is also making buildings with Magna-Tiles on his own, drawing more, and becoming more opinionated. 

Coming up in May Mason has several appointments.  He'll kick off the month with his third IV infusion for his osteoporosis, then spend a full day at Myelo Clinic seeing about 8 or 9 of his specialists, having ultrasounds, etc, and he also has an appointment with his developmental opthomologist for an eye checkup and to see if his glasses prescription needs updated.  It's going to be busy but hopefully uneventful!  That's the way we like it.

As always, if you have any questions about Mason, Spina Bifida, Hydrocephalus, etc. please leave a comment and I'll do my best to answer!

Tuesday, March 10, 2015

New Braces at Last and other general updates.

 All pictures in this post are from today - Mason showing off his new braces.
Mason's days have been pretty normal with no major updates for over a month so this blog has been quiet for a while.  Since he turned 3 in January we have seen some fun fine motor development.  Mason now colors purposefully instead of scribbling.  He colors in different parts of a coloring page, still going outside the lines, but you can tell he was coloring something specific.  He is also beginning to draw his own pictures and tell you all about them. 

While we have been waiting for new HKAFO braces to be built Mason has spent his days usually evenly split between using his wheelchair and not.  He has gotten stronger and one of the best evidences of that is his ability to climb.  He now can climb from the floor onto the dining room chairs and up onto the table.  Last month Mason had his second IV infusion for his osteoporosis.  It was done outpatient and they were able to get an IV started in his foot after a few attempts. 

Today was a happy day because Mason got his new HKAFOs.  We drive to the orthotist's office early in the afternoon and after a few hours of building, adjusting, and trying on the braces were ready to come home with us. 

In a week or two we will go back and the orthotist will make any further adjustments we think Mason needs.  That could be adding padding, straps, or cutting and trimming things.

Mason is so happy to be able to use his Rifton Dynamic Stander again!

In one other bit of news Mason is happy that he is going to be a big brother again this coming fall.  He is a great big brother to Samuel and a good little brother to his 6 older siblings.

Saturday, January 10, 2015

A Birthday and Regained Strength - Video included

How can Mason be three years old already?  We celebrated his birthday with a few presents (trains, a glowing ball, and some playdoh toys).

He also was thrilled to have Mommy make some cupcakes and chose chocolate cinnamon cupcakes with chocolate icing. 

I also wanted to share a quick video from today.

 It shows the progress he has made since losing a lot of strength last fall spending two months in casts.  He can now climb into his wheelchair completely independently.