Sunday, July 27, 2014

Living Life while Waiting

We are getting much closer to Mason's double surgery (9 days to go).  I think it will be interesting to see how Mason handles the long leg cast.  I suspect the cast will be quite heavy for him (he's not even 30 lbs).  The last time he wore casts was when they were correcting his clubfeet.  He was only a teeny baby then. 

Mason has been enjoying these cube chairs a lot lately.  He sits in them, uses them to climb up on things, turns one like a table for drawing on, and climbs on top of them in table form to sit up high.  I think they've been a great addition to his 'life is physical therapy' environment.  We try to have things around that encourage him to reach, stretch, climb, and use his body in new ways.  These have fit right in to that. 

He has also become fascinated with drawing.  He prefers pens and will draw teeny little things all over paper with his tongue sticking out as he concentrates!  Then he wants someone to draw Curious George.  I'm not the best monkey illustrator!

All in all Mason is doing well and enjoying being two and a half.  Life is good!

Monday, July 7, 2014

Urodynamics Test Today

Mason and Mommy headed to Children's Hospital this morning for his urodynamics test in the Urology Department.  He had this test in April of last year and due to high bladder pressures was put on Ditropan.  You can read more about that visit here.  Today was easy.  We checked in and Mason explored the waiting room for a few minutes before we were taken back for the test.

In the test room Mason loved this ocean mural.  He had fun pointing out the different animals and even took my camera to take a few pictures of his own. 

The test told us a few things.  First, the Ditropan is working well at the current dose.  His bladder pressures stayed super low during the test.  Second, it gave us an idea of how much his bladder can hold without leaking. 

We will use that information in the coming week or two as we begin measuring how much urine output we get cathing Mason in the middle of the night and first thing in the morning.  We're checking to see if we can forgo that midnight cathing.  I have no idea if that will be a possibility.  While the extra sleep would be nice (not having to wake up in the middle of the night every night to cath Mason) the important thing to us is protecting Mason's bladder and kidneys.  So we'll do what we need to do. 

It was a great appointment, Mason was cheerful and talkative through it all.  He loved the elevator rides and is an old pro at the hour drive to the hospital and the hour drive home.  We listened to music and to podcasts.  The cutest thing was every time a truck passed us he would call out, "Come back truck! Come back to me." 

Thursday, June 26, 2014

Surgery #13 Scheduled!

We officially got Mason's surgery date today!  On August 5th Mason will have his 13th surgery.  This one will be a double surgery on his right foot and right hip. 

You can learn more about what is happening here

We are excited to get things moving again and plan to enjoy every minute left to our summer before surgery and a cast!

Friday, June 20, 2014

Which Knee Pads?

I had a reader request a direct link to the knee pads we're using for Mason.  As it is something I looked for recommendations on myself and found none I think sharing is a great idea. 

We purchased this Strider Knee and Elbow Pad Set on Amazon.  Mason wears the smaller elbow pads on his knees right now.  Eventually he'll grow into the actual knee pads but for now these are working well.  The straps are Velcro which makes them adjustable.  The knee pads are hard and have taken a beating quite well so far.  Mason had been getting bloody knees and legs from crawling on and across the sidewalk that goes down the middle of our backyard.  Now he's able to play without injury.  We do have to watch that they don't get caught on something and slip down off his knees (it happens occasionally). 

Thursday, June 12, 2014

Bye Bye Bumbo Wheelchair - A Video

We're so excited!  Mason has outgrown his Bumbo wheelchair (his legs are just too long!) so it has been sitting around waiting for a new owner.  Today we found a new buddy named Blake who will be the new owner.  Here is one last video of Mason in the Bumbo wheelchair to give Blake a peek at the fun he'll learn to do soon!

Friday, June 6, 2014

Knee Pads and Wheelchair Transfers

I feel like this blog is neglected a lot because right now Mason's health is not changing much and life is full and busy with eight children.  Last month I updated everyone on the upcoming surgery and we still have no official date set.  I plan to call next week to see if the schedule has opened on the computer for August. 

We have spent more time outside as the weather warms and it brings to light another thing we are trying to deal with - holes in clothing and bleeding knees.  Every single time Mason plays in the backyard (crawling) he tears holes in his pants or shorts at the knee.  And if I don't catch it soon enough he also tears up his knees and they bleed.  We have been on the search for a good solution, especially as it warms up and Mason wants to play outside for hours with his siblings. 

I finally bought several different brands of knee pads on Amazon in an attempt to find some that will stay on his knees.  His legs are not chubby at all (he's only 27 lbs) so getting something small enough is a challenge.  We finally found this set of elbow and knee pads and Mason can wear the ELBOW pads as knee pads.  If we put them on over his pants/shorts (to avoid holes in the clothing as well) they slip off and don't work.  When we put the knee pads on his skin they do stay pretty well.  The shorts or pants get holes and have dirt ground in so deep it is hard to get out, but that's better than Mason getting hurt.  We've resigned ourselves to lots of ruined clothing and I'm making a trip to the thrift stores regularly to stock up on cheap shorts for summer.  We're going to keep a few pair of shorts nice and not let him wear them outside, but then he's going to have a hefty supply of play clothes. 

We ripped up the carpet from the main living areas of the house a few weeks ago.  The carpet just made Mason have to work for every inch he moved in the wheelchair and crawling.  Ever since then he has asked to be in his wheelchair many times during the day.  He can chase after his siblings, spin around and dance, and roll quickly and let go of the wheels to keep cruising across the room.  He loves it! 

The other thing Mason is really working on is transferring into and out of the wheelchair from the floor.  It's hard work.  We started with a large pillow to climb on in front of the wheelchair, then he used the foot plate and seat to climb up.  Now we've progressed to a thinner pillow he climbs up from.  His right leg causes some problems because it is still contracted and gets in his way, caught on the brake bar, but he's determined and usually finds a way to get the leg pulled around it.  He is so small that it is too hard yet for him to get into the wheelchair from the floor, but as the pillow he is using only gives him about 2 inches in height I suspect he'll be strong enough to do it directly from the floor in the next year.

Getting down is another thing all together.  His preference is diving right off the seat - not a great idea with wood floors.  His legs can get caught up on the wheelchair and it's just something we're discouraging.  Instead we're trying to teach him how to push up with his hands and slide his bottom forward and down to the foot plate and down from there. 

Well, I suppose I had more to share than I expected!  I think that is everything new going on with Mason right now. 

Monday, May 12, 2014

Surgery 13 on the Horizon - Mason Updates

It has been weeks since I've posted any updates here about Mason.  Sorry!  Mostly that is because we've been in waiting mode.  He has recovered beautifully from the spinal cord detethering he had on March 17th.  He has been happily enjoying life.  The waiting game has finally moved ahead a smidge.  This morning Mason had the big appointment with his orthopedic surgeon Dr. K. 

A little bit of history:

Mason and Dr. K met when Mason was just days old in the NICU to evaluate Mason's clubfeet. 

Remember this sweet little man?  This is a pretty good view showing how bent and malformed both of Mason's feet were. 

At 2 weeks old Mason began a series of Ponseti casts to correct his clubfeet, applied by Dr. K.  Every week or so the casts were changed. 

When he finished that process Mason was fitted for a foot brace and bar that he wore 23 hours a day to keep his growing feet and ankles in the correct position.  Eventually he graduated to wearing the brace only at night.  The goal was to wear it for several years to lower the incidence of the clubfeet relapsing. 

Unfortunately for Mason his spinal cord tethering caused symptoms in his hips and feet.  He rapidly developed contractures, mostly on the right side, and we could no longer put his foot into a flat position or straighten his ankle.  This meant Mason could not wear his foot brace because we couldn't get his foot in them without leaving bruises.  Mason has not been able to wear his foot brace for 10 months.  He has not been able to wear his HKAFOs and use his mobile stander for 10 months either. 

Today's Appointment

We had an evaluation with Dr. K today and came out with surgery plans.  Mason's left foot, which has tightened up some, we are going to do some serious stretching with and it should loosen up enough to comfortably get into a flat/neutral position.  His right foot and hip need surgery to cut tendons and let them regrow longer.

Both surgeries will happen at the same time in a 3 hour process.  They anticipate a 1 night hospital stay.  Then we go home and wait 6 weeks for his cast to be removed. The uncertain part at the moment is just what casting/bracing process they will do after surgery.  There are two options in the front running.

  • Option 1 - A long leg cast from toes to upper thigh.  This would be combined with some sort of hip brace the doctor referred to as a mermaid brace.  It keeps both legs together to stabilize the hips during healing for 6 weeks.
  • Option 2 - A 6 week cast from the toes of Mason's right foot clear up to his chest.  I have no clue how we would manage things like sitting in his wheelchair or carseat or anywhere.  I suspect the nightly enema to get Mason pooping is going to be a disaster with either option.  Oh the joys!
After the cast is removed Mason will become the proud owner of some new equipment: Ankle Foot Orthotics (AFOs).  Basically these are plastic and go under his foot and behind the calf, with Velcro straps to hold them on. They will help keep his feet from tightening up again. He will wear them pretty much all the time.  This means he will no longer need to use the foot brace with a bar between the shoes at night, something I find very exciting.He will also get refitted for HKAFOs once the hip is healed and be able to get in his mobile stander, which is exciting!

Still Waiting!!

The only snag in the surgery plan is that they are scheduling out into August already.  Mason won't get any of this done for months unless something opens up before then.  I'm sure God has a reason for the timing.  For now our plan is to just enjoy the summer without casts! 

My Questions for those Familiar with AFOs, especially if your child has Spina Bifida or a lack of sensation and muscle control:

Here's where I would love your help!  If you have a child using AFOs can you give me some ideas of where to find socks without seams?  With Mason's lack of feeling in his legs and feet we'll be extra diligent about doing skin checks often but I know we'll need some new sock options.  And SHOES.  We will finally be able to purchase shoes for Mason after this surgery.  What shoes tend to fit well over AFOs?  Can they be purchased with a different size for each foot?  Mason's feet are different sizes by a good bit.  Do you have any other tips for me regarding AFOs?