Monday, April 25, 2016

Bye Bye Boot! Post-Op Update

Mason had his checkup today at the orthopedic surgeon's office.  A short reminder: Feb. 12th Mason had tendon surgery on his right foot.  He wore a cast for 6 weeks.  There was still a lot of swelling from surgery when the cast was removed so he went into a boot for 4 weeks.  Today was checkup. 

The swelling is gone.  Yay!  Mason is healing beautifully.  We go back in 3 months for another checkup.  Dr. K said to continue wearing the boot until we could get Mason in to his orthotist to have his AFOs adjusted or new AFOs made if needed.  I was expecting this and asked him to hand me the prescription instead of sending it to our orthotist. 

When we got out into the parking lot I called Mr. B, the orthotist, to see if he could fit us in today while we were in the city (we live about an hour from the orthotist so fitting this in today would save me a drive).  He had just had a cancellation so we went to his second office.  I knew that this was a possibility and had already printed directions from the orthopedic surgeon's office to each of the two orthotist offices so I could find them.  Yay!  AND I had packed Mason's AFOs (Ankle Foot Orthotics, short bracing coming to just below his knee) and his HKAFOs (Hip Knee Ankle Foot Orthotics, tall braces that hold Mason in a standing position so he can bear weight in his dynamic stander to strengthen his bones and bone density, no walking for Mason). 

At Mr. B's office Mason got his AFOs adjusted to fit (heated, cut, molded).  Yay!  That means no more walking boot.  Mason does need to wear his AFOs pretty much 24 hours a day.  He can take it off for a few hours when it makes activities easier (ex: at the swimming pool, bath time).  In a few months we may be able to move to wearing the AFOs for just 12 hours a night.  We'll see. 

The longer standing braces are much too short as Mason has had a growth spurt, so Mr. B will keep those to lengthen them and in a few weeks we will go back to get them fitted. 

After these appointments we went looking for shoes.  It is hard to fit shoes over AFOs.  The pair we special ordered over a year ago still fit for now, but they are heavy and difficult to crawl in as Mason has to drag them and often his legs twist in ways that could cause leg breaks.  We didn't have any real luck at the four shoe stores we went to.  When we came home we got online and ordered shoes from a different company that are supposed to be lightweight and work with braces.  We'll see!  I'll share about those when they arrive, especially if they work. 

Phew!  Other than Mason's weekly physical therapy there aren't a lot of appointments on the horizon medically.  In early May he goes back to the developmental opthomologist who did Mason's double eye surgery in March.  We'll find out then if Mason needs a new glasses prescription now that his eyes have healed.

Thursday, April 14, 2016

Swelling, Suspenders, and a Socket Wrench

Life is always busy in a family of 11 so my updates here are sometimes few and far between when things are going well.  I love when things are going well! 

So why am I posting today?  Just for a few general updates for those who have been looking for them.  First, Mason is healing up really well from the foot surgery.  The swelling has visibly gone down in the last few weeks. I expect that when we go to the orthopedic surgeon in 11 days Mason will get the okay to have his AFOs made and be finished with the walking boot when the AFOs are ready.  The reason he is using the boot is to keep his healing foot flexed into a neutral position.  Then his AFOs will take over the same job. 

We have been taking advantage of the fact that we can remove the boot for short periods of time each day.  This afternoon, for example, Mason is playing outside without the boot.  This brings me to my next two updates.  First, look at that picture above.  See how cute his suspenders are?  They are there for a purpose.

You see, one challenge for Mason outdoors is that when crawling his pants tend to slide right off, then he tears up his knees (bleeding, cut, bad!).  We combat this two ways.  He wears jeans, which if they stay up, protect his knees for a while before he rips holes in them.  He also can wear knee pads when we have ones that fit well. The suspenders just came in the mail this week and we're happy to say they are holding his pants up well.  Cheap little kid suspenders that come with dress clothes just aren't sturdy enough to stay clamped to pants, so until now we've never found suspenders that work.  These ones are found on Amazon right here in a host of colors and the clamps onto his pants are strong and holding up to his crawling around in the grass just fine. 

The second update is a report on Mason using the Free Wheel.  Remember, this is new equipment for him and not really made for a child, so we had to custom fit it.  And that fit wasn't perfect.  It doesn't lift his front casters off the ground as much as we need it to for a smooth and easy drive on uneven surfaces.  We brainstormed, we asked the wheelchair vendor if there are casters that can pop on and off easily with some sort of release.  No luck.  However, his casters DO come off with a socket wrench and about 2 minutes of effort.  Lo and behold, we have a perfect solution!  We put on his Free Wheel and unbolt the casters, remove them, and he's off exploring.  When we're ready to go indoors we put the casters back on his wheelchair before removing the Free Wheel.  It's going to be a fun spring and summer with this!

Tuesday, March 29, 2016

Bye Bye Cast and other Updates

Yesterday Mason got his cast off!  Hip, hip, hooray!  It was a long 6 weeks. Mason's leg and foot are still dealing with swelling.  It is understandable when you realize just how much was cut in his leg.

The surgery was really deep and he was cut pretty much from one side of the ankle bone around the back of the leg (down to the bone) to the other side of the ankle bone.

He is healing well but has a ways to go.

He did come home with some temporary equipment.  For the next 4 weeks Mason will wear this walking brace to keep his foot in the proper position while swelling continues to go down. Hopefully in 4 weeks swelling will be gone and we can have new AFOs made. 

The perks to this temporary brace: velcro! We can take the brace off for baths, for playing in mud, etc. The goal is to wear it more in 24 hours each day than he has it off. He is also freed to crawl around because if the brace snags on something and his leg slips out of position we can simply unfasten the velcro and adjust it, unlike a cast.  Mason has taken advantage of that to play on the floor more.

He loved his bath yesterday and I suspect he's going to ask for a bath every single day for a while. 

One thing we were not sure about was how much strength Mason would lose from not being allowed to crawl or climb for 6 weeks.  The last time he had casts long term like this he was unable to climb up into his wheelchair or climb the stairs when the casts came off.  This time around he's done much better.  He has already shown us he can climb into and out of his wheelchair from the floor on his own.  He hasn't attempted climbing the full flight of steps yet, but as the steps are easier (shorter height for each step) we believe he will still be able to do that. 

In other areas:  The orthopedic surgeon took an x-ray of Mason in the sleeping brace and it is correcting his curve to the degree they wanted so we don't need any more adjustments on that.  He has quickly gotten used to sleeping in it. 

Physical therapy is still happening weekly and going well.  He is gaining strength in his trunk control but it looks like he may be reaching the limits of what he will gain.  And that won't put him at the balance level we were hoping for, so many tasks involving seated balance (putting on and taking off clothes/jackets, drinking from a cup without chair arms and back to hold him up) are still going to be very challenging.  We'll keep brainstorming and working to find ways to make him successful.  I suspect occupational therapy is in his future for this. 
We are thankful for the healing so far from surgery. On to the next 4 weeks!

Monday, March 21, 2016

Mason Using the Free Wheel

One challenge for anyone using a wheelchair is that any uneven terrain makes it difficult to impossible to move.  For an active 4 year old like Mason this means when we are playing outside he is often limited to crawling on the ground because he simply can't get his wheelchair to move in grass, on uneven sidewalks, on gravel.  Crawling on these surfaces then tears up his clothing and his skin.  It's a vicious cycle.  And he is unable to keep up with his siblings or other children who run from the sidewalk into the grass during a game of tag. 

We learned of a wheelchair attachment called a Free Wheel that is made to help with these difficulties.  Today we were able to get one for Mason.  Here is a video of Mason in the back yard using the Free Wheel for the first time outside. It works, but he will have some upper body strength to build too for more inclined or uneven ground.

So far we can see there are a few bugs to work out. The Free Wheel is actually not made to fit a wheelchair as small as Mason's so it took some custom work to fit it. This means that because his wheelchair is so short the footplate the free wheel attaches to doesn't provide the same tip as it would on an adult or older child wheelchair that is taller. Mason's casters (small front wheels) clear the ground now, but less than an adult's would. This means depending on how uneven the ground is the casters still hit the ground and can snag a bit, needing more muscle to push. Mason will develop that muscle. We are looking at other measures where we could possibly have removable casters for when we attach the Free Wheel (so there are no small front wheels at all, we would pull them off, then replace before taking off the free wheel). We are the first young child wheelchair that our vendor has put a free wheel on.
Another thing, the Free Wheel comes with an attachment for the back of the wheelchair to hang the free wheel while not in use. Mason's wheelchair isn't tall enough for it to clear the ground when hanging, so we didn't put that attachment on. We'll use it on his next wheelchair when he's older.

Thursday, March 10, 2016

Eye Surgeries - 1 Week Check Up

Mason's eye surgeries happened ten days ago.  Today we visited Dr. G for a post op check up. Mason's eyes are better than they were, meaning with his glasses and bifocals he can now see without the eyes turning in. He has still got more swelling in the deeper layer of each eye than they like, so he gets another round of eye drops for 5 days, three times a day. Hopefully by then the dissolvable stitches will dissolve and his eyes will have no more swelling inside. In two months we will go back for another check up to see if the glasses prescription changes once all healing is complete.

Sunday, March 6, 2016

Scoliosis Brace - Night two report

Well, night two went better.  We made several changes that I think helped:
  1. We carefully put on Mason's brace, step by step, double checking everything.  This is a bit of a process, you have to put the brace on his body at a specific place and if you have it a little to high or a little to low it will still close but is pressing on the wrong places.  For example, on the left side there is a curve that pushes into his side.  It goes below his bottom rib and above his hip bone.  If we have it a little too high it pushes on his rib, if we have it a little too low is pushes on his hip bone.  Either can leave marks from the pressure.  So can tightening it too much, or an inappropriate fit (when he grows he'll need a new brace). 
  2. We made sure to only use a sheet for bedding instead of a fleece blanket.  This kept Mason at a better temperature so he didn't overheat.  We also made sure to pay attention to what clothing he was wearing so he didn't have too many layers.
  3. We didn't give Mason as many pillows as usual.
  4. We double checked with Mason, asking if he felt comfortable or if something was pushing him or squishing him and didn't feel good. 
Mason happily and easily went to sleep.  I woke several times to check on him, make sure he wasn't too hot or cold, and to check the circulation in his toes (especially the foot in a cast).  Around 1:30am it was time to cath Mason.  We do have to remove the brace completely to access his pants waistband and diaper.  And on this night he was already a bit wet so the diaper itself needed changed.  Mason woke up so we were able to ask how he was feeling, if anything hurt or was uncomfortable, etc.  We took off all his clothing to check his skin for pressure areas and found none.  After cathing Mason reminded us to put on his sleeping brace again, so we know he was okay with it, and we did. 

Mason slept the rest of the night peacefully and woke up at 7:00am.  We removed the brace and his clothing and diaper to check his skin again.  This time we did notice a pink area along the side/bottom of one thigh, where the edge of the brace is and his leg rests on it.  The pink disappeared within the 20 minute window we're told to check it.  We will keep an eye on this area and discuss having it trimmed down a bit when we return to the orthotist in 2 weeks.

We're glad the second night went better and thankful for Mason's easygoing cheerfulness at new things.

Saturday, March 5, 2016

Scoliosis Brace - First Night Report

I'm all about keeping it real so I wanted to share how the first night went with Mason wearing his night bending brace.  Basically, it was a short night.  Mason went to bed at 8pm happily wearing his brace.  He fell asleep after a bit longer than usual.  I thought we were set.


At 11:30pm Mason woke up crying.  He was hot, sweaty/damp under the brace, and upset.  We took off the brace and all his clothing to check his skin.  There was one spot that was pink from pressure on his bottom left rib.  We checked it after 20 minutes and it had nearly faded all the way, so that is good.  We went ahead and did Mason's middle of the night cathing and decided to leave the brace off the rest of the night because he was still unhappy.  He went to sleep and slept the rest of the night. 

As I'm typing this it is night 2 of wearing the brace.  Mason went to sleep fine.  We're hoping that tonight goes better and he sleeps well. I'll try to remember to update tomorrow with how the night goes.

Oh, one more quick note because it is something I wondered about - Mason cannot sit up or roll over in the brace.  It means that I have to listen for him to wake up and go to him at night or in the morning, he can't climb out of bed and come get me.  I don't know if he will one day have the strength to sit himself up or roll over while in his brace.  It goes pretty far down on his bottom/hips.