Wednesday, April 9, 2014

Mason's Wheelchair Transfers - A Video

Have you noticed that I go in phases with the video sharing?  It just so happens that Mason had a first today that I wanted to capture on video.  Today was Mason's first physical therapy day since his spinal cord detethering last month.  Our PT has been working with us since Mason was tiny.  Today we embarked on the world of wheelchair transfers. 

Our goal in this, as in everything, is to give Mason as much independence as possible.  One logical area is getting into and out of his wheelchair, also known as wheelchair transfers or simply transfers. In everyday life he'll need to get onto the floor, into a chair at the table, into bed, onto the piano bench, in a car, and so on.  He'll need to get back into his wheelchair from all those places as well.

Our first goal is to help Mason learn how to get into and out of his wheelchair from a surface close in height to his seat.  As he builds upper body strength we will try transfers from and to the floor.  Today our surface of choice was the couch. 

There are several smaller skills that go into this, things I never would have thought of.  Mason has to reach the seat, get into it backwards, turn his body around to sit in the seat the correct way, move his legs and feet into position over the foot plate instead of stretched out over the brakes, wheels, or even the arms of the chair.  He needs to push up on the arms of the chair when positioning his bottom into the center of the seat because we don't want to risk another skin tear on his bottom.  It will be a process and quite honestly we didn't know how he would do. 

Want to see?

The physical therapist and I just told him to get in the chair and waited to see what he would do.  As you can see, he just got right in.  Goal number one - accomplished.  Now any time we are home Mason is responsible for getting himself into and out of his wheelchair using the couch.  When his physical therapist returns next month he'll have a lot of practice under his belt and we will fine tune his technique and begin attempting transfers from the floor, possibly with some assistance like an incline or pillow to put him a bit higher up.

Monday, April 7, 2014

Video of Mason Talking

I had a request for a video of Mason talking from a reader.  If you've followed along with Mason's journey you may remember that at just turned 2 he really didn't talk.  We weren't too worried as some of his siblings have been late to begin talking and he was obviously comprehending things well.  About a week after he turned two he had a language explosion and added single words to his vocabulary daily.  Now it is almost 3 months later and he's putting several words together at a time.  Enjoy!

As always, if you have any questions for me feel free to leave them in a comment!

Tuesday, April 1, 2014

Detethering Recovery Updates

It's been two weeks and one day since Mason had his spinal cord detethering.  Healing is going well. 

Here is a close up of his back this morning.  It is healthy and healing, with most of the glue gone except a patch right there in the middle.  We can touch his incision now and while he doesn't like it, it doesn't hurt.  Once all the stitches fall out we will move to doing some scar tissue massage but for now we're leaving it alone.

In general we are just waiting and watching Mason to learn what changes surgery brought.  One of the difficulties is that he's just 2 years old and really can't explain what feels different.  We can make our observations and guesses and we could be right or totally misinterpreting what we see.  With that disclaimer, here are things we think we're seeing:

  1. Sense of touch in new areas - this is a big one we are making guesses on.  From what we can tell in playing with Mason and trying to touch him when he's not paying attention to our hands, it looks like Mason has gained some ground here.  On his left leg he can now feel the top of his thigh down almost to the knee.  The sense of touch fades out along some places on the sides and underneath.  This is new.  He's ticklish. We think he has also gained some feeling in the right leg/thigh, though not as much.  The jury is still out on what he can feel on the lower back, butt, and abdomen.  He's pretty protective of his back still, telling us not to touch it.  We'll explore this more as time goes on.
  2. Strength gained in his hips - He is able to pull up at the hips still and can do so with more strength, pulling those legs higher up to either side (in a frog position).  He can NOT straighten at the hip.  We were not expecting that anyway.
  3. More flexibility in the hips and feet - we can tell a difference because we can now stretch things out more than before.  A little.  Will he still need surgery on his hip and feet?  Probably on one side.  We'll be talking with orthopedics later this month at Myelo clinic.
  4. Some new feeling in his belly, on the inside - This one we didn't expect.  Every night during Mason's enema he's telling us 'ow' because his belly hurts.  It's the cramping that happens after he's had the enema solution in for a few minutes.  In all the time we've been doing daily enemas up to now he's not ever felt uncomfortable.  It's a great thing because we're using that as our cue to move to the potty and let things go.  We don't know what this means beyond it is something Mason never felt before surgery.  Does it mean things are working a bit better (more coordinated) in his bowels?  Maybe.  Does it just mean that now he's going to be uncomfortable every single night during his enema?  Maybe.  Like many things with Mason we will just have to wait and see!
I can't begin to tell you how good it is for my momma heart that Mason is healing well and feels good again.  He is feeling so good that swinging is back on his daily plans outside.  We are being cautious and have a folded towel on the back of the swing as a bit of padding between his back and the rubber of the swing.

Next up in Mason's medical agenda is Myelo clinic in late April.  It will be a full team appointment where we check up with all of his specialists and I expect to come out of that with more appointments with a few of the specialists. 

That's it for now, I'm off to enjoy the warm weather with my kids in the back yard.

Monday, March 24, 2014

No More Bandage! Pictures of Mason's Back

One week ago today Mason had surgery and that meant we were able to remove his bandage this morning.  We found that our neurosurgeon followed the same general incision line Mason had before, so it is horizontal.  There is still a layer of surgical glue over the incision.  That will begin coming off this week and next on its own. 

Here is a close up of the incision.  It looks pretty similar to the last one.

The only odd thing I didn't get a picture of, it is a bit difficult to get across in a picture.  If you look at Mason from the side and run your fingers down his spine from neck toward his bottom you feel the spine begin to curve out just above the incision.  That may be normal or may be a bit of swelling.  However, when you get below the incision his back seems to dip in again.  That may be evidence of the scar tissue that was removed or may simply be noticeable because the upper part is swollen.  Only time will tell! 

And just because he's cute, here is a picture of Mason playing with the car track.  Joseph taught him how to use the car launcher.  And yes, that not so little baby behind Mason is Samuel.  He's eight months old and crawling around after his big brothers.  He likes to chew on the track.

For a week out from surgery Mason is doing really well and back to most of his normal activities.  He's happy and bossy and enjoying being home surrounded by family.  He's almost settled back into normal sleep routines too.  The hospital always throws him for a loop with checks at all hours, so he had been staying up until midnight every night and taking a late nap each afternoon.  He is falling asleep before 10pm now and nap begins closer to 1:30pm.

Sunday, March 23, 2014

Mason Feels....Great!

It is Sunday and time for an update on Mason's post-surgery recovery.  To be honest, if you had told me on Tuesday or Wednesday that by the weekend Mason would be playing pretty much like he was before surgery I wouldn't have believed you.  He was in so much pain and didn't move unless you made him.  He feels so much better already.

He is crawling.  He is sitting himself up.  He is climbing.  He is on the go for hours at a time before he needs to slow down and rest. 

That core strength we were concerned about?  It's strong!  He's able to lift both hands and balance for a while. It is a beautiful blessing from God! 

We still have not seen his incision.  We remove Mason's bandage tomorrow morning. I'll take some pictures when we do. 

Friday, March 21, 2014

Mason is Home - Surgery Update

Mason's surgery journey is not over but I want to share details of the week so far before I forget them.  For those wondering, Mason came home Thursday evening.  Now let me back up!

Monday morning Mason and Mommy went to Children's Hospital for his scheduled Spinal Cord Detethering.  He spent his time in pre-op playing and relaxed.  When it was time for anesthesia he went to sleep with the mask while snuggling Mommy, no problems. 

I spent several hours waiting while Mason had surgery.  Dr. G came to see me when the surgery was finished.  Everything went smoothly.  The spinal cord was very tightly tethered.  He released it and tested some nerves in his legs to see if there was any function in them.  One responded a bit, the other did not.  What that means only time will tell.  Dr. G hopes Mason will not need another detethering for years, his hope being 10 years, but with all things like this we just cannot predict how long before it happens again and causes nerve problems.

Mason and I were moved to the Neuro floor of the hospital and thus began the longest 2 days ever.  Mason needed to remain laying flat.  We watched a lot of Curious George using the Kindle Fire.  He struggled with pain management.  In the times we had to roll him to change a diaper it was agonizing. 

On Tuesday morning Mason was given several medications and one made him throw up everywhere.  We had to clean him, the bed, and everything else while keeping him flat.  It hurt.  Even worse, on day 2 Mason had to get a bandage change because a nurse tried to do his enema and got his bandage wet.  It was the worst things I've ever heard from my little man and halfway through one of the three nurses went running for morphine to try and help him get through it. 

By Tuesday night at midnight Mason just wanted Mommy to lay down with him. (Up to this point he was in a hospital crib).  So at 12:03AM we got a regular bed and carefully moved Mason, keeping him flat.  Mommy climbed in bed and we tried to get some sleep.

Wednesday we were given the ok to start sitting Mason up.  We started slowly, with him reclining on me.  It hurt him to move but once he was in position he was okay.  At this point there were no leaks of cerebrospinal fluid (CSF) from his back. 
Later in the afternoon he sat up with the help of his hospital bed to eat dinner.  Pain management was going better, Mason no longer needed morphine, but I had to stay on top of nurses to get his medications on time. 

Thursday Mason spent the morning lounging in bed, working his way back to sitting with the bed being raised.  At lunch time he demanded to be allowed in his wheelchair.  My tiny dictator!  I picked him up and he didn't cry.  It was uncomfortable I am sure, but not painful like before. 

Once he was in his wheelchair he ditched the idea of eating lunch and took off out of the room.  We spent the next 2 hours wandering the halls of the floor, visiting the playroom, and 'walking'.  Mason just wanted out of that hospital room.  Toward the end of that he was tired and let me push the wheelchair, doing laps around the halls.

Finally we went back to his room for cathing/diapering.  He did well on the transfer to the bed and it was then that I realized just how big a difference a day can make.  He truly felt better. We were heading home. 

It is now Friday morning and Mason is happy and doing well.  So far his back is not leaking CSF and he is thrilled to be out of the hospital.  There is nothing quite like being in your own home, getting into things, and surrounded by family.

He also thinks the food at home is way better than hospital food.

Movement and Function

I want to make a quick note here about the results we're seeing so far from surgery. 

  • At this point Mason is moving both legs at the hips better than before surgery.  Its obvious that he's stronger there. 
  • The hip and foot contractures - the jury is still out.  I think his feet have more flexibility/range but it's too early to tell.  We will get right back to doing his leg and foot stretches and see what happens while we wait for more appointments with other doctors in the future. 
  • Mason's sitting balance is off.  Considering how many muscles it takes to sit and balance, and that a portion of those were just cut on Monday, this is not surprising.  As his back heals we expect he will regain his balance.  He also can't sit himself up at the moment, which takes using a lot of back muscles in ways that hurt right now.  Again, we expect this will come back as his back heals. 
  • We have no idea what this surgery has done to Mason's bladder and bowels.  We will have some tests done in 3 months to check the bladder, we will continue nightly enemas and watch what happens with his bowel function. Our hope is that things stay the same, that nothing got worse (lost nerve function more).  Only time will tell.

Wednesday, March 19, 2014

Wednesday Postoperative Update

Mason continues to do well.  He seems to be in less pain today which is a blessing.  He spent about 45 minutes reclining on Mommy before lunch and will be getting out of bed and upright in his wheelchair this afternoon.  It was wonderful to finally be able to hold him. So far there is no leak of spinal fluid and we pray for that to continue.  If all goes well and pain stays managed we may head home Thursday sometime.  Our first priority is doing what is best for Mason so if that means we stay longer we will, just have to wait and see.