Tuesday, October 25, 2016

HKAFOs and trying new equipment out - with a Video!

A couple weeks ago Mason got new HKAFOs (standing braces) and he has been enjoying them. The fit pretty well and his skin is generally tolerating the braces.

Mason's new glasses are in - with no bifocals! The eye surgery he had in spring has healed up and did improve his eyesight some, so now he just needs glasses, not bifocals. He went back to orange for the frames.

We are still dealing with crazy eczema that won't heal. The doctor has Mason trying a course of antibiotics and antibiotic cream to see if there is some underlying infection but his course of that has pretty much finished with no real improvement. I think the next step may be a steroid injection, but I'm not sure.

Yesterday Mason and I got to go work with one of the Myelo Clinic physical therapists at the hospital to try out new equipment. We have been waiting months on an opening for physical therapy (PT) and are still waiting. We decided that if we could figure out what equipment Mason needs then we can pursue private therapy locally instead of waiting for Children's Hospital. They were talking about everything from a gait trainer (very supportive, lots of potential attachments, but also thousands of dollars) to a reverse walker (minimal support, potentially much less expensive). They anticipated several appointments trying equipment to see what Mason would need and would be willing to use.

Well, I'll let the video show you the result.

Yes, that is his first attempt with a walker. He did great and it was obvious that he doesn't need a gait trainer. He liked walking. It's a great cardio workout for Mason, works his arms, shoulders, core, and applies pressure to his leg bones to help strengthen them and combat the osteoporisis, all important. Now we pursue insurance approval for a walker, which can be a long process. We have a family about an hour away who has a similar walker available for Mason, so we'll pick it up this weekend and use it while we wait for insurance to approve a walker for Mason and for the order process to happen. Then we'll pass the one we're borrowing on to another family who needs it.

We are also working to get Mason into PT locally with the physical therapist he's worked with in the past.

Monday, September 26, 2016

A Growing Boy

It has been several months since I've shared any updates here. Mostly that is because we've had a lovely summer and I have not been able to bring myself to sit and write boring updates. I love that life right now in medical land is pretty boring! We have been outside, gone to a Celtic festival, been swimming, visited the Columbus Ohio Temple grounds, had campfires, enjoyed the Renaissance festival, and just had a relaxed, family oriented summer.

Mason is learning and growing like a typical four year old (4 years 8 mos). He's opinionated, determined, and still shy around unfamiliar people. He loves to use his hands in things like playdoh and thinking putty. He sword fights with his brothers.

He bosses people around and does chores and laughs at jokes. He likes playing Minecraft. He loves to hold his sister's reptiles. This one is Mufasa, a bearded dragon.

He had Myelo clinic this summer and saw all his specialists. One giant good news we got was that his scoliosis has improved. The orthopedic surgeon was surprised but pleased. His curve is now only 13 degrees, very minor. As a matter of fact they would not prescribe bracing for someone who was presenting with a 13 degree curve. However, as Mason already has a brace we have the option of using it. Mason's skin is very sensitive and we've struggled to use the brace without rashes, eczema, and breakdown, but we're trying using it when his skin can handle it, and we're doing lots of play based physical therapy at home to keep building and strengthening the muscles in his core and back. Right now Mason has been dealing with a bout of eczema that even medicated creams are not healing completely.

He's waiting for an opening for PT to try out using a walker. It's just going to be another option during his standing time each day, it would not be practical for him outside the house for several reasons. For one, he can't actually use his hands to do anything (play!)when holding on to a walker. For another, he can't bend over to pick up anything because of the bracing he has to use. This week Mason will get new HKAFOs (standing braces) because he outgrew the old ones. I'm slightly nervous because we made some changes but we think he's ready for less support at the hips, so he's moving from a plastic back piece and belt to a leather belted area. We'll see how it goes.

Today Mason got new glasses. These are the first pair he's had since his double eye surgery several months ago. Now that the healing is officially over his vision has improved. He does still have double vision without glasses as his eyes turn in, but glasses can correct that turn now - without bifocals. This is a large improvement because before his glasses could no longer compensate even with a strong prescription and bifocals.

He also had a urodynamics test (bladder pressure test) today. It was the first one since his medication dose change months ago. He passed with flying colors and the increased dose of medication has improved his bladder pressure. Basically, that means his bladder is paralyzed well enough that it can hold a normal amount of urine without spasms. Spasms are bad because they thicken the bladder wall and can cause reflux into his kidneys, damaging them.

Five years ago when we first learned of Mason's diagnosis before birth I couldn't picture what his life would be like. I just had no idea. While he has had more than his share of surgeries already (18), comes with a few daily medical requirements, and has more than the usual number of appointments, on the whole he is a typical little boy. It's a joy to be his mother!

Friday, June 3, 2016

Vacuuming, Stander Time, and Snack Time

Lo and behold I have a little bit of time and have actually taken pictures of everyday life.  That means I'm doing a blog post about everyday life for Mason just because I can.  For those who like those sorts of things, let me tell you a bit about Mason right now.  Mason is almost 4 1/2 years old.  He's learning new things and loves it. Case in point - he's finally old enough to have official chores at our house. 

The way it works here is that the first summer after you turn 4 years old you get a whole room to be in charge of.  And every child older than that gets a room.  You clean this room every day but Sunday, which means it never gets really dirty but you get a lot of practice with basic skills like picking up, wiping off tables, sweeping or vacuuming, cleaning toilets, etc.  Mason's very first room is our piano room. He picks up any toys that have been abandoned on the floor and puts them away.  Then he gets to vacuum.  Mason loves vacuuming, though he doesn't like how noisy it can be.  We have a couple different vacuums and he prefers this red one as the quietest of the bunch.

I caught these cute picture of Mason and one of his younger brothers, Samuel, having snack the other day. 

They used three of our cube chairs, one turned over to make a table and two for seats, and had their own little party together. 

Another day in the life thing here is time in the stander.  Mason generally likes this, but we still need to get adjustments to his HKAFOs (braces he's wearing in combination with the wheeled stander to hold him upright), so his time is limited in the stander to about 30 minutes. 

I think we know where the adjustments need made though, so it's time to schedule that appointment. 

Today he decided to used dry erase markers during his stander time.  This book is a construction themed one with mazes and dot to dots he can do and wipe off to erase over and over. 

Other things Mason likes to spend his day doing:
  • Playdoh.  He's definitely a sensory fan and he asks to do playdoh every single day. He uses construction vehicles, animal figures, cutters, extruders, and toothpicks with playdoh.
  • Thinking putty.  This is along the lines of silly putty but the ones we have either change colors as you warm them up/use them, or are magnetic. 
  • Building with Legos.  He is just now getting to the point where his creations are recognizable.  Today, for example, he made a car to race against his siblings cars. 
  • Magnetic tiles.  He builds construction sites, towers, and tracks for trains to use.
  • Play Minecraft on his Kindle Fire.  Yes, he loves Minecraft.  He uses his Kindle especially during his daily enema because what else is fun to do for an hour on the toilet? 
  • Books.  He likes to have me read to him.  Favorites right now are Curious George and anything with photographs of actual animals (not drawings). 
  • Dirt.  He's a fan of playing in the dirt, though he doesn't like the heat and because he can't sweat due to a medication he's on it makes it difficult to be outside very long right now with temps in the upper 80s. 
Those are the highlights.  We're hoping to get to the swimming pool this weekend if the storms hold off and that will be a new experience for Mason (he was much younger the last time we went).  I have no idea if he is going to like it or hate it.  It will be interesting to find out!

Wednesday, May 18, 2016

Bracing Oh Me Oh My

There are some things that have never worked out easily or well for Mason.  One of those things is bracing.  Mason has three different braces currently. 
  1. Scoliosis brace - this is the one that works well, fits, easily, and we've had no major issues with.  He wears it at night when he is sleeping.
  2. AFOs (Ankle Foot Orthotics) - these short braces look like little boots and hold his feet in a neutral position, keeping the tendons stretched out.  These mostly fit but we are having trouble with pressure on each heel - we needed changes.
  3. HKAFOs (Hip Knee Ankle Foot Orthotics) - these braces go from Mason's waist clear down to his toes in a combination of straps, plastic, foam, and metal.  They hold his body in a standing position but give him no balance.  They are used in conjunction with his Dynamic Stander, a wheelchair that he is upright or standing in.  Why standing? While Mason will never walk functionally standing has many health benefits for his bones and body systems.  This bracing has been the most problematic over the years due to muscle contractures and growth.  It is difficult to fit Mason currently because his left knee doesn't straighten all the way and things apply pressure in weird spots, and sometimes it has been impossible to fit because of foot contractures that keep his foot from going to a flat standing position.  Pressure can damage skin.

We headed to the orthotist yesterday to refit Mason's HKAFOs now that his right foot surgery has been done and healed and to adjust his AFOs. He was excited. As is often the case, this appointment took a couple hours and we will probably go back again for more adjustments in the next 6 weeks.  Here's what was done:

AFOs - both heels got cut out of these.  In their place is a foam-ish structured material (the same as the 'tongue' of the AFOs).  This has some give to it and won't apply pressure the way the plastic did.  I think this will be a good change for Mason.

HKAFOs - so many changes to these.  They lengthened the metal frame because Mason has grown taller.  There was moving the AFO portion, moving various Velcro straps, adding longer strapts, and moving and flaring the blue back plastic portion. 

All of it looks okay at first glance.  We know that usually we need to make more adjustments after Mason has some time wearing them and we see where the pressure points end up being on his body. 

His left knee is contracted, it won't straighten all the way, so it remains a bit bent.  It will probably need some padding to keep it from pressing against the metal bar on the outside.  The other leg stays a bit bent to match and keep from applying torque to his back, so it may need some padding too.  And knee stabilizing straps are possible.  Or a thousand other small and large things!

Once Daddy got home from work Mason wanted to show off the HKAFOs so we got a few cute pictures.  I love this one because it shows just how much upper body and core strength he has been building.  He's not able to balance.  Not at all.  But when daddy keeps him balanced he can lift his arms above his head without collapsing forward at the waist.  Mason looks so tall standing!

The most precious thing that happened I only caught with this blurry photo.  Samuel and Mason hugged.  It was sweet to see how happy they were together.  They just hugged and hugged. Brothers are wonderful!

Thursday, May 12, 2016

Eye Surgery Post Op Check - 3 mos

This morning Mason and I took our hour long drive in to see Dr. G, the developmental opthomologist.  It was time to see how his eyes have healed from the double eye surgery in February.  On our way into the hospital Mason was distracted by the large planters at just his height full of spring blossoms. 

Mason's eyes have healed well from the surgery.  He has more control of the eye movements and focus.  With his glasses they are not turning in.  Now the question is do we remove the bifocal lenses?  Dr. G is not sure.  Mason's eyes are right on the line of needing or not needing the bifocals.  He is in the habit of using them, most of the time.  Our assignment for the next few months is to watch when Mason is doing close up work (playing with playdoh, looking at a book, using the Kindle) to see if he is using the bifocals or if he is looking at things over top of the bifocals (using just the regular lens portion). 

When we go back in August it will be a full exam, eye dilation, and ordering new glasses with a new prescription.  Those may or may not include bifocal lenses, but either way the lens strength will be reduced because he doesn't need as much help anymore.  Hooray! 

Other quick updates:

- Mason goes to the orthotist next week to get refitted for his HKAFO standing braces.  We're hoping they can fit.
- While there we will have the orthotist make adjustments to his AFOs.  One foot is getting too much pressure on the heel from the AFOs so he's not able to wear them 24 hours a day.  We average a few hours in them.  A bit of adjusting and maybe some padding should do the trick. 
- Using the sleeping brace is going fine.  Mason does get pretty warm in it, so we're trying to decide the best way to handle the summer heat at night.  We're in an old house whose air conditioning doesn't reach the upstairs bedrooms.  We use a window air conditioner to cool things down a bit but it's still warm up there all summer.  We may end up putting the window air conditioner in the boys' room where Mason is instead of in mommy and daddy's room.  (The electrical circuits can't handle two A/C units up there.  Drat. Blows a fuse every time.)

- Mason is enjoying the Free Wheel attachment.  He's used it in the back yard to play and at our friends' house during time outside with the goats. 

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!