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!

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!

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!

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!

Scoliosis Brace - Night bending brace

Mason's eye surgery recovery is going well.  He's feeling perfectly normal even though his eyes still look very red.  He is also doing fine on his tendon release recovery and still has a cast on his foot for 3 weeks and 2 days more.  Yep, I'm counting down.  It's hard for him to not be allowed to crawl around, climb stairs, or get himself into and out of his wheelchair or on and off the couch.  We'll be so happy when that cast comes off.

Today Mason got to pick up his sleeping brace.  This is new territory for us and I have no idea how it will go.  The brace basically pushes Mason's spine into proper alignment instead of leaving it curved the way his scoliosis has it.  He wears all night long. 

The view of the back of the brace.

The goal of the brace is to slow down the progression of Mason's scoliosis.  The more his curve increases the more it will affect him physically.  In the end, the curve may reach a degree where we will need to seriously consider surgery to put rods on Mason's spine, a spinal fusion.  That is a surgery we want to avoid for as long as possible, if not all together, because it tends to have serious drawbacks, often including lifelong pain management.  Of course, when the alternative is enduring a severe scoliosis curve that squeezes your organs and damages them or prevents you from breathing fully it makes that surgery a real consideration.  We are not near that stage.

Mason chose the pattern for his brace, happy that it had orange.  He was enthusiastic to try it on.  I'm not sure how enthusiastic he's going to be once he realizes he'll be sleeping in one of these for years, until his skeletal growth is complete. 

I have a few things to figure out now, as always happens with new equipment.

1. I need practice putting his brace on correctly.  So does Daddy.  And Mason.  He doesn't know what it is supposed to feel like, so he can't tell us if we have it not quite right. 
2. I need to find a way to get body socks for him.  They are seamless shirts he can wear under the brace each night. I've found the ones I want online but the company requires a provider code from the orthotist or the orthopedic surgeon.  Of course it is after office hours so I won't be able to get that ordered until next week. I've not found anywhere to order these directly yet, though I'm still looking!  For now Mason is just wearing a regular shirt under the brace.
3. I need to figure out how to handle cathing Mason overnight.  The brace covers the top of Mason's pants and diaper, so I can't just slide the pants off and unfasten the diaper.  Drat!  It may mean completely unfastening the brace every night, cathing, and re-fastening and adjusting the brace without waking Mason.  Another idea I've got is to try putting Mason in underwear with loose fitting shorts (loose in the leg area).  Then I could slide the leg open and use the flap on the underwear to access boy parts for cathing.  ;)  I think Mason is continent enough that this option may work (he does not generally leak urine at night).  We'll see what ends up being the best solution for Mason.

Mason has a follow up with the orthotist in two weeks to tweak the brace if needed.  I've also got a call in to the orthopedic surgeon who ordered the brace to see if they want us to bring it in 3 weeks when Mason gets his cast off.  They probably will want to do an xray while Mason is wearing the brace to check that it is correctly straightening the curve in his spine when he's using it.

Phew!  Lots of little things going on.  Now I'm off to bed.  Have a wonderful week!

Urology Updates

Yesterday Mason had a urodynamics test done at the request of his neurosurgeon.  Urodynamics is a bladder test that checks the amount of fluid the bladder holds before it begins to leak due to pressure.  This is one area that often shows changes when a tethered spinal cord begins causing problems.  The good news is that there have been no changes to Mason's bladder capacity or ability to handle pressure.  They will forward the results to Mason's neurosurgeon, who will then decide what the next step is in the process of deciding if it is time to do another spinal cord surgery. 

We did come home with some changes, however, from urology.  Mason has been growing and because his bladder medication to paralyze the bladder is based on weight it is time to increase his dose.  However they want to switch him from a liquid to an extended release pill because the pill generally has few side effects while increasing the liquid will increase the side effects Mason deals will.  So now we get to try to teach a 4 year old to swallow pills (he can't chew the pill without messing up the extended release).   ***** Edited to update: Mason took his pill in a spoonful of applesauce this morning.  We showed him we wanted him to just swallow the applesauce, he put the pill in the applesauce, and he swallowed, no problems, no chewing.  Yay! At least that was easy.****

Once Mason has been on the new dose of medicine for a week we are also going to measure his urine output for his morning cathing.  They want to see us getting out less than 200mL because more than that sitting in the bladder could increase the pressure enough to reflux urine backward into his kidneys (based on the results of his urodynamics test today, showing he doesn't leak even at 250mL but the pressure increases above 40 at that point, likely to mean reflux is happening at that stage instead of leaking urine).  If he's holding more than 200mL in the mornings we will have to do one of two things:

1. Add another cathing to his overnight schedule.  Right now we cath Mason once in the middle of the night.  We may have to set an alarm to get up a second time.
2. Put a catheter in and leave it in overnight to drain his bladder.  This option is actually my least favorite for a few reasons.  First he would then be laying in a wet diaper all night, which really isn't good for his sensitive skin or for his growing up age (who wants to be in a wet diaper at age 4 or older?).  Second, it would increase the likelihood of Mason getting urinary tract infections (which we've avoided so far).  UTIs are pretty common in people who have to cath and leaving a catheter in overnight leaves a route for bacteria to travel right into the bladder all night long.  UTIs mean antibiotics.  Frequent antibiotics mean a messed up digestive system and building a resistance to antibiotics that you may actually need later on for more important things like serious illness or surgery recovery.  Yep, I'm a bit opinionated on this one.  Obviously we'll be going the getting up extra in the middle of the night to cath route if that is needed. 

So there are this week's updates!  Next week Mason has his PT evaluation to get a plan in place for working on core strength and ultimately on OT skills like putting on and taking off a shirt, drinking from a cup without falling backwards, etc.  He also has his casting appointment with the orthotist who will be casting his trunk and making a custom back brace to sleep in. Hopefully we will also hear from the neurosurgeon next week with his plan for the next step related to Mason's tethered spinal cord.

Merry Christmas and Updates

The year is nearly over.  We have been enjoying lots of family time during the Christmas season.  This is a picture we took of the kids Christmas morning. 

One fun memory of Mason I want to record here:  This year he has been adamant that we bake a cake to celebrate Jesus' birthday (Christmas).  Even better, he is sure that Jesus loves chocolate cake the best - so that is what we needed to make.  It was delicious and Mason loved helping to mix the ingredients.

Mason continues to have a few concerning issues and we have appointments coming up for those (vision/eyes, foot contracture) as well as checkups with his entire team of specialists all in the next few weeks.  Developmentally, however, he's doing fantastic.  We are getting ready to celebrate his birthday and I'm not quite sure how he's about to turn 4 years old!  He is articulate, opinionated, and funny.

The most recent medical happening was last Monday when he had his next IV infusion for his osteoporosis. He does really well with the medication, which we are grateful for.  It did take 4 attempts before they were able to get an IV started, which stinks.  His veins are just not great, no matter how hydrated he is.  We always make IV attempts in his feet first so that he doesn't feel it.

I'll update again soon!

Mason is a Big Brother Again!

Three days after my last post Mason became a big brother again.  I gave birth to Tobias Keegan after 10.5 hours of labor (my shortest!) and he weighed 9 lbs 5 oz (my biggest!).  We have been settling in as a family ever since.

Mason is a great big brother.  He loves holding Tobias, talking to him, and giving him kisses. 

Tobias is a sweet, easy-going baby. 

My recovery has been steady, with no surprises.  I'm mother to nine precious children of God - I'm blessed!

Quiet Blog, Quiet Life

Honestly, I have been slack on blogging here but have no huge updates.  I'll try to hit the main things:

1. Mason is in good health generally.  He's happy, growing, learning, and so full of personality.
2. He still has occasional headaches.  We wonder if they are related to his bifocals.  Neurosurgery checked him over and the shunt and everything else looks fine.
3. Bowel management (enemas) is going great.  We've moved his enema to afternoons instead of evenings and love having our evenings free for family time and relaxing.  He is generally cleaned out well with the balloon enema and has no accidents.  It takes us about 50 minutes from starting the fluid to getting off the toilet.  He does still require miralax daily for the enemas to be successful (keeping poop soft enough that it will come out). 
4. Feet/legs and bracing - This is one area things are not working in.  He outgrew the standing braces (HKAFOs) but at the same time his right foot has contracted and so his shorter braces (AFO, begin just under the knee) don't fit either.  And the bracing doc can't fix braces enough for that, we're needing to see his orthopedic surgeon and possibly looking at another surgery to release that foot tendon again.  As I'm having baby #9 this week we've chosen to wait a bit on pursuing the appointments that will lead to that decision, we'll revisit it come January and are working on stretches to see if we can change things in a good direction with the foot instead (which is what his surgeon prefers we try first). 
5. Mason's osteoporosis has improved!  We had his yearly checkup with the nephrologist and a bone density scan and while his numbers are not yet normal, they are better.  We will continue the IV infusions of Zolodronic Acid, spacing out to every 4 months instead of every 3 for the next year. 
6. Large Motor Development - Mason is at a pretty stable place right now.  He can climb into and out of his wheelchair, climb a flight of stairs, get into and out of chairs/on and off furniture, and shows large amounts of strength in upper body.  His balance when sitting is decent, and we don't expect it to improve beyond what he can already do.  He generally can do anything he really wants to do, whether using his wheelchair or not, and if he can't figure out a way he is not shy about telling us what he wants to do and insisting we pick him up/carry him/ help him. 

I think that's it!  He currently loves pirates (Jake and the Neverland Pirates, Peter Pan, and pirates in general), is beginning to enjoy building with Legos, still loves playdoh, and talks up a storm.  He sleeps through the night in his toddler bed (we cath him at midnight but he sleeps through it).  He does not like loud noises (very normal for someone with hydrocephalus and a shunt) but he does like music and dancing if the music isn't too loud.  He does not like to sing.  He does like playing instruments (we have piano and guitar) and is asking for drums for Christmas.  We'll see...

Visiting Caves and other Updates

 

A fun note - we went to some caverns about an hour and a half away from us on Labor Day.  Only 1/3 of the hike is wheelchair accessible so after the first portion Mason rode through the rest of the caves on my back using our Ergo carrier. 

Yes, 8 months pregnant me.  It was easier for me to do that than chase my 2 year old through the caves.  I left that job to my husband. Mason's eyes are closed in this shot because of the flash - it was bright after being in the dark caves for a while.  ;)  The pictures in this post are from that day in the caves.

Life moves ahead with the usual cheerfulness on Mason's part.  He is having headaches occasionally and we are not sure why (we visit the neurosurgeon next week).  He has outgrown his AFOs (short leg braces) and HKAFOs (standing braces) so I need to get appointments set to work on those.  In other words, things never stay the same and he's growing.

Bowel management goes relatively smoothly.  We are navigating the waters of getting settled with a new medical supplier for his enema supplies (their first shipment sent us one item of the 10 we needed -- and it was latex so he can't use it!).  He is almost always poop accident free now - which is wonderful. 

He will also visit his nephrologist later this month to have a bone density scan and see what the results of his first year of IV infusions for his osteoporosis are.  We will make a dosage and frequency plan from there (more or the same dose, IVs every 3 months or more or less often). 

Also, one more note - I have had to close the comments on this blog due to spam comments full of hatred for our pro-life (even in the case of disability) stance.  It's sad that people feel that way because all life is precious.  Hopefully they will continue to read Mason's story and find their hearts changed.

A Quiet Blog Means...

Life has been moving along on a pretty even keel.  Mason really has not had any major medical changes.  He had his 2 month checkup last week to see how the new glasses are working out with the bifocals (just great, he learned to use them with no problem).  Urology has some checkups scheduled near the end of this month because he is leaking more often between cathing.  We want to check bladder pressure, look for reflux, and see if it is time to increase his dose of Ditropan. 

The big news is that this week Mason begins Bowel Management Clinic!  Basically, while Mason has a bowel management program that works (cone enema nightly paired with daily dose of Miralax), we are wanting to see if there are any ways to tweak this to be more effective for his body.  Right now our enema gets poop out IF:

1. His poop is soft - thanks to Miralax.
2. He coughs or does other abdominal tightening pushing to actually get the fluid and poop to flush out.  If he doesn't cough the fluid will leak out in bits but not with enough movement to bring the poop along with it. 

So we're hoping to use a different solution in the enema (something more irritating to his colon to hopefully provoke it to actually do some rhythmic contracting to move things out).  We're also hoping to try a different setup than the cone because the cone has to be held in place by mom/dad and we want to work toward something more independent for Mason to use.  There are a few possibilities so I don't know what we will end up with. 

I'll update more as we get through clinic!

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. 

We 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.
There 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.    
The 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. 
When 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.

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!

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.

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. 

Happy New Year!

Life is happily moving along here. Mason is healthy and doing well in general so there has not been much to share. We do have an appointment tomorrow related to his bracing but nothing else on the horizon. I just wanted to pop in here and say Happy New Year from my family to yours!