Mason - A Good Update

Just a moment to update – Mason does NOT have bone cancer. We’re praising God for health in this one area. The area on the xray is the remodeling of a bone callus from the broken leg he had 2 years ago. Thank you all for praying!

Prayer Request for Mason

The last few days have been very busy for Mason! Friday he had Myelo Clinic and saw many of his doctors. We went with a few questions and got various referrals or answers. Then today we had a checkup with colorectal who he sees for bowel management. That triggered an unexpected result - another appointment with the words 'bone cancer' at the top of the reason list.

The abdominal x-ray that was done for colorectal just happened to capture a partial image of his thigh bone and it is suspicious enough that his orthopedic surgeon wants to do full x-rays asap. There are other possibilities, this is an area where Mason broke his femur 2 years ago so it may just be a bone callus. We don't know yet. Prayers are much appreciated! We're trusting that God knows what is going on and praying that x-rays will show no problems. I will update later this week when we know more, and sometime soon I'll share details about Myelo clinic too.

5 Years Old - Mason's Favorites on his Birthday

I decided to interview Mason for his birthday. He's 5 years old today. Enjoy his list of favorites!

Breakfast: Nutella Sandwich
Lunch: Pancakes with bacon or sausage
Dinner: Spaghetti and meatballs

Favorite Movie: Angry Birds Movie
Favorite Cartoons: Looney Toons, Jake and the Neverland Pirates, Paw Patrol
Favorite games: Minecraft, Settlers of Catan Jr.
Where do you like to go? To the zoo and COSI.

What toys do you like to play with? Legos, playdoh.

Favorite song: The Shepherd's Carol, I am a Child of God
Favorite book: Curious George, Three Little Dinosaurs, Peter Pan

What do you like to learn about? Science, especially the experiments.

Favorite animal: Cows, gorillas, cats, and giraffes.

Osteoporosis Checkup and almost birthday time!

Mason had a great holiday season. Family time, parties, church, book club, art class, and homeschooling filled the season. He also started physical therapy each week with a walker. His birthday is on Wednesday. I'm not sure where the last 5 years have gone but this sweet boy is a joy to know.

In medical land he had his yearly checkup last week for his osteoporosis. The DEXA scan shows that his bone density is better than it was a year ago - hooray! It also is still in the negative numbers so we will keep going with his infusions. I am waiting to hear from his doctor whether he will continue with IVs every 6 months or if we will space it out further.

On the same day he had his DEXA Mason had his IV infusion. He and I got to watch a couple movies and eat lunch while the medication was going in. He's a trooper.

Later this month he has appointments with colorectal and his full team appointment at Myelo clinic. Next month he'll see his orthopedic surgeon for a check up on his scoliosis. It's that season again where we evaluate what is working, what is questionable, and hopefully this time around we'll have nothing unusual going on!

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!

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. 

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!

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!

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.

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.

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.

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.

Nope. 

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. 

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!

One Surgery Down, More Next Week

When I last wrote we were waiting to see the neurosurgeon about the possibility of a tethered spinal cord for Mason.  That appointment went well, the surgeons involved in Mason's care had a consultation and decided they do not think his variety of symptoms was related to needs his spinal cord detethered at this time.  That meant a week and a half ago Mason went ahead with surgery to release the tendon in his right heel (instead of putting that surgery off). 

Surgery day ended up being a bit stressful.  Mason was laid back until we went to the operating room.  Then he was a bit nervous so he and I went around the operating room exploring.  Once we did that he settled and I sat him up on the table.  The anesthesiologist handed Mason the mask to explore that would help him fall asleep.  Then Mason decided to hold his own mask to fall asleep.  Usually the anesthesiologist holds it over your nose and mouth and holds the back of your head too so you don't move away from it (for kids).  Nope, Mason just held it while I held him, and to sleep he went.  The anesthesiologist was shocked. 

After surgery we actually got admitted to the hospital because his foot wasn't tolerating the cast so they wanted to observe him for a few hours.  We were supposed to be outpatient.  They ended up bivalving the cast (cutting it) and we did get to go home late that evening. 

Since then things have gone well.  Over the first weekend we had to keep Mason mostly laying down with his cast elevated.  Yeah, not so easy when he came home with ZERO painkillers because he doesn't feel any pain in his feet and legs.  He can't tell he just had surgery, they cut clear to the bone, and other than seeing there is a cast on his leg he feels normal.  After the first three days Mason was allowed to begin sitting up and using his wheelchair.  He is still not allowed to crawl around or climb, so we're doing a good bit of keeping him busy.

He'll have a checkup on Wednesday.  As far as we know the plan is to keep this cast on for 6 weeks from the surgery. 

Next Monday Mason has a double eye surgery.  They will cut and reattach one muscle on each eye to a new position to help with the eye crossing he's dealing with.  Recovery for that is supposed to be pretty easy, eye drops for a week and that's it. 

Right after the eye surgery, while Mason is still under anesthesia, the doctors will do a full spinal MRI.  We're getting a good picture of the spine and spinal cord so we can compare images in the future when he has new symptoms of a tethered cord.

In other news Mason and I go weekly to physical therapy to work on his core strength.  He's a trooper, working really hard and cheerfully doing all we ask him to try.  Basically, each exercise is couched in play and games.  He uses toys, an exercise ball, an exercise peanut, and a tumbling mat to sit, turn, stretch, reach, twist, bend, lift, and crunch. 

We got word that Mason's back brace that he'll wear when sleeping is ready for a fitting, so that is scheduled for the Friday after eye surgery.  I'm praying that Mason tolerates wearing it and adjusts without too much trouble. 

Mason Updates: Surgeries Scheduled

While we don't have all the answers yet to issues Mason is facing we do have some updates so I thought I would share in this very quick post!

• He is scheduled for foot surgery just before Valentine's Day.  Basically, his right foot tendons have tightened up again and so his foot points similar to a ballerina dancer.  Mason had this surgery done once before (along with a hip tendon release).  This time our orthopedic surgeon will be more aggressive in how much he cuts the tendons.
• Mason will have his double eye surgery not quite a month later. 
• He has his evaluation to make a plan with a physical therapist in a week. 
• For Mason's scoliosis we're having a custom brace made that his orthopedic surgeon wants him to sleep in at night.  This will not 'fix' the scoliosis and reverse it.  The goal with the bracing is to slow the progression of his curvature.   
• We also are investigating the possibility of a tethered spinal cord - first test is this Thursday: Urodynamics.  Often one early symptom of tethered cord issues is seen as changes to the bladder's function.

So there you go!  Life is moving swiftly and we are going to roll with it. 

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.