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. 

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.

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...

Myelo Clinic Today

Today was Mason's full team appointment at Myelo clinic.  Every 6 months he has this long day of checkups and testing to keep track of how he is doing in a variety of areas.  I thought I would share a few of the highlights for those who are wondering how he is doing at age 3. 

Developmental Pediatrics - According to this doctor Mason is doing great in overall development (outside of those pesky physical milestones like walking that he'll never accomplish).  He's speaking, figuring, sitting, playing, and progressing.  Yay!

Physical Medicine, Physical Therapy, Orthotist, Wheelchair Fitting, and Orthopedic Surgeon - I'll cover these three together because they are interrelated in some ways.  We came to clinic with all Mason's equipment (wheelchair, AFOs, stander, HKAFOs) and some questions. 

1. How can we help Mason learn a safe way to climb down to the floor from his wheelchair?  Currently, if he climbs down by scooting forward onto his footplate and then to the floor he scrapes his back (right across the large scar where his back was open at birth).  This is bad.  So between the specialists the current plan is two-fold.  First, we'll work on teaching Mason to turn around in his seat and climb down backward like he does climbing down the stairs.  The difficulty is maneuvering the lower half of his body into the right path (because he can't feel anything) and not hurting his knees when they come down onto that hard footplate.  We'll work on it at home and then if we can't get a good climbing pattern figured out we can access physical therapy for some help.  The second part of the plan is that our wheelchair company is creating a padded footplate for Mason's wheelchair so it won't be so hard on his knees or back when climbing down.  We have to be careful that it doesn't interfere with his ability to climb UP though. 
2. Do we need to add a heel/wedge to Mason's HKAFOs or one shoe?  His legs are not even when in a standing position, partially due to the small contracture of his left knee from the large callus that femur made when he broke the leg last fall.  Partially it is due to his hips, which are a bit unevenly seated in their sockets as well.  What this means is when Mason uses the HKAFOs in his stander he still gets a red pressure mark on that thigh that no matter how many times we've adjusted the HKAFOs we can't get rid of.  This limits his time standing.  The standing is part of our treatment of his osteoporosis, helps his bowels function better, etc.  We really need the standing and would like to be able to do it for 2+ hours per day.  Right now we've only been able to do about 30 minutes at a time before the pressure happens.  The current plan is to try adding the insoles back to one shoe to see if it helps.  We can call the orthotist to get a heel added to things if this isn't effective.

Occupational Therapy - Mason passed all of this with flying colors.  Basically she evaluates fine motor control and feeding difficulties.  He colors, draws, stacks blocks, threads large beads on string, etc.  I knew he was fine in this area already. 

Urology - Today Mason had ultrasound done to check his bladder and kidneys. The scans showed that they are stable - which means what we're doing is working.  We continue with his current medication and catheterization schedule.  We also discussed enema options with urology.  What we are doing is working well (cone enema).  That is great.  However in the future we know we want to transition to a different enema setup that is more independent for Mason to do himself.  They referred us to the Colorectal specialists to begin that evaluation and process.  (For those in the know, we're looking at the Peristeen system. Many people around the country travel to Cincinnati Children's Hospital for their week long program but we're blessed that one of the main doctors from that program is now heading things up at our hospital. ) 

Mason busy making friends.

Orthopedic Surgeon - Yes, this is the second time I'm mentioning this doctor.  Why?  Because we have a separate issue that we will be watching with just them.  Today they sent Mason for spinal x-rays to check the curvature on his spine.  Developing scoliosis is something that in not uncommon with Spina Bifida, especially with Mason's level of paralysis (incomplete T12).  Today we saw that he does have a curvature beginning but it is below 10 degrees so it is called Mild Spinal Asymmetry.  If it increases to more than 10 degrees it will be scoliosis.  For now we will track this every 6 months.  If the time comes that his curve increases we have a variety of treatments depending on how severe the curve becomes (from bracing to spinal surgeries like a fusion or having rods placed). 

Well, those are the major things from today! Next week he has his vision checkup with his developmental ophthalmologist.  He's hoping to choose new glasses - I'm wondering if he'll try a different color. Overall Mason is a happy, growing little boy who is busy enjoying life.

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.

New Equipment for Mason

Yesterday Mason finally got his bracing!  He now has his very first pair of AFOs (Ankle Foot Orthotics) as well as refitted HKAFOs (Hip Knee Ankle Foot Orthotics).  The AFOs are green with dinosaurs on them.  Their purpose is to help maintain Mason's heel tendons stretch, keeping them in a proper position so they hopefully do not tighten and need surgery again.  Right now he wears them for an hour a day, with the goal being to work up to most or all of his waking hours. 

The HKAFOs have a different purpose.  These Mason had a long time ago but became unable to use when his tethered spinal cord caused contractures to his hips and feet.  The surgery road to fix all of that took over a year and a half because of unexpected complications.  Now that things have stabilized we're working to get these fitting properly again.  Why?

 

Because Mason has no ability to bear weight with his legs.  The HKAFOs hold his legs in proper position for standing.  The benefits to standing upright include strengthening his leg bones (which already suffer from osteoporosis so this is very important) and improving his bowel function (which can use all the help it can get). There are some developmental benefits as well. 

The down side to the HKAFOs is that Mason has no balance because of his level of paralysis.  He literally needs someone holding on to him to keep him from tipping over at all times. 

 

Enter Mason's Rifton Dynamic Stander.  This wonderful piece of equipment has straps that keep Mason from tipping over while in his HKAFOs.  It also has wheels that offer him the mobility of a wheelchair while he gets in his time upright.  The goal is to get several hours upright every day.  Right now he does 10 minutes.  It seems like such a short time but we are needing to make more adjustments to the HKAFOs and 10 minutes is giving us a good look at places where the pressure isn't right so we know what adjustments to make.  Next week we go back to the orthotist for round 2 of HKAFO adjustments. 

All these explanations are great but if you're like me you want to SEE Mason using the stander, right?  This is from today:



Mason does not remember using a stander before, so I wasn't sure what he would think of it.  He loves it and asks to do it all day long.  It is really hard to tell him that he can't yet, because we're still working to get the perfect fit on his HKAFOs!  I also thought some of you would enjoy this video because you get to hear a good bit of Mason talking.  He's such a chatter box!  I love my little man!

Myelo Clinic and Mason Care Updates

Friday Mason headed back to Myelo Clinic for a wound checkup.  I was not sure what to expect for two reasons:

1. It seems about the same to me, not worse, not better.  I knew it was not going to be a noticeable change because this is something that will take a long time to heal completely but I had no idea if it was doing better. 
2. Thursday morning I changed what we were doing for Mason’s wound dressing based on Mommy intuition without checking with the doctors.  The plastic over duoderm over actual bandage/dressing was hot, sticking, and when you changed the many layers there was a rash under the duoderm.  So I got rid of everything but the actual gauze bandage with minimal tape.  Would they tell me I was making things worse?

It turns out things look fine, I was right to stop the plastic and duoderm layers, and we’re to continue with just the gauze and tape.  We are to change the gauze/tape at every diaper change, spray with KeraCleanse and fill the wound with the Kerasanz gel.  They will see us in 3 weeks and we’ll go from there.  It is likely to be a few months before this heals completely but we’re on the right track.  The rash – it’s yeast from the extra layers so we’re using Nystatin cream twice a day to clear that up.

While in Myelo clinic we worked on a few other things so let me explain those too.

First, we got a prescription written for Mason to get a new set of HKAFOs made.  His are too small now.  If you remember last time he had to get casts done for each leg/foot as well as his back/butt/abdomen.  Then they custom make the pieces which takes several weeks.  Monday I’ll be calling the prostetist/orthotist to get the measurement and casting appointment scheduled.

Next we chatted with the ‘poop lady’.  We’ve adjusted Mason’s miralax dose so that his poop is no longer super soft/unformed because we want to keep poop off the bandage.  Unfortunately, just like I told them, he can’t poop on his own if it’s solid at all.  They sent us home with a cone enema kit and we’re beginning nightly enemas for Mason. 

What’s a cone enema?  Basically you put a liquid solution (ours is water and mineral oil) in a bag attached to a tube that goes in Mason’s bottom.  Because Mason has no muscle tone to hold the fluid in and allow it to work there is a rubber cone at the end of the tube.  It is inserted a bit into the bottom and when we close the tube’s lock it acts as a stopper to keep the fluid in.  Remove the cone and the fluid all comes back out, hopefully with the poop. Again, the no muscle tone means we have to sit there and hold the cone in place for him for the five minutes, it won’t stay on it’s own.

We’re still trying to figure out how to do that on a potty with a child who can’t balance well enough to sit there, especially when we need to have access to his bottom to hold the cone in place.  So far it takes Daddy and Mommy both.  I’ll spare you the messy details for now, I just hope we get a routine going and this becomes easier SOON. 

In case you’re wondering: Mason thinks it is all really fun because he’s on the potty in the bathroom, a novelty for him.  And he gets mommy and daddy’s undivided attention so it’s even better. 

We also had an evaluation with the occupational therapists at Myelo clinic.  It had been over 6 months since our last eval.  Mason has made huge strides since then, such as actually eating solid food by mouth.  He is also not where they expect a child to be in using both hands simultaneously because, of course, he still struggles with balance and core/trunk strength.  They are pleased with the progress he has made and said to keep doing what we’re doing. 

All in all it was a good visit.  We got to meet a little guy about Mason’s age and they played together (wheelchair bumper cars – too cute!).  We got things accomplished and I came home feeling like the visit was helpful even though it added more ‘special needs’ medical care to our daily routine with the enemas. 

More Standing and Many Straps

Ahh, my sweet little man has been a busy boy this week.  He got another tooth (#3), has been eating purees more consistently, and loves being in the HKAFOs and dynamic stander.  He thought he was big stuff this evening with measuring cups and a spoon to stir with.  Then he started being silly, bending backward to see what was on the ceiling.  Other than some cobwebs there isn’t much to see.  I finally got a decent picture from the front of Mason in just his HKAFOs.  I thought I would walk you through the straps we have to fasten.  All use velcro.

First is the waist.  This is the easiest by far because it is large and on the side of his body.  Then going down his legs are thigh cuffs, with loops to slide the velcro through on his inner thighs before folding back to fasten.  On his right knee you’ll see a strap that is not on his left.  This has a loop to slide through on his inner thigh toward the back off the leather of the thigh cuff before fastening back on itself.  It’s the hardest to get in quickly.  This one provides a little backward pressure and a good amount of sideways pressure angling that knee back into position.  Next both legs have calf straps, simple to fasten.  Finally we reach his feet, where the strap for each must be looped criss-cross around under the foot before fastening behind his ankle.  Phew!  Once he’s in there he’s not coming out.  Mason really dislikes the time it takes to lay down while we fasten all those straps, but once he’s in and upright he’s happy. 

We’ve worked up to being in the braces/stander for about 40 minutes at a time.  Yay!  

Standing Up–HKAFOs for Mason!

Today Grandma came over to watch the siblings while Mason went to get fitted for his HKAFOs.  Remember last time we had to come home without them because things needed changed and customized.  We started out relaxing and looking at books until the orthotist arrived.  Much to our surprise he had taken the time to put the AFOs and plastic for the back on to the frame already, saving us some time.  Just a few minutes and this is what we had:Mason wasn’t sure about it all at first but he quickly decided standing was better than he thought.  He had been crying when we laid him down to strap him in.  He stopped shortly after he realized he was upright.Only one thing stood out as needing adjusted.  If you look closely at this picture you see Mason’s right knee is bent forward.  Apparently this joint is looser and needs extra support.  We played in the brace for a while so a special strap could be crafted.  Then we had to give up the brace so the new strap could be riveted in place.  It worked perfectly and we were on our way home!Mason’s siblings had many questions when we brought the HKAFOs home.  Why does he need them?  What do they do?  Can they have some cool braces too?  I love the enthusiasm and easy acceptance children have of new things.Mason got to play standing up at the couch for the first time.  It was sweet to watch him enjoy new things.  Doesn’t this face say it all?  He was thrilled to be standing.Here is a closer look at the fun design on the plastic portions of his HKAFOs. 

Where do we go from here?  Well, we don’t know.  We have our Physical Therapist in next Monday and she’ll help us set some goals on how long to use the HKAFOs each day.  Until then we’re doing 15 minutes a few times a day.  After each turn we have to check all of his skin to see if any places are rubbing or putting pressure on Mason’s skin. 

What are some of the benefits to Mason with just standing?

• Strengthening his bones.
• Working core muscles and balance in a new way.
• Developmental strides as he sees and interacts with the world from a new perspective.
• Improved bowel movements.

That’s what’s new in our corner of the world!