Wednesday, April 29, 2015

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!

Tuesday, March 10, 2015

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.

Saturday, January 10, 2015

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. 

Thursday, January 1, 2015

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!

Friday, December 5, 2014

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!

Tuesday, December 2, 2014

Wheelies, Picking up Toys, and a Video

How about some Mason updates? 
My cutie pie is growing and learning new things on his own schedule.  The newest skill is likely to give me gray hairs - wheelies. 

That's right, Mason is a little daredevil.  We've raised his anti-tip bars to accommodate his wheelie fun so he can tip further back. 

While these pictures are cute, wouldn't you like to see a video?  Mason was happy to do one this morning.  Enjoy!

I also had someone ask about if Mason can pick things up from the floor when in his wheelchair.  The answer is it depends!  If he has his tray on the wheelchair he cannot reach anything on the floor.  However when the tray is off he can lean down to grab things so long as they are not flat on the floor.  So a toy car would be easier to pick up than a piece of paper. 

 He was feeling extra cooperative this morning when I got the camera out so I got a few pictures of him picking up toys from the floor. 

Here is the first toy pickup.  It was pretty easy, a Duplo tree that is a few inches tall.

The second was a Duplo train piece, shorter to the floor and therefore harder to reach.  As you can see, he is able to reach to the floor, thank goodness for seatbelts!  He uses his wheel or armrest with the hand not holding the toy to help sit back up because his core is not quite strong enough to do it without one hand helping.  We're working on those muscles!

Wednesday, November 26, 2014

Mason's Getting Stronger!

Things for Mason have been fairly quiet since I last posted here.  He breezed through the week following the IV infusion of osteoporosis medication with mild symptoms.  At the same time I, Mason's mommy, have been dealing with my own medical emergency, which you can read more about on my regular blog here and here.  As things have settled down we have been thrilled to see Mason making a lot of progress in his physical development. 

If you remember, months ago Mason had tendon surgeries for his right hip and heel.  Two months of casts and broken bones from those casts later he was finally able to move around again, only to discover he had lost both strength and ability.  The cut tendons in his hip have affected his ability to move that hip/leg.  The lost strength in combination meant my sweet boy could no longer climb up steps, transfer into and out of his wheelchair, or do anything using similar muscle work.  We have done weekly physical therapy with a new PT and developed some exercise play routines here at home with the therapist.  Mason's hard work is paying off! 

Here he is, climbing our flight of 13 steps so he can go play upstairs in the bedrooms.  Without help (other than a spotter to make sure he doesn't slip and fall).  He's so proud of his ability.  He loves the freedom to go play upstairs without being carried there, especially right now as the large tub of Legos have been brought out of the attic.

Unfortunately for this momma heart he has also decided he can climb DOWN that flight of 13 steps, so I regularly hear him calling, "I come down.  Legs, mom.  Legs first."  Then I rush over to find him backing up on his belly to go down legs first.  He's getting better at it.  At this point he needs someone with him for every step down because if he gets distracted he starts moving too fast and his bottom moves faster than his legs and then he falls backward.  Where we catch him.

I know in my head this growing independence is a good thing.  I cheer him on.  He's learning to do things we want him to do.  I just wish he were in a padded suit while attempting them!