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!

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. 

Mason's Eyes...

In the last month we have noticed Mason's left eye turning in even with his glasses.  We went today for an early exam with his developmental opthomologist to get things checked out.  It turns out Mom is always right. Yes, the eye is turning in more at all levels (looking far away, medium distance, and close up) and the other eye is beginning to. The issue is muscle control - his is deteriorating.  The glasses he wears can't fix that. Right now we have two options:

1. Wait 4 months and check again, see if it stabilizes or continues to deteriorate. It is not affecting his vision quality yet, meaning that when he does manage to control the muscles he can see fine. But if it deteriorates more it will begin to affect his vision quality too.
2. Eye surgery on BOTH eyes. There are 6 muscles controlling your eye and he would have surgery on one muscle for each eye. It is an outpatient procedure and as far as surgeries go is a relatively easy recovery. School age kids typically go back to school the day after surgery. Eye drops for a week during recovery. That's it. It would improve control so that the glasses would work, possibly eliminating the need for bifocals, but probably not, he would still need basic glasses for sure. About 30% of kids go on to need a repeat of the surgery later on years down the road.  The risk from this surgery, which they always have to tell you, is if he gets an infection it could cause permanent blindness.

Our plan is to wait a week or two until we've seen all Mason's other specialists (Myelo clinic is next Friday)and scheduled any surgeries from those doctors.  We expect at least one surgery with the orthopedic surgeon to be planned.  Then we will schedule the double eye surgery around that. 

We are not surprised by this news.  We knew we were running out of options for Mason's eyes.

2015 was a surgery free year for Mason. 2016 ... not so much. If we end up with one with ortho and this one with opthomology he'll be at 16+ surgeries.

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...

New Glasses Time!

Mason's new glasses are in!  This time he chose black frames.  He is also sporting bifocal lenses.  So far he doesn't seem to mind the bifocals so I'm hopeful that he'll adjust to using them with no problems.

We are also having new lenses put in his orange frames so those are away being done now that we have the black ones in.  Then he'll just get to choose which color glasses to wear each day when he gets up.

He is handsome as usual!

Glasses and a New Accessory

 

Mason painting.

We've had Mason's new glasses for over a week and they're working beautifully.  He adjusted to wearing them with no trouble.  It has been amazing to watch the difference wearing glasses makes - his eye almost never turns inward when he is wearing them.  Take the glasses off and his eye begins crossing within a minute.  I'm grateful for simple solutions!

At the DMV last week I got a new accessory for the van.  It's something I never expected we would need, another change that came with Mason and his wheelchair.  The kind lady behind the desk nearly broke my heart.  "This expires in 5 years.  Hopefully your son won't need it by then."

How do you explain to someone that your child will never walk?  Permanently disabled is not something that should describe a 2 year old and yet it describes my son. 

Usually that doesn't register in my mind, we are so busy living this wonderful, messy, normal life.  Mason is the typical two year old who charms you to get what he wants, has the occasional tantrum and tears, and gets into everything not bolted down.  He is smart.  He loves Curious George.  He likes books.  He laughs and smiles and has favorite songs he wants you to sing twenty times in a row. 

I haven't used our new accessory yet. I'll be hanging it Thursday when Mason and I head to Children's Hospital for his Brain and Spine MRI under general anesthesia. I hope it feels just like any other day but I'm afraid another little piece of my heart will break because of it.  On a day when I'm already overwhelmed at what we are facing, a day when results will decide when we go in for a surgery that could change our lives, I don't want one more thing to remind me how different our life is. 

Instead of worrying about what is coming I'm choosing to focus on today.  And right now that means a little man who has escaped up the stairs again and needs removed from the bathroom before he plays in the toilet.  Again.  Boys!

A Handsome Mason in MiraFlex Glasses - The Color Reveal

 Today Mason and I headed to Children's Hospital nice and early for a few appointments.  First up was Dr. P the Plastic Surgeon.  While in the waiting room he was happy to see Curious George on the tv.  That is his absolute favorite cartoon.  It worked out well because they were having trouble with the computer and we had a long wait to get back to see the doctor.  Mason had a small area open up on his healing incision on his bottom after our last appointment.  Right in the middle of the opening you could see a stitch.  As we suspected, his body is just trying to get rid of that stitch and once it dissolves he should heal up, no worries.  I'm glad things are going so well.

Next we headed to the 4th floor to pick up Mason's glasses.  We got replacement frames for the original 2 pairs he broke, but the big excitement of the day was that Mason's new MiraFlex glasses were in.  We put them on and he's been wearing them happily ever since. Yes, he chose the orange frames.  Was there ever any doubt?  This boy loves orange!

As you can see, these are held on with an elastic strap.  It goes down along his hair line and doesn't bother him at all.  It is adjustable and also snaps on and off the frame.

These frames are very flexible and have no hinges.  If they get bent out of shape a bit too much we can simply use a hair dryer to soften the frame enough to bend it back. 

 

We are home now and Mason was thrilled to learn he can play upstairs out of our sight now.  With the other glasses he could all too easily take them off and break them so he had to be close by all the time.  These are much more difficult to take off and even if he does get them off, they're unlikely to break.  He had a quick snack and took off up the stairs.

For the moment Mason's health is stable and we're enjoying each day.  We have a big surgery coming up but I'm doing better at leaving that burden in God's hands for today.  Mason has a sedated MRI of the brain and spine in March and that will determine surgery dates.  His shunt seems to be working well at the moment.  His leg and hip contractures are getting worse but there is nothing to do about it until after the spine surgery.  His vision issues have been addressed.  I may have time to take a breath or two before the next medical whirlwind begins! 

Are you new to Mason's blog?  Do you have any questions about him, about Spina Bifida, Hydrocephalus, or anything else?  Feel free to leave a comment asking your questions and I'll do my best to answer them. 

The Glasses Saga Continues!

Mason broke his second pair of glasses Sunday.  Daddy was able to glue them together so he can wear them while we wait for frames to come in.  One side just won't fold shut now.  Mason really is getting used to his glasses.  He takes them off a few times a day instead of every ten minutes and we just put them right back on.  You can see a difference in his eyes - they don't cross hardly ever when the glasses are on. 

Monday Mason and I went back to Children's Hospital to visit the eyeglasses shop.  After chatting with several families who have had toddlers in glasses we decided to purchase MiraFlex frames for Mason.  Insurance doesn't cover them but after seeing, holding, and bending them around I have high hopes that they will end up lasting. 

We chose this rectangular frame shape for Mason.  One different thing about the MiraFlex frames is the elastic band that helps keep the glasses in place.  Like everything else it will take a little adjusting to get used to. 

They have a handy key ring full of color samples for the MiraFlex glasses.  It reminded me of the paint sample key ring we used when ordering Mason's wheelchair.  He loved playing with the ring. 

After a few minutes I asked the lady we were working with to bring over MiraFlex glasses in about 6 or 7 specific colors.  Basically, I narrowed it down to colors I could live with (removing things like pinks and mint, or various shades of brown when one would work).  Then I asked Mason to choose which color he wanted his glasses to be. 

"You're not really going to let him pick the color, are you?" she asked.  Of course I was!  I narrowed it down, made sure I could live with the six or seven colors I had her bring over, but the final decision is Mason's because he is the one who will wear them. 

 

He had a definite opinion on the color, as you can see.  Any guess as to what color he chose?

Now we wait for the 2 replacement frames and the new MiraFlex glasses to come in.  They should all be ready by the end of the month and then we'll go in, have lenses moved from broken frames, get everything heated and bent into shape, and be ready for more cuteness.

Broken Already - Of Course!

Oh yes, he did!  First pair of glasses broken in 1.3 days.  Love this boy! 

So glad we bought a second pair.  2 week wait for new frames to come in.  In the mean time we're also looking into Miraflex frames on the recommendation of a SB buddy.  Why didn't the optical place suggest them first?  I have no idea!  Grrr.  And who thought glasses were a good idea for a 24 month old?

Mason in Glasses!

 

Today was a big day for Mason - glasses day!  He's handsome and rocking the studious look.

 

 

Why yes, he really is that adorable.  I noticed that too.

 

The whole time we were at the hospital he left the glasses on (we had two appointments). 

 

 

This is the face he makes when he finds the elevator.  It is his job to find the elevators we need and he takes that pretty seriously. 

 

In other news the healing of his bottom goes well and the plastic surgeon doesn't need to see us for a whole month.  You have no idea how exciting that is!  We have been making a weekly trek in for silver nitrate applications on top of regular appointments. 

 

Now that we are home Mason thinks glasses are optional.  Of course, he's just barely 2 years old!  So I'll be following him around all day repeating the mantra "Glasses on unless you're sleeping."