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. 

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!

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!