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.

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!

HKAFOs and trying new equipment out - with a Video!

A couple weeks ago Mason got new HKAFOs (standing braces) and he has been enjoying them. The fit pretty well and his skin is generally tolerating the braces.

Mason's new glasses are in - with no bifocals! The eye surgery he had in spring has healed up and did improve his eyesight some, so now he just needs glasses, not bifocals. He went back to orange for the frames.

We are still dealing with crazy eczema that won't heal. The doctor has Mason trying a course of antibiotics and antibiotic cream to see if there is some underlying infection but his course of that has pretty much finished with no real improvement. I think the next step may be a steroid injection, but I'm not sure.

Yesterday Mason and I got to go work with one of the Myelo Clinic physical therapists at the hospital to try out new equipment. We have been waiting months on an opening for physical therapy (PT) and are still waiting. We decided that if we could figure out what equipment Mason needs then we can pursue private therapy locally instead of waiting for Children's Hospital. They were talking about everything from a gait trainer (very supportive, lots of potential attachments, but also thousands of dollars) to a reverse walker (minimal support, potentially much less expensive). They anticipated several appointments trying equipment to see what Mason would need and would be willing to use.

Well, I'll let the video show you the result.



Yes, that is his first attempt with a walker. He did great and it was obvious that he doesn't need a gait trainer. He liked walking. It's a great cardio workout for Mason, works his arms, shoulders, core, and applies pressure to his leg bones to help strengthen them and combat the osteoporisis, all important. Now we pursue insurance approval for a walker, which can be a long process. We have a family about an hour away who has a similar walker available for Mason, so we'll pick it up this weekend and use it while we wait for insurance to approve a walker for Mason and for the order process to happen. Then we'll pass the one we're borrowing on to another family who needs it.

We are also working to get Mason into PT locally with the physical therapist he's worked with in the past.

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!

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 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!

Eye Surgeries Finished

(Pre-eye surgery photo)

I wanted to put up a super quick post to share that Mason had his double eye surgery today as well as his spinal MRI.  The surgery went well.  They moved one muscle on each eye to a new position in the hopes that it will help with the eye crossing caused by muscle weakness.  For the next week Mason will have eye drops three times a day and then a checkup.  At that checkup we will possibly order new lenses for his glasses. The other possibility is the surgeon will decide to wait until Mason's 2 month postop checkup before ordering a new prescription.  It depends on how Mason's eyes seem next week. 

Here is one picture that shows how red the inside corner of the eye is from surgery.  Both eyes look like this, though you cannot see it on his left eye because of the angle I took the photo at.  He'll have this redness and broken blood vessels for a few weeks as he heals.  He was still a bit groggy when I took this photo and was waiting for the nurse to hurry up and bring his popsicle.... he cheered right up after that arrived.

As for the spinal MRI, we know nothing about what they saw on the scans.  I'll be calling the neurosurgeon to nudge them along in reading the MRI and sharing their thoughts in the next few days. 

Mason did not have to stay overnight after surgery so he is home.  He played happily this evening without pain and is sleeping peacefully as I type.  Which is my cue to head to bed too!

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. 

Will we or won't we?

Yesterday Mason had the first appointment in the process of creating his night time sleeping brace for his scoliosis.  The first step is simply making a cast of his body from under the shoulders to his hips. This picture is right before they start wrapping him in a cast.  They wrapped him in cast material and while it was still flexible they pushed on his shoulder and hip to correct the curve of his spine.  He stayed in that position while the cast material hardened.  Then they cut off the cast.  It will be used to make a mold of Mason's body and to create the custom brace.  In a few weeks we'll go back for a fitting.

While we were there Mason got to see a brace like the one he'll be getting.  It looks okay but I don't know that he'll be able to sit up in it and climb out of his bed each morning when he wakes up.  I'm not even sure he'll be able to roll over in it.  We shall see.

Yesterday morning I also called our neurosurgeon's office to see what Dr. G's plan was now that the urodynamics (bladder study) was finished.  The nurse practitioner called me yesterday afternoon to chat about the symptoms we are seeing.  She promised to call me after she went over all of it with Dr. G, but that since there had been no bladder changes she wouldn't be surprised if we were done for now and would not pursue any more testing until the bladder begins to show changes.

She called me back at 9:30pm.  Dr. G wants to examine Mason before the scheduled foot surgery a week from this Friday.  His reasoning makes sense.  If the foot contracture Mason is having surgery to correct is being caused by a tethered spinal cord (instead of just randomly happening) then doing the foot surgery before doing a tethered cord release means the surgery will be wasted.  His foot will simply re-contract and need a repeat of the surgery because the underlying cause (tethered cord) had not been addressed. 

Dr. G's office will call today to schedule that exam.  There are two main possibilities that will come out of that exam.

1. He will clear Mason to go ahead and have foot surgery if he feels that Mason does not need a tethered cord surgery yet.
2. He will cancel Mason's foot surgery and schedule a sedated MRI of Mason's brain and spine instead.  This would be the final imaging done before scheduling a spinal cord detethering.  The foot surgery would get bumped to a later month after a detethering was complete. 
3. Or after cancelling the foot surgery and doing the MRI the imaging could come back and the neurosurgeon could decide to wait and we would reschedule the foot surgery - but this is the least likely.

As always, things are never certain around here.  That is probably one of the most challenging parts of having a child with complex medical needs!  It takes a team of doctors to decide what is going on and what needs treated first, second, and third, as well as how to treat each issue without impacting other issues negatively.

In other news, Mason had his first appointment with his physical therapist on Monday.  We went over the issues Mason is dealing with and our goals, gave him a good workout, and will go back weekly for the foreseeable future.

Urology Updates

Yesterday Mason had a urodynamics test done at the request of his neurosurgeon.  Urodynamics is a bladder test that checks the amount of fluid the bladder holds before it begins to leak due to pressure.  This is one area that often shows changes when a tethered spinal cord begins causing problems.  The good news is that there have been no changes to Mason's bladder capacity or ability to handle pressure.  They will forward the results to Mason's neurosurgeon, who will then decide what the next step is in the process of deciding if it is time to do another spinal cord surgery. 

We did come home with some changes, however, from urology.  Mason has been growing and because his bladder medication to paralyze the bladder is based on weight it is time to increase his dose.  However they want to switch him from a liquid to an extended release pill because the pill generally has few side effects while increasing the liquid will increase the side effects Mason deals will.  So now we get to try to teach a 4 year old to swallow pills (he can't chew the pill without messing up the extended release).   ***** Edited to update: Mason took his pill in a spoonful of applesauce this morning.  We showed him we wanted him to just swallow the applesauce, he put the pill in the applesauce, and he swallowed, no problems, no chewing.  Yay! At least that was easy.****

Once Mason has been on the new dose of medicine for a week we are also going to measure his urine output for his morning cathing.  They want to see us getting out less than 200mL because more than that sitting in the bladder could increase the pressure enough to reflux urine backward into his kidneys (based on the results of his urodynamics test today, showing he doesn't leak even at 250mL but the pressure increases above 40 at that point, likely to mean reflux is happening at that stage instead of leaking urine).  If he's holding more than 200mL in the mornings we will have to do one of two things:

1. Add another cathing to his overnight schedule.  Right now we cath Mason once in the middle of the night.  We may have to set an alarm to get up a second time.
2. Put a catheter in and leave it in overnight to drain his bladder.  This option is actually my least favorite for a few reasons.  First he would then be laying in a wet diaper all night, which really isn't good for his sensitive skin or for his growing up age (who wants to be in a wet diaper at age 4 or older?).  Second, it would increase the likelihood of Mason getting urinary tract infections (which we've avoided so far).  UTIs are pretty common in people who have to cath and leaving a catheter in overnight leaves a route for bacteria to travel right into the bladder all night long.  UTIs mean antibiotics.  Frequent antibiotics mean a messed up digestive system and building a resistance to antibiotics that you may actually need later on for more important things like serious illness or surgery recovery.  Yep, I'm a bit opinionated on this one.  Obviously we'll be going the getting up extra in the middle of the night to cath route if that is needed. 

So there are this week's updates!  Next week Mason has his PT evaluation to get a plan in place for working on core strength and ultimately on OT skills like putting on and taking off a shirt, drinking from a cup without falling backwards, etc.  He also has his casting appointment with the orthotist who will be casting his trunk and making a custom back brace to sleep in. Hopefully we will also hear from the neurosurgeon next week with his plan for the next step related to Mason's tethered spinal cord.

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. 

2016 isn't Going to Be Boring - Drat!

Sometimes I daydream of nice, boring years with no medical hoopla.  2016 is NOT going to be boring unfortunately.  We had Myelo clinic on Friday and saw a lot of Mason's specialists.  We ended the day with renal ultrasound (to check kidneys and bladder) and spinal x-rays (to check the curvature of Mason's spine).

Many things are going well. His shunt is working fine, he's learning fine, and from what I can tell reading the kidney/bladder ultrasound those are ok too (we will hear from the doctor this week if anything is wrong).
Several things are not ideal.

1. Mason does need surgery on his foot. Again. They are scheduling a ways out (couple of months). This surgery will be more aggressive, cutting clear to the bone on his heel tendon area. When surgery happens Mason will be in a short leg cast for 6 weeks. Hopefully this time around he won't break any bones because of it but it is possible because he still has osteoporosis.

2. Mason needs physical therapy to work on core strength. We expected this because we have been seeing some balance related issues that are keeping him from being able to learn skills like putting on and taking off a shirt or coat.  Mason can't sit and balance and do those things that involve moving his upper body around dynamically. Even drinking from a cup is difficult if he's not in a seat with a back or his wheelchair because he'll tip the cup up, lean his head back, and fall over. After a few months of PT we'll see how he is doing and consider adding in occupational therapy to help him with those fine motor tasks if he needs guidance breaking tasks down into a sequence while also keeping his balance. We'll start PT in February. I'm guessing once a week, with daily practice at home. I've also already gotten some ideas from occupational therapy to begin doing at home on our own while he gets a few months of physical therapy in.

3. Mason has his double eye surgery to do, which I mentioned in my last post. This will probably be the first surgery to happen.

4. His scoliosis is worse, which is probably contributing to the balance issues. I've not spoken with the orthopedic surgeon about this yet (who is doing his foot surgery) because we didn't get the x-ray until the end of our day of appointments. The surgeon's office should call us this week to talk about the x-rays and where we go from here. However I've read the test results and Mason went from a curvature below 10 degrees (not scoliosis) to one around 27 degrees in just 6 months. Treatments vary (bracing (probably where he would start because his curve is below 50 degrees), surgery to put rods in spine or to fuse vertebrae, or more). So possible surgery on the horizon here.

Unfortunately the scoliosis could also be a symptom of tethered spinal cord so we need to talk with neurology in conjunction with ortho.  When you look at all 3 symptoms together (right foot contracture, balance degeneration which could be nerve damage, and a quickly increasing scoliosis) it points to Mason's spinal cord being tethered again.  This is bad.  We need a doctor to order a sedated MRI to check things and we need a doctor who will listen to the whole picture, not just brush us off. One reason doctors sometimes brush you off with this issue is ALL people with Spina Bifida who had a back closure surgery have a tethered spinal cord.  Basically, the spinal cord gets stuck in the scar tissue.  So that is going to show on the MRI.  The real issue is that a neurosurgeon has to weigh the issues you are seeing physically and decide if all of them together mean the tethered spinal cord is being pulled tight and causing those issues or if the issues are unrelated. They are cautious because it is a major surgery (which we've done once before!) that risks causing more damage to Mason's nerves. We'll just have to see where this goes.

So there you have it, a perfect example of what we mean when we say Mason is medically complicated. He's precious and funny and worth every bit of the craziness. It is certainly never boring around here.

We know none of this is a surprise to God.  He knows what needs done, what is going to happen, and we're praying that He'll help us through it as we go.

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.

Merry Christmas and Updates

The year is nearly over.  We have been enjoying lots of family time during the Christmas season.  This is a picture we took of the kids Christmas morning. 

One fun memory of Mason I want to record here:  This year he has been adamant that we bake a cake to celebrate Jesus' birthday (Christmas).  Even better, he is sure that Jesus loves chocolate cake the best - so that is what we needed to make.  It was delicious and Mason loved helping to mix the ingredients.

Mason continues to have a few concerning issues and we have appointments coming up for those (vision/eyes, foot contracture) as well as checkups with his entire team of specialists all in the next few weeks.  Developmentally, however, he's doing fantastic.  We are getting ready to celebrate his birthday and I'm not quite sure how he's about to turn 4 years old!  He is articulate, opinionated, and funny.

The most recent medical happening was last Monday when he had his next IV infusion for his osteoporosis. He does really well with the medication, which we are grateful for.  It did take 4 attempts before they were able to get an IV started, which stinks.  His veins are just not great, no matter how hydrated he is.  We always make IV attempts in his feet first so that he doesn't feel it.

I'll update again soon!

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...

Urology Updates

Mason had a day of urology testing and appointments yesterday.  Because one of the tests involved a series of x-rays Daddy came along with us (pregnant mommy isn't allowed in during x-rays).  Our day began with the VCUG.  Basically they inject dye into the bladder with a catheter and take repeated x-rays to track where the dye goes, how much the bladder holds, etc.  It can show reflux into the kidneys.  It shows the shape of the bladder.  The great news with this particular test was that Mason's bladder holds more than expected for his age and the cathing and medication he's been on for so long has done wonders for his bladder muscle itself.  The last VCUG we had a few years ago showed a very lumpy, overworked, spasming bladder.  This time we saw a nearly smooth bladder.  He also is NOT refluxing into his kidneys, which is great because reflux damages the kidneys.

Test number two was a urodynamics study.  This measures his body's response to the increasing pressure as his bladder fills, as well as how much his bladder holds before leaking, sphincter function, etc.  Again, we compared the past results to current results and found things look great.  He holds more than four times the fluid that he could before beginning medication and cathing.  Horray for a growing bladder!  Pressures look good. 

We met with the doctor after tests to go over results and the plan - which is to keep doing what we're doing.  That means we continue cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) and keep his Ditropan dosage the same. 

Bowel Management Bootcamp - Day Neverending....

 

(Mason was a happy guy today - he bought this purple monkey at the hospital with a gift card to celebrate getting through a week of bowel management bootcamp.  Then he promptly named it Grape Monkey.)

 

So today (Wednesday) was our follow up in clinic for Bowel Management Bootcamp.  I came in curious to see what the x-ray showed this morning because we've noticed over the course of the week that Mason's poop has become more solid - which is due to bootcamp asking us to lower the amount of miralax we give daily.  They usually get rid of miralax all together and I told them I was 90% sure that wouldn't work for Mason. Turns out I was right.  The x-ray today showed more stool in the colon - he's beginning to not get cleaned out all the way by the enema. 

After a bit of discussion on the options (increase miralax, increase the glycerin in his enema, etc) we went with increasing his miralax.  So that means our daily x-rays are not over with.  Drat.  We will continue to have x-rays and email reports to colorectal, who will email back results and any changes we need to make.

I'm not surprised, really.  Mason IS staying clean, which is great.  However slowly backing up over time is not going to be a good thing at all.  So we may have to work out some wonky routine where we do more miralax every few days to balance out the firming up of the stool (which took a full week because he was on double the dose of miralax before beginning bootcamp - doing a cap full per day).  Who knows?!  One thing I love is that just because our week is over doesn't mean the support is over.  They will continue to accept reports, order x-rays, and communicate daily with us as we figure out the right balance for Mason specifically. 

As for Mason - he doesn't care.  Poop happens.  Enemas happen.  They've been a daily part of his life for so long that he doesn't remember anything else.  I'm so grateful for my easygoing, cheerful little man!