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!

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.

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.

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. 

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.

Urodynamics Test Today

Mason and Mommy headed to Children's Hospital this morning for his urodynamics test in the Urology Department.  He had this test in April of last year and due to high bladder pressures was put on Ditropan.  You can read more about that visit here.  Today was easy.  We checked in and Mason explored the waiting room for a few minutes before we were taken back for the test.

 

In the test room Mason loved this ocean mural.  He had fun pointing out the different animals and even took my camera to take a few pictures of his own. 

The test told us a few things.  First, the Ditropan is working well at the current dose.  His bladder pressures stayed super low during the test.  Second, it gave us an idea of how much his bladder can hold without leaking. 

We will use that information in the coming week or two as we begin measuring how much urine output we get cathing Mason in the middle of the night and first thing in the morning.  We're checking to see if we can forgo that midnight cathing.  I have no idea if that will be a possibility.  While the extra sleep would be nice (not having to wake up in the middle of the night every night to cath Mason) the important thing to us is protecting Mason's bladder and kidneys.  So we'll do what we need to do. 

It was a great appointment, Mason was cheerful and talkative through it all.  He loved the elevator rides and is an old pro at the hour drive to the hospital and the hour drive home.  We listened to music and to podcasts.  The cutest thing was every time a truck passed us he would call out, "Come back truck! Come back to me." 

Myelo Clinic–Things Not on My Radar

Time to update again!  Mason had his team appointment in Myelo Clinic yesterday so we’re full of information, not all of it good.  Read on! 

First we’ll talk about the good.

Mason is doing great from a occupational therapy standpoint.  He uses his fingers and hands appropriately to manipulate things, stacks blocks, does puzzles, passes things hand to hand, etc.  With the obvious long-standing limitation that he does these things best when he’s strapped into his wheelchair or something that supports his sitting so he can use both hands and remain balanced. 

Urology took a look at Mason’s bladder and kidneys yesterday by ultrasound and they look beautiful.  The ditropan (medication to paralyze the bladder) and cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) is protecting those organs well.  No changes here.

Weight gain has finally been accomplished!  Mason had not gained any weight in over 6 months, sitting right at 24 lbs.  He’s now 24 lbs 11 oz.  Slow, but it’s something. 

Eating skills are progressing again.  After all Mason’s oral aversion issues around the brain surgery fiasco last fall and winter was (5 surgeries in 4 months) he is about where he should be with eating.  He uses a fork well, is figuring out a spoon, and finally closes his mouth to take bites about 75% of the time.  This shows itself in big ways like Mason actually taking bites of a bagel or other food instead of everything needing cut into bite size bits.

On to the not quite great but also not bad news:

Poop is still a work in progress.  We’ve been doing daily cone enemas for a month or so to clean Mason out and keep poop off his butt wound.  They work most of the time in combination with his Miralax.  We’ve reduced the Miralax drastically over the month to find a balance between soft enough for the enema to work and firm enough that he’s not pooping in between enemas and getting his wound dirty (infection risk).  It’s just a balancing game that varies daily based on what Mason has eaten and drank that day.

Wound Update!!!  He is healing S.L.O.W.L.Y.  He had some dead skin building up around the edges of the wound in calluses so he had debriding yesterday.  It sounds nicer than it is.  Basically they laid him on his belly and went to work with tweezers and a scalpel to cut off tissue.  Mason didn’t feel a thing, of course.  As a matter of fact his reaction was to fall asleep for his nap.  Yes, I’m serious.  They didn’t get all the calluses off but we’ll see how they’re doing in a few weeks.  Here’s a picture for those who have asked.  We’re to keep changing his bandage with every diaper change and continue limiting his sitting time in things like the booster seat at the table, his wheelchair, etc. 

The Bad

Now we come to the part of the visit I don’t want to think about.  The scary part.  You see, going in I had a page of questions and concerns.  It’s the only way to keep track of everything when seeing so many specialists in one day.  On my list was a reminder to let the orthopedic surgeon know Mason’s right foot/ankle and hip have had drastic changes in the last two months.  They have always been ‘tight’.  The hip is hard to straighten, the foot/ankle is hard to bend into a ‘flat’ position like when you are standing.  Which is why I do stretches and physical therapy several times a day with Mason. 

In the last two months it hasn’t mattered how diligent I was, we were seeing things regress.  We can no longer straighten his leg at the hip completely and cannot get his foot/ankle into a flat or neutral position.  That triggers a few problems, including not being able to fit/wear his HKAFO braces for standing, not being able to wear the foot brace at night without bruising, not able to wear any structured shoe, etc. 

We saw the physical therapist first.  She quickly told me I was right, there was a significant difference, and went to grab a few people.  Neurosurgery and orthopedic surgery.  WHAT?!  Neuro?  I knew that was not a good sign. 

The neurosurgery nurse asked me just two questions to start:

1. Has Mason had a significant growth spurt in the last few months?  Yes, he’s gained nearly 2 inches.
2. What changes have we seen in his body?  The ankle and hip contractures.

Then she said words that hadn’t even been on my radar.  “We’ll need to check for a tethered cord.”  My heart dropped into the floor.  I knew in theory that one day Mason might face that.  You see, when your spinal closure is done at birth the cord and nerves may begin to attach or tether to the scar.  A spinal cord is not stretchy.  Often when a child has a growth spurt their body stretches and the cord does not.  That causes neurological symptoms, and very often damages the spinal cord or nerves further. 

If Mason’s cord has tethered they will do a surgery where they try to separate the cord and nerves from the scar.  In the process there are very real risks that they will cause MORE damage to Mason’s nervous system.  In other words, he could come out of surgery with even more paralysis and problems.  For example, that hip function he has, the ability to pull up at the hip, could disappear.  The weak abdominal and back muscles we already fight to help him sit and balance could be made weaker or completely paralyzed.  I just don’t want to think about it. 

I’ve gotten comfortable with Mason’s disability.  Things like a wheelchair make me happy, they give him independence.  I’ve accepted what limitations he has and thrill to watch him push and make the most of what he can do.  A tethered cord could make us go through the process all over again with new levels of disability.  Loss of function.  Three little words that could change everything.  Again. 

What Comes Next

There is still a possibility that Mason’s cord is not tethered.  We may just be facing some leg surgeries to cut tendons, casts, and a lengthening process.  If I had to choose I would take that in a heartbeat.  Even if his cord is tethered we may end up needing those surgeries too, to stretch out and lengthen things that have pulled tight.

We expect to hear from the neurosurgeon Monday with a plan for a sedated MRI of Mason’s spine.  Under general anesthesia they’ll take a series of pictures and compare them to his baseline MRI done earlier.  They will look for changes and go from there. 

Another scary thing to think about is that a tethered cord can happen again.  And again.  And again.  And each time there is a risk of doing more damage. 

In My Head

How does this feel as a mother?  Terrifying.  Helpless.  Angry.  Peaceful.  Talk about a contradiction!  While I want to cry and shake my fist and pound on the doors of Heaven asking ‘why?’, when I look back at Mason’s life so far I have peace.  I always remember the very first priesthood blessing I had when we learned Mason would be born with Spina Bifida.  Here are my thoughts from the very first post on this blog:

“…the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk.”

I know none of this is a surprise to God.  He’s with Mason and He is with us on this winding, uphill climb.  The best part is that He never leaves us to climb alone.  We have the God of Heaven and the Savior of the World on our side.  He is strong when we are weak.  His atonement strengthens us to take one more step.   He gives us peace no matter the circumstances and he loves us through our tears, our anger, and our fear.  His mercies are new every morning.

Growing, Adjusting, and Not Sleeping

Well, we’ve survived the first few weeks on Mason’s new bladder medicine.  This is what he looked like for about a week after starting Ditropan.  He was miserable.  The worst part was that the changes to how his mouth feels (dry mouth) made him refuse to drink most of the time.  That lovely oral aversion he struggled with after each shunt revision came back and he swatted away anything near his mouth, cried, and was a very unhappy guy.  We’re on the other side of it now and he’s happy to drink and eat again.  Which means he is in a much better mood. His eating is getting better and better.  He is eating a good mix of chunky purees and some solids finally.  Today, for example, he has eaten vanilla yogurt with applesauce, a few pretzels, a turkey vegetable chunky baby food, bread with jelly, grapes cut into small pieces, macaroni noodles with spaghetti sauce, and I know there was something else in there I’m forgetting.  It was his first time actually eating noodles instead of spitting them out.  He’s back to playing and enjoying life.  He also decided it was time to get a new tooth and it is just barely peeking out of the gums.  That makes 7 teeth at 15 months old.  My slowest teether ever.  Mason has discovered the joy of books.  One day he was absolutely fascinated with this board book - called The Baby Animals’ Party.  I had been reading it to Caleb one afternoon.  Mason decided that this bunny rabbit was his favorite animal in the book and every time I tried turning the page he would turn it back to this one.

It is a good thing he is so cute because we’re still struggling with sleep issues.  Several nights in the last three weeks he’s woken up more than 3 times unhappy and stayed awake and upset for between 1-3 hours each time.  I am working my way back through my No Cry Sleep books looking for any ideas we can adapt for Mason.  I know that eventually he will sleep better, all of mine have gotten there.  He is just the first child with special needs that complicate the process.  When I can’t let him fuss in his crib at all without his body pooping/peeing, which leads to serious skin breakdown with his sensitive skin, it takes a lot more work to get him to sleep. 

Ah well, such is life!  He’s worth every minute of it!

Urology Updates and More

It’s never just one thing is it?  Mason had three tests today to evaluate how his bladder and kidneys are functioning.  First up this morning was a renal ultrasound.  He did great with this and really didn’t mind the test.

Next we headed to fluoroscopy in the radiology department for a VCUG.  This test combines injecting a contrast/dye into his bladder with a catheter and taking x-ray pictures.  Daddy came along today so Mason wouldn’t be alone in this test (pregnant women are not allowed in during x-ray). It took a little over 15 minutes to get all the pictures they wanted.  Then the doctor showed us what he saw. 

First, Mason’s kidneys look fine.  He is not having urine reflux into his kidneys and damage them.  That is wonderful!  Mason’s bladder is getting thicker though.  The bladder is a muscle and the more it spasms the thicker the wall gets.  This limits how much urine his bladder can hold. 

The unexpected thing we learned is that Mason’s left hip is currently dislocated.  You can see it clearly on the x-ray, one hip ball is in it’s socket while the other is not. What does that mean?  Well, we don’t know yet.  We are waiting to hear back from a different doctor about that.  It isn’t surprising because Mason’s quite flexible and can’t feel when he’s overstressing joints.  We just are not sure what needs done to help him. 

The last test Mason had done today was a urodynamics study.  By the time we got situated for this test he had had enough of doctors.  He fell asleep.  I don’t blame him!  Because he was asleep we got the most accurate pressure readings possible AND they ran the test twice to be sure.  This was an answer to prayer because I knew that if he was awake and crying during the test it would mess up the readings, and doctors would be basing medication decisions on this test in combination with the other two. 

In the end we came home with changes to our days.  Mason is to begin taking Ditropan.  What it does is relax or paralyze his bladder so it isn’t spasming all the time.  That means the muscle isn’t working overtime and thickening.  It also means we need to begin cathing him more often (4-5 times a day instead of 3) because his bladder won’t be working.  It stinks because medications bring side effects, but it’s important to keep Mason’s bladder as healthy as we can. 

The side effects vary a bit by child, we’re expecting to see the following:

• constipation – this is on top of his current constipation struggle, so we’re going to become more aggressive in our Miralax use to combat that.  If it doesn’t work we will look into different measures like regular enemas.
• flushed cheeks 
• dry mouth – we’ve got to keep him drinking.
• overheating – this is a possibility and one we’ll have to watch closely as summer comes because we can’t just look at his face as a basic gauge, it will already be flushed most likely.

I think that’s all for this update!  In general Mason is doing wonderfully.  He’s growing and hitting milestones like a champ.  We are enjoying every day watching his personality show more and more as he grows.  And we are so grateful for doctors and medications that can help our sweet son’s body function and protect vital organs like his kidneys.