Tuesday, May 14, 2013

In the Valley, Surrounded by Mountains

Raising children is a challenging experience.  It is one that has low points, hard climbs, and breathtaking views before the path heads back down into a valley on the trail.  Do you ever find yourself in a valley?  valleyAre you surrounded on all sides by mountains to climb?  Have rocky boulders littered the steep path out of the valley so that you cannot imagine making in through one more day, much less a week, month, or lifetime?  Life with Mason has brought me into valleys I never expected to visit.  At the bottom of the valley I look up and see mountains. I want to describe two of those mountains today.

The Mountain of Fear

Fear that the limitations of his body are more complicated and far reaching than we expected.  This is a mountain we have been climbing since his diagnosis before birth.  Just when we think we’ve made it to the top we find there is another peak to climb.  While we were told to expect a child who might walk part-time it soon became apparent that Mason’s nerve damage was more severe than expected.  He will never walk.  We made it over that peak but know the realities of it will strike at odd moments over the years.

Along the path up this mountain we have found boulders in our way.  His paralysis affects bowel movements severely.  We struggle daily to find a balance between too much intervention causing diarrhea and not enough causing total constipation.  Without intervention Mason simply doesn’t poop.  We use Miralax and occasional enemas for now but there are potential surgeries and full time enema routines in the future.

100_2579His abdominal and back muscles are compromised by nerve damage.  His balance at 15 months old is still not there.  He still cannot sit without a hand on the floor to balance, with brief moments of balance without using his hands.  When Mason is serious about playing he lays down like the picture above so he can use both hands.  He cannot sit in a chair and use both hands unless it has a seatbelt to keep him balanced.  Will he ever be able to sit in a regular chair or even just on the floor and use both his hands to play? I don’t know, maybe, maybe not.

The Mountain of Exhaustion

There seems to be no end to the extra needs.  Nothing is simple, nothing comes easily.  For me it is an eternal round of keeping track and doing.  Keeping track of medication doses, figuring out how much of certain medicines he needs based on what he is eating each day, not forgetting timed doses of other medicine.  100_2578Every four hours stopping what we’re doing to cath him, a process that takes longer now that his bladder is paralyzed by Ditropan so we’re doing virtually all the work.  Even at midnight it must be done so sleep is interrupted. 

Physical therapies that need done as often as possible but need to be fun because he’s just a 1 year old and won’t do the work without enjoying it.  Stretching muscles and tendons that are tight to hopefully maintain what flexibility he has, while watching carefully to not dislocate other things where he is over-flexible. 

Continual skin checks to see if he’s bruised, scraped, bleeding, or cut because he can’t feel half his body.  He bit his toe a few days ago until it bled because he can’t feel it.  Just doing the normal baby thing of playing with his feet, but he got off the sock and before we knew it he was hurt.  Playing outside in shorts because it is hot means crawling and dragging half his body over rocks, sticks, sidewalk, and more.  Scrapes, bruises, and cuts result.mountain trailOther boulders up this particular mountain include the landslide of medical appointments that crop up, necessitating scheduling, driving, and coordinating care between specialists who make one simple change and it affects what half the others take care of. 

There are the sleepless nights induced by factors such as itchy eczema, pain, discomfort, or who knows what. 

There is the constant lifting, carrying, and helping Mason get where he wants to go.  He is the typical 15 month old who wants up on the couch, or up the stairs, at the table, up to the piano, or on the counter when I’m cooking but he can’t get on any of those himself.  And once he’s there he needs you with him so he doesn’t fall off(remember that balance issue?).  He can’t just slide off the couch or slip down from his seat at the table when he’s done either, though he will probably figure that out in a few years.  Yes, years.

mountainview 2Mountain Top Experiences 

I try to be open about these valleys because they are real.  They are temporary though, just a part of the path.  This path also holds breathtaking views, mile high blessings gained from the climb.  We have mountain top experiences of joy that fortify us for the next valley.  Our whole family is stronger simply because the path has not been flat and easy.  FloweronRockAlong the climb we have discovered blessings, beautiful, unexpected blessings growing out of the rocks.  Truly, God works together all things for the good of His children.  His tender mercies and strength carry us out of the valley, over the boulders, and to the mountain top when we cannot climb any further.  I know this.  I have seen it in my life.  When I come to the end of my strength, to the end of myself, He is there to help me up the mountain.  He is there to point out the blessings along the way, like flowers growing from the rocks.

Are you in a valley or struggling up a mountain right now?  Look around you for the blessings, the flowers growing from the rocks.  Then reach for the Savior and let him help you to the next mountain top.  He’s right there waiting for you to ask.

Tuesday, May 7, 2013

Sweet Brother Moment

100_2522With only 13 months between them Caleb and Mason are brothers who are just beginning to explore their relationship.  Caleb is 2 and Mason is 1.  Today Caleb was playing piano when Mason crawled over to join him.  Mason doesn’t have the core strength or balance to sit on the bench to play so we pulled in his booster seat from the table and away they went.  It was loud and not very much like music but to my mommy ears it was the sweet sound of brothers playing happily together.

Monday, May 6, 2013

Growing, Adjusting, and Not Sleeping

100_2359Well, 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.  100_2362We’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.  100_2461He’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.  5.26 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.

100_2467It 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!

Monday, April 22, 2013

Urology Updates and More

100_2327It’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. 

100_2333First, 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. 

100_2345The 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.

Tuesday, April 9, 2013

Allergies and Solids–Updates!

The last few weeks we’ve been trying Mason with cow’s milk in various forms to see his reaction.  We started with yogurt.  A week with no increase in eczema or other symptoms(diarrhea, stomach cramps, etc).  Then we began to make his sippy of formula with 4 oz. of Alimentum and 2 oz. of milk.  A week with no adverse reaction. 

That brought us to last Friday when we were down to the last of the Alimentum formula.  We decided it was a great weekend to see how he did with just plain old milk in his sippy.  So far it’s going great!  The only change we have noticed are his bowel movements are softer.  I suspect it is because the milk is not iron-fortified like the formula.  And for Mason it’s a positive change because it means he doesn’t need as much Miralax to keep things moving. 

We are still not going anywhere near soy as that had a much faster and more uncomfortable reaction when he had it as a baby (full rash over his entire body the first day).  We’re going to ride through this next month or two watching the dairy and continuing to work with Mason to transition off purees completely. 

In that department – Mason no longer eats only complete purees.  He’s finally willing to chew on and sometimes eat real table food.  Things he’s liked so far:

  • grapes
  • pickles
  • cucumber
  • banana bread
  • plain pasta (well, he tries it)
  • apples (hilarious to watch him gnawing on a peeled apple, but he tends to spit it back out half the time)
  • cheerios
  • he also ate about half a chocolate chip cookie when we made some over the weekend. 

Things he really could live without:

  • banana
  • watermelon
  • strawberries
  • most breads
  • most grains, oatmeal, rice, etc.

He has been getting most veggies pureed and likes about any kind you offer.  I plan to start steaming some vegetables for dinner each night to offer him.  We’ll see what he thinks!

Monday, April 8, 2013

First Step to a Wheelchair

Today Mason took the first official step in the path to a pediatric wheelchair!  We visited Columbus Medical Equipment to try out some wheels and chat with our vendor about what we’re looking for.  This Friday we’ll meet up with the vendor and some of Mason’s doctors at Myelo Clinic to take his measurements and get paperwork finished.  100_2299This is one of the demo chairs and as such it looks practically nothing like Mason’s chair will look in the end…LOL!  Still, we were pleased to see him take off the minute he was seatbelted.  Mason enjoyed it.  Some differences between this chair and the custom built chair he’s getting:

  • No headrest, he doesn’t need it.
  • Lower back that is tension adjustable – makes it easier for Mason to reach behind himself to get things, play, etc.  The one on this demo chair is offers way more support than he needs.  
  • Different anti-tip wheels in the back – his will be two smaller bars that are adjustable so he can have more freedom to do wheelies and have fun as he grows.
  • Smaller wheels – these are 22" and we’re probably going down to 18" so he’s closer to the ground.
  • Sides to the seat (guards) that keep his legs from splaying out to the side so much that they or his pants rub against the wheels.
  • Small extender bar on each brake pull so he can reach without leaning so far forward.

Many parts on this are adjustable or removable, such as the parent handle for pushing like a stroller.  100_2304The other big difference – the color!  There are more than 10 colors to choose from.  Can you guess which one of these we’re going with? 

After Friday’s measurements we’ll just have to wait.  And wait.  And wait.  Sometime late summer Mason’s wheelchair should be ready!

Wednesday, April 3, 2013

Practicing Stair Climbing

Mason keeps trying to climb the stairs.  After talking with our physical therapist about it at his last appointment we got specific ways to work with him when he’s trying to climb.  100_2175Today I happened to have the camera nearby so I snapped a few pictures.  This is after helping him get onto the first step.  The second step is easier for him to get onto because it is the landing.  100_2176All he has to do is get his upper body there and he can lay down and drag his lower half on up using upper body strength. 

100_2177It’s hard work, no doubt about that, but Mason doesn’t let it phase him.  100_2178He moves right on to tackle the full flight of stairs next.

100_2179Oops!  Couldn’t do it on his own and turned around to tell me to put the camera down and get over there to help him.  Cutie pie!

I still hope it takes him a long time to be able to do stairs on his own, but for now I’ll keep helping him practice when he wants to.