Friday, March 22, 2013

March Updates for Mason

Mason is doing pretty well and I wanted to do a post about where we’re at.  It’s going to be a bit of a jumble, consider yourself warned! 100_2131 First I wanted to share a few pictures from this morning.  Mason is getting stronger and working hard to get up the stairs.  100_2135See how he pushes up on both hands?  He’s not made it up yet and I really don’t want him to figure this out for a few months.  I just can’t see how he can safely climb up and down when he can’t feel half his body!  100_2134I’m sure when he’s old enough to think it through he’ll find a good method, but for now all I see is him falling and landing on his shunt.  Not ideal.

Next:  Mason’s urologist decided to go ahead and schedule his kidney/bladder evaluation for April instead of in six months.  In one day he’ll have 3 test.  First is a renal ultrasound to look at his kidneys and check for any damage.  We’ve had this before.  Next is a VCUG.  Basically they’ll insert a catheter to inject dye into his bladder and take a series of x-rays checking what happens (if there is dye refluxing into the kidneys, etc).  He’s never had this test done.  This is one I can’t be with Mason during because I’m pregnant, so we’re planning to have someone watch the other kids so Daddy can come along for this.  The third test is another we’ve done, a urodynamics study.  For this one they place pressure sensors and then start filling his bladder with a catheter.  They monitor the pressure and his bladder for spasms, among other things. 

What’s the point to all these tests?  First, we want to be sure his kidneys stay healthy.  We need to see if the catheterization schedule we’re on (3 times per day) is effective still.  We also need to see if he needs medicine to handle bladder spasms that could be thickening the wall of his bladder (and shrinking it) or causing reflux into his kidneys.  We really don’t want to start the medicine as it comes with it’s own host of side effects, but it’s something we’re probably going to need at some point. 

Moving on!  We’ve gotten dates for our Wheelchair Evaluation.  On a Monday in April we’ll go see what wheelchair we want for Mason by trying a bunch out.  Then Friday of that week we head back to Myelo Clinic just for a wheelchair appointment to get Mason measured for a wheelchair.  Then we wait for around 6 months for it to arrive.  I’m excited for this stage!   By the time we actually receive Mason’s wheelchair he’ll be close to age 2 and the independence and freedom it brings will be wonderful for him. 

Other Updates:

  • He teething and it stinks.  He’s a crabby bear some part of every day.  Then you snuggle him and he tries to bite because it feels better.  Well, it feels better for him – not for whoever he’s biting! Unfortunately he doesn’t enjoy chewing on other things, just people.
  • He’s eating some real solids.  Of all things he’s decided cheerios and pretzels are pretty good.  If I cut up food to put on his tray at mealtime he plays with it, occasionally eating a piece, which is progress.  But that leads me to the next issue.
  • Allergies!  We know he’s allergic to milk and soy to some degree (discovered when he was a little baby).  Now that we’re trying to offer him some of our table food alongside his purees I’m struggling.  I’ve cooked without dairy before (Joseph was seriously allergic as a baby and young child).  Soy is EVERWHERE.  I’m so annoyed because unless I want to spend a lot of extra time in the kitchen making things from scratch I’m seriously limited in what I can serve him.  I’m working on that but extra time is a bit in short supply between doing his therapies, homeschooling his siblings, cleaning, and having fun just enjoying my children.  I just need new routines and I’ll get there.  Eventually.
  • Speaking of dairy, once he’s eating solids well that will be the first food we try him on again to see if he’s outgrown the allergy.  His reaction wasn’t major so I feel comfortable trying that.  However I also need to get his skin in great shape before hand (get the eczema under control) as that was his main symptom with dairy.

So there you have it, our random update.  Nothing major, which is just the way we like it!


  1. And it looks like he got a hair cut! I'm always amazed at what he can do while not feeling his lower half. How does he even get into the stair attempt crawling position? He's awesome!

    Good luck with the food allergies. We have some of those here too. My only suggestion would be to make food ahead (or double batches) and freeze them in Mason-sized servings so you can just pull it out when needed. I'm guessing in these small quantities it wouldn't take longer than overnight for them to defrost. And keep it simple, pureed fruits and veggies w/or w/out meat, breads, muffins, etc. I used to throw out leftovers that were only a few bites until I read someones' blog about how a few bites for a grown-up is a meal for a toddler.

  2. I have a child with soy allergies, I know how difficult that can be to avoid. If you need some help with that one, feel free and I can guide you a bit with it. Soy is a very difficult one to avoid unless you make everything 100% from scratch. Whole Foods has a lot of good stuff, as does Raisin Rack (I send the husband to both once in a while if I'm starting to have issues with soy overload, I'm also sensitive to it in addition to having a soy allergic child)

  3. Tristan, Happy that Mason is doing well. Sorry to hear about his soy allergy. My 2nd son had a soy allergy and it was hard (as well as a bunch of other things). I always made myself feel better by saying it was better than a gluten allergy/sensitivity. I definitely did most things from scratch. There was not a single bread I could buy that did not have one of his allergens. Ugh. Grocery shopping took so much longer. We even found soy in popsicles once. And manufacturers change ingredients regularly so you need to re-read labels. We have even found regional differences in ingredients. He could have oreos made in the west but not in the east. Weird. Good luck. Hang in there. It seems you are doing awesome, even if you are at your limit. Prayers.

  4. Lliam is biting too. Luckily, it is only me he bites...if you can call that luck. He has allergies as well...peanuts, egg whites, wheat and milk. We just found out about the wheat. So overwhelming. I cannot find prepackaged food/snacks unless they are outrageously priced, so I too have to make everything from scratch. And he is picky. Seriously I have to pray all the time that I will figure it all out (another child is allergic to all corn products, milk, wheat, grapes, and red 40). We have cut out all of his allergens and his eczema, with routine slatherings of coconut oil, is finally under control. Anyway, Mason looks gorgeous. Love his hair.

  5. I don't know if this will help

    but they have all sorts of meals that you make once-a-month {even gluten free and dairy free} all with real ingredients. I bet you could make Mason sizes for what he needs and then have them ready for him.

    I am amazed at how resilient children are. Had you not been so open about Mason, as far as the pictures show he looks like a regular child without any disabilities. And he is growing up thinking that he is going to take on the world, just as every child does.

    You are a great mom and Mason is so cute!


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