Friday, January 11, 2013

New Wheels, New Braces, New Bed

The last couple of weeks have been filled with new things for Trace.  A few months ago we decided that it was necessary to get Trace a medical stroller. His feet were dragging the ground and head well above the head rest in his baby stroller.  He must have a stroller to ride in as he does not have the energy to walk distances.  I held off as long as I could in hopes that he would become stronger and able to walk better distances.  Well that miracle didn't happen.  Trace is weak, extremely loose jointed and has no ability to walk distances without tiring out completely.  There's no way he could make it during a day at the clinic or even through WalMart without being held.  He's 5 years old, 32 lbs and 42" tall, then add the 25 lb diaper bag including meds, diapers, wipes, extra clothing, juice cups, etc.  Too much for me to carry.  The medical stroller arrived last Friday.  I know it will be better for Trace and is customized to his personal needs.  BUT it's heavy!  It does break down and I can lift it into the car that way, but wow.  I try not to put too much focus on what the future holds, but this one made me think a little.  How in the world will I do this if needed when he's 10?  I'm still going to pray for the miracle he strenghtens and is able to get himself around!  In the mean time, guess I better start lifting some weights :-) 

Monday Trace received new ground reactive ankle foot orthotics (AFOs).  He has worn AFOs before, but these are a different type of brace.  He couldn't even take one step in them the first day.  But my resilient little Mister was doing much better by the second day.  And the third even better yet.  These were another thing I didn't want Trace to deal with again - but that's not what matters.  What matters is how he can possibly learn to walk properly and not cause any more problems for the future.  Dr. Y feels these are very necessary for Trace.  I trust Dr. Y, he's never steered us wrong, and listens to my Dr. Mom opinions as well.  So I willingly gave these a try in hopes they'll make a difference for the better for my little guy. 

Yesterday we received Trace's sleep safe bed.  I would have loved for him to be able to sleep safely in the bunk beds that were in his room.  But the fact is that's not going to happen any time soon.  So out with the bunk beds and in with the sleep safe bed.  Trace will be sleeping in his bedroom from here on out.  This is a hard one for me.  Trace has slept in his crib in my room since birth.  There are several reasons for it.  He stills wakes several times a night, easier for me to be right there.  He has seizures, wears oxygen and uses a pulse oximeter, easier for me to be right there.  We'll see how this goes.  I know it's best for Trace.  It's more of a "normal" thing to be in his own room.  Mommy will probably be sad though.

I never wanted my son to have any of these new things.  But it's not about me now is it :-)  It's about what's best for Trace, what makes his life easier and what's necessary.  I feel he's fortunate to have these new things.  They will make his life better.  It's just another change in our lives.  It's all about moving along with the change and making the best of it.  I think so far I've learned to embrace the changes life has given me and make the best of the worst.  Sometimes it may take me a little longer, but eventually I catch up.  I'll get here too and it'll all become normal in the blink of an eye.  Just our new normal.

Hope, Love, Courage &Faith,


  1. So great for all of Trace's new things! We got the medical stroller last summer and it IS so heavy. Since G still fits in his baby stroller, we just keep the medical one at school for him to use there- but someday I'll be in the same boat- I need to start lifting weights too! I hope the AFOs and new bed make life better, not just different. You are right, it is SO hard to see our kiddos need things that we never dreamed they would. But they do become normal, which I guess is a good thing. Hugs to you and your little mister!

  2. Laurie,
    Congrats - I guess?? New stuff, new normal, hopefully a new sense of better will arrive one day. Post some pics of Trace using all his new gear out so we can see that sweet face. :-) See you at the walk! Lori

  3. We opted to get K a wheelchair instead of a stroller (since she is 7 and they only allow one every 5 years) and I think we lucked out with the weight! It still is a bit of a hassle to break down, but from the sound of it, easier to move than most strollers. Regardless, it made SUCH a huge difference to be pushing her in a chair she FIT in, I didn't mind at all!

    As for the other stuff, I hope it is a blessing in the end, too. K sleeps upstairs with oxygen and her oximeter and while it is a hassle to run up there when she is alarming, it is nice to have "our" space, too. I hope you find the same true for you and your hubby. When she is sick, though, Josh gets the boot and K buns with me. ;)

    Could you PM me info about Dr. Y on Facebook? I have some concerns about K's muscles/joints and such, but the last ortho we saw wasn't helpful at all.

  4. Replies
    1. We ended up with the Kimbra Spring from Ottobock. It's nice and we were able to customize with certain features Trace needed, like head support, anti-thrust and extra belts to help him keep from slipping down.

  5. Hope this year will be great for you and your family. Always remember that this three will remain, faith, hope, and love. But the greatest of these is love.