Camp Simcha and Becoming Routine

Well, it's been I've six months since nochy has been in the brace, more than that if you include the cast. And though we still have some low and frustrating moments, it's really just become the way we live our lives. ...

Some days or weeks go by, and I barely even register that anything is different. And then some weeks it's a day to day big deal.

Daily what are the changes? Well we go to PT once a week and do our execuses every night for 20 minutes. Nochy is supposed to be in his brace for 21 hours a day, so we do fight with him sometimes about when it's time to out it back on. It takes him longer to get in and our of the car and up stairs. But he is so quick and agile on his crutches, it's amazing. Since the summer has started nochy is surrounded by kids playing ball and I think it's so hard for him that he can't join in...

I think when it hits us the most is when other people see him and have a big reaction and they ask "what's wrong or what happened to him".  Then we remember it's kinda a big deal.

I included a picture of his teacher from this past year who was really a hero. He made the year doable for noch, and I will be grateful for the rest of my life.

The other thing I am grateful for is this amazing organization called chai lifeline and their camp, camp simcha. Camp Simchs is a place for kids with cancer or disabilities and it's an overnight, 2 week, best days of your life,  constant party type of thing. Nochy is going on July 28th and it's really been the one thing he has to look forward to this year. We're so grateful. 

Dr Roberts says we "stay the course " and we'll reassess in January,  so that's where we are free now. Nothing bad.... though a few times we thought he would need to be recasted but th rough the grace of G-d that hasn't happened (yet). And he says there might even be some signs that the bone is starting to heal, so that's awesome too.

Ups and downs,  smiles and tears,  that's pretty much been the year for us. Stay tuned for.more updates.

No News is Mostly Good News

Its been awhile since I last posted. And I think that's because when Nochy got his cast off it changed our lives. At first it was scary and it seemed like we were taking many steps backwards,

But after spending an amazing week in Orlando (I highly recommend taking a child in a wheelchair to Disney Parks), when we got back to our day to day life I realized that it got much easier.

In the brace Nochy can go up and down stairs by himself (he moved back into his room), get himself dressed, mostly get breakfast, etc. He can get himself in and out of the car.

Even better, we rarely use the wheelchair anymore, or at least not for day to day life. I don't have to shlep it to and from school- which was really killing me, and my neck and shoulders.

I still have to pick him up from school everyday because he can't ride the bus, but he did rejoin all of his carpools, which is unbelievable.

There are still a lot of hard times.....

Like the fact that the lady who made our brace has never made this kind of brace before, and truthfully, it's been like 2 months, and the brace is still not quite right (but we're working on it).

And at our 6 week checkup it became clear that Noch had already lost a lot of flexibility, so he warned us that re-casting might seriously be in our future. (I cried at that one)

And though his swimming has gotten quite good, and he is super happy to take the brace off for a few hours a day, he's still limited, which sometimes still makes him cry for hours on end during a bad day.

But we're really trying to take it day by day. He just got into a very special camp for kids with physical diseases this summer, and he's really excited about that.

Hopefully I'll update more regularly, but see pictures below from Orlando, walking around without his brace, and more.

The Brace

Thursday was a hard day. 

We arrived at dr roberts office at 815, we left the brace lady's office at 2 pm. Everything took hours longer than it was supposed to and caused a lot of issues.  I didn't get to work,  nobody ate anything,  it was insane.

But that's how it is sometimes I guess.  It was hard though and mostly due to the fact that no one had ever done this before. Dr roberts had put these casts on but not off. And Angela,  our brace lady, had never made an A frame brace. So yeah.

And I think we were all sad, none more than nochy, at how hard it is to adjust to the brace. He can hardly move again and couldn't do a lot of things he had already relearned  how to do.

And though it was amazing to take them off..... he can barely even move his legs, let alone support himself.

He refused school Friday,  but we made him go because it was his last day before we go on our vacation.

Today he cried when I put his brace back on after he went to the bathroom. He cried and said "isn't six weeks enough, why are you doing this to me". Man, straight to the heart.

But he'll get used to it, he'll get stronger, it just feels like a long road ahead.

Well wish us luck, tomorrow morning were off to the airport and disneyworld.  Hopefully my posts will get more positive once again.

Hopefully this vacation will be the uplift to our spirits that I think we all need right now.

Last night in a petrie cast

Can you believe it's been six weeks?

Well we can't.  Quite honestly the time flew by which is hopeful to all of you out there who are starting,  it really does become the new normal.

And I really believe that G-d did it this way on purpose in steps cuz I wouldn't have been able to handle it all otherwise. First complete activity rest, which we thought was so hard, then the Petrie casts for Sox weeks, which we thought would be crazy,  and now the brace for a year, which seems ridiculous, but maybe just maybe we'll be ok with that too....

So we'll let you know how it goes. We leave for Florida on sunday morning,  so stay tuned for brace pictures and ranting about putting a disabled child on a plane rants.....

When I went to pick up nochy from school today I saw something new, everyone had given the cast a bonvoyage by signing it, teachers, friends, aides, and so nochys dad and I signed it too.

Tomorrow is a special day for another reason to, it's our 15 year wedding anniversary. And thankfully I think the only reason we've been able to do this is because we have eachother. If we only knew all of the blessings and hurdles that would.come our way when we were young  and naive so many years ago....

Thank you everyone for your support, thank you G-d for holding us the whole way.

Let's see what tomorrow will bring...

Week 6, it ends and begins...

So here we are, a week away from when the cast comes off....

And in some ways, we're doing so good, I am shocked.

It's amazing what just becomes apart of your life when you do it for long enough.

Our days have their rhythm.  I drop noch off late, pick him up early, bring him up the stairs to our house and back down.

Devorah,  nochys big sister can take him to the bathroom and get him ready and into bed (including always remembering to prop up each ankle with a blanket or he'll wake up in the middle of the night screaming in pain if we forget).

It's just become life, and the time flew by, it's almost over.

That's the good, the hard is how clear it is to me now that life is not really about to change with the brace instead of the cast.

He will only be able to take it off at night to go up to his room, shower, go to the bathroom and get into bed. That's it. And possibly physical therapy,  and swimming once a week.

So this six week stint in a wheelchair will really be a year, and though I kinda intellectually knew that already, for some reason I was in denial until people started asking nochy if he's excited to get his casts off next week and he answered in the  affirmative.

So now we need to temper that, because it will be a touch easier, but not crazily.

I spoke to his teachers last night to make sure they were still ok, and I could hear that this was hard for them too though being the amazing people they are told me it's totally fine and they just want to make it work for nochy. But the classroom is small and he likes to run people over because he likes to do things independently.

And that's it for now.

Here we are smiling for the camera and on a trip to jewel. I forgot how crazy the whole thing looks until we go somewhere public like Jewel and people stare- its a little crazy. 

Going Back to School

Its been a few weeks since I started writing this post, but my overwhelming feeling  of gratitude towards my son's school knows no limits at this point.

 

Everyone disagrees with their kids school from time to time and sometimes even thinks the pasture must be greener on the other side somewhere.

 

And truthfully I was scared. There are a lot of reasons why it would have been easy for the school to say they couldn't accommodate Nochy in their school. I have read horror stories online of parents who were forced to homeschool during the duration of this Petrie cast thing (and if that had been me I don't think I would be alive to be writing this post, seriously, so you are all amazing those home schooling mothers.....)

 

But not only did my son's school welcome us in with open arms. They created this, as shown above. They threw him a party, decorated his desk with balloons, and the principal bought donuts for everyone.

 

Then when it was time for recess, they carried his wheelchair up to the yard (no it's not a scene from straight out of Compton) and made Nochy permanent quarterback....

 

Its brings tears to my eyes every time I think about it.

 

He still has it rough. He can't go to library since it's up too many steps and theres isn't enough man power to bring him out to recess everyday. I have to drop him off 15 minutes late and pick him up 15 minutes early everyday so he doesn't get trampled (or truthfully trample someone else) and sometime the sum total of everything he cannot do makes him cry and want to stay home.

 

But he can go to school! Hooray! Which means we can live a normal (ish) life during all of this.

 

His teachers are amaaaaazing. They are so on top of how's he doing, how he's feeling, and checking in with me all the time. And they do this out of the goodness of their hearts because they're good people.

 

More on how I've literally become a chauffeur another time- but life is gaining some normalcy and it's all thanks to my son's amazing school, principals, and teachers.

 

When Reality Starts to Set In

Today its two weeks since we got the Petrie casts on. And on one hand I am ecstatic about it.

On the other hand, it is starting not to matter that the casts are coming off soon, if there were only 4 weeks left it would be amazing. Because he is graduating from a cast to a brace. And that brace looks exactly the same as the cast, limits his activity the same way that the cast does, and although he can take it off to shower- he is supposed to be wearing it at least 20 hours a day.

So most of my posts will hopefully be upbeat and practical. But this one will now. I am not feeling any of those things right now. I am feeling overwhelmed and crabby. Which I think Nochy is too. He came home from school last night and cried about every little thing. The saddest thing he cried about was about being up on his crutches. He likes standing up and walking around, which is great and builds a lot of strength. But he can't be on those things by himself, he needs someone constantly behind him in case he falls, because he has no ability to catch himself and he will fall hard. I read another blog where the kid fell and shattered the other hip and needed added surgeries. Long story short, he can't walk around without a spotter.

But he doesn't want a spotter, he wants to be independent.

And I truthfully don't have time and/or don't want to just be following him around all day. I need to be in the kitchen at some points, or feeding the baby, or going to the bathroom, and I can't leave him alone if he's upright.

So this caused a lot of crying on his part, and a lot of chocolate eating and self pity on mine.

And yes, I know, one day at a time, but if he is supposed to be in this brace for 6 months to a year- this kind of life is not going away anytime soon. This schlepping in and out of the car, this wheelchair, this being spotted while standing, this sleeping in the den, this dropping him off and picking him up every day from school.

I think one of the hardest parts to me right now is that I'm the only one who can drive him and who knows how to get him in and out of the car. That feels like a lot of weight and responsibility on me. That affects my work, and truthfully my sanity. And what do I do with all my carpools? Dissolve them? Just drive the kids all the time anyway since why not, I'm in my car driving in that direction might as well just do everyone a kindness?

I'm feeling pretty stuck. Then I'm mad at myself, parents deal with much more than this every day and they get through it. Special needs kids parents are probably laughing at me right now, "Welcome to my life buddy". So I'm ashamed at my claustrophobia about this whole thing. But it's the truth about what I'm feeling right now.

This is a long haul journey and it kinda stinks- I'm just exhausted from everything, and feel like theres no end in sight though I know that's not true either.

I'll be better tomorrow, but if this blog is going to be helpful to me and to anyone else whos going through it- its gotta be real as well I guess.

Bah Humbug