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

Chanukah with a Petrie cast

Chanukah is now winding down, and it seems to me that now chanukah and casts will be intertwined for awhile

 

 

 It was probably good and bad that Chanukah started just as we were coming home from the hospital. More good than bad.

 

Good because it was an incredible distraction. The whole week was wild. There was potato latkes, and sufganiyot and Chanukah cookies everywhere. And the presents, oh the presents. It was amazing.

 

It was good because all of the kids got presents, and not just Nochy. Whereas any other time during the year the sibling jealousy factor would have gone through the roof.

It was also good because he didn't miss much in school last week. They partied last week and didn't cover much material.

 

It was also hard though. Thursday and Friday all of my kids were home including the baby and that was a lot for me all day everyday as we were adjusting to this new kind of life.

I had to make plans for everyone and make snacks and lunches for everyone at all different times. The house was a royal mess and no amount of cleaning could keep up with it because everyone was just home at all times.

 

Having Nochy in a cast is like having another baby, and this baby is large and I'm unable to pick him up. I have to dress him, bring him food, and bring to the bathroom. Anytime he needs to switch positions he calls out for me to come. I'm not complaining, just stating the reason why I end every day exhausted.

 

But then theres the scenes above. Watching my son light the menorah from a wheelchair in the beginning and then from there to crutches.

 

And I realize what really matters. How lucky we are to be here, to have each other, and to witness all of the miracles of daily living.

 

This was hammered home even more so when I went to the Chair Lifeline Chanukah Party on Sunday. I walked in to an auditorium filled with people that have challenges in their lives.

 

I knew a lot of people in that room, but I didn't know that a lot of people struggle with an illness of some sort. It humbled me to the core to think that so many people that I interact with on a daily basis have deep hardships that I know nothing about.

 

Miracles are not about the big things. Money magically appearing or a person who was told they would never walk again suddenly being able to dance. Those are miracles- but few and far between unfortunately. Miracles are what people are able to accomplish on a daily basis through their pain. Miracles are being able to take your sick kid home from the hospital right on time. Miracles are being able to smile while your loved one sits through chemo. Miracles are being able to come together as a family or a community even though the burden there is bear is so heavy.

 

I am humbled by everything that people have done for us in the past few weeks. Our friends, our family, our community, everyone is just amazing.

 

I am so blessed to be able to light the Chanukah lights with my family, no matter what challenges we're facing at the time, big or small, physically or otherwise.....

 

Gratitude, just like happiness is an active choice that you must choose to make again and again and again.....

 

Nochy lives that every day, he has shown me that, I just hope I can live up to his example.

Learning to live life with a petrie cast

So it's been a week since the surgery and I can't believe it. It's been so long and so short at the same time.

We are doing ok and it amazing how different every day is.

 

Never thought I would say this, but thank G-d for a portable commode. On days when by the time I get to Nochy he REALLY has to go to the bathroom, theres no time to get him all the way to the bathroom, so this portable toilet is the best thing ever.

 

Also, he can't stay in his chair the whole time- so we have been trying out different positions, especially to help him be able to get off his bottom, which gets pretty sore from sitting all day. This tummy on bean bag chair position also helps him to be able to play on the floor, which is great for all sorts of games.

 

The two most difficult situations are going to the actual bathroom and getting in and out of the house and into the car.

 

For the bathroom, this has gotten better the more the week has gone on. We can now drive him down the hallway to the bathroom, then get him up on his "legs". Then he can miraculously drag himself through the bathroom using his arms grasping the bathroom sink vanity. When he needs to only stand up and go to the bathroom, he can mostly do this by himself, and then wash his hands and be done. I just have to help him get back into the seat and spot him while he is standing so he doesn't fall down. When he needs to sit down to use the bathroom I have to pick up his legs and hold them for the duration and just pray I don't get peed on (yes that has happened).

 

The other really hard situation is going up and down the stairs in front of our house and getting in and out of the car. For the time being I have been "bumping" him down in his wheelchair. And then we pull the chair sideways really close to the open van door. Then we put a bean bag chair in between the seat and the car and I hold his legs and he crab walks sideways into the car. Then he buckles and I put the beanbag underneath his feet. We get out the same way. We have been experimenting with possibly using the wooden board underneath his legs as a plank from his chair to the car bench seat and this might be an easier surface to use to hand crawl across. We'll keep you posted.

 

The way up the stairs and into the house hasn't been easy- the "easiest" has been having his crab walk backwards up the stairs while I hold his legs. We have also done a fireman carry when there's someone else with me. We just have to be careful to never lift him from the top half of his body.

 

Week One is now done, only 5 more to go......

 

 



Coming home with petrie casts

 

 

So here we are, in the car on the way home, and then on the couch, and then cruising around the house in his wheelchair.

 

Theres too much write about what has happened in the last few days. But because I'm hoping that this blog will be helpful to other people in situations like ours- I'll try to write some of the important things.

 

The first night that we were in the hospital Nochy cried and yelled most of the night that the cast was hurting his heel. Even the highest level pain medication wasn't helping him to sleep or to be more comfortable.

 

So Dr Roberts came in with a cast saw, and sawed off the left foot of the cast, which brought immediate relief, thank G-d. He said he would rather leave the right foot in the cast, especially since the positioning of the right leg is the most important part because that's the Perthes affected side.

 

Once that was settled, the rest of the day on Friday was insane. We had OT and PT people in and out of our room the whole day. Since most people in the hospital had never seen a cast like this no one was prepared. They scrambled around pulling different things from their offices in to our room trying to figure out which would work best. Nurses came in to watch the session so that they could also learn how to help us help Nochy.

 

Since the average wheelchair legs go straight forward and Nochy needs support in an 'A' position, they put down a board and then put a pillow on top of it. He doesn't fit in a walker, so they brought these half walker things, which didn't help either. Then they brought crutches for him to balance on. He amazed all of us with his upper arm and core strength- but he literally can't move or even drag his lower half, so we have to do that for him.

 

All day we practiced standing him up, getting him in the wheelchair, taking him to the bathroom, and lastly and the most difficult- getting him in to the car.

 

The car situation is a disaster truly, but I'm hoping it will get better. His legs barely fit through the sliding doors and he can't hoist himself from the chair to the high up bench seat so for now it takes two people- one in the car and one outside of the car to hoist his casted legs. Luckily he fits in one seat and then needs something in the footwell of the car to support his legs out in front of him. As winter comes with snow and ice I just keep trying to think day by day instead of jumping to the worth case scenarios.

 

I also learned how to help him flip over onto his stomach- he kinda looks like a starfish as he's being rolled.

 

Another note- the typical urinals they use for boys to help them go to the bathroom post surgery does not work- they don't fit with the bars between the legs. We found this out the hard way when nochy said he had to go after surgery and like 3 bags of IV and then all of the sudden we couldn't get anything there and he was screaming, Poor kid- but a simple water cup did the trick eventually.

 

I have a lot more to say but I'll save them for future posts. The snap on basketball pants were helpful, as was taking boxer shorts to the tailor to have Velcro put in.

 

We ended up spending a small fortune on pillows of all shapes and sizes to help him be comfortable in the pull out couch in our den (aka nochys new bedroom). We also needed to replace the blinds in the den because this is his new room and sometimes bathroom (more on the portable commode later). And we bought a longer board then they gave us from the hospital to put under his legs on the wheelchair which seems to support him well.

 

But I want to end on a positive note. Nochy is amazing. He's smiling, he's in good spirits, and he is so resilient. I'm majorly impressed with him and so thankful to G-d for his strength. Another amazing piece is our community. The outpouring of texts, calls, gifts, food, and more has been breathe catching. I feel so grateful and overwhelmed with how amazing everyone is and it makes me feel bad that I haven't been there for others in the way people are for me at this stage of life.

 

Lastly, Thank G-d, really and truly. Hashem is amazing and has been so clearly with us through every step of this process.

 

Who knows what the future will bring, how long he'll be in the brace, whether he'll need an osteotomy, or casts again- or how long until he's up and running again-but until then- we know Hashem is not only with us, but carrying us through.

 



Surgery Day

Well today was the day we've all been waiting for,  petrie cast day. Since thankfully I haven't had a lot of experience with surgeries this was brand new to both of us.
He couldn't eat at all today which was hard because the surgery was in the afternoon.
When they finally took us to the OR, we met a lot of different people,  dr roberts ofcourse,  but I couldn't believe how many nurses, PAs, and anesthesia people there were.
They explained that he'd breathe into a mask and he'd fall asleep and then they'd give iv sedation in the OR. Here's some pictures from before they got started.

Then they took him away, and I thought my throat closed for a second but it passed quickly and on came the waiting game.

It's scary to be in a surgery waiting room. Every time the door opens, everyone looks up, everyone is so nervous and tense.

They told us two hours so by two and a half hour I was going crazy.

Then when I was a minute away from losing it out came dr roberts.  He said the surgery was successful,  he put the casts through the feet and there's a  double bar.

They cut the groin muscle and inserted a camera so they could put his hip socket just where they wanted it and then casted him that way.  They also took a mold for the brace he's going to wear after the cast.

Once I was finally allowed to see him in recovery he was not a happy man.  Just pretty weepy and not happy about the IV.

Dr roberts mentioned that it is possible he may have to do the Petrie casts more than once,  phew, breathe, one day at a time.

Since then he's had some ice cream and water but not too much else.

He has said more than once,  "mommy this cast is so heavy".

His teacher called and he got the best smiles out of him so far.

That's it for today,  I hope we both get some sleep.

Two Days Away From Petrie Casts

So here we are two nights away from Nochy's petrie casts. I guess now from other stories and things I can only hope that it's his only petrie casting.

My good friend started a webpage which allows people to sign up to make meals for us and its so heart warming to see how wonderful and warm people are being. Its kinda making me weepy how amazing everyone is to us.

Some things are ready- like we have a. bean bag chair, we know how to tip he seats backwards in the middle bench in the van so he can sit, and we hopefully have an aide in school for his return-

But I didn't think of everything- like underwear- so I'm going to quickly bring some boxer shorts to the tailor tomorrow to see if they'll add some snaps or Velcro. Oops

The amount of things I know I haven't thought of is enormous.

They called us yesterday to ask what color casts Nochy wants- and I'm embaressed to say I don't know his favorite color.

Apparently he had thought about it already and so he quickly responded "light blue and make sure it's extra comfortable." I relayed that message over to the PA.

We find out tomorrow what time his surgery actually is, even though it is scheduled for 2:30. Hopefully it will be somewhat earlier than that- since he probably has to fast because of the anesthesia.

My stomach hurts, all my kids are sick of it already- they just want it to be Thursday- casts day- because I think the tension is getting to all of us. My husband is actually in Israel, poor guy, and he'll return Friday morning after the surgery. Its not ideal, but we needed six weeks so we could get the casts off in time to go on the rides at Disney world.

That's it for now- more to come soon.