Recovered...again

This last 'crack' must have been minor since Ethan was only down for a few days before he was back to his ornery self.  He would take off walking and then stop and say quizzically, 'Mom, I have owie?'  I had to laugh and responded, 'I don't know.  You tell me!'

We had to delay some of our plans, so this week should be fun catching up.

Counting

So Ethan was fully healed from the femur fx that happened 2 days after Christmas.  His PT noted that his stance was back to where it had been before surgery too and he was gaining strength and running again.

Then.............a few days ago we were outside enjoying the unseasonable weather.  I was sweeping the porch while Ethan chased after the dogs.  Our dog, Scrubs, uses a chain when outside on the front lawn.  Otherwise he takes off and has no regard for traffic.  It has been a concern for some time that he could trip Ethan or knock him over with the chain, so we typically stay close by when they are out there together.  When our neighbors dog exited their house, Scrubs darted off after her.  Before I could get to Ethan, Scrubs ran around him wrapping the chain around Ethan's legs and as you can imagine once he reached the end it was pulled tight.  Ethan went down hard and Scrubs was still straining against the chain.  :(

Ethan calmed down quickly, but immediately said he had an owie in his lower right leg and couldn't walk.  We are 2 days out now and he has already started taking steps again, but most of the time he is scooting or using his walker.  We think it is a micro fracture or crack in the osteotomy of his right tibia.  He hasn't needed pain meds or complained of pain since the initial event, but he has been self limiting.  So we are taking it easy this week.

In better news, Ethan and I were working on a puzzle earlier and he did a great job placing the numbers 1-10 in the puzzle and then he recited them for me.

Discover The Dinosaurs

E is loving Dinosaurs lately so we were excited to find that 'Discover the Dinosaurs' is in town at the Convention Center this weekend.  E zoomed around the exhibits using his walker and named each of the big animated Dinos for us.  I had to read the signs, but he knew them all by name.  He did not get this from me, obviously.  I still can't pronounce most of them.  :)  I wish I had pictures of him next to the Dinos but he decided it was best to keep his distance.  He yelled, 'Dinosaur going to eat you' and ran many times.   I think we may need to cut back on the Netflix Dinosaur movies.

It was crowded and full of Toddlers so I was a little nervous, but the walker was just enough to draw attention to E, so he didn't get knocked over.  Once we finished with the exhibits we ventured into the play area.  E immediately noticed the huge bouncy house/slide/climbing complex at the end.  They were blaring music and the line to enter it stretched almost the length of the room.  We tried some of the lower key activities such as playing in Dino Land, coloring, watching a Dino movie, etc.  He lasted all of 10 seconds at each station.  I thought we found a winner at the Digging for Dino's station.  E loved this and played there for a while.

Checking out the little Dinosaurs in Dino Land

Digging for bones

Look what I found

The look I received when I asked him to smile.  Haha..he said 'I digging, MOM'.  His teen years are going to be fun.

Eventually I had to remove him when it got crowded and after repeatedly asking the larger and older kids to stop reaching over/under E and stop nudging him over.  I realize that the parents of these children probably didn't even notice and they have no idea that if 'Little Billy' slips and falls on E or knocks him down while crowding into his personal space, this could easily result in a broken leg, arm, wrist, etc.  I certainly am aware of this scenario and it plays through my head each time I see 'Little Billy' take a step closer.  Instead of looking like a crazy lady and just announcing that everyone needs to step away from my child, I hover and try to anticipate 'Little Billys' next move.  Today, I nearly chose the crazy lady route.  It does get irritating when the parents just sit there and do nothing.  Anyway, it got out of hand so we had to move on.

We were directly across from bouncy heaven at this point and as much as we had tried to steer him away from the attraction, he darted over to the exit (no lines...smart kid) and tried to sneak under the rope.    We had to drag him back and explain that he could not go into Bouncy Heaven.  The look on his face and the tears that followed broke my heart.  We chose to leave the event, with both Ethan and I in tears.  E was crying because he really wanted to play with all of the other smiling screaming kids who were bouncing, dancing, sliding.  I was crying out of frustration/anger/sadness because this is first time he REALLY REALLY wanted to do something and we had to say No for safety reasons.   I have said No before to certain activities but E is usually easily satisfied with another activity....not today.  We always focus on the fun activities that he CAN do, and that typically works well for all of us.  This just wasn't good enough today, for either of us.  I wanted him to experience Bouncy Heaven just like all of the other hundred kids waiting in anticipation or having so much fun in there.  :(

So, we both had our tantrums and now I'm trying to find a safe alternative or better yet a Bouncy Heaven that is not so crowded where we can keep our distance from others and let him bounce away.  Feel free to comment with ideas, especially if you live locally and know of a place we can go!!!!

Determination!

One day shy of 1 week post femur fracture and he is back up on his feet, walking using his walker.  He never ceases to amaze me.  :)

Chef Ethan

At 3 days post femur fx, I found Ethan doing this:

He still complains of pain on occasion, but seems to be doing much better.  He is scooting all over and has tried standing multiple times.  He can't really put much weight on that right leg but nothing stops this guy. He is getting on with it, and so are we.  :)

Fractured femur

We knew this day would come but I don't know that you can ever truly be prepared.  We try to be prepared.  We have a splinting kit, medicine, emergency phone numbers, and try to stay calm.  We have had a few close calls in the last several months, but this one seems to be the real thing, UGH!

Ethan was running across the kitchen floor last night and fell like he has a thousand times before, but this time he screamed.  I scooped him up and tried to calm him down.  It took a few minutes and he was holding his right leg the whole time.  Once he calmed enough to talk he said his leg hurt where he was holding it.  I gave him pain meds and waited for them to work before moving him.  He wanted to play so we sat on the floor and he decided he needed to lie down with his right leg tucked under him.  It must have been comfortable for him because he refused to move for an hour.

I was ready to burst into tears so we called another OI Mom and asked her opinion on splinting him.  Since he was calm she suggested to try ace wrap first and then if he wasn't comfortable splint him with something stronger.  My sister and nephew were here so they distracted him while I double ace wrapped his leg.  He did great but was still really uncomfortable with just the ace.  Around 3-4 hrs after the fall I got him properly splinted and prayed I did it right!  I have splinted him this year after surgery and the post op splint was causing pain so I created a new one, but it is different when dealing with a fx.  I feel like a newbie in this area.  We have had 3 rodding surgeries now and I know what to expect and how to handle that, but Ethan hasn't had a major fracture for 2.5 years.

Ethan slept well last night with me and my sister, waking only once.  He did sit in his wheelchair for about 10 min today and wheeled around but really he is uncomfortable being moved at all, so I am trying to limit movement as much as possible.

What I was not prepared for is the questions.  Ethan does not understand why a simple fall caused a big owie.  He keeps asking what happened to his leg, if he can chase Scrubby now, if he can stand up, can he take off the splint, why his toe toes are stuck, etc.  At his age, I'm not sure how much he understands.  I have never really tried to explain to him that he has fragile bones.  He understands when he has surgery that he gets owies and we explained it is to make his legs stronger and to fix his bones.  Some part of me doesn't want to tell him he has OI.  I don't want it to change how he views himself.  I just want him to be the happy, carefree kiddo he has been.  I suppose he will have to learn what his limitations are but I don't want him to be afraid.   OI is such a roller coaster.  I was initially very sad and hurt because Ethan was upset, now I'm just angry and would like to punch OI in the face.

Meet Me

The OI Foundation has a new page on their website called 'Meet Me'.  It will feature individuals with OI and give a quick background.

Ethan's story is up in the 'Meet Me' section right now.  We have already gotten positive feedback from other parents who read it.  I think it is great that our little man can inspire others as he inspires us in so many ways.

OI Foundation - Meet Me