Easton's Journey: Clubfeet

Let's start with this adorable picture of you sleeping peacefully! Isn't it great!? 

Now, let me also say this post will appear mostly negative. I want to be honest with this journey - I'm not sugar-coating it and making it seem better than it is....so even though this post will seem negative I love you more than anything and even though we are in a rough time I know we will survive and it will pass! :)

So, with that said, you have stopped sleeping. About a month ago you got sick, running a 102.5 fever for a couple of days, typically when you're sick we don't make you wear your brace. You're already uncomfortable from being sick we don't want to make it worse - plus you don't sleep well when you're sick the brace would make it worse. So, it started with that. Then there were a few interruptions, we were out late - we weren't home, etc. that you didn't wear your brace those nights either. Then you started screaming when I would put it on, all in all it was a rough few weeks. Then we started putting it on again EVERY night and you decided you hated the brace....HATED it! So, I started waiting for you to fall asleep, then I would put your brace on once you were asleep - this was fine, you would sleep for (hopefully) two hours - then you would wake up and FREAK OUT! This has now been our normal for two weeks now and it continues to get worse. The past week you either scream or cry for four hours in the middle of the night - it's awful! 

Let's recap this week alone:

I don't remember Monday night....but

Tuesday night: You woke up at 10:00 and SCREAMED until 12:00 when we took your brace off. I mean scream until you're about to get sick scream! 

Wednesday night: You fell asleep GREAT!! Then I came out to the living room and sat down to do some work for school, I fell asleep within five minutes!! I was passed out by 8:30. At some point your dad brought you to me (maybe around 9:30) and you fell back asleep. Then you woke up around 10:00 and cried off and on until 4:00. You would sleep for about 15 minutes, then cry for 30, then sleep, then cry, it wasn't great....but at least I was able to sleep every so often. Plus, I had slept great from 8:30 to 10 so I was well rested from that! Then, at 4:00 I took your brace off so I could get one good hour of sleep before I got up to work out!

Thursday night: TERRIBLE. You woke up at 10:00 - I had not been to bed yet, so I did not sleep at all. You SCREAMED from 10-1.....you wanted me out of bed, you did not want to rock, you wanted to put your brace on my face, it was awful. I did not sleep at all. Then at 1:00 I turned on Choo Choo (Chuggington) I slept while you watched two episodes, then when it was done you woke me up saying uh-oh and I couldn't believe you were STILL awake!!! So at 2:00 I took your brace off because You have to get sleep too!! You are a growing young boy that needs to rest and all of this lack of sleep is going to be bad for you. 

So, that's our recent. I called Children's Mercy on Wednesday and talked to Dr. Jarka's nurse. She said that it could be that you are just more aware and voicing your opinion. If that is the case it's fine - I will continue to fight you, knowing eventually (hopefully) you'll sleep better. But, all of the medical ideas she gave me: check the length of the brace, do the shoes fit, prop his feet up, switch to a bigger bed, we have done. Plus I have tried all the sleep ideas, like oils, milk before bed, etc, so the nurse scheduled us an appointment just in case there is something else wrong either with your feet or your brace. In my gut I just feel like it's your feet - but I think that's just the nagging worry that is CONSTANTLY there. I think that worry will FOREVER be in the back of my mind worried you're going to relapse....I pray that is not the case. You've always made such great progress I'm sure Dr. Jarka will say you're doing great. So, we'll go up to Children's Mercy on the 27th and hopefully have some more answers. Until then we will continue to battle it out at night.

Other than the middle of the night sleep troubles you would have no idea you had any problems with your feet. In fact, I told daycare today that you didn't sleep because of your brace and some of them had no idea you even slept with a brace. You play and act fine at school no one even knows you were born with club feet!!! Also, when I took you to the ER the other night (that's a story for another time) the doctor there commented on how well you were walking! 

So, hopefully, we're in a phase of life that will pass quickly and we can all resume our not great sleeping - but not TERRIBLE, no sleeping pattern! :)

I'll leave you with this handsome picture, of a little boy that just wants to go outside and play! 

I love you little man! 

Mommy

Update: 4/19/2015 - You were laughing crazily tonight and I peeked in to your mouth and you have MORE teeth! You have two molars (maybe more - you wouldn't open for me to see) plus at least three others coming in....so, it could possibly be that you were not fussing for the past month, especially the past week, because of your brace but maybe it was teeth. However, you couldn't communicate that and you communicated to me that it was your "shoes". I so wish I had known those back molars were coming it, I would have tried to give you some relief!!!