We’ve been hit with a new #Sensory issue

We've hit an unexpected, but not all too surprising bump in the road with Mr Emmett. I've shared many times how sensory processing disorder impacts his life on a daily basis.  Here are a few examples.  Emmett hasn't worn shoes and socks in over a year. He's worn socks temporarily on a few occasions over the last year but that's all. He will only wear crocs, but not just any crocs. His crocs have to have a smooth insole. There can't be any texture to it, or else he won't wear it.  His shirts have to come exactly to his waist. Any more and it's too big. Any less and it's too small.  He will only wear pants that don't button or snap. He can't do buttons or snaps on…

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My mind is writing checks my body can’t cash…. yet

First a super quick update..  There were some things we had planned for the weekend that we've had to cancel in light of Gavin's current circumstance. It sucks but there's no question it's the best thing to do, at least until we know more.  I was thinking about taking the kids to see the new Transformer's movie, until I remembered about Gavin. We'll have to do a movie night at home instead.  Anyway, the point of this post was to share a bit of outside the box thinking.  I'm really working to get back in shape, or at least better shape. Getting back to where I was before a major back injury and three kids, is a tall order. lol Lizze is sleeping and frankly in rough shape at the…

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I’m feeling especially human after the week we’ve had

This week has taken its toll. Actually, the last two weeks have taken their toll. As much as we try to shield the kids from the grownup things we have to deal with, they almost always pick up in it. They might now know what's wrong, but they know some things wrong in general. They're very perceptive.  I don't know how long it will be before we see the other side of this tunnel, but as of yet, I'm not seeing any light in front of us.  Neither Elliott or Emmett were able to fall asleep last night. They both had their Melatonin and Benadryl, but Emmett didn't fall asleep until right before midnight.  I ended up on the couch in the living room with Elliott, and he wasn't out…

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There’s good news and bad news

Yesterday was a really challenging day, for a great many reasons. I didn't share the results of Gavin's bloodwork from yesterday, mostly because I was too overwhelmed.  I wanted to bring everyone up to speed, because I'm getting a lot of inquiries from readers. They're concerned and I totally appreciate that.  Gavin's labs yesterday were a mixed bag.  The good news is that Gavin's platelet count in up to 152, which is good. His white cell count remained the same as the previous day, and came in at 4.0.. Unfortunately, Gavin's Neutrophil level dropped to 2.1 from 2.2 the previous day.  Like I said, it's a mixed bag. I'm still very concerned because his levels are still low. I'm also concerned that his Neutrophil levels are moving in the wrong…

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I’m smiling even bigger now

We've pretty much been trapped inside today. It's Hall of Fame week here is Canton, and it's taken over pretty much everywhere.  The boys and I were going to go to the park and walk, but the Police have the park closed down because of what I think is celebrity parking. The park is full of huge RV's and tour busses.  People are already camping out on the side of the road, in anticipation of the parade in the morning.  If I look out my windows, I can see all these tents lining the parade route which is less than a hundred yards from my house. It's going to be extremely noisy tonight because everyone camping out will be partying. There's usually a DJ and really loud music.  People don't…

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I’m so proud of Gavin 

Gavin's labs have been drawn and I'm waiting to get the results. I'm cautiously optimistic about today's numbers because yesterday they were coming back up.  In the meantime, I need to get Gavin's IVIG infusion started.  We are supposed to get a new delivery of his supplies today but they haven't arrived yet. There's enough to do today's infusion but we have nothing left for Monday.  I'm so proud of Gavin because he's taking this like a champ. He's already had his blood drawn four times this week alone and that will at least continue into the middle of next week. It depends on the results of said bloodwork.  He's not complaining, although he'd prefer not to have to go through this.  As hard as this is for Lizze and…

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Keeping myself distracted 

The weather isn't going to be kind to us today, and that kills the chances of walking outside. The boys are bored and, I need to find us all something to do.  There are some things I need to do before we can do anything. Once thays done, I'm thinking about taking the kids to a dollar movie.  Perhaps a movie is a good idea because I have hours to wait before getting Gavin's lab results back. I need to be distracted. 

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Fingers crossed, prayers sent, and positive thoughts… 

We're off to get Gavin's bloodwork done for the four time in four days. I truly hate doing this to him but it's what has to be done. I was hoping to go for a walk but the weather isn't looking too good.  I'm going to be very much on edge until we get the results back this afternoon. Based in the results, will likely determine how I proceed.  Waiting for the results to come in is absolutely torturous, and it eats me alive.  Finger crossed, prayers sent, and positive thoughts... 

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