I’m scared but we need answers

Today is a really big day because we will be making the trip to Cleveland in order to visit the immunologist. I'm unsure of what to expect because we don't know what is causing this issue with Gavin's blood.  One of the things that concern me is that I haven't been able to get the results of Gavin last blood draw from Tuesday.  There are several things we hope to learn at this appointment. The biggest is what are we going to do about thays happening to him. That's something we may not have an answer to until we know what's causing his levels to drop in the first place.  My thought is that we will either be returning to the hospital to do much larger infusions or we will…

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A few things I want to do for my family

I started writing this awhile back and never got around to finishing it. As a parent, I always want what's best for my kids. As a special needs parent, I still want what's best for my kids, it's just harder to get there.  There are a few things that I'm looking to accomplish, that will improve our immediate environment.  Not being able to take away their struggle or pain, is difficult on me. I wish I could take away all their burdens, just like any other parent would. Unfortunately, that's not how life works. Like it or not, there's only so much we have control over.  Putting focus on what I have a better chance of controlling is what I've chosen to do.  I've been thinking about some of the…

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Autistic boy needs hospital treatment after ‘bullies’ leave plank of wood impaled in his head

I want to bring this to everyone's attention because we clearly have a great deal of work that still needs to be done. We have to do a better job of raising our kids. For a child to be able to do this to another child, is really scary and says a great deal about the current condition of society.  Please read the article at the link below and please talk to your kids about bullying.  http://www.independent.co.uk/news/uk/home-news/boy-bullied-nail-head-plank-wood-romeo-smith-mansfield-a7884146.html

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I feel so much more human today 

After taking care of a few things I needed to get done, I slept for most of the morning. I desperately needed a break and the sleep. Lizze is having a much better day today and I feel so much more human after my shut eye.  I'm grateful for all the concern showed to both Lizze and I. We're okay and she saw her psychiatrist yesterday. He removed a medication that she began last month because it was not helping, and likely behind her recent struggles.  It's important to remember that when I write I try to do so in real time as much as possible. This means that you're reading what I'm thinking and experiencing in the moment. This isn't necessarily a reflection of how I feel or what…

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Hoping I’ll feel better as the day goes om

The boys will be going to hang out with my Mom today. They'll leave about lunchtime and be back a few hours later. We definitely need the break today, that's for sure.  Lizze and I have no plans for today and I'm super okay with that.  I'm exhausted and plan on sleeping when the boys leave. I'm hoping that I'll feel better as the day progresses. 

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A really bad day but it got better

I'm gonna make this quick because it's been a long day and I'm exhausted.  It was a really rough day for a million reasons but things improved as the day went on. Sometimes I crumble under all the pressure because I'm human and that's okay. Today was just one of those days.  On a positive note, we made some progress on the Gavin getting a wish granted front. I'll hopefully be able to share more later. For now, please continue to keep your fingers crossed because Gavin truly deserves this. 

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Finding a silver lining in a shitty day

I'm not having a good day. There's no way to sugar coat this at all. I'm just not having a good day.  Lizze is struggling, and frankly, that impacts all of us. I'm under a tremendous amount of stress and pressure. Some of which I put on myself, and others that I have no control over.  Emmett's struggling and all Gavin wants to do is talk to me about his games. I can only take so much of hearing about his tablet games. I bend over backwards to accommodate this because it's something he's really proud of and wants me to be a part of. But it's not easy.  I didn't hear back about Gavin's labs today and it'll have to wait until tomorrow now. That has me on edge. …

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The back to school countdown begins

I love my kids and would rather have them home with me than not. At the same time however, I'm counting down the days until next Thursday when they return to school.  We have some major concerns as far as school goes this year, mostly in regards to Emmett.  Aside from the medical and sensory issues, there's still a great deal to prepare for, the biggest and most challenging is clothes. Emmett and Elliott both need school pants. The problem is, the pants they need probably don't exist.  Elliott does okay with clothes, for the most part. Emmett is the real challenge and finding him pants he'll actually wear has been impossible thus far.  He has to have them fit a certain way, or else he won't be comfortable.  The…

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