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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Last night was exceptionally difficult 

Gavin and I got off to a late start in regards to his bloodwork, but Lizze and I both had rough night sleeping. Emmett was really struggling with everything. He couldn't get comfortable in his bed, our bed, under any blanket, and no matter way we tried.  I slept on the couch because I felt that was the best way Lizze and Emmett would both be able to sleep. Emmett was sleeping before I went to the couch.  Anyway, Gavin and I are at the lab right now. He's waiting for his turn and crossing his fingers that this will be the last daily blood draw.  As long as his numbers are good, we will probably move to weekly blood work, and Gavin's okay with that.  I'm really hoping that…

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Good News, but I’m cautiously optimistic 

I wanted to share a bit of positive news tonight before I go to bed. This will be quick because I'm emotionally and physically exhausted.  The doctor called with Gavin's lab results, and things have improved.  His platelets are at 160, his WBC count is 4.4, and his Neutrophil is 2.4. These are all movements in the right direction and that's good. The problem/concern is that we have no idea why they are rising, or why they fell in the first place.  For that matter, we don't know what to expect as we move forward. Until we do, I feel like we're flying blind and that's scary. His numbers went down so fast, it was literally overnight.  At the moment, I'm counting my blessings and will take things one day…

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Is the other shoe gonna drop? 

The day has been tough one. I'm really trying to reduce my stress levels but life doesn't want to cooperate. The boys have been out of control today and I'm now officially counting down the days until school starts next week.  Gavin seems to be doing okay today and I'm grateful for that of course, but I can't help wondering when the other shoe is going to drop.  I'll have a larger Gavin update in a little bit. Right now, I'm focusing on relaxing and trying to bring my blood pressure down. I'm currently hypertensive and that's got me really stressed out. I see my doctor on Monday and we'll see how I'm doing then. 

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Here’s what we’ve learned so far today

I'm still unable to reach the nurse who let's me know Gavin's lab results, but I do have something to share in the meantime. I received two followup calls from Gavin's immunologist's office this morning.  The first was to check and see how he was doing today. They also wanted to find out his lab results from Friday. I'd forgotten to relay those to them Friday's afternoon. I was too distracted and I screwed the pooch on that one.  I received the second call after his doctor heard the results of his labs. She wanted him scheduled and seem with her as soon as possible. She's not liking the fluctuating levels, and frankly, neither do we.  We will be driving him to a Cleveland on Thursday and from there, figure…

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I hate last minute schedule changes

This afternoon has turned into a giant cluster fuck. It's not a huge deal but it is stressful to have constant changes made to our schedule.  We were getting ready to take Lizze to her appointment (she doesn't drive) and I suddenly realized that Gavin's IVIG infusion was still underway. He had too much time left and there was no way we could ask him tonfinish his infusion in the car.  The only choice to cancel the first appointment and reschedule the second.  I hate canceling or rescheduling at the last minute, but I goofed up in this one. I should have waited until this evening to do Gavin's infusion.  Regardless, it's not a huge deal. Lizze is rescheduled for tomorrow afternoon and Gavin will finish his infusion in the…

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