My thoughts

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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August 8, 2017
Gavin / General Medical Stuff / My thoughts

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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August 7, 2017
My thoughts

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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August 7, 2017
Gavin / Immunology / Medical Crisis / My thoughts

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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August 7, 2017
Lizze / My thoughts

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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August 7, 2017
My thoughts

I’m going to make the best of it

Gavin's currently getting his labs drawn and I'm anxiously waiting for him. I'm exhausted after a long night of very little sleep, and that sucks. I can also share that I've lost a little over two pounds since last week. As Tired as I am, I'm totally stoked about that. ☺  The boys go back to school in ten days and I really need to get back into our routine. My hope is that this will help with my stress level, and that will help with my overall everything.  As for today, I'm going to make the best of it.. 

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August 7, 2017
Elliott / Emmett John / My thoughts / Sensory

Bedtime has become a sensory nightmare

Last night was a challenge once again because Emmett wasn't tolerating a blanket. Everything has to be just so, in order for him to be comfortable enough to fall asleep.  I'm going to be brutally honest here. I didn't even dick around with trying for extended periods of time to help him work through this.  At this point in time, it's more important that we all get some sleep, rather than worrying about the means in which we obtain it.  Like I said, there was no dicking around. I went straight for what we knew ow works and works rather quickly. That approach is as simple as snuggling and singing him to sleep in our bed. For whatever reason, it's helping him fall asleep.  He used Lizze's super soft blankets…

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August 7, 2017