THE BAD NEWS – The challenges we face as a special needs family can feel crushing

I mentioned that yesterday was a rough day.  There were a few things that occurred that made things difficult and some things that have yet to be resolved.

We still haven’t figured out Gavin’s home IVIG infusion. That’s really starting to make me angry because this should have been resolved over a month ago.  I will have to call the immunologist in the morning and get an update. 

Along the same lines of things not being figured out yet, Lizze is still waiting to get her hormone replacement therapy cream approved. So far….. No bueno.


Perhaps the most distressing  was from today is that Emmett has it another fever flare.

He was complaining about his bottom front teeth since the other night.  I looked and his teeth seemed fine.  We were going to schedule a dentist appointment but this afternoon when I looked again, I saw the problem.

It wasn’t his teeth hurting. He has the sores he gets during a fever flare, all along his lower gumline.

This sucks because he’s going to be absolutely miserable and that breaks my heart.  There isn’t much we can do to help him because no one knows what causes this.

I hate when any of my kids are suffering and when he hits one of these flare, it’s particularly painful.

That pretty much killed the day for me.  I’m hoping this cycle is a quick one, for all our sakes. 

I’d love to say that the rest of the week will be better but we have a big ass winter storm blowing in today and we will most likely have another snow day on Wednesday. Another snow day… Unbelievable. 🙁

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Lost_and_Tired Hang in there! Consider attending our May Conf. 1000s of parents + 100s of medical experts = best chance to find answers.

Janet Meliti

oh so true.