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Friends,

As those of you who follow Diary’s Facebook page may know, we’ve had a harrowing few days. Brooke and I spent a horrific night in the ER on Monday and left with the terribly unsatisfying diagnosis of ‘We’re not really sure what happened here.”

Although we’re hoping that the answer will be that she had a migraine (and that, if that’s the case, she never, ever gets one again), there were some really unsettling events that night that looked suspiciously like seizure activity.

Given that at least 25% of children on the autism spectrum will experience seizures by the time they reach adulthood, and the onset of puberty is a common trigger, further, and somewhat exigent, investigation is warranted. Hence, we’re headed for another EEG  tomorrow morning, followed by a sedated MRI and then a sit-down with the neurologist to try to put the pieces of this puzzle together.

I can’t possibly tell you how grateful I am for all of the love you’ve shown us these last few days.

To the mom who sent the MRI Social Story yesterday, please know.

To all of you who have said, “We walk this path. It sucks and it’s scary, but it will be okay,” please know.

To my friends who sat with us in the ER on Monday night, virtually yet as tangibly as could be, please know.

To Miss J and Brooke’s teachers and IF, all of whom wrote to check up on her and to send their support yesterday, please know.

To my colleagues at work, who said, “We have you covered; when you need to go, you go,” please know.

To all of you who have quietly prayed for my girl, please know.

Please know how grateful we are.

You hold us up when we need it most and nothing in this world means more.

With love,

Jess

37 thoughts on “untitled

  1. I do not have a FB account (due to DH’s line of work-can’t) but I have been following, I have been saying a little prayer for you and your family.

  2. Many, many virtual prayers and hugs! You’ve got this. I went through the almost exact same thing last week in the ER with the “unsatisfactory diagnosis” of we’re not sure and now going through a litany of tests to try to determine the cause. It does surely suck. But if there is one thing I know about you, you are a fighter and will see this through to the very end with any answers you can get. You will get through this. It is exhausting and frustrating and scary. I know. I am walking the path too, but you will get through it. We have your back, mama. ❤ ((((((((big hugs)))))))))))

  3. Hugs, love, and prayers. You will get through this, and get answers. Praying for the absolute best out come for all of you! xoxo

  4. you are in the best place in the world!!! with the best, most caring and well-educated neurologists you could possibly have! I know, i’ve been there too. good luck today.

  5. Hang in there, nothing is harder, but she’s a strong girl .. she’ll be fine… as she says “I want my Mommy and she wants me”.. right now, that’s what she needs. Like everyone, you have touched/helped so many, including me, that i feel absolutely helpless and wish I could do something more.

  6. Sending positive thoughts and prayers your way. I hope you find answers and that Brooke never has to experience anything like that again. Seeing your child in pain is a helpless feeling. My son had an EEG at Children’s, and they make it very comfortable. Bring some of her favorite DVDs to watch – it’s a great time to get some snuggle time in, too! Good luck!

  7. I am so sorry you are going through this. It does suck, and you may never find all the answers, but you will get through it, one day, one step, one breath at a time. Prayers and hugs for you and your sweet girl.

  8. Grateful for you and B, Jess. Prayers sent to the heavens that B is well and that she one of the 75% who are not burdened with the worry and difficulty of seizures. Bless you both.

  9. I’m here if you want to talk about seizures (or anything else for that matter). But those are in my wheelhouse. Scary stuff Jess. Good luck. Patty

  10. I’m so, so sorry. I can’t even imagine how terrifying it must be for you all. Sending hugs and strength, and all good thoughts.

  11. So sorry to hear about this. Honestly, I can’t imagine how awful it must be. Sending lots of good thoughts your way. I hope that this is expeditiously remedied for all of you.

  12. Many prayers coming your way. We went through this when our son was in the hospital for 6 months with crohn’s and many surgeries. He had a seizure just out of the blue one day while watching tv in the hospital. Code Blue, 15 drs. and nurses, many days of tests and no cause. Dr. said his body had been so freaked out by all of the meds and surgeries he had this seizure “just because”. OK. The neurologist told us (and you will laugh), every person is allowed one seizure in their life time for no reason. Hopefully, this was the one and only. It has been almost a year and no more seizures. Hopefully, this was the one and only in his lifetime. He has too many other things to deal with, seizures would just add to everything else daily that he goes through. Again, prayers are on the way for your baby girl and family. Hang in there momma!!!

  13. oh dear. I am just getting back into life…I am so sorry for all this scariness.
    Sending you love and light to surround you.

  14. We just enetered the world of seizures in may 2012.

    If you find out it was seizures, feel free to contact me for any advice… although it’s still pretty new to us… and just like autism, seizures/epilepsy is a spectrum disorder which means it’s a crapshoot

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