That is what motivated my shopping trip today. Causing me to buy 3 bag full of goodies for Sophie. New toys, puzzles, DVDs and her favorite snacks are what filled those bags.
Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.
Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.
We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.
* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?
Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.
Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.
We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.
* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?
6 comments:
Wishing you guys the best of luck...hope you get some answers. I hate putting Julia through that torture too...so unfair that our kids continue to have to go through things like that! Sending big hugs to Sophie (and you).
Madie gets HYSTERICAL when I comb her hair! I think our little EEG kids just KNOW...Madie is hyper-sensitive to the world!
Good Luck!
Just so you know...Reagan was doing some "movements" that looked eerily similar to infantile spasms. In fact that's exactly what we thought they were. We took her in for two different EEGs and both came back clean...no seizures whatsoever. So "movements", even those that look exactly like seizures, can be just movements (obviously still neurologic, but thankfully not seizures).
Sending great big hugs to you all as Sophie has her next EEG. The hook-up is so stressful and draining for everyone involved.
I wish they had a better system for doing it...you know like not having to do it at all.
I hope and pray that the "odd movements" are not seizures. Praying for strength, and hope, and peace for you all.
Love,
Jody
Elaine,
I will be praying the EEG looks perfectly normal.
I hope Sophie tolerates the hook-up and the entire thing is worthwhile to give you some peace of mind.
Hang in there!
Hugs from NC,
Kelly
He would be there in a heartbeat if he could! I just read both of your latest post and glad to hear it went so well this morning. Let's keep hoping that the results will also be as sweet :-) Great job Sophie!! We are so proud of you. XOXO Aunt Erin
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