Monday, March 02, 2009

I have a lot of news! Part 2

OK. Since I have another spare moment... I am going to keep going here with the news. Abby's hospital visit went ok. She did not have a seizure... but she did this morning. Ughhhh. We kept her up late and tried having her sleep in and still didn't get one. We really wanted one so that part was/is really disappointing. It would have been very helpful to have that when we go to the Cleveland Clinic in May... but what can you do? Trust.
But we had the unexpected gift of a neuropsych evaluation while we were there and it gave us a lot of information about Abby. Just talking with the psychologist gave me a lot of confirmation of things that were bouncing around my head. We are going to be getting her back in speech and occupational therapy as well as looking into a private school. Home schooling is not working for a lot of reasons.
One of the biggest reasons is that it is blurring the relationship between Abby and myself and that is killing me. I have always been her champion, her biggest supporter and her cheerleader. Becoming her "teacher" has put me into the role of the person who makes her frustrated and feel bad about not being able to do her work. It's been really tough. She hates not being able to do something and her ability to learn is just almost totally blocked by this horrible drug she is on. It makes us both feel like failures and has just been--- bad--- really bad.
So I have accepted that I can not be all things to her right now, as badly as I would like to be. She has SO many needs and there just has to be some help. And I am trying to accept that that is ok... and that I have not failed. So we have had a conversation with a private school we are looking into but may need to put her back in public school to finish the year. We'll have more conversations tomorrow and so we'll know more later. She is very excited about the possibility of being in school again. She misses it very much. We will keep praying.


  1. Anonymous10:35 PM

    Dawn!!!! You are not a failure because home schooling didn't work out for you and Abby!!!! You are her "mommy" and that is what she needs most from you righ you girl,


  2. You do a wonderful job!

    I am sorry the EEG didnt turn out the way you really stinks that she had one right after. Good luck in Cleveland. I believe I will be at a presentation from one of the mito dr. from Cleveland, tomarrow. We were going to go there a couple years ago, but decided to hold off on further testing at that point.


Thanks for sharing your thoughts!