Thanks Laurel and DeeDee. As I have digested this for a few more days I have tried to come up with an action plan. We have an appointment with the neurologist next week. Several people have strongly suggested an MRI so I am guessing he will order one so we can rule out a tumor causing these headaches and unusual numbers. I'm not sure what else would be done to rule out seizure disorder but I am guessing we'll be finding out. I find that I am not overly upset about these things despite the reaction from everyone around me. I think it is because if they are an issue they would be present whether I know about them or not. It would be better to find out and deal with it so I am being very practical. Also my "mom gut" isn't feeling a real likelihood that they are there, especially the possibility of a tumor.
The LD's and migraines really have me concerned though. These are "invisible disabilities" that will affect her throughout her entire life. I have been totally run off track by migraines (and probably undiagnosed LD's) despite being HG myself. DH clearly has major LD issues which his parents could not accept when he was a child. The combination of those plus terrible migraines makes many days very, very difficult for him too. I so want to waive a magic wand or find a miracle therapy that will save DD from all of this. I know I can't but I really, REALLY wish I could.
So now to some practical considerations, some of which I am hoping the folks on the board can help with. First, if I can't understand the neuropsych's explanations or recommendations I will find someone who can. After we visit the neurologist I think I will get back in touch with Dr. Beljan and see if maybe he can review it all for me and help come up with recommendations to bring to the school. I think that what may have happened was that he sent me to the best clinical np he could think of because of the unusual numbers. Now that I got that info I need someone experienced with 2E kids who can help me bring the info to my school district in the most efficient manner. I also may hire the LD advocate to give us background info but not to bring to the meetings with us.
I also need to make sure that I am preparing DD for future success is school. I totally accept that they really need to focus on basic reading and writing during her take out times in 1st grade. We will continue to do content enrichment on our own. (We make it fun.) I am also going to buy a computer that we set up for her to use comfortably. A friend will be helping us select the machine but she said we need to have an idea of what software it will need to run. Any suggestions for FUN software to help her learn typing and keyboarding skills? Should we expect to have her use Dragon down the road? Any other voice-to-text or text-to-voice software to consider? Mac or PC? With visuo-spatial issues any special considerations for the monitor?
Oh, and if her migraines are being triggered by fluorescent lights any suggestions? I am going to get her earplugs to help with sound sensitivity but has anyone had any success on the lighting front?
Sorry so long but I really appreciate all the help and support you have given me on this journey so far.
p.s. Yes Laurel, we have LOTS of fun. I think DD is about the happiest, most adventurous and fun-loving kid I have ever known. Lots of giggling and laughter around here, despite all that is going on
