A Neurological Update (or, Welcome to the World of a Special-Needs Child)
It seems to me that lately the neurologist has become like a member of the family; after all, we practically spent Thanksgiving with Mindy's neurologist following her stroke. Add to that the fact that for the past two years I have logged more hours on the phone to Keelie's neurologist than I have to my own mother. In fact, about an hour ago, as I set dinner on the table, Dr. Neurologist called to give me the results of Keelie's latest EEG. We were hoping that it would come back "normal", seizure free. She's been learning so much lately and we haven't seen a full seizure for a while; we were really hopeful that we could start weening her off of one of her medications. But, no. She's still having seizure activity stemming from the left-frontal portion of her brain. So on the Lamictal she must remain. Don't get me wrong, the Lamictal has been great; it's controlled her seizures better than any of the other drugs we've tried. It's controlled her seizures so well that she's learning at an amazing rate. But Lamictal is a very expensive drug. A one month supply for our little angel costs about $1,300. That's right, folks. For what one of her medications (that's not the only one she's on) costs you could pay a mortgage payment on an average home (here in Utah, anyway). Luckily we have insurance and a good job, but I'm just saying ...
Then there's the little issue of the huge lymph nodes in her neck. Huge like ping-pong balls. Huge like I can see them from across the room. They could be an adverse reaction to the Lamictal, as this reaction has been reported before, but no one really knows for sure. Dr. Neurologist says to check with her pediatrician, see what she thinks and then get back to him. I know what she thinks. She told me not to worry about them. Don't worry about them? How do I not worry when the neurologist tells me that this could be a symptom of an adverse reaction to the very medication that is making her somewhat functional? Hmm ...
I guess my little dinner-time phone chats with Dr. Neurologist will continue a while longer.
But enough about my family drama, let's talk about you for a while ...
Comments
Dropping by to welcome you to SITS!
stopping in to welcome you to the wonderful community of SITS
Came by to welcome you to SITS!
Your little girl is absolutely beautiful. I would be so impatient trying to wait for everyone to figure everything out.
HUGS
It's just not right.
It's just not.
stopping by to welcome you to SITS, we are so excited to have you join the community. you will love it!
Anyway...welcome to the SITS community.
I'll be praying that your daughter's seizures go away soon. Good luck!
Just dropped in to welcome you to SITS. HUGS
just stopping by to welcome you to SITS.
my mom is married to a con artist who has run off with $10,000 of their money, leaving nothing for her to pay the bills. she can make the house payment through the end of this month...after that, we'll just have to have faith. something will work out, it will. ooo oooo oooo, it gets better. he is running off with the 4th (yes, you heard me right 4th!) mistress. it sounds crazy i know, but mom was just trying to make things work. this is husband number 6. she reads my blog, so please no comments about this on my blog;-)
he bought property in hawaii a few months ago without telling her, bought a $1300 camera, hid it, returned it, and looks like he may have bought it again. random i know, but i was just thinking about $1300 b/c of your post. i wish i could blog about all of this, but i don't want to make things worse for mom. he would have raging fits where he would yell and scream at mom.
did i mention he bought an ultra light airplane last summer? $30,000. without even discussing it with mom. then an escalade, then a toy hauler. all without asking her. when she would say, "oh, there's a new car outside" he would yell at her and say "i told you i was going to buy it." this sounds absolutely insane. it is insane, i know. almost unbelievable. i wish i was lying!!!! i hope this is getting your mind off of your stress:-) i'll bet your mouth in open wide and your eyes are big. mine were the first few years.
he was so emotionally abusive and mom has finally worked up the courage to divorce him, hip hip hoorah!!!!!!!!! okay, so he bought the airplane, crashed it, almost died, spent 2 weeks in the ICU in seattle, got released, fell down a flight of stairs (i wish i could claim that i pushed him, just kidding!!!, but he fell carrying the trash in seattle), broke an additional arm, which put him in a wheelchair for 6 weeks. mom took pity, brought him home (are you following this, it's a long story), nursed him back to health, and the abuse began again. so so so sad. so, he's gone now, left with another woman and the 10 grand. we are all so relieved, even though she has no idea how to pay for anything, it's just amazing that he is gone.
so sad! it sounds way more sad as i'm writing it to you. i think i've just been following the story so long that it's started to get like an old record. i hope i didn't make you feel too sad!
on a brighter note, my mom is amazing. she works in the jordan river temple twice a week, sings in three choirs, serves in relief society, and is the most positive person i know. through all of this she still has faith in the lord. she knows that he will see her through this and bless her. such an amazing attitude!
am i really posting this comment???
love em