Disheartening Days.....

I should have blogged sooner because I'm sure my ABC followers would have loved to read good news. I will recap....
The great news is that Brock still hasn't had one of his vomiting episodes since Aug. 23. Every time I utter those words, I have to knock on wood.......so much that my knuckles are beginning to callous! LOL My gut still wants to thank the weaning of the valproic acid. But with the ending of that med, we have the beginning of more seizures!
Brock ended the month of August with only 12 seizures and overall was doing much better in many areas. He was more vocal (babbles), he was more alert and interactive, and he was physically more active (rolling more & trying to crawl). However, after coming down from 2mL of valproic acid to only 1mL he had a hard seizure in which he wouldn't take a breath and even began to change color. FREAKED ME OUT!
That was September 6th.
I asked if we could increase Brock's Keppra dose as I thought I'd noticed that helping. That increase did seem to help and he didn't have a seizure again until the 13th, in which he had THREE! :(
Brock is having multiple seizures a day and he presented with a lengthy one, with the breath holding, on the 19th. According to my calendar, the only thing changed was discontinuing vaproic acid! Grrrrrr. The very med I hated could possibly doing something good?
Who knows.
I took Brock for some labs on Sunday morning. Those med levels are still pending. Meanwhile, I left a message for Neurology to see if we should go back up to the 2mL of valproic acid because that was where Brock seemed to be doing the best. When the nurse called back she told me I could start Brock at 1mL then see how he does. I asked if the Dr. thought adding a small amount of valproic acid could help? The answer made me laugh..... "Doctor said to do whatever you want to do."
Seriously?
My initial feeling was that of confidence---that the Doctor had so much faith in my judgement..... But soon that feeling turned to disappointment, with the thought that we have virtually run out of drug options for Brock.
The boy is on 4 drugs and now adding back on a 5th? Obviously the others aren't doing much for these current seizures, but I don't dare start pulling too many for fear of Brock's other seizures returning................
He had 3 small seizures yesterday and only 2 small ones so far today. The little ones I can cope with. The lengthy, breath holding, seizures are going to age me beyond my years---very rapidly! (Maybe I should start doubling up on my Avon anti-aging creams I've been trying to sell???)
We may have to visit the topic of VNS again, although the success rates didn't impress me much compared to the risks of surgery. The Ketogenic diet wasn't a great option due to Brock's kidney stone susceptibility.
AHHHH! Just give me a magic wand already!
So, now that I have that off my chest, I can share about Avery and Cora. They are doing super in school. Each are also really taking off with their piano lessons, if I can get them to practice. :) We now have 2 dance classes under our belt and they both seem to love it. They are in a ballet and tap class combination.
Avery and Cora are especially excited for their upcoming birthday party. This Saturday we will be having EIGHT girls joining us. I anticipate some chaotic fun to be had by all. (wish me luck please! lol)
I leave you with a poem, posted today by a fellow special needs parent.

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
“How could God do such a thing?”

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said “Listen and you’ll see.”

“My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find an angel
and you don’t know what to do,
remember, I am with you,
love is all I ask of you.”