Thursday, April 26, 2012

Some Catching Up...

So it's been a while since I last posted anything and I'd like to say I have some great excuse, but honestly, I've sort of been avoiding it... when there's no good news to post, why post at all?

But that's changed!

 But before I get to the good news, let me just update you all (nine of you now!) on what's been going on with London:

She had been accepted to Shriner's Hospital and we were stoked for our appointment! I was anxious to find out what the doctors there thought about her CP (cerebral palsy) and what they suggested in the way of braces that may help her bones and muscles grow properly. The appointment went fine, pretty run-of-the-mill as far as doctor's appointments go (except for the fact that there was NO waiting and Xrays were done on the spot rather than 3 months out! YAY for that!!)...

So they wanted to get London into some ankle braces and a soft back brace to wear while she is using the stander at school and occasionally here at home. *Let me insert this: a stander is one of the pieces of equipment that I oh-so-desperately want once we can have the space and $$ for it! It could do SO much for London!*

So I was excited when our appointment came the following week to have her casted for the molds to make her braces... that is, until we actually got there. Once they started the whole process, my heart just sort of sank. There I was, sitting on a hard exam room table, holding London on my lap, and restraining her while a man put casting material on her skinny little non-functional legs.

 We should have been picking out ballet shoes, not cold, hard plastic braces.

And if I thought that was a moment of heartbreak, what came next was something even more gut-wrenching. To cast for the back brace, London had to be laid on a three-inch-wide strap, balanced and restrained at the legs, arms, and head. I was in charge of holding her head still and her arms up by her ears. London can stretch out like this on her own, but BEING stretched out when she doesn't want to be can cause a serious tantrum. Add that to the fact that she's being balanced on a narrow piece of belting, and she was in complete distress. She began to calm down as I spoke to her and the warm casting material was being wrapped around her torso but something, somewhere (never did figure out what), hurt her BAD and she had a complete meltdown. I also almost had a meltdown! Halfway through wrapping her up, she's writhing in pain and screaming bloody murder, and my job is still to restrain her until the cast is hard enough to cut off and use for the mold. Those minutes were agonizing for us both.

So along with the traumatic casting incident, the news we got at her last neurologist appointment wasn't exactly what I wanted to hear... since medications haven't been working, I was all set to try a VNS in an attempt to further control her seizures (as if we have any control at all...)

Well, the VNS is more of something they go to after they rule out surgery. Meaning brain surgery. BRAIN. SURGERY. They want to see if any parts of her brain that are having the seizures could safely and without detrimental side effects be REMOVED to stop that particular type of seizure. Removed. Gray matter, gone.

So an extended EEG is going to be set up (they'll come to our home, connect the electrodes to her head and she'll wear them from 3 days to 2 weeks, long enough to hopefully capture all the different seizures she's having) and from there we'll discuss possible treatments. Even though we haven't even set up the EEG, I can't help but start weighing my potential options.

Well, now that that's out, I'll get to the GOOD NEWS!

The Scentsy party put on to benefit London was a great success! I can't thank Krista enough for donating her profits from sales to A Home For London! She was able to donate $300 for our fund! I'd say that's pretty amazing!
Thanks again to Krista and to everyone who ordered! It's appreciated more than you could ever know!!

Another little tidbit of happy news is this: we may have a killer deal on electrical work once we get to building our home!! Friends who are willing to talk to their connections (in this case, her dad) are surely incredible friends, indeed!!

So, we have a roof, possibly a killer deal on electrical work and supplies, and about $4000 in the bank for out home.

We just need to keep up the momentum on our fundraising efforts.... so please pass around the blog. There's also a page on Facebook we'd love for you to check out!

Until next time, love from me and London!

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