Hi. :)
I feel bad. When I don't write for a while I get antsy. And I am really antsy. I haven't posted here since October. And today it was the last day of January. (Tomorrow is one of Vicki's and my 12 favorite days of the year. The first of the month! A new month! New calendar! New decorations... hello Valentines and hearts!) And new goals. A clean white page. To write on and decorate however we want. To fill it with fun times and fun memories. And, of course, always more doctors appointments and meetings.
First off, I want to thank all of you who read... and who follow our journey... and who love us and care about us and worry about us. I haven't been on facebook (or pinterest!) all year. (ok, it's only been a month since the beginning of this year... but wow... doesn't that sound like self-control!) I hadn't meant to pull away from everything and everyone. It wasn't a new year's resolution or anything... ;) So, to all of you who have sent messages and texts and notes, thank you so much for being concerned!!! I feel so loved! And I am SO sorry if I worried anybody! I didn't mean to! And, I also didn't realize how much I must usually post on facebook and then suddenly stopped. I have been having issues with my cell phone's memory and I disabled my facebook there, and that's where I usually get my updates from notes posted and stuff... and apparently, I don't get email notifications anymore... I must have changed my settings. Anyhow... I'm all fixed technologically now, I think... so, I'm back. For a short answer, we are doing good. Really good. For a long answer, read below. :)
So much has happened since I last updated you on Vicki. And I am happy to report. She's baaaack!!!!! It's been a very long journey. One that has given us the stereotypical one-step forward, two steps back cliche. This leg of the journey, the past 9 months, has been a very difficult one. But we made it. :) And we are back on track now. Thank you for your continued love and prayers!
The best way that I can describe how I've been feeling... back in August I think it was... we were driving home to visit family in PA and we were passing through Berkley Springs, WV.. And it was raining. Really hard. And I get a bit anxious in the rain. Heck, I get a bit anxious with a lot of things. We were driving through the streets of downtown Berkley Springs and the rain was coming down so hard and so fast. I had never been in a flash flood before. But, oh my goodness, I'm pretty sure that's what this was. We were inching along in the flooded streets in our van right behind a big truck. Thank goodness for that truck.... His big ol' tires were plowing through the water and scooping some water out from around us. I looked down a side street and there was a car floating down the road. Everywhere I looked there was water and the water was up to the tops of our tires, I don't know much about cars, but the water was high enough to mess with the hot stuff under the hood and the sounds coming from the van were not good. There wasn't a place to pull off, all of the parking lots were underwater. The stop signs in some places were barely sticking out of the water. I was silently freaking out. Well, I don't think I was actually silent about it...
So, that's how these last 9 months have felt to me, like we were in a flash flood. There was no place to go. We couldn't stop. We couldn't turn around. We just had to take it slow and keep plowing through. And that's what we did. It's safe to say that I've been a bit anxious these last 9 months, and silently and not so silently freaking out. But, as usual, my husband... drove us through that horrible rain in Berkley Springs that day... and he drove us through our 'flash flood' with Vicki too... He literally drove countless miles to doctors and specialists. Always calm and in control, just like he was that day driving in the flooded streets.
We didn't stop. We didn't turn around. We took it slow and we keep plowing through. And we keep praying. And you know what? Vicki's BACK!!!!! Now, I know it will rain again. And I know that we may have some more flash floods. But we are armed with our umbrellas and rain boots and we are ready. :)
I just wanted to share with you a few of the amazing things that have been going on. We are still seeing multiple specialists... So far we've seen 2 of Vicki's specialists in January. We have 3 more appointments in the next month and a half. Vicki is still on multiple medications for PANDAS. And in the next month or so, one of the doctors is going to start weaning her off one of the medications. Am I scared? Absolutely! But I have a lot of confidence in the team of doctors we have working with Vicki right now. And I have a lot of confidence in Vicki. Probably one of the best compliments we have gotten is from Vicki's pediatric neurologist. She is very scientific and very skeptical about alternative treatments. She has told us multiple times that she doesn't believe in PANDAS as a diagnosis. But, when we went to see her a few weeks ago with Vicki, she was amazed at the changes in our baby girl. Well, not so much baby girl anymore... at this visit, Vicki officially passed me up in height. :( She's now 5'4" and I am only 5' 3 and 3/4"..... sigh..... But, more to the point, our neurologist said, "I don't believe in PANDAS. But in Vicki's case I do." She went on to tell us that she's amazed with Vicki's recovery. The symptoms don't lie. And the lack of symptom's don't lie either. And I don't know exactly what medications did it, or how it happened, but .... Vicki's back. :)
And for that, we are forever grateful.
As an aside here, I am going to say something.... Vicki has autism and Vicki has seizures and Vicki has PANDAS. And, you know what makes me feel like a bad mom? I don't even know how to describe it. To see your child slip away from you so globally like Vicki did last spring and summer... to have so many facets of her being be compromised... to imagine what Vicki was going through... the anxiety, to be trapped in such tremendous OCD rituals... to lose who you are. It was horrible to watch. And then, finally, we started seeing improvements. Slow and steady improvements with the medications they put her on. And some of the symptoms started lessening. And Vicki was getting better. And still is making improvements. And I have to say, I am convinced that some of this medication.... I am convinced that besides releasing her from some of the frightening PANDAS symptoms she had, I am convinced it opened some windows for Vicki as well. I am sure that whatever has been happening has allowed things that we have been struggling with for years to find a way to come out. Vicki's reading is exploding. Vicki is starting to spell words. I've seen so much progress academically the past few months. I look at where she has been and where she is now and I am so proud of her I just sit down and cry. I feel like I've gotten a look into her mind that I've never seen before, glimpses of what she is capable of... and what she shocks and amazes me with. And yet, with all of this... I am still a little sad. And that's what makes me feel like a bad mom. To see someone you love who has autism... to see them.... I don't know. To see symptoms get better with medication. It was amazing. And now... Vicki is still on a roll, don't get me wrong. But it's almost as if, well... we are taking care of PANDAS... and she's getting better. But, damn, there's still autism. I don't want to 'fix' Vicki. Because she is not broken. At all. But it's just... now when I see things... now when we take a step forward and two steps back... it's just a little bit different. Because everyday there are still struggles. And there are still days when quite frankly things really suck. And then there are amazing days. And now, it's almost a little harder... because I saw how dramatically things improved for Vicki. And how medications and interventions helped bring Vicki back. And it was such a gratifying feeling. I felt like we were finally able to help Vicki. And now... I just want more.
Sorry for being side tracked... I really am grateful and I feel so blessed everyday. And I do celebrate every step forward, and even the step backs make me appreciate things more... I just want to run with Vicki now. You know? :)
So, here we are. We drove through that rain storm. And we came out with Vicki's rainbow. And I guess what I've been doing this past month or so... is just enjoying the colors of her rainbow. And just basking in the sun. I've also been trying to clean up a bit. Because man, after a storm like that hits... there is a lot of damage. So, we are repairing and regrouping and just breathing right now.
And, it feels really good.
I love you all. xoxo
