Hello! I know it has been a while since my last post, but I can only describe the delay as 'expected'. We all know how life can be, and life for us is no different in that aspect. All of a sudden the year is almost up, and we wonder where the time goes until we really think of what has filled our days and then it all makes sense.
I know an update on the details of the last many months should be my theme here, (and I PROMISE a year review before we start 2014) but something occurred to me this morning, and I feel it important I visit it with all of you.
So many times when I share about Gabby, I always try to explain how I know there is a "Gabby in there" even though she's isn't able to communicate. (This is in regards to people who have not met Gabby. For example insurance people ect.) So many times I can hear the uncertainty in people's voices, trying hard to understand and/or comfort me in their own way that they are glad to know I can connect with her ect. Over the years I have learned to just smile and nod and say things like. "yes, it is helpful I can connect with her" or, " spending all my time with her I hope I have been able to pick up on a few things, HA HA HA...". I wonder sometimes if they leave the conversation feeling sorry for me or pity, wondering how I can have a relationship with someone who doesn't 'give back' in the traditional way. What struck me today, and it has in the past as well, but today was exceptionally strong for whatever reason, was how easy it really is to read her basic needs and emotions. There are SO many things I don't know about her, and spend a great deal of my time taking the most educated of guesses following my heart, but today I was reminded of what I DO KNOW. Here's the scene. Bath time for Gabby. She has always seemed a little unhappy about baths, even as a baby. Though I always cherished it because it is typical, everyone bathes their kids and I got to do it too. (little things mean so much) Today as I was bathing her and talking to her like I do, I warned her it was time to wash her face. I warn her because I know she isn't a fan...and it clicked. I KNOW. I KNOW she hates her face washed. Then I watch her, how do I know this? As I start to wipe she groans, makes a grumpy grimace face and TURNS HER HEAD. I stop and look at her. Wow, that is how I know. It is a typical behavior, she was very much letting me have it.
I can't honestly explain why this touched me so profoundly today, it was a typical bath time and nothing really out of the ordinary, but it did. It allowed me to really appreciate the comments of those who meet her after I explain she's non verbal. One being, the minute they met her, saying "I wasn't expecting her eyes to say so much, she really is present". Others including her in their conversations and actions because they know, yes they too KNOW, she is giving back to them in her own way. I am in awe of this journey and what it has taught me so far. I have seen the spectrum of people's reactions to her, but it fills me up to think the majority of interactions have held something positive for everyone, especially Gabby. This too, I KNOW!
Been a while, again, I know! If it helps, I write these posts in my head over and over, but seem to struggle with just sitting down and doing it. I suppose I will try for once a month and anything else will be bonus :)
So, the holidays were great. After a few viruses and icky fights with germs, we had our first healthy Christmas and New Years in, I think ohhh, 3 years (possibly 4). I am hoping the good start means a better year for her, health wise. We spent Christmas here in town at my brother's house, and she was all smiles all day. I know on levels I can't explain that Gabby 'gets it' often and we all saw her connection with family and spirit of the season that day. More memories to add to her bank! (Good from the bad here, in comparison to past holidays of illness and fear, Gabby was strong and present for this year)
Seizures, a word I hate with my every fiber. I have had to say it often lately, and it never gets 'ok'. We had a plan, to reduce a medication (Banzel) that we were certain wasn't really helping her and transition her to another medication we haven't tried yet (Felbamate). Well, either her system is so sensitive to any change whether the medication works or not, or this medication was indeed working and the wean wasn't going as easy as we hoped because she experienced a prolonged seizure while at school that required we use her rescue medication to stop it. Now, this seizure was unlike any other we have previously witnessed, and her team of teachers at the school are credited with noticing Gabby wasn't breathing normal and seemed a bit out of it so they called to fill me in. I went there right away thinking she was coming down with a cold (already had a call in to her pediatrician's office too for them to listen to her chest) and Gabby was certainly off. Something in me just said she was seizing. I can't really explain why, just a feeling. So, we grabbed a flashlight and checked her pupils and they were fixed and nothing was getting her to respond, not even me pinching her fingernail cuticle. So, everyone worked together and got her down and her rescue med administered and Gabby popped out of it after about 7 minutes. The school staff was so attentive and had documented everything that I was able to inform her neurologist, and can say with some certainty that Gabby was seizing for 45 minutes. The good from this bad was learned more about her, this was all new and it gave another lesson on how to care for her. So, the next week when they saw the same behaviors, they were so on top of it the episode was only about 15 minutes from noting to diastat working. Life is certainly and education and we never stop learning.
Minus a little cold, she's been doing ok as of late. Between the cold and seizures her botox appointment has been postponed twice, so she's back to being a drooly mess, but that will be fixed next week (fingers crossed!)
