Sunday, May 25, 2008

Changing things up a bit

Not too long ago, probably prior to starting this whole seizure fiasco, when people asked me how I was doing I would always say,"If she's good, I'm good." The same thing holds true today. I think the same thing holds true for all families traveling journeys such as ours with children who's medical issues dictate how the tempo of the their daily lives goes. How our children are doing on a medical front is indicative of how we are doing on a mental health front. The last two weeks we have been basking in seeing Zoey doing fairly well considering everything "going on" in her little head. We have really and truly tried to enjoy the moments as they have come knowing they may and probably would take a slight turn. It seems as though maybe that is the case at this new moment. Hard to put our finger on why they might have veered off course a bit. We increased her medication on Friday to almost twice what she was previously getting. We saw a little increase in her sleepiness, not much but enough to notice. Her smiles have waned a bit too and her giggles aren't coming as easily. When you are dealing with seizure disorders such as these there really is never a rhyme or reason to it, any of it . It is all speculation and a guessing game. Last night we saw an increase in seizures and for the first time in almost 6 weeks we saw our first cluster of them. Meaning one little seizure after another.We really,really hate these kind. I'd like to say we weren't disappointed but I would be lying. I'd like to say it surprised me, but it didn't. It's that double edged sword again. Prepared and not prepared. Accepting the course things are taking and on the other hand not accepting that you may be entering back to a place you would just as soon flee from. The truth of the matter is we will never know why this twist or any of the other twists or turns of the last 15 months  have occurred. If we are constantly looking for answers, we are setting ourselves up for disappointment. We want concrete explanations in a situation where there are no concrete reasons. All I know is things can go two ways today. We can slide back to the stressed out, bitter, sad and frustrated parents we have seen ourselves be in the past,mainly me, or we can muster up all we have within ourselves and gather up our strength for what the next moment will hold. We are heading to church this morning. Part of me is a little apprehensive. Today they will speak Zoey's name when they are praying for the sick of our parish. Part of me rejoices because I will find comfort knowing there will be countless others keeping her in their daily devotions. The other part of me will be a little sad. Nothing can quite prepare you for hearing your child's name spoken for those reasons. I pray that Zoey can just stay the course for the next two weeks until we get to UCLA. I am so proud of this little girl. She forges ahead again and  again. She is sleeping much better. Maybe up only once during the night. She is taking 1 really good nap or two small ones during the day. We have reintroduced her solids. You might recall that for what ever reason, again we'll never know why,she decided when she was on the Vigabatrin, that she no longer liked food. But slowly we are getting back into it. She is at least receptive to it instead of turning her head and pursing her lips and sticking her chin in the air. Can you picture it? Cute the way she does it but what a stinker. Zoey lets us know what she wants or doesn't want in her own unique Zoey way. The picture is from Friday. She hasn't been in the exer-saucer in awhile. When she was in the height of her seizures she would be sitting in it and boom, out of the blue a seizure would hit and her little head would slam into the toys and scare the heck out of her. Not a lot of fun. So I resurrected it and maybe she can get a little use of it for awhile. If the seizures don't put a stop to it. Can't she just do regular baby stuff like sit in a saucer and play? Those kind of things get to me. Little in the big spectrum of things but bugs me all the same. So that's the update here. Hope everyone has a safe and relaxing long Memorial Day weekend. Pause a moment and remember the reason for this holiday. The men and women that so selflessly serve and give their lives so we can enjoy the freedom we so often take for granted. Remember the loved ones of those who lost their lives courageously fighting for peace and justice. Memorialize them for a moment today and pay tribute with prayer and thanks for their bravery and sacrifice.      

1 comment:

Dawson said...

she is adorable!! The uncertainty of it all is the worst thing ever. You never know what to expect not only from one day to the next but literally from one moment to the next. We are getting so much out of watching your little miracle. Heres to more and more great days and less and less seizures.