Saturday, August 2, 2008
It seems as though the state of Zoey's little life could often be described using some geographical term of one sort or another. The same could hold true for the rest of us. Throw in island or huge,massive mountain and you begin to get the idea. I think Zoey finds herself grazing comfortably on a plateau as of late. The girl is tired and certainly deserves some time hanging out on some stable, level ground. However comfy that may be,to dwell there too long would not be in her best interest. We all have been basking in the absolute sunshine of these days. Having her seizure's under control,yes,I used the dreaded "s"word,once banned in this house,is a possible sign of the comfortable place we have all found ourselves to be in but a reminder always follows:Do not get overly confident with the current state of affairs.This summer, which bares a stark contrast to the happenings of last year, has been nothing short of amazing.To find ourselves coming and going with Zoey, as we please, has been so freeing. My goal of making up for lost time spent just doing, has certainly been realized.Sure,there still is stuff I wish we could do or could have done but isn't that always the case?To be able to travel relatively tubeless,cordless and "seizurefreeish"well,let's just say that not one moment goes by that we do not count ourselves and Zoey blessed. As for that plateau .... as wonderful as it has been to see her in this place of stability I think,I know, it's time to really dig our heels in.Zoey's O.T. has been on vacation for the last two weeks.I haven't been too concerned about her absence, as I feel fairly at ease doing therapy with Zoey myself. The thing is, I think we have stalled a bit. No progress to speak of.Not that I haven't been rejoicing in the lack of regression but I know my daughter and what she is capable of and I am thinking we may be losing precious ground. Window of opportunity is everything with some of these children Especially when you are all too aware that seizures could reoccur tomorrow. Heck,they could reoccur within the next minute. Seriously, you never know. We want Zoey to have reached as far as she can go when and if,I'm opting for the never option,but if ,surgery becomes necessary. Jacquie,our O.T.,has become very comfortable. Which is a really great thing in a way and not so great in others. I think she often views Zoey as still very fragile and often opts in giving Zoey a mommy fix when she gets upset during therapy.Therapy is scheduled for an hour and we rarely get to a half hour. Jacquie loves Zoey. I have no doubt of that.I feel as if she,we,have crossed a line,clouding it with patient/family vs clinician/friend relationship status. Hey, I am the last person who wants Zoey to work hard. I feel she should get a lifetime pass on hard after all she's endured but that becomes a disservice to Zoey. We need to push her BECAUSE of all she has endured and survived. It speaks to her determination and her capabilities. So next week we kick it into high gear. I have already contacted our case coordinator with Early Intervention just so she can spell out exactly what services Zoey is eligible for. Our O.T comes 3 times a week and her vision specialist from Junior Blind of America comes once a week. What about a P.T.? Or what I am interested in is a Feeding Specialist. Zoey's eating,or lack there of,continues to be one of our biggest battles. We have come to rely on her g-tube to supply her with the vast majority of her nutrition.I still think an appetite stimulant might be in order to off set the Topamax and it's appetite suppression effect it's had on Zoey. As long as she remains on the Topamax,which we have been told is like ...forever,then the appetite will not improve. If we do not jump on this eating thing then we very well might be chasing her oral feeding for a long time to come. So that is about all on where Zoey dwells geographically.Comfy on a plateau. Cute as can be there too. Today Zoey is 17 months old. I will not look at what she cannot do at the tender age of 17 months instead I focus on the miraculous things she can do. Just being here ranks as pretty darn miraculous if you ask me.
*Zoey in her bumbo transfixed on a Baby Einstein video. Zoey in her bumbo arching,one of her favorite things to do,thus a possible reason she doesn't sit yet! Zoey and our dog Lola. Lola is terrified of Zoey for some reason and this is about as close as she ever gets. Check out the very disinterested demeanor of Lola. Please also note the bandanna on Lola. We aren't in the habit of dressing our dog. That's courtesy of the groomer.