Saturday, August 2, 2008

Hills,Valleys.Plateau's ......

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.


Kele said...

Gosh, I wish I was there to just squeeze those cheeks!!! She is such a cutie pie! (my favorite is the 1st pic).
Once again I am going to learn from you and Zoey. (Geez, I am gonna just suck you dry by the time it is all said & done!! LOL)
But I know how embracing and warm I tend to be when people enter our lives. Always wanting them to feel like 'part of the family'. I can see myself doing that with whatever therapist will walk thru our door when that time comes for Pres. I appreciate this post because now I think I will make a point to find that happy medium where she/he feels welcome but never 'too comfy' and always aware of what the main purpose of her presense in our life is.
Zoey is so lucky to have a mommy who is so concerned with every single aspect of her being and making sure she gets all that she can. I know we both feel very blessed to have our angels but I think they are both pretty lucky to have each of us. They are so unbelievably and absolutely loved and at the end of the day that makes them luckier than most.

Dawson said...

kudos to you for wanting to push her to do all she can. She is truly an amazing girl who is going to be able to do amazing things. Her accompolishments know no boundries. Keep pushing forward and know that you guys are always in our prayers

Lindsay said...

Hi Heather, it's Lindsay. Just wanted to say hello. Been reading the posts and I'm so happy to read each time I check in that she's doing so well and continues to do so well. Miss you guys, I know you have a million people who want to see you/hear how Zoey is doing, but if you happen to think of it next time you visit the hospital, give me a call so I can come say hello.

jess said...

haha mom all of these pictures made me smile/laugh. smile because zoey looks so cute with her hair like that and so tan. laugh because of the third picture with lola, first because its so funny how she doesnt like zoey and second because you left the bandana on her and felt the need to tell everyone we dont dress up our dog. were going into san fran tomorrow, which will be really fun. tell the boys to get ready for a fun wknd with me next wknd.

Cait said...

I love the face in picture #1! I already miss my Baby Dolly. I agree with Jess, that's so "you" to make an explanation for the bandana (but I was thinking the same thing that it looks so cheap).
Force that child to sit--I'll do it myself if I have to.
Well, I'll be back Friday afternoon. I'll try calling later (I tried twice earlier). You're probably checking this thing more than you check the phone so call me.
I love you guys.

Angela said...

Have just come accross your blog - my son also has DS and had infantile spasms and other major health issues - he is 9 now and we seem to have left those nightmare months (seemed like years)behind. We also have two other children with DS who we adopted our outdated story is on and an up to date blog

all the best Angela