Tuesday, May 27, 2008

The Needham 2 week mantra





Two weeks from today we will be at UCLA. Hard to believe that we will be beginning yet another new chapter in our journey with little Zoey. It comes with a mixed bag of emotions. I think once we actually get there we will feel mostly relief. Relief in that we will be at a premier epilepsy facility and we can begin to let go, knowing we are in such capable hands. Until that day arrives we have to decide what emotion will define our days. I spend a lot of time defining days it seems. I will be glad when one day the days will just happen and not so much thought goes into them and how I will move through them. We certainly could be and probably will be all over the emotional map but it is our prayer that we will again let go and let God lead us. We want to enjoy the days up until her admission, as a family, savoring each day for what it is. A blessing. Trying not to get caught up in the what if's. What if she is a candidate for surgery? What if she is not? Knowing that none of our guessing or speculation is going to influence the outcome. Knowing that none of our worry or anxiety that we project on ourselves is going to make any difference. The only possible thing worry and anxiety will accomplish is a really stressed out family that missed out on an opportunity to enjoy the days for what they were. So the Needham's are taking on a new mantra. It comes from a poster hanging in Zoey's room or rather Zoey's space, in our room.The poster was given to us by my cousin Victoria who has an extremely cool blog and sells some extremely cool stuff. You can find her here: sfgirlbybay.blogspot.com The poster is a reproduction of a British propaganda slogan commissioned by the British ministry on behalf of King George the VI in 1939. Keep Calm And Carry On. Says it all, don't you think? As far as the princess. She is holding her own. We haven't seen another cluster of seizures since Friday. Thank goodness. Gotta love that. She continues a few head drop, twitch type seizures here and there. Who would have thought we would ever say we were glad for a few" little seizures". See how you bargain and settle when you find yourselves in these surreal situations?She seems to be adjusting to her higher dosage of medication. Still a little sleepy but we think she is still playing catch up from her weeks and weeks of sleep deprivation. She slept from 9pm -4am last night. We sure will take that and she also continues to take 2 decent naps per day. Her schedule seems to slowly be returning to normal. She is still not digging her solids much but we are persevering and trying at least a few times a day hoping her appetite will slowly reemerge again. She is becoming a very distracted nurser as of late also, so that, coupled by her lack of interest in solids makes me happy she still has her g-tube ( feeding tube). I never would have thought in those early days in the NICU I would ever be saying I was glad to have it but it literally saved her life and has been a God send numerous times in the past year. We use it for all her medication and that ensures she gets all of them and when she is not eating well and not feeling well she can be supplemented through it. In fact, there are often times I think how nervous I will be when it is no longer there but know that the day they decide to pull it, will mean she has reached great milestones. Until then, it stays put and I am thankful for it.Zoey seems to be doing fairly good in our opinion. Smiling, playing and enjoying the craziness that surrounds her daily. You maybe can't tell from the picture but her cheeks are "deflating" a bit too. Maybe another indication that her body is returning to her" pre ACTH" state. So there's an update. We had a great long weekend even though Mark worked until 1:30 am on Friday night and worked Saturday until 3pm. Oh the life and lure of Hollywood. Seriously though, he works like crazy and we miss him when he's not here. Really honey, we do. My brother Stephen and his wife Melissa were here from Oregon. My parents are getting ready to celebrate their 50th wedding anniversary so my brother popped down to spend some time with us. I loved seeing him. Whirlwind though and made me realize how sad it is we all don't live closer. But in my new found Heather attitude, I thoroughly enjoyed it for what it was. The week holds a lot of GREAT stuff for the Needham's. I will keep you posted as they happen. With picture of course. Until then, if we don't say it enough, we thank you all for your love, support and prayers that keep us going each and everyday. None of it is ever taken for granted. We are certainly blessed and lucky for the love of our friends and family.

2 comments:

Reagan Leigh said...

Heather,
I wish I could follow the advice of your poster. Too often we find ourselves so stressed over things we have absolutely NO control over...but yet we stress away! (and by we, I mean me) I can imagine that the wait (for the UCLA visit) would be excruciating...I think you are handling it very well. I am so happy for Zoey to finally be seeing some relief from the clusters and the effects of ACTH!! Take care and you are all in my prayers!!
Tera

Tanya said...

Heather,
I just had to comment on that adorable picture of Zoey. I just love those big smiles (& cheeks!) I know these weeks before UCLA are going to be hard, and you'll constantly be in my prayers. A friend recently said to me that "worry is a lack of faith", and although that may not stop us from worry,it has helped me to think of those words as a reminder to give some of it up to God. Love, Tanya