Wednesday, May 19, 2010

been thinking

(i had high hopes for this post but it ended up, well, like this...)
i've actually been doing quite a bit of thinking. and most times I find myself shaking my head trying to get the awful thoughts out of my mind. but on to what else I have been thinking you guys a better idea of what Avery is like day to day. Funny because one of the other blogs I follow just featured a post like this and it kind of lit a fire under me to do it. This is typically a place for me to share in our joys and accomplishments of what Avery CAN do, but I feel it is necessary sometimes to just face reality. I explained to a friend recently that its like torture having a daughter with Rett. My heart is constantly breaking and then just as quickly filling up with hope only to get deflated and cracked all over again. This is not to be read as ungrateful. We are very thankful for all that she can do but if you only know Avery in photos, its hard to understand how different she is. We are really seeing it now in a different light watching Nolan develop right on track. Everyday he does something that either she can't do or never did. Talk about bittersweet.
From the moment Avery wakes up to the moment she falls asleep (and even sometimes a few seconds into falling asleep) Avery is M O V I N G. Her hands mostly, but also her entire body. If you wonder what she does with her hands, think of Nomar Garciaparra in the batters box. He compulsively checks and re-checks his batting gloves in a particular fashion numerous times at each at bat. Avery's repetitive hand movements are similar to this. They have recently gotten worse and a little more pronounced with her hands also going into her mouth every now and again. She is constantly tapping on any hard surface she is near and if she isnt doing that she is opening and closing a closet door or a drawer or the trash can lid.
She drools, a lot. Her constant moving hands make it nearly impossible for her to feed herself anymore and now I sit and feed her-like a baby. It just kills me.
I have pretty much given up on trying to get her to do an activity. This always sends me into a tailspin. Crayons? nope. playdoh? nope. videos? nope. water table? nope. So she MOVES and she will just constantly move from place to place either tapping, doing her hand movements, pushing chairs around or opening and closing doors/drawers etc. It's constant and its so frustrating. I know she cant help it and she is doing the best she can and so am I but I just dont know what to do with her. Park? nope. She bolts. If I had a nanny/helper/sitter that could come with me I could...and I would. Even the grocery store is a danger zone. She wants to ride in the basket. But while in there she hits Nolan, screams, tries to eat the food Im loading in.
She has lost many words and its hard to believe it was just recently I was realizing her vocabulary had gone up over 25 words/word approximations. Now all we hear is BUS, FAN, DIANE and an occasional yeah or no. Havent heard "mommy" in a week or so and "Daddy" has been gone about a month. Doesnt even say deedee anymore (thats her blankie) She mostly yells (but with a smile on her face) and says words that we dont understand. Like Gyung, Bung, things like that. Its absolutely exhausting. And then I feel bad because we have it EASY compared to a lot of girls with Rett. But it's still really hard. The worst is just not knowing what she knows. What she wants. Could you imagine living your life having to wait until someone asks you what you want/need how you feel? and then still not be able to tell them?
After a lot of thought we have decided to try some more medications. Our wonderful Rett Clinic pediatrician who is just an angel of a woman is helping us and we have started Avery on Prozac as of Saturday. It can help with the repetitive actions (like the opening and closing of doors) and it is setting the stage to start Tenex which is an ADHD medication. It is clear to me that Avery has some sort of attention deficit. The Tenex can make things worse before making them better and the Prozac can buffer that a bit. I hate to make Avery a guinea pig of sorts but what if it helps her to relax, to focus, to play? I have to try right? Today we increased the dosage and she seemed very jittery which just makes me constantly question this choice. But I want to see it through.
Im encouraged by other moms who have been in Rett land longer than we have-love to hear their stories of post regression gains. Maybe Avery will be a totally different kid in a year or two. And we can be more typical. Thats all I want for now, typical. Then Ill take a cure please. A cure-that is my next, to bed.


The MacDonald Family said...

Erica, i know, it's such a daily struggle. You're right, people look at pictures and think, AWWW what a cutie! Through the pics they can't imagine anything is wrong. Annie's anxiety sends my anxiety through the roof! When she's having her rocking, teeth grinding, can't calm down kinda days it's the worst. We started her on Buspar about a year ago and just increased it recently, we've seen great changes, less anxiety, more able to concentrate. I hope you have the same success with the meds you will be trying! I always say that Annie doesn't have Rett but WE have Rett - she definatly suffers more but we are all dealing with the symptoms. Big hugs!!!

Kelly said...

Hey Erica - this post is so open and sincere. Thank you for sharing a slight glimpse into your world. Living in a variation of that same world....I get it...completely! I can honestly say that the communication stuggle is the hardest one! Brooklyn is SO less frustrated when we help her tell us what she wants. Do you guys use ues/no cards with her/ That is where we stated with Brooklyn. It might be worth a shot. If you are intersted, I can send you some of our initial boards that we started with Brooklyn. I have a feeling Avery will suprise you with all she knows ad be much happier when she can express a little of what she wants/needs.
HUGS to you Erica!!

Erica said...

thank you girls!
Kelly, I have been using my hands as yes no cards and she does ok with that. she also can say yeah and no every now and again. We are getting geared up for some better ways to communicate with the end goal being some sort of device! I cant wait!
love you girls!

mj said...

oh, my heart is just breaking. over and over and over. i hate that she is losing words. ugh. i'm just sick. after being gone for a week and now coming back, i noticed some things about leah even more. her hand movements have also changed. her brace is good and helped clear up the infection in her hands...but as soon as you find an activity avery likes, you let me know. we'll try it on leah. ;) can't wait to see you in a few weeks.

DJLG said...

Tears and a heavy don't deserve this, My Love. No one does.