Saturday, January 15, 2011
The Monkey Mat...a photo tribute Part 2
So I did it today.. I moved the monkey mat. Took the tree down yesterday, vacuumed today, washed all the blankies, and rearranged all the toys in a big girl way. Bought a couple of new storage bins (her latest obsession is dumping things out and putting things back in.) Surprisingly I didn't cry when I did it. I've been rather ok with the exception of different flare ups for various reasons (thank you ABILIFY!!) NO seriously, thank you. Stuff really works. As evidence by I'm not a sobbing mess anymore like I've been the last few weeks. I'm of the school of thought that if a med can fix it I will take it. Sure therapy and yoga and finding my chi and all that is important. But so are my meds. I'm not ashamed of it. I think after all that my family has endured the last 3 years I'm entitled to need meds. And while I don't attribute my sanity (HA! That's funny. sanity. ) to meds since I'm still obviously nutso I don't give my meds all the credit. A certain amount of adrenaline, persistence, strength, and I don't even know what has kept me going through all of this. *yes, obviously the baby has*
Anyway, I digress. These last few days have been rough. Again, various reasons account for my facebook statuses at any given moment in life... but currently my heart is heavy for several reasons. Heather and Jake. I think about them everyday. I've been talking to Jakey a lot the last few days, as a fellow mom and her daughter (Keely and Sara) have been in PICU battling infection and seizures and heart problems. I've been asking everyone I know to please pray for them, think of them, send healing powers. It's worked. Sara has been taken off the vent and is on NC O2, no fever, and starting to get better. Keely is sick herself so we need to keep praying that she feels better and can return to the hospital. If there is one thing I understand more than anything it's when you are sick (or injured as I've been) and can't be there..especially when you are in a hospital situation. Back to Heather and Jake. Everyday they are in my thoughts, and everyday I wish I could do something...get my prayer warriors to pray him well.. give her strength, take care of them all. I know in time, it will be ... whatever it will be. It will never be ok. It's not ok. Frankly, it F*cking sucks (excuse my language). I saw a post on fb about a girl in college who just passed away from SUDEP. Sudden Unexplained Death in Epilepsy. These are the things that we FIGHT AGAINST. NOT ANOTHER MOMENT LOST, NOT ANOTHER LIFE TAKEN. There is no ok in this. It will never be acceptable, we will never feel better about it. There was no GRAND PLAN. It sucks and I don't want it to be like this anymore...and I can't even begin to imagine if this is how I feel how she is feeling. I just hope she knows how much she is loved, and Brian and Ethan, and most importantly Jake. My angel friend. We love you.
Then there is this whole EI training project, which is stirring up some latent seizure monster dust in the back of my head (hence the video) Because while it seems like forever and a day ago, it wasn't. It wasn't that long ago that the monster was breathing down our necks constantly...lying in wait...no matter what we did... subclinically firing every 2 seconds. Try counting it out. one one thousand, two SEIZURE. that fast. I've been recalling a lot of the early days lately. I don't remember who I was telling the other day , but I said when I was keeping a seizure journal (which at the time seemed like a good idea) I couldn't write as fast as she was seizing. It got to the point where once we hit around 300 I would just give up. One is too many. As I was in my webinar today for the EI partners project we were discussing IFSP's and tx's, and service coordination yadda yadda yadda. And I recalled the day that I made the call to Deidre about getting rid of Jaime. I had issue with her since the beginning. But I had it. So many things about her set me off it's not even funny. Like when I told her you can't have her in prone unless she is on a boppy or something cuz when she has a spasm her head will slam forward. So she proceeds to put her in prone and trying to position her right arm when BAM. Head right on the floor and screaming baby. I won't even get into the rest of the shit because it angers me so much. But all of the memories, the early goals, the original eval, how I felt when I got the eval and read all about how below the mean and standard deviations etc etc. I laughed when they talked about not having goals be jargon, but be more family based. Not in my IFSP's. I get as technical as the tx's. It just makes me sit back and go "huh. has this really been my last few years? is this my life? was that my life?" because look at her now! Big sitting girl. Saying "pop" today while she was on the phone with me. And "Bob" lol (Trac- I don't know if you ready this but she said bob a few times LOL) When I brought pics in to her pediatricians office and picked up her script for her GAIT TRAINER I saw Dr. B, and he asked how she was. I was like "you wouldn't believe it! She is going development crazy!" he kind of chuckled and said "well, she looked good here the last time, I don't doubt it" so he was looking at the pics from the last few days, and I was telling him some thing she was doing..and in classic PROUD Dr. B form, he got misty and excused himself. And when he walked away I looked at the girls and I said " you realize this (waving the picture of her sitting up playing ipad with Tracey) is possible because of you guys. Because you are always on the ball with scripts, and getting me in here, and letting me talk to him and everything else you do!" and Danielle said "and his cell phone" I laughed and said "I bet he's sorry he gave that to me." it sees traffic from me.
She is doing so great. Except for the current explosive poop she has goin on. Not sure what's going on there. Daddy is calling the dr tomorrow. Hopefully it's nothing. She has been on SO many antibiotics since the beginning of November I get really worried about intestinal issues. But she is sitting up so much and motoring around so much now her motility has had to have increased. YAY! And there is no happy medium I'm afraid. It's either this or constipation, and constipation means flow back up of shunt...so explosive it is. Still not happy about it. Need to make sure it's nothing. She is so amazing. I love listening to her when I call for updates...she is in the background babbling like crazy. She cracks me up. I hope she remembers home when she gets here. Especially since I moved stuff around in the living room to make more play room for her. But her cribbies is the same. And our room is the same. It feels like forever since she has been here. My right shoulder feels fine now. My left is still tweaked a bit. But I'll deal. I need my baby home. I feel like I've missed so much of her life the last few weeks. I hate that. I hate missing anything. I know I can't be there for everything, but this was such a stupid move on my part by trying to short cut, and not just putting her down and THEN moving the chair. Totally preventable. I'm just lazy. And I paid for it. In pain and guilt and depression and missing my daughter for weeks. She has been in excellent hands tho. She has been having such a ball with her dad and grandparents. And playing with her cousin Carly whom she adores. It's been really good for her to be there. And I am very lucky to have them. But she is coming home tomorrow YAY!!!! I'm going to bed soon, I know I'll be up in the middle of the night tomorrow :) My night owl hasn't changed THAT much. And I feel a little stuffy. Probably more allergies from dusting today. But going to bed early regardless.
Charli coming home is like Xmas for me. I want to go to bed so it's tomorrow already. I still have to finish cleaning when I get up tomorrow. We have to move like half of her stuff back here from there that has accumulated. Although, we got rid of her toddler rocker yesterday. She doesn't use it at ALL anymore. She used to LIVE in that. When she graduated from bouncy and went in the rocker I didn't think she would ever get out of it. But like the chewie, she just stopped. She didn't want it anymore, It wasn't cool I guess. So no chewies, no more baby rocker, no more monkey mat, no more .... SHHH... , what a grown up girl I have coming home to me. I hope she knows how much I've missed her. And I will be glad to get her tx's back in here. I've missed all of them as well. Not that have missed anything with me really. I've talked to them all, and there really isn't anything going on :(. But I miss them anyway.
Well. I think that's enough. If you wouldn't mind, please say a prayer or two for Keely and Sara, for Joseph, and for Heather...continue to give her strength. And you can always pray that the Abilify continues to work ;) I'm not kidding!
Til the monkey is home..... xoxooxox