Monday, January 31, 2011

Random....

I tried yesterday to promote my friend Stacy Fulkersons new page and the link didn't work, so I'm going to give it another shot. Click here for her FB page.



A quickie montage I did the other day about the first 6 months of Charli's life, Life Before Seizures.

So, I have multiple calls in to Boston....we are NOT scheduled for an ERG like I thought we were so that makes our trek to Boston on the 9th somewhat a waste. I'm waiting to see if they can get us in another date in Feb or we will have to wait til March. I left messages all over the place down there. Haven't heard from anyone. Trying to set up our Perkins appointment as well. KK should be all set, just trying to plow thru the tons of paperwork and get the records I need. I really don't have that much time to get all of this done. Leaving in 2 weeks. For an unknown amount of time. That is kind of hard, not knowing when we'll be back. And it sucks cuz it's just her and I....but we'll get thru. We always do. ANNNNNNDDDDD I get to see my MD friends FINALLY!!!!! After all of this time!! I can't WAIT. Not only am I SUPER excited about the program, I am so thrilled that I get to see my friends down there. I figure we will be down there at least a week or two. That reminds me, I need to make a list for our trip..I was going to do that earlier. My brain is mush tonight. My heart is overruling everything and I'm zombified right now. I've been whiny all day because I'm lonely. I love Charli more than anything in the ENTIRE WORLD but i'm lonely. I want someone to ask how my day was, to be there for me. To give a shit. Because it's been a long time since I've had that. It's come and it's gone, and at one point i thought this is it...I found the one who can handle it...and he ran faster than a person allergic to bees fallin in a hive.

Live and learn I guess. Dont date friends...no matter how well you know them, or how long you've known them. Don't do it.

And On that note, I think it's time for me to say good night. Be well, stay safe, seizure free. Love you all!

well...It's 230a, which means it's time to blog somewhere...

I suppose I might as well blog since my night owl has decided it is a good time to get up and play and have a snack.

I of course got coffee and half and half yesterday, but neglected to get sugar. It's going to be a long day. If it isn't freezing and snowing horribly I might have to round up the monk and go to stewarts and get sugar. Unless the sugar fairy decides to pay me a visit.

So January is coming to a close (doesn't seem possible!! I swear it was just Christmas) and I am CERTAINLY not complaining...but this brings February and lots of trips for my traveling gal. But first, I have some things to discuss.....


Cure Rayan
A very good friend of mine is asking that people get tested for a possible bone marrow transplant... a 3 year boy was just diagnosed with Acute Lymphoblastic Leukemia. A bone marrow compatibility test is free, painless and takes 30 seconds. Gender is not relevant, but SOUTH ASIAN ETHNICITY (Pakistan, India, Bangladesh, Srilanka etc) is very important, due to the under-representation of South Asians on the national donor registry.

Second... another VERY good seizure mom friend of mine (Stacy Fulkerson..mom to James who is super cutie) and who is HIGHLY creative and helped me soooo much with my epilepsy montage and by making all of our purple ribbons is making hooded towels and will be making memory blankets (send her your favorite outfits instead of boxing them up and have a beautiful blanket made!!) For information you can email her here

Next...if you are from NY specifically the capital district, Troy Pride shirts are now available thru McPride Apparel. Or if you are Irish and want to sport some sweet Irish gear and do it proudly, order now. Kids sizes available and a new line Binky Rose is coming soon. Check him out on facebook. And I can guarantee your satisfaction...the owner is Charli's Godfather. :)

Notw that I think I got all of my current promo out of the way, time for what we are up to. February is the start of our busy season. Once the snow (in theory) starts to taper off we get movin again with our out of town appointments. February 9th we are in Boston, although I'm not sure why. I actually need to call TJ today and figure out what is going on because we don't have any tests scheduled, so it is kind of a pointless trip I think. The following week we are off to Kennedy Krieger and the Feeding Disorder Program. I am VERY excited about this trip. While we may be there for a few weeks, they are recognized as one of the top institutes in the country. I am very excited to hopefully get to the bottom of why Charli doesn't want to eat and to learn ways for us to help her get the food she should be at almost 3 years old. It took me a while to figure out where I wanted to go, and what program would be the best for us, and even tho it means we may be out of town for a few weeks I think that this is the best fit for us. The goals they have are almost 100% of our goals. I have a very positive feeling about this trip. Not that I'm looking forward to being gone for a period of time...and when we come back we will be scheduling and headed out to Detroit hopefully for March or April, plus most likely another Boston trip...but Detroit I am 110% looking forward too!! I can't wait for Dr. Chugani to see her. They aren't going to believe she is the same little girl!

Another thing on my mind and stressing me is our transition out of EI into CPSE. I actually just sealed an envelope going out to Deirdre (my first service coordinator who is now the EIO) about our transition paperwork. :( I can't believe we are getting ready to transition already. Our last IFSP is Feb 7th. I remember when we came in around 6 months I thought 3 seemed like it was forever. Now I can't believe it's 6 months away.

Well, Charli has decided it might be good to sleep after all...so I guess I will too. On a good note, her GI issues seem to be resolving. Not sure whether it's the Flagyl because all of her cultures were negative, but it's working, so I'm not messing with it. So that is a huge relief. And, we will see GI when we go to KK so I can address her motility issues finally which I have been dying to do!!

Well friends, I guess I'll go try and sleep... and look forward to rationing sugar packets that I found when I get up again. :)

Nite all

Saturday, January 22, 2011

abstract. sometimes it's all I know.




In taking this picture my thought was how beautiful it was. Snow sparkling in the background...a single stalk standing out among snow much scenery. And then I realized why it called to me. Resilience, strength, waiting to flourish when the sun from the spring hits it, not even a kink or bend from the high wind and all it has had to endure. Sound familiar? I thought so too.

My daughter. The ER visit on Thursday was hell. I can honestly say I haven't been this drained or this anxious/stressed in a long time about anything with her condition.

But like that pictures. She remains steadfast in the face of adversity. Always. She is strong, happy, determined. She had 2 failed IV attempts, a straight cath, couldn't eat for HOURS in case we had to go into surgery, a CT, and a shunt series, and when they came in to try the second IV she was sitting up playing on the stretcher. And when she feel asleep she looked so peaceful, as if none of it had it even happened. Or she was so wiped from it sleep was the best escape.

My daughter amazes me. I watch her, listen to every noise in amazement. My baby...who they said wouldn't do anything...is this blossoming beautiful child. And thru it all, she smiles. That amazing, beautiful smile. And she shows just how smart she is. she was grabbing her right arm when they were trying to find a vein like "Oh HELL no" and was hitting poor Cliff yelling "stop" and shaking her head no. Cliff and Jen looked at me because a month ago she didn't know how to do that. I said "yea, she's getting bigger" and Cliff said "she's so grown up now". Even the nursing staff and our known dr's are amazed at her. Before she would have just cried, and been sad. This time she was hitting them, telling them stop and no, calling for her dad. Amazing progression since the last few ER visits.

My daughter is amazing. She is my life. My reason for taking breath everyday. She makes me smile even when I don't think I have the energy or one more smile in me. She is my everything. I love her more than anything in this entire world. I hope she knows it...at least just a little.

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

Thursday, January 13, 2011

The retiring of the Monkey Mat. A photo tribute.

20 Days old with her bff the "chicken" that cousin Nick gave her



Apparently you can only upload so many pics on Blogger. That's kind of balls. So this will be a multi part tribute blog. With my random babblings in between. The monkey mat has been with us the whole time. The one pick up there (with the yellow and while jammies) looks like she is playing, but it's a spasm. That mat has seen a lot of spasm activity, a lot of miles, a lot of love from Charli, and MUCH abuse lol. It's been to all of our travel destinations, several hospital stays, and has been a favorite since as far back as I can remember. She has the "chicken" right in the middle the whole time. Her favorite. I realized this morning as I was looking around that I have to retire the mat. She doesn't need it anymore. My little baby, who you could barely see on it in the beginning she was so small...my now independently sitting and playing with all of her other toys toddler... doesn't need her mat anymore. And I didn't know how to feel about it. I should be happy...she is progressing so much she doesn't need the "infant" toy anymore. She is a big girl, with big girl toys, and sitting up like big girls do. Suddenly, I realize, that while my baby was growing up and will be THREE in July I feel like I've missed it. because it's been all medical. all the time. 24/7. I don't want her to not have her monkey mat. Because that means she doesn't need it. And that means to a degree she doesn't need me. She can sit (with a spotter but still) and doesn't need me to pick her up and put her on and off her mat. She is holding her bottle now. I don't have to do that anymore either. Suddenly my girl, the love of my life and entire world, is a big almost 3 year old girl. And all I can think is scratch marks in the seizure log, and Keppra changes, and ACTH shots, and ambulance rides thinking she had an aortic dissection, and sitting in the waiting room bouncing with caffeine and anxiety as she had MAJOR RADICAL brain surgery...to make the spasms stop. To make what has kept her on the monkey mat go away. Suppressing the toddler, keeping her in the supine position, batting at her toys... like my baby. But the spasms are.. well... we know we don't speak of it. I don't like to even let it creep into my head. For fear of it awakening. Because you always have fear. There is always fear of the monster. The monster that made her stay on an infant mat and use infant toys, because it was keeping her in it's grasp. Not letting go. Until we saw the light, Dr. Chugani, Dr. Sood, Sarah... Detroit. Until we pried the monster from tired, strong, brave, amazing, miraculous girl. And let it go. And I realize now I need to let it go. Because it was the past. Part of a bleak past, which at the time had a bleak unknown future. But the present is big girl toys, and iPads, and using her AFO/SMO in the stander.. and getting bigger. Becoming a toddler. no longer a baby. But a little girl. A bright, shiny, happy, beautiful, amazing little girl. My little girl. I feel like I've missed so much. So much time consumed by seizure counting. When I should've just enjoyed my time and what she was doing... but how do you do that when you are watching hundreds and hundreds of seizures a day. How is that not the focus? It's not now. Now the focus is the amazing abilities that she is gaining. Like putting a ball in a toy. ASTOUNDING for me to see. My baby repeatedly picking up a ball, and putting it in a toy, waiting for it to come out to do again. And shining at a new iPad app that Tracey has, and weight bearing for Joan, and standing in the pool with Linda, and telling us "tap" so we play too. That is no baby. That is a little girl. My little girl. Who no longer needs her monkey mat. But I think I do. I'll keep it no matter what. But I think I'll keep it out, just move it so it isnt focal anymore. So it's more if she wants it she can sit and shake Mr. Chicken. Until I feel I can put it away in her "box of things". I feel like I've missed so much time with her in life somedays. 13 days in NICU, these last couple of weeks at Larrys. They (Larry and family and the therapists) have all been great in keeping me updated, and pictures, and phone calls home. And I go visit. But the guilt is killing me. The loneliness is only bearable now because I had to ask Dr. K to put me on something else because my Effexor alone wasn't cutting it. Weeks I've missed...months even because I was so focused on appointments, and seizure tracking, and my journal. I should get rid of that too...but I do find it's useful even still these days for ER trips to have what's been going on written down. When Charli comes home, she is coming home a bigger, smarter, cuter (as if that were possible!) girl. Who doesn't need her monkey mat anymore. Even tho mommy still does. It's like an old friend. One that has probably overstayed it's welcome ten fold...but I hate to box it just yet. Even tho I have thrown out most of the toys associated with spasms after surgery, the mat stayed. Because she LOVES it. So it will be close by. In case she decides she wants to go grab it and chew on Chicken or froggie. But the focus will no longer be the "infant mat" it will be the new play area with all (and I mean ALL) of her toys out to play with. The ones with balls that she couldn't use before because she hadn't learned it yet... she knows now!! She can roll about the house and motor all over now. My little girl. My teeny 6 lb baby girl, who looked so lost on that mat in the beginning. Is now a beautiful, smart, amazing girl. I am so proud to be her mother, and proud to have the family we do who does anything and everything they can for her. Both sides. And therapists that go above and beyond the call of duty for us. I'm so incredibly lucky. She is so amazing. I need to buy that elephant thing Joan has cuz she loves that. My girl. My big girl. That I love more than anything in the ENTIRE world. I am so thankful to Larry and his family for helping her so much, allowing the therapists to come out there while she is there. They have done so much for her I don't know how I could ever possible thank them.

So the next blog will have more monkey mat pics. and probably more rambling. For now, I think it's bed time. Good night my sweet Chee... I miss you. I love you.