Monday, February 28, 2011

the doctor.. taking care of mommy to take care of the monk

My baby should be on her way home right now, but I asked her dad to keep her one more day to allow for the antibiotics I got yesterday to kick in. Sinus infection, possible ear infection and bronchitis. Joy. I'm going to attempt to sleep it off today. We have LOTS of appointments starting this week (March Madness begins) so I need to be as close to 100% as possible.

I miss my girl sooo much. But I know she is having fun at Daddys.

So today is the end of Bearduary, but there is still time if you want to sponsor the beard growth. Click Bearduary, then Charities, and donate a few bucks to the Epilepsy Foundation of Northeast NY. It is greatly appreciated. Again, thank you to my wonderful friend Bob Buckley for this awesome opportunity to help one of my favorite causes.

Today is also Rare Disease Awareness day. Click here to learn more, and how you can become a Rare Disease Ambassador.

Sooo ...for this week we have therapies, appointment with our local opth, and next week we are finally going to Maryland to Kennedy Krieger for the evaluation to get into the feeding program. I'll be there for a few days, but the programs have a 4-6 month waiting list, so it will be a while before we actually get in. How I maintain my sanity until then will be the trick. Charli refuses to even attempt food now. She used to love cereal bars and puffs, now she wants nothing to do with it. I have anxiety when I'm trying to get her to eat like I used to trying to get her to take her topamax. I know it will come..I just need to give it time and let the pros deal with it. It's just so hard knowing what she is capable of and knowing that she just doesn't seem to want to. But hopefully we will get at least some ideas when we go for the eval. I know nothing major will happen until we get into the program, but I'm desperate for anything at this point.

And for my next trick...I have decided (as part of my Early Intervention Training Partners intercession homework) to make one of my individual leadership goals starting a local chapter of the hydrocephalus support group. I wanted to focus mainly on pedi but I figure why exclude. I have already been in touch with a physician who would be interested in being part of the medical advisory board and speaking. YAY. Now I need to track down more professionals and get some parents. I started a facebook group (Hydrocephalus Support Group Upstate NY) but I don't have any members yet :( If you build it, they will come. Eventually. Maybe if I tell them I have girl scout cookies.

In the meantime, I think I am going to stick to my plan of sleeping off the sinus infection and go nap while I can.

Remember, it's not too late to sponsor the beard! Beards rule. SEIZURES SUCK!

Monday, February 21, 2011

The Mighty Monkey: Bearduary

The Mighty Monkey: Bearduary


In case you aren't on facebook and haven't seen the most AMAZING friend make the kindest gesture in growing a beard and having it sponsored with all proceeds being donated to the Epilepsy Foundation of Northeastern NY.. I give to you a link. To behold the beards. And the kindness and compassion. And the awareness. Bob Buckley, a friend of mine from "the good ol days" is kindly donating his face and facial hair and TIME to our cause, and raising much needed funds for the EFNENY. I really can't accurately get out how touched, honored, grateful I am for him doing this. He made a video to promote the last week of Bearduary and I balled thru it. To have someone, totally outside of our situation, take the time and energy and devote it to our cause, our mission of fighting epilepsy and supporting our local epilepsy foundation... I can't even explain what that means to me. I wish I could put in to words what my heart wants to say but it isn't enough. Bob has always been the sweetest, kindest most amazing soul I've ever known. Someday I hope to find the words.. and to thank him (and his wife for supporting the beard too!) and to all of those who donated, THANK YOU! I just can't say thank you enough.

Now to my wee one. I NEVER find myself questioning surgery,or anything that has happened since then. We have made steady, consistent gains and progress since we left the hospital. With the exception of the triple shunt revision frenzy this fall, she has not regressed hardly at all. Except for one thing. EATING. I would be lying (and lord knows I will always tell you all the truth..because, that's what blogging is for!) if I didn't catch myself complaining about it lately. I'm not complaining about surgery.. it's just that she has consistently and steadily lost her interest in eating, particularly with self feeding, tolerating oral stim, taking food off a spoon etc. I was looking back thru pics and I found pictures where she was feeding herself with a spoon, she was holding and eating her teether feeder, a bitter cookie. I don't get it. I don't understand why THAT of all the things that could've regressed that was the one. And now I'm stuck. I have an almost 3 year old getting ready to go off to program that doesn't eat. It's SOOOOO frustrating seeing those pictures. I think a lot of it aversion from being in the hospital. I can't figure why she would just not want to eat anymore. We are going to Kennedy Krieger in March for an intensive feeding eval and I know they will be able to help. They are top of their game. I expect to leave there with better methods than what we came in with. It's just so damn frustrating because everything else is going great. It's all wonderful.. Just the oral stim/eating piece of it. Sigh. I know it will be ok. I just don't know what to do anymore. I guess we'll find out when we get there.

Thursday, February 17, 2011

March Madness indeed!!!!

In like a lion, out like a lion. March brings about our busy season, if you will. Almost all of our out of town appointments begin (again) in March. It's much easier to travel at the end of winter obviously. So far we have local opth, audiology eval, and Maryland feeding eval. April is Detroit (yay!)

It seems like we have something at least every week starting the beginning of March. And, I've decided she should have a tricycle. She has figured out how to spin the weeble elevator with her foot. If she can do that she should get the trike down no problem. (she is, after all, a very smart cookie).

So my new super mom trick will be to make that happen. Somehow I don't think it is going to be as easy (and by easy I don't mean easy) as the Kimba and the bath chair. But, if we know one thing it's I like to fight. And fight I shall.

First, I bed. This past week I thought Melatonin would bail me out of non slumber land...but no such luck. It's worked ... to a degree, except that now she is just falling asleep earlier and waking up earlier to be up all night. Not quite what I had in mind. We got back to almost schedule tonight with naps so I'm hoping that she will fall asleep at daddy's at a good time and sleep thru the night. Hoping even MORE that when she comes home she'll do that. It's one thing to be in the ER or the hospital and stay up all night, but when you are home in your jammies somehow it just becomes that much more difficult, and suddenly every minute seems like an eternity. Thankfully I'm fully stocked on K Cups right now.

And everyone wonders why I've been going to bed like an old person. Cuz my night owl likes to par-tay. At college hours. zzzzzzz...

Night all. xoxo

Sunday, February 13, 2011

Wonder what Molly is doing... (hopefully sleeping, like I should be)

so before you click here get some tissues. I was fully warned before watching this even shorter version of "where's Molly" in my EI Partners class today, and I thought.. I can tough it out. I won't cry, not in front of a room full of strangers. I'm good. Not so much. This short, very briefly worded clip with haunting music and even more hauntingly somber music, is a tear jerker no matter what. It made me want to walk out of the building and drive to Larry's and hug Cheese. I can't imagine what life must have been like for those who were dealing with or had a disability before modern times.

Institution. Think about what pops in to your head when you hear the word. The associations you have with it from movies, TV. Big sterile buildings, full rooms of people wearing white, drooling, rocking, yelling. Or worse yet, just sitting. Relegated to what is the space of their own body and that is it. Left there. To just be. Not to be the best, or be everything they can be.. but to just be. Because that is how they handled disability back in the day. Or mishandled. And maybe I'm shaking my mommy finger and saying shame on you out of line, but as a mommy of a special needs, highly medically complex child...I don't think it's wrong for me to pass some judgment.

Part of this is why I try so hard to make sure Charli has every available opportunity we can get right now. Because I know she is more than just being. SO much more. So much life and progress and opportunity. And I also know that isn't the case for everyone, and not everyone has the ability to be home all the time. But something about the way it was handled before is just so heartbreaking. Not something, everything. They didn't HAVE what we do. The tests, the multiple diagnoses. The ability to participate in a society that once said you have to go be in a home with other people who are just like you. Just that alone is reason enough why we should proud. WE DON'T tell people you have a disability, go hide. Or hide it. We stand on corners, or shout on rooftops, or facebook and tweet our causes. We don't put it in a room and pretend it doesn't exist. We join panels and support groups and meet other people because we WANT to know MORE. We want to know that there are OTHERS out there. In essence, what we have now may be almost harder (i know, not really) but it's hard to find others that understand the situation you are in sometimes. Sure everyone wants to get it, or tries, but they don't. Unless they are in it. And unless you find people who are dealing with it too... you are on an island. It may be an island you choose to put yourself on, but it's an island none the less. Alone. I'm not ashamed of all we've been thru. I know that what we have been thru has been hell, and we have all come out on the other end. I don't want to stick my head in the sand and pretend it didn't happen. I did that in the beginning actually, which is why the small part in the back of my head understands some degree of "Where's Molly". Because I wouldn't even acknowledge that Charli had a stroke for the first five months of her life. If I didn't say it, it didn't happen. At the time it seemed like I could get away with it. She was seemingly unaffected by the stroke. Everything could be fine. I could just pretend like it was a glitch in the mainframe and none of it happened. But reality was December 26 2008, when she had her first seizure. Her first of what would be (one could only speculate) hundreds of thousands..maybe million or so seizures. When she started to grow larger and show that left sided preference (that doesn't typically emerge certainly before a year) It was then that I had the fight or flight response. And that time I choose to fight. And fight like hell. And not ever turn my back on it again, because if I do, it could sneak up and knock me right on my ass. Well, it has anyway at times, but this time it wouldn't be because I was sleeping on the job. I threw myself into research, groups, learning as much as I could. I tried to get as many therapies for her as possible with the possibility of severe damage lurking daily from her seizure activity. New catastrophic diagnosis brought about the ability to have more services, and I gladly ate up all time slots I the point where it was, and probably is too much. But we need it. I need to know what to do with her, and we need to push her. Look at where it has gotten us! Since May, my girl who didn't talk babbles and jargons constantly, rolls ALL over the place (she hadn't rolled since she was four months old) has at least 20-25 words, 5 of which are functional. She is holding her own bottle, She is sitting up unassisted (wish a spotter.. but still...she sat up in the IFSP the other day for TWO hours playing with her IPAD) It's because I researched my ass off, and talked with other parents that I found Dr. Chugani to begin with. And that brought us to Detroit, which brought us our miracle. It will be bringing us to Maryland soon for a feeding evaluation so hopefully we can get some good insight on how to properly go about feeding Charli, and what her possible areas are that need work. And what is causing her stomach issues would be nice to know too (which I guess I's more of what can we do that we aren't already doing)

I guess the really messed up point to my rambling is that she is my life, this is her life, and I am going to make it the best life possible. We all are. Here family, therapists, doctors. Charli inspires me to greatness. I want to do everything I can to advocate and educate people for her. I want people to know there are options, you dont have to like your dr, or listen to what he says. That there are surgical options, that there are new drugs coming down the pike all the time. I want to do as much as I can parent to parent. It's a hard road to start on , but as you travel down it eventually you realize it's not all that bad. You meet people that get it. That understand You. And then maybe you decide someday you want to do something... like me. I try to be as active with the groups and push my causes when I can. Everything I do I do for Charli, and I just want her to be a happy, smiley little girl like she already is.

I kind of just lost my ooomph for blogging, getting really sleepy again.

I think, if you have a child with a disability, you should watch the movie. It's heart wrenching. But it's worth the time to stop and appreciate the world we live in now, and how lucky we are and how lucky our children are.

I think it's time for bed again...

Not solely what I wanted to blog about, but there is always another day. Makes sure you go see Molly

Wednesday, February 2, 2011

It's 4:04 and I can't sleep

and to end on a happy is our first ever sleigh ride

I hate it when we get up at the ass crack of dawn, and then she falls back to sleep but I can't sleep. Don't ask me why. I should be able to sleep where I stand for the 3+ years lack of sleep I've had. But alas, here I am with my coffee (and sugar!! for those who follow my fb) intermittently blogging and trying to find a place to stay in Baltimore. I've been filling out release of records forms which is boring the hell out of me. I think I have all of our KK paperwork for the most part figured out and done. Just a few more parts that Tracy will help me with and that's it. Then it's Boston next week for a clinic appointment with Dr. Fulton (of course we don't have an ERG scheduled until May-ish, whenever that schedule opens up..maybe March tho) and our VEP is in August. Then the following week we set off down south FINALLY to Maryland. The one place I've been TRYING to go the last few years. I finally found a good medical excuse to go and visit friends. Since Charli was diagnosed there have been a few moms that have been my "core group". Carrie O,Carrie M, Cara, Jen, Danielle, Chris Tucker and the CHOP crew, Tara, and Kari. I can't remember a time they weren't around, listening to my every whine, whimper, cry, shout, laugh. They have been thru it all with us. Since then, my core group has expanded GREATLY with the most amazing group of strong, wonderful women (and some men!! Don't want to exclude the guys!!) and the most beautiful, handsome, amazing strong kiddos. I've been blessed to be able to "meet" the people I have on facebook. Now I will be blessed in actually meeting my MD family. MD has a VERY special place in my heart. My MD family has been so incredibly available and supportive. I feel like I know them, and have known them my whole life. We laugh, we cry, we bitch, we talk jello shots...We've talked about living on the same street. My wait is soon over as I get to go and not only have the Monk evaluated at one of the top feeding disorder institutes, but I get to meet my precious MD family. I can't wait. And it couldn't have come at a better time. (or worse, rather) Kari was just told by doctors that her son, JayJay, has a rare (extremely) disease called Gallowy-Mowat. Less than 50 cases, with no identifiable gene. Right now he is in kidney failure. My heart is in failure now. This breaks me on so many levels that I don't even know if I can accurately convey it. In a world like ours... Holland, we expect things, yet we don't really know how to deal with them when and if they occur. The thing with Holland, it could be anyone of us, at any time dealing with this kind of news. Some of us have already had it. No words can say how I my heart aches for Kari and her family, for Jay, for us moms who see his pics and hear his updates, for those of us who consider them not only friends, but family. I am so thankful that I am able to go to Maryland and see everyone in the next few weeks...because I just want to hug and squeeze JayJay and give Kari the biggest hug ever. And kick back a few jello shots. Our group has suffered so much this year. These last few months. If I haven't said it before...I EFFING HATE SEIZURES, I HATE CHILDREN BEING SICK. It shouldn't happen. I have said this before so many times...I'll take it. All of it. Leave them alone. PLEASE. I'm tough..give it to me. I will build all of their protection with bloody hands. Because they aren't just support for me, or "social networking peers"...they are all family. Every one of them. Even all the new people who I've just added, or who just added me. Family. We are all joined by this in one way or another. We all rely on each other so much. Like Family. Ok, I need to stop because I'm going to cry and that is not good cuz I won't stop.

I guess I'll go watch some tv til the Chooch decides to wake up. I think my mom is coming over today.. (yay!) so I can nap, and brave the blizzard of 2011 to hit up the grocery store. We've gotten a LOT of snow the last few weeks. Today we are due for up to a foot. Ay ya. Ok. I'm going to go make my hotel res. for MD, and make my list of things to bring. Cuz before I know it I'll be on the road headed south. Heading to what I feel like is home.