Sunday, March 27, 2011

Charli 2, accumulation 0

So, yet again, there it is. And there it goes. It's like a tide. Except a big, engulfing, horrifyingly scary tide because you don't know if it is or is going to result in failure. Really it's a giant pain in the ass.

So two days in for observation of the "accumulation", 2 CT's and Shunt series' later... the cause is abdominal distention/abdominal processes. Ok. so off we go home, satisfied (sort of) that it's just poo causing our pocket.

Until the night before last, when the vomit happened. Followed by the spike in temp to 102 (which is the highest she has EVER been) She was with daddy when it happened. As the day progressed so did her whimpering, irritability, and decreased appetite. Off to the ER. This time I wasn't there....I had a blinding (or still have I should say) migraine, so I stayed home not convinced that this was a neuro issue. Bags packed in the event I get a call saying surgery, or admission. Well, admission happened...but Larry was kind enough to stay. The were admitting to give fluids and observe. I walked in this morning to a playing monkey who gave me a bright cheery "Hi". They got an IV on the second shot last night (go Stephanie!), she had yet again another CT/shunt series which still showed no neurological changes, but changes in her abdomen in terms of pressure/gas/stool. (lovely, right) Once again nsurg is convinced that this is not a shunt failure, but just ICP changes due to increased abdominal pressure. Blood cultures and urine culture pending....Dr Brand said if the UA was clean we could go home because he wanted to minimize her hospital time. We all agreed. So they straight cath'd her (never a good time) and the UA was clean. So my monk went home with daddy to play with Mema and I could try to sleep off this migraine. It's getting to be really annoying..just when I think I'm good it's back. I'm currently biding my time so I can go to bed. It's only 545. And I'm ready for bed. The last several days have tapped me beyond belief. And we have A LOT coming up.

We have Detroit which is obviously the biggest, she has her evals for CPSE (IEP) and the tour of her new school, pedi appointment tomorrow with Dr. B for hospital follow up. Thank God for him that's all I can say. I think I texted him 5 times yesterday, talked to him on the phone twice, and there he was this morning ready to see her. Then I bumped in to him at Dunkin Donuts and he offered to buy my coffee. I'm pretty sure he is an Angel here on earth. I know we are with him for a reason. I can't say enough good things about him. Or the office (especially Danielle) and Precious who must be out having or have had her baby (yay!) because she hasn't been there the last few visits/calls.

I cant wait for Detroit. For as much as I'm not looking forward to making the drive, I can't wait to see everyone. And knowing Dr. Taraman is leaving this summer I am so thankful that we get to go now and see him one last time.

Well, my migraine is telling me to get off the computer, but I just wanted to give a quick update as to our week. Saturday was Purple Day for Epilepsy btw in case you didn't celebrate and rock out your purple. Ours didn't end very well with a hospital admission. I'm thinking Purple Party next year. Perfectly Purple Party. Cuz we have to make up for this year. And a party sounds like a good idea. Plus it allows for cake. That is always a plus.

Purple Rules. Just sayin...

Monday, March 21, 2011


No, for once, I'm not talking about snow. Although it did do that today.. the first day after the first day of spring.

This time the accumulation is CSF around the shunt. For those not in the know, Charli has a valveless VP shunt, something that should not be accumulating fluid because there is no valve to regulate flow or to not regulate flow. So something, Lord knows what, is malfunctioning. According to the CT and shunt series done in the ER Thursday there were no obvious blockages or kinks in the tube.

So currently we are dealing with mystery fluid pocket. And let me tell you, mystery pocket is driving me out of my mind. I am scrutinizing every inch of her head, looking for other possible hygromas and lines of demarcation, every little behavior, every head tilt. Every time she doesn't want to finish a bottle right away. I'm GOING CRAZY. Normally it's malfunction, ER, emergency surgery. While scheduled surgery certainly is better for all involved, it's still nerve wracking as all hell to sit her and count the hours til our appointment with nsurg. OH. that reminded me I wanted to email Dr. Sood and see what he thinks. That may have to wait til tomorrow now. My eyes are getting heavy.

My only hope that tomorrow is quiet, and that no other symptoms start to present. Hopefully she can maintain til we see Dr. Adamo on Wednesday. Dr. Brand feels that he is most likely going to schedule a revision. There is no reason for fluid to be built up there, and now that her stomach issue has resolved there should DEFINITELY be no reason for a pressure change.

Sigh. I don't even know how I feel about this. This valveless shunt has worked the best, we've had no overdrainage which was a big concern, and it's lasted the longest out of all of the other ones. I don't know why we keep having problems with them. It's driving me batty.

Top that off with when I went to pick up Charli from her dads today her grandmother showed me a video of my nephew CLEARLY having a seizure (this is all new...the past week) while playing a video game. To me it looks like partial/absence. Probably will go on Depekene. Just what our family needed, another epilepsy. So that has had me thrown off all day. I'm a freakin mess. I need to lay down for 24 hours not get out of bed except to pee and make coffee. That's it.

So for those of you that pray, please pray for my brother and sister in law, and for Charli's grandparents...they are all under a great deal of stress right now and obviously very upset and need some good thoughts and lots of prayers. If you could say some for us as well if we need to have surgery again I'd appreciate it.

I'll update more after Wednesday when we see neurosurg.

I'm beat. Going to bed. Nite all.

Sunday, March 13, 2011

Let's talk about STROKE, baby.

Yup. I said it. Stroke. I bet some of you didn't even know that Charli had a stroke. All I ever talk about is seizures, seizures, epilepsy. Not that there is anything wrong with that. But lately the dusty recesses of my mind have been stirring, and I realize now that I've let the stroke part of my advocacy brain lie dormant for too long. And for that I apologize. Time to devote (or try) equal time. This comes at a time when stroke issues are (at least we think) more of an issue now than have previously presented themselves. (Hence the KKI feeding eval) 1 in 4000 babies will suffer a stroke in either the neonatal or perinatal period. When Charli was born it was barely noticeable. A small lip issue. Larry noticed it. Everyone thought he was just being hyper critical. Little did we know that within the next 12 hours shit would hit the fan like we wouldn't believe. Charli (come to find out several months later) has a clotting disorder, as do I. Factor V Leiden mutation. It is a hyper coaguable condition which increases risk of stroke, clots, and miscarriage. Casting and surgery usually require an anticoagulant therapy, and birth control is a total no no. In the beginning the initial MRI showed what they said was a "bilateral MCA infarct" meaning both sides of the brain, middle cerebral artery infarction. Or BIG STROKE. Come to find out in Detroit that wasn't quite the case, but the stroke was significant enough. It almost completely wiped out the left side of her brain, and her right side does have abnormalities. Thankfully it was fully formed, unlike her left side. Charli didn't begin to show signs of her stroke until she was about 5 months old. That was when I began to notice her left sided preference for trying to do things. Not that 5 month olds are doing that much... but I noticed. It was then I knew we didn't escape unscathed as I had hoped and prayed everyday. Her tone had always been symmetric and equal. I thought...maybe, just maybe...we were ok. Boy was I wrong. In over a month we would have the seizure disorder, and life as I knew it (when I thought it couldn't get any worse) got so much worse it's unspeakable. But I speak about it, because it needs to be told. For the first few months I couldn't even say the word stroke. If I said it, then it was true. How could my baby have a stroke. Babies don't have strokes. Old people have strokes. (of course Larry had to go and prove us all wrong by having a stroke when the baby was 6 months old...which you all probably didn't know as well. Spontaneous carotid artery dissection) 2 strokes and a catastrophic seizure disorder in 6 months. And people wonder why I need xanax.

I had a purpose...then the song just changed on Pandora to Metallica One and I lost all ability to think past "GET OFF MY COMPUTER".

Most people often think of stroke and think paralysis. That usually (or often I suppose) is the case. Charli is right sided hemiparetic, meaning she is not paralyzed, she has movement, it is just not very volitional. Which is why she gets every therapy known to man. To increase her muscle re-education and prevent atrophy. She has gone through 5 hand splints so far (I think..if memory serves me correctly..and usually as of late it doesn't) has one that still works, her AFO and SMO, and a scoli vest which she has worn probably once. That didn't go very well. The problem with hemi kids (and now by that term I mean hemiparetic and hemispherectomied) is they have weakness (obviously) so she tends to be the leaning tower of Charli. This has caused a slight functional scoliosis. It is beginning to get better as she is able to strengthen her core muscles and sit upright for longer period of time. She has also developed the ability to lean forward and back up again in a sitting position, and has some righting ability while sitting up. These are all things that prior to surgery were non existent and not even on the horizon. Charli was not able to sit up prior to her surgery. Mostly due to seizing which was controlling everything at that point (which is why I rarely talk about her stroke).

I really hate ending a blog like this. abruptly. But literally, all thought has left my brain about how I wanted to write. My brain is a cycling of thoughts at all points in the day, but I am currently unable to get them out now. Which frustrates the hell out of me. Well, I guess this is how it's got to be til I can collect my thoughts again. The main purpose of all of this is that Charli isn't just epileptic, she is a stroke SURVIVOR, and that every day there are more stroke survivors born, more lifetimes of therapy. That can't and shouldn't go unnoticed and people need to be aware of the symptoms and the frequency that pediatric stroke occurs.

Ok, so I'm out. Like trout. Til next time.... remember Kids (even BABIES) have strokes, too.

Saturday, March 12, 2011

KKI, nutella, curls and other randomnings.....

Let's start with the Nutella. Chocolately hazelnut spread of the Gods. Which I have now given up for Lent. After polishing off two jars for the first time in almost 35 years. Why has no one ever had me eat this before? And for the record, no sugar Hazelnut Coffeemate has nothing on Nutella. In fact, not such a fan. I need my Baileys creamer.

It's currently 451a, EST, and the world is a strange scary place. Just getting back from Baltimore today about 12 hours ago (or so) during massive rain and flooding in MD, NJ, NY...and Japan sustained an over 8 magnitude earthquake today which triggered a tsunami with waves 23 feet high. Parts of Japan are demolished, and the aftershocks and tsunami waves reached the west coast and Hawaii. I woke up a while ago for no reason after a very restless night of sleep. Probably cuz Monk was up most of the night last night, and she isn't here tonight (with Dad now) and I miss her so much. According to Larry she woke up around the same time I did. Guess we are pretty in tune to each other even when not together.

So my little Curli-locks had her feeding eval at Kennedy Krieger Institute on Thursday. It was an almost 3 hour appointment, with a PA, OT, Nutrition, and two behavioral psych people. It was a lengthy H and P, and full exam. It was exhausting both mentally and physically on all. Charli rocked as she always does. She was great thru the ENTIRE thing, hadn't napped since early that morning..tolerated me trying to feed her, sat in the high chair and played, and for the second time that day ate a few bites of frosted animal cookie for me in front of the team (so at least OT got to see her ability to chew..which she said looked good, and was good because she showed ability for munching which means she has the ability to chew and eat) They all loved her (of course) and she showed ALL of her tricks while I was going thru her medical history with the team. I was off my game that night too. I don't know if it was because it was so late, or what, but I was not on the ball like usual. I couldn't remember the name of her Nutramigen. How the hell did I forget that, she was on it for almost 2 years!

They said that due to her complex history and all she had been thru it was not hard to believe she has difficulty eating. She was recommended for the intensive inpatient feeding program, which is 7 days a week, in a hospital, with therapy being OT and SLP. I'll have to figure out something for PT. They prefer her for inpatient because of her severity of food refusal and because of her shunt issues they would rather her be monitored in a nursing unit. (which is kind of fine with me, if we are going to be there for 6-8 weeks, we might as well be in house) It's all just starting to sink in now. The program is INTENSE. They use all, if not almost all, ABA. The beginning does not sound pleasant and I know I will be popping xanax during it. It is basically "you don't get to stop eating by refusal, period.. you will learn that the spoon and food is ok" Trying to reduce refusal behavior by methods that one would rather not have done on their child (similar to force feeding topamax, which is when I used to be a sobbing mess) so this ought to be interesting. They have a developmental play room, where they do pre school type teaching and playing, and you can get "leave" for up to 4 hours a week to go out in the community. That will come in handy so we can see our friends! The current recommendations while we are on the waiting list is to start a timer method for feeding, and have feeding be done when the timer is up, not because she has refused. That way she starts to associate the timer with end of meal. The second is that we drop a bottle of pediasure a day and replace it with either water or milk. I was planning on transitioning her to milk when we got back anyway, because I know she doesn't need the psure outside of the vitamins and minerals (which we can supplement easy enough) So we are going to start that this weekend I believe. Going to try and mix milk and psure and alternate water and milk to drop a bottle of psure. She was 22 kg at her appointment. (that may be off slightly because she had a wet diape and was fully clothed, but I don't believe it is that far off) I've been saying I thought she was around 43-44 lbs lately. Don't ask me what the exact conversion is. She was also 38.4 for length. She is above 99th percentile for both. My big girl. Needless to say, she doesn't need the high calorie drink now.

While we were in MD we got the opportunity to meet some friends from the yahoo group and facebook. We met Chrystal and Robbie in Jersey on the way down, who kindly drove out to meet us and give us leftover Vigab she had. In MD, I got to meet one of the first moms I ever started talking to, Tara. She is one of my biggest heroes. We (of course) got coffee :) The kids weren't with us unfortunately, Aiden was at school and Charli was at the hotel napping with my mom. Later that day Kari came to the hotel with JayJay and the kids got to see each other and I got to meet another amazing wonderful mom and great friend. I love them all so much. Charli was so cute with Jay, she was staring at him and rolled over and grabbed his hand. I've never seen her interact with another child like that. I truly believe she knows how connected they are, and their moms are. I can't tell you how excited I was to take this trip, not just because of the eval, but because I was going to be able to finally hug some of my super moms and kiddos.

So it looks like we will be spending our summer in MD. Hopefully it won't rain like it did on this trip. I had to trudge thru some serious water to get to the car, and they (the hotel) had the most ridiculous pump set up to try and drain. It was hysterical. (see pics lol)

Well, I think I will start reading my ABA book I just purchased so I can learn a little bit about what we will be doing. Good timing on my part!

As always, thanks for reading about my little (well, not so little) monk.

Saturday, March 5, 2011

top o the blog ta ya.

Currently it's 717p and I'm fighting to stay awake. I'm so lame. I'm also drinking far too much coffee lately. (a hush falls over the crowd) I know. I can't believe I said it either.

I feel like I am getting/fighting some variety of stomach bug. Nothing horrible yet..just feeling a bit off. But there are some nasty flu bugs floating around. I don't have time for that shit. I'm leaving for Maryland in a few days..and can't be sick.

I was going to fold the laundry, but with most things today I've decided it can wait til tomorrow. So I'm blogging instead.

I've been having this mixed source of emotion today. Part of it is an overwhelming sadness, something I can't put my finger on. The other part is joy, being grateful for the absolutely most amazing group of people I could ever have imagined meeting.

My facebook has 600 some odd people on it, and of them I feel a connection with almost them all in one way or another. Whether it's music, school, family, or the biggest collective of seizures, or stroke, or developmental delay.. I love each and every one of them. I often hear about how all I do is bitch and whine and complain on fb. And yea, I do. But I do that because I know I CAN. I know within a matter of minutes there will be a mom or two to leave a kind word, or tell me they are having a bad day too, and dr's suck, and reports suck more. I know that it's a safe place, where i can speak my mind and not be condemned for it by most. (Most.) I don't mean to be negative all the time on there, and I certainly try to share the positives, but if I weren't comfortable with it, and with my friends, I wouldn't say anything at all, and then my page would be barren and boring. And who wants that. I have a core group of people that I talk to on usually a daily if not every few days basis, and without them I don't know how I would function. I get up in the morning and look forward to seeing their statuses about how their nights were, how work was, how the kiddos slept, and before I go to bed I do the same, to see how seizure control was, how kiddos are responding to meds, what fun things did someone do, did someone have something nice happen and smile. I LOOK for the good. I may talk about the bad, but I look for all the good. And I let it in, and cherish it. Because I am able to share with all of my friends their good. Just like they share mine when I post. It gives me hope, drive, fight, laughter, sometimes sadness...which just strengthens my resolve and fight.

This week I'm going to Maryland, and I am finally going to meet some of my core crew. Friends that have been there since day 1. And I can't wait. I've been wanting to get down to Maryland forever now, and it's finally happening. I can't wait to see what this eval brings about, and I can't wait to finally hug my friends and meet the amazing kiddos whom I love so much.

This week has been long, even tho it was short. I didn't get the baby back until Tuesday morning, but she hadn't been feeling well and sleeping even worse than usual, and I haven't been feeling well, then was all a big mess. Then I got the report from Opth in Boston. Normally I don't have issues reading reports. I'm used to it. But this one mentioned a "right visual field deficit" and that she was "properly registered as legally blind". I've had reports knock me on my ass before...that's why I don't usually read IFSP reports and I hate IFSP time (as I'll hate IEP time just as much) I don't need people to tell me what's wrong with my child. Call it ostrich syndrome but sometimes I just dont want to hear it. Then it was with mixed emotions I saw Heather post Jakes Help From Heaven and the First Annual Fundraiser. I'm so incredibly proud of Heather and Brian and Ethan for organizing this. But we shouldn't be having this. He shouldn't be gone. None of them should be gone. So it was with great pride and sadness I registered us. But I know it will be a wonderful event, one celebrating Jake and all the love that people have for him, and all of the good that his parents are doing by starting this foundation.

I was also asked the question "do you ever think you will have any more kids" this week. Obviously for those of you that know me really well you know I am going thru a divorce, so now it is not an option no matter what. But truthfully, I don't know. I'm scared to freaking death about having another child. I always wanted 2. But the unknown is too much to deal with. So I automatically answer no. Done. This baby baking machine is off. But I don't know. I assume that is the case. But I don't know. And that makes me sad. Because I would like for Charli to have a brother or sister. But I couldn't do this again. There are days (and they are far more frequent right now) where I can barely do this. So many times lately I have just wanted to throw in the towel. Wave my flag. Hide in someones suitcase and land on an island like Lost. Because I've hit (well, LONG LONG 4 surgeries ago) my breaking point. My daughter is tough, and amazing, and beautiful, and strong and resilient. And I take all of that and I hold on to it with all that I am. Because I feel weak, and tired, and lost. Therapy is driving me nuts lately. Time changes, tardiness, missing sessions because of illness, or weather, broken car's all driving me nuts. 18 therapies a week. That's a lot of Frackin therapy. And now I'm trying to shuffle them around because when Charli was younger, she didn't do well in the they are all clustered in the afternoon. Now I'm trying to space them out a little bit so they aren't so clustered because it's just getting to be too much. Horse therapy just moved to Mon from Thur today and a different time, OT is changing their Thur time, and Speech is trying to come Wed instead of Thur. Respite starts this week THANK GOD. I use my respite so I can go see MY therapist. Because let's face it folks, if you think Im going thru this without the help of a professional and medication you are all looney. So Respite Tuesday, leave for MD Wed, eval Thur, come home Friday. Next weekend is my Early Intervention Training Partners Session III in Saratoga...that will be fun. We have a dental appointment for Charli scheduled for the 28th...that oughta be interesting. Then we leave April 9th for Detroit for a week. I know there are some other appointments in there as well. My glasses will hopefully be in on Mon or Tues so I can actually see when driving at night (always a plus), I have my list for MD ready to go just need to have the Cheese home so I can start to pack her bags.

Totally off topic, but I'm also getting very restless with my house. I bought a painting tonight and some frames to print out some pics and put on the walls, because ever since I re-feng shui'd the living room my walls are bare. And I am itching to finish her room, and maybe even put her in it. That will be odd. She has slept with me in our room since day ..well, 14 since she came home from NICU. I want to get that other room done, get a new couch, and get some paintings and prints up. Spring cleaning and re vamping is starting! I have to finish stuffing envelopes for the Shining Star Epilepsy program, hopefully Stroll Committee will start up again soon, and its almost spring which means camping weather!!!! WOOOOHOOOOO. That will be the first thing I do when it's nice on one of my weekends. I need to get my camp on. And thankfully thru fb I have some new peeps to go camp with. yay! Well, I guess I've blatted on long enough... I think I will say good night, thanks for reading..and go to bed. I'm going to try and sleep off whatever my body is fighting.

PS how come no one told me Nutella is one of the most delectable items EVER. shame on you guys.

Good night my wonderful friends. God Bless, be well, safe, happy and healthy. xooxo