Friday, December 31, 2010

It happened when? In 2010 (graphic...warning)





Im not even sure how to accurately convey all that went on in 2010. I often think during the times I am telling our story people must think I have one very overactive imagination. I only wish that were the case.

I'm ending this year the same as I started. Alone with the Xmas lights on, drinking hot chocolate. My baby is with her daddy right now (hopefully sleeping). My heart and thoughts are all over the place. It seems every year I say that was the most trying year. I think this year definitely wins that title. If you had told me on Dec 31 2009 that a mere six months later my daughter would undergo the biggest, most radical surgery one can have, and come out of it smiling like she didn't just have half of her brain removed I would have thought for sure you were smoking.

But, that was 2010. Surgery. So much happened this past year. But really, it will be known as the year of the surgery. The life changing, life saving, life altering, traumatizing, most radical, amazing, glorious, miraculous gift we could have ever been given. It isn't often that you get excited about having half of your childs major organ removed. But I was. I was ecstatic actually. Because she was a candidate. Sadly, many are not. So May 26 after about 6 hours Dr. Asano came out to tell us how things were going, and to show up the pictures of her hemisphere. My daughters little brain, that never even was able to develop because of her stroke. Like Shel Silverstein... a big missing piece. But we found the piece that fit in Detroit with her surgical team. We had a rough go for a few days and she ended up needing a VP shunt...which of all the things this year that has been the most problematic.

Since Oct 28 she has had 3 emergency shunt revisions. One colonized atypical staph meningitis. A UTI that grew pseudomonas. And currently, as I type, Micro at Alb Med is keeping watch over the gram positive cocci growing in pairs and rods that seem to indicate there is some variety of staph or strept infection. That is really just a small sampling of the crazy that has been this year. With only 57 minutes left of the decade, I could easily be up for hours writing about all of the goings on in 2010. But I wanted to be in bed an hour ago, so I'll wrap this up quick I think. (there is a slight chance at the 48 hour culture mark we could get admitted so I need sleep NOW)

This year has been a roller coaster. Joy of meeting new friends, new children who share the same journey as Charli, new parents who understand how frazzled I am and totally get it. Sadness at the lives lost this year.....Jakey, Brex.. my school friend Jared, Todd, most recently the week of Christmas my Uncle John. Gratitude for the amazing dr's that are involved in Charli's care...specifically her pediatrician who if I didn't have I don't know how I would function. He is my angel. I trust him more than anyone in the world, and he knows my daughter quite possibly better than I do. The neuro and nsurg team at Detroit is beyond phenomenal. And an even bigger surprise was find a neurosurgeon who was at the Med Center who not only knew what he was doing, has a kind heart and personality and an amazing amount of patience, and wonderful bedside manner. I have nothing but the best of things to say about Dr. Adamo and the neurosurg team at Albany Med. It was a blessing we found him (or landed in the ER and he happened to be on that day) because he has saved the day twice with two of her revisions.

Sadness. Lot's of sadness. Sadness over loss. Sadness over seeing my baby girl fight so hard everyday of her life. Seeing her eyes pleading with me while they try for the umpteenth time to find a line. The sheer horror I felt watching her vomit from the hydrocephalus after her surgery and the pain she was in. Sadness because my family fell apart. Not for any one reason. Many, rolled into a newly wed couple has a baby born with a massively complex medical history. That is enough to tank the most solid of marriages. Pride- in watching Larry grow this past year with Charli, seeing him get more involved...like picking out Xmas toys this year that had therapeutic value instead of just buying toys. That was huge to me. I'm so proud of who he is for her. And we are finding our way back to being friends and doing it all for her together.

Anxiety. Cuz with shunts (and seizures) comes anxiety. I've spent many a day analyzing her behavior instead of just enjoying being with her. That is something that will change in 2011. I'm going to let her be. Just be a kid. Not a kid that has a catastrophic form of epilepsy. Not the kid that had a stroke. Not the kid that is missing half of her brain. Just a kid. A kid that is going to do Kindermusik, and go to play groups, and have fun. Because Damn it she deserves it.

There is no greater thing in any day of any year since July 1 2008. That was the single most amazing (and again, terrifying, chaotic, catastrophic) day of our lives. But it was the day my life started. It was the day my mom hat was on, and it soon merged with advocate mom hat. Mom. still seems weird. I forget sometimes I am a mom because I so often function as a nurse or medical professional. But that girl. That precious little curly headed girl is the most amazing thing in my life. And I will make damn sure that this year is good to her. Because she has made my life amazing by being in it.

So, while I didn't get out all that was in my head. I feel like I can go to bed now. If we get admitted tomorrow I'll need all the sleep I can get now. Good bye 2010...I have mixed emotions about you. Let's see if 2011 will treat us right from the start.

Happy New Years everyone. Be safe, happy, and healthy...and seizure free to all.

Sunday, December 26, 2010

there is no way around it. I HATE this day.

Nothing good, I feel, will ever come from this day again. Maybe I'm being over dramatic. Whatever. This was the single most horrifying, panicked day we had ever had. The first seizure. The first of what would be thousands and thousands of seizures. Of dr's, ER trips, ambulance rides, side effect, transport method, med changes, med increases, med decreases, The Beast that took hold of my life, shook it to its core, caused more collateral damage than one could imagine, and robbed my beautiful girl of months. Months of learning, developing, playing, sleeping, eating without gagging.

I know this day is long behind us. But the scars are fresh still. The memory remains like it was yesterday. I close my eyes and can smell the ER as we waited. I remember breaking in to the hospital at 11p to bring her to the floor because we were being admitted and security tried to stop us and I essentially told them to go eff themselves because my daughter needed treatment so they could either get out of my way or I would plow thru them.

Since that fateful day, life was never the same again. In any way shape or form. My marriage has fallen apart. For reasons not specific to any one thing, just that it was too much for us as newlyweds and first time parents to deal with. We choose to deal in different ways, and those ways just don't work together. I love him, he is my best friend, he adores our daughter ,and I trust him implicitly with her. But our marriage was slain by the beast. Friendships have been slain by the beast. People you think would be around suddenly fade off into the sunset. Although in the interim you meet TONS of parents who are JUST LIKE YOU and know just what you are going thru. So I guess it's kind of a good trade off.

Life. What exactly is that. Our life consists of 19 therapies a week. At the most we have 4 or 5 a day. Not much time for anything else. And the small amount of time we do have is spent for follow up drs appointments.

Larry and I have joint custody. He gets the baby on the weekends. I have such great aspirations for the weekends. I'll clean, I'll nap, I'll go to the mall and use a gift card, I'll go visit Joyce and see the babies. I end up on the couch watching NCIS marathons.

Dating. psssh. WHAT. who has time. Who the hell in their right mind would want to get involved in the constant chaos that is me. No one sane that is for sure. And on the few occasions where I've found someone who I think maybe, just maybe, this person is the one who can handle it. They can hack my craziness. They don't mind my quirky. They are ok with me being OCD stalker about my baby. And, inevitably something happens. Most likely me being the screw up I am and never allowing my self even the smallest bit of happiness sabotages it. I don't even realize I'm doing it. I always said I would be the crazy cat lady with the big old house on the corner and sit in my rocker and the kids would throw eggs at my house at halloween.

My focus. My only focus. That sleeping beauty in her crib right now. But I do admit that it would be so nice to have someone to swoop in and save me from time to time. someone who doesn't run the first chance they get because my usual sparkling demeanor (***cough cough BULLSHIT)) hits a snag because of what ever brand of stress is being thrown at me from life. I can't smile and nod thru it all. I have to vent. I have to get pissed. I have to be angry. I need to cry. Because otherwise I would end up the emotional Mt. Vesuvius and that would be good for no one.

So today. Day that I hate. Day that never ceases to amaze me the amount of horrible shit that can happen in this day. Not just in my life, but in others. Like the new parents I heard that were on their way to the med center with a seizing baby. Just starting their journey. My heart breaks for them. And I will be here for them for anything they need.

The only thing that I did that gave me a sense of accomplishment today was I went to visit Jakey. I left an ornament on his tree. Told him we think about him all the time, and his mom and dad, and brother Ethan. I asked him to please take special care of his momma. And that Charli and I will do our best here to make sure she is ok. Being with Jake was the only time today that I had a sense of calm. A sense that it will be ok. His energy is so powerful. I will persevere thru all of this for him, and for Charli, and for Heather. Because, when it comes down to it. I have no right to bitch about anything at all.

Next year I want to do something completely crazy outlandish and fun on this day. Sean Miller is coming with me whatever I do. He has a hard time with today as well. Next year we shall start a tradition.

In the mean time. I count the many blessings I have. My friends, family, my amazing support system of moms. Most importantly my beautiful daughter. The strength I know I have, the tenacity to keep fighting and power thru this depression that is plaguing me. A family unit that was once fractured that is healing, and coming together for Charli, and to support each other which is all I've ever wanted for Charli.

54 minutes til the 27th. This day is almost done. I've survived another one. Wounded today, yes. Hurt, yes. But I will recover. I will smile because I deserve to. I will rejoice in the fact that my daughter is healthy and happy. And I will start to prepare myself for summer projects which will keep me occupied. And that is always a good thing. Distraction is good.

Farewell December 26th. I'll see you next year. Not willingly, but we'll meet again. But for now it's your time to leave. And let me carry on the rest of this year and start the new year in a new and hopefully better frame of mind.

Thursday, December 16, 2010

Take your cheer and shove it...just sayin






Before I become a total downer let me start with this... I always love being able to show off the great advances and research that is done at one of the hospitals we go to. Kudos to CHOP for it's epilepsy research!!

Now, Christmas. There was a time that I loved Christmas. Heck, I even liked shopping. Wrapping, not so much. I enjoyed the lights, and the tree, and the Xmas eve traditions my family has.

Then there were seizures.

Going back, I had a hard time with this time of year because my grandfather died at Christmas time. Then my dad had his first heart attack December 23, followed up by a fatal heart attack in January the next year. I have been pretty down on the holidays with all that. If I am honest, I knew my first Christmas as a mom was going to be hard. My 5 month old had been only months earlier diagnosed with perinatal stroke and we were just trying to come to grips with the developmental delay. SO all of my big mommy thoughts of having this wonderful big first Christmas were already not going to happen. Second, we were (are) broke. So you can only do so much spoiling. But I bought 3 different Xmas outfits (including santa outfit) and went forward with Christmas Numero uno. My family celebrates Christmas eve, Larrys celebrates Christmas Day. Works out well. Our first xmas eve the baby was off. Very crank which was not like her at all. She was miserable. I thought maybe she was teething. Christmas went the same way...cranky. Not ripping papers like I had expected. I should've known something was in the wind. Dec 26 she went to get her 6 month vax. That night with a spiked fever came her first seizure. (complex partial) she became post ictal and slept for hours. And when she woke up she almost immediately went into a cluster. And that was my first introduction to infantile spasms. We went to the ER, where they told us that she wasn't seizing because they didn't see it. and basically tried to kick us out. I flipped. We went home, and as soon as we got home she immediately went back to back clusters with probably 200 spasms. Right back we go this time with covering pedi on our side who got us direct admit to the floor. IV in her scalp at midnight, and they did NOTHING that entire time. Dr Crappy Neuro came in, sat on the other side of the room and didnt care to see my video and said sometimes kids get febrile seizures, and because she isn't seizing now you can go. I said not without a med until we get an EEG. So he placated me and gave us Phenobarb. So he sends the little girl out the door who has a CATASTROPHIC form of epilepsy with phenobarb and no EEG. Now I've started to research, spoken to my pedi who I love, and I'm nervous as hell. It looks like it has to be IS. It has to be. We were right. Dr. Almost as ignorant as the other called to confirm the worst. Infantile Spasms with hypsarrythmia. Which brings us to now. Last year was slight better, her meds had her less in a fog so she was able to appreciate the goings on a bit more. But I dread the holidays. I dread this time of year. So much has happened and I associate so much with this time of year.

And then, as if life doesn't hand us enough shit. Jake. Everyday I wait for Heather to write Jakey a letter. And I cry, and I feel numb, and I want it to all go away. My friend just buried her son. Do I really think I should be all about holiday cheer right now. Eff no. I put up our tree for Charli. and lights. But my mind is so far away from here, my body would give anything to be anywhere but here. I want Charli to have a Merry Christmas, and I want to take the pain away from Heather...and I feel lost and useless. Winter as a rule makes me miserable, but this is a new brand of miserable even for me. I wish I could close my eyes and make everyone I know and love happy, healthy, and alive. And I hate that the holidays depress me like this now. I hope someday I will get better because I don't want to be like this when she is older. I don't want to have to fake it. There has just been so much pain, and loss, and trauma with this time period it's hard not to be affected.

I honestly can't recall a time I've been this depressed in a LONG time. The last few months with all the in patient stays and surgeries, the infections, my health has been crap...I just cant take it anymore. I just want for once something, anything, to go smoothly. I know. that is asking for a lot. I just wanted you guys to know that if I seem off this is why. Jakes death has profoundly affected me, and this time of year is horrible for me in terms of associative trauma. I am in AWE of Jakes mom Heather. Her strength and ability to write her feelings so openly amazes me. She has always been my hero. That will never change. And I thank her for letting me have the opportunity to know her and Jake. Because Jake is an amazing boy who taught so many people so much. Resolve, Strength, fight, love. That's just a few things that Jake taught the world. I know I feel better knowing that he is watching over Charli. But it doesn't negate the fact that it FUCKING SUCKS that he is gone. I would do anything to bring him back for Heather and Brian, and for his big brother Ethan. But I will help to continue on his story and legacy.

I hope I can snap out of this funk soon. I'm sorry guys. I know it's miserable having to read this. I just needed to get it out.

Friday, December 10, 2010

This blog is dedicated to Jake Straughter... a beautiful life taken too soon. NOT ANOTHER MOMENT LOST TO SEIZURES!



This is Jakeys blog. His amazing, strong, beautiful mother Heather started this blog for him not too long ago. They are inspiration for me. The strength, resolve, love, patience, ability to still smile in spite of it all... it is what keeps me going. I have been on the Stroll Committee with Heather the last two years, and I consider a kindred friend. Seizure mom. And Jake. Sweet Jake. I am so thankful that you were a part of our lives, and that life allowed me to meet your amazing mom. She loves you so much. And I know how much you love her, and your family. I told Charli Thursday that she has a new angel in heaven watching over her. Listen for us.. RIP Jake


I don't really know what if anything is in my head right now. My heart is broken. The ability to form a thought or sentence seems to have left me. So I guess right now, I'll say this. My heart is broken. Reading Heathers last post to Jake.... I think I just went numb. Nothing you can say, nothing you can do will make this better. There is no making this better. They just lost their CHILD. As friends, and co seizure moms...what do we do. We sit back and we mourn this tragic loss. We figure out who to help a friend who is going to need support. I can't even imagine what they are going through right now. Nobody should have to go through this. No parent should EVER have to bury a child. The many ways of how wrong it is don't seem strong enough to point out the fact that children aren't supposed to get sick. Children don't leave. They get bigger, and different tx options, and they live. I want that for him. I know it's not possible, but I wish it was.

Jake gone too soon..... <3

Friday, November 12, 2010

All that, and a UTI, too.

Wow. I need to blog more often. I just noticed tomorrow it will be a month since my last post. I should realize that nothing in life is certain, and know how much can happen in the blink of an eye. But a lot has certainly happened since my last post (when I was advocate, strong, soldier mom) A lot has changed.

They say writing (really any art form) as expression is cathartic. Honestly it's kind of painful to write all the things down that go on in my head, which is probably why I don't. Then I just see it in black and white, as opposed to the swirling incessantly in my head. But I do admit I feel better usually once I've pounded out a post, so here goes.

All was peachy in the month of September and beginning of October. Or so I thought. I had noticed things. Things that anyone other than me probably would never notice. She's a little more cranky than usual. Her tone seems a bit more increased. Is it just me or is she tipping her head to the left a lot. She doesn't want to eat Nutrigrain Bars anymore, or yogurt melts...what's with that. She doesn't want to eat food at all. Hmm. All seemingly benign things. Individually. But add them together...

As October came to an end I noticed that her head tilt had become more obvious. She wasn't wanting the bottle as much. The day I took her to the pediatrician she was having a constant head tilt, didn't want to eat at all, and was not attending or able to look at anything for a period of time. She was having a few seconds lag time when she was looking at something. Danielle noticed almost immediately that something was wrong. Or maybe it was the horrified look of panic on my face. Dr. Brand noticed almost instantaneously. She hardly responded to him at all. It wasn't long into the appointment that a CT was recommended, and the fastest way to obtain that was to go thru the ER. A bit of urgency I think was behind his message of apology (he knows I HATE going to the AMC ER...and avoid it at all costs). So off we went. SEVERAL hours later after being in the C overflow hall, we got moved to a room. Several hours after her CT we got word that she had a right subdural hygroma and a midline shift. I knew the hygroma. WTH is a midline shift. I should've just been oblivious and not Google'd it on my phone. It all started making sense tho. The sudden over reactions to when you touch her right arm, the hypersensitivity issues, why even in the pool Tuesday night she didn't want to splash, her left sided tone was ridiculously high. A big pocket of fluid was compressing the right hemi from not only the top but had pushed the middle off to the side. It all clicked. Unfortunately for me..I was right. It was a shunt malfunction. It was hyrdro. I just didn't know how bad it actually was.

So Wednesday the 27th they went in to do the shunt revision. All was well at first. Until the valve grew staph. Localized thankfully. But staph none the less. Atypical presentation of bacterial meningitis they said. IV antibiotics were started. (which sounds like it wouldn't be that bad...but as they said in ICU to the STAT nurses when calling for another line she is a "vascular nightmare". I'm not entire sure why she seems to have the smallest vessels ever. Not sure if it is a tone/small vessel issue. All I know is that since NICU, and the countless amount of lines and scans with contrast we've had one thing has been determined...this kid has NO ACCESS. So it was nothing short of a miracle when the line that Cliff put in went in on the first shot. (They are STAT nurses, after all. Essentially the best of the best for sticks) It was another miracle that it stayed as long as it did. It was, however, also not surprising when her left foot line came out, and when they attempted to put it in her left AC it infiltrated within 6 hours. Her arm was so swollen it was hard. She couldn't bend it at all. The STAT nurses were all busy, so they brought in the best of the best on the floor. 2 tries (right foot, right arm) and nothing. So they went for the jugular vein. I thought it was pretty horrid the first night in AMC when they put a line in her head (when she was 6 months old) the line protruding from her little neck was definitely more traumatic. For all involved. She left it alone for the most part. And it stayed (by the Grace of God) til we left. Even tho we had almost lost it two times before that. So Vanco on board, we started combating our other issue. Constipation. For those of you with kiddos who have had strokes you all probably know decreased peristalsis is part of the package. So our kiddos aren't necessarily regular, and it isn't ever an easy process (at least for my kiddo). So, the main goal was seizure meds and miralax when she decided to go on food strike. From previous hospital/constipation mom experience I knew we needed an NG. Not a fan, but the only way to sneak fluids into a kid that doesn't want a bottle. So in it went. Content with the way things were I decided to wave my flag and go home for the night and sleep. Dad was on night shift. I walk in to a baby with no NG and a staph infection result. Huh. Why do I never leave the hospital... So Dr. Greek Resident decided that because he didn't know why there was an NG in place (because it had been ordered by Peds Attending nice guy) he decided it didn't need to be there. So three seizure med doses and much yelling later we put ANOTHER NG in. Can I just mention that I was already at my breaking point by now.

Flash forward a few days (9 actually) and we are seeing the light at the end of the tunnel. One week of Vanco almost coming to a close. Home in our sights. Thursday (after a poop and some bottle eating finally) I decided it would be a good time for some food and Starbucks. An hour or so later I walk in to my sleeping baby and my mom watching TV. She had scooted to the bottom of the crib, so I lowered the crib side and went to scoot her back up top. I stopped, silently stared, raised the crib side, walked into the hall and asked Heather to please come in our room for a minute. She said "is everything ok?" to which I shakily replied "Not at all". A stain had saturated the bed sheet she was on. Her head wet. Actually dripping from her suture site. CSF...all over the place. The next few hours were quite a blur of pacing and caffeine. We caught it at 8p, by 1115p she was smiling at her two favorite neurosurgeons as I walked out of the OR to go and contemplate what the hell I had done in a previous life that would warrant my child to pay so greatly. I must have pillaged towns of children and women for sure. Because how can this much possibly happen in 5 months, much less a little over a week. Around 145a Dr. A came out and sat on the chair next to me...looking very clean shaven and a bit perplexed and a lot exhausted. It was, their speculation, that while pooping a good poop, the abdominal pressure was slightly reversed or possibly blocked the shunt and the shunt malfunctioned. Pooping = spinal fluid leaking from head. That was pretty much all I heard. Sometime a little before 3a my very tired and disoriented baby came up from PACU crying. I've never seen her handle anesthesia so poorly. They said she had a freak out in PACU, and wasn't much calmer in PICU. After playing her song, finally getting a gown on her, and giving her the blankie back she fell asleep. So much for that last Vanco dose at noon on Friday and discharge on Friday afternoon. Saturday (after the cultures came back clean from second surgery on prelims) we rolled out of there. Soooo very happy to go home. Blissful almost. I finally started my hospital PTSD decompression by the beginning of the week. A bit depressed, a lot of crying, tired beyond all comprehension. Tuesday brought respite (literally). Now, I have been on probation with respite because I never use them. It's hard to leave your constantly seizing child with someone. Anyone. Much less random respite worker. Things were somewhat more stable now...so I decided ok, I'll go shop. When I walked in and saw my extremely pink faced kicking happy baby on the floor, I thought huh, this is why I never leave the house. A quick temp revealed not much of a temp.. but one to warrant a call to the peds and nsurg offices. NSurg nurse called and I could tell as soon as she took a hesitant breath before speaking we were going. So I started to pack. Kind of mindlessly. Throw some stuff in my hospital bag "in case!!" we have to stay. Not thinking I would need it. They called ahead and told them we were coming so it was right back, and nice ER 3 year resident guy from last time came in. Another quick temp revealed a rising temp now. Still not really high, but high enough for 3 year resident guy. Work up for fever of unknown origin. First thing.. tap the shunt. (I forgot to mention the shunt tap on our last hospital stay..) The first needle she rocked. She didn't even move except her eyes in the direction of Dr. Jey.. like "hey. what you doin, Willis" The second one wasn't well received. Then come the STAT nurses. Cultures needed, CBC etc. Talk of a UA. As the night progressed and talk of admission started I had "UA/UC" in my head. I think I muttered "if they did the UA I bet that'd be it" at least a dozen times. I'll try to shorten this extremely lengthy diatribe as best I can. Admitted to floor. WBC's elevated, total protein in CSF elevated (indicative of infection, however non specific) WBC's in CSF. She was only a few days post op...of 2 surgeries I kept thinking. I felt better when Dr. A said the same thing. He didn't seem convinced that this was the same bacteria we had been battling. The 48 hour culture results at 5p yesterday proved him right. They were clean. However, her urine, that we finally collected Wednesday afternoon..had growth. Not just growth..but Pseudomonas. For all you non micro peeps.. bad bacteria. Not necessarily uncommon in UTI, but not really common either. I already had my bags packed, sleeping baby in the crib unaware our walking papers were on the way..and I get socked with a UTI diagnosis that could've been found in the first several hours of our ER visit. Sigh. While I applaud the dr's for their aggressive and cautious approach, REALLY!!?? A freakin UTI. Off we went Cipro script in hand. Which brings us to now I guess. After a visit with Dr. Brand today to pick up U bags, clean catch containers and a VCUG script (to make sure ureter reflux isn't an issue so we don't have any possible surprise bugs at a later date) the baby is safely and antibiotically sound (I'm pretty sure that isn't a word) with her dad for the weekend..and here I am. Blogging about the ridiculousness that has been the last few weeks. I'm not really sure what I hoped to accomplish by unleashing this on the interwebs...but I guess I feel slightly better. Maybe not so bogged down by the time line of it all. Slightly in awe that I am actually still awake. And as usual realizing how incredible my little girl is. Her strength and determination know no bounds. She will never cease to amaze me..that much I know is certain. And I think a good portion of the neurosurg and infectious disease dr's are pretty impressed with how much of a trooper she is. I think she won a few of them over in the end. I mean, come on.. who couldn't fall under the spell of this little miracle? She is quite the mighty monkey.

Wednesday, October 13, 2010

And a sea of purple spread across a social network....

It's hard to say how it makes you feel. On one hand you are so connected to all these people, these families, soul mates, stories...each profile picture represented by a purple ribbon representing our collective. The IS bunch. On the flip side, to see the purple ribbons pop up as the day went on (Thank you to Stacy Fulkerson who started them for her son, and was kind enough to do them for all of us) it brought about a feeling of sadness. So many of us, connected, by the same devastating disease, having the same unanswered questions...the same tiresome med changes, neuro follow ups, MRI reports, VEEG's. We are a family. No doubt about it. And unfortunately in every family there are always periods of grief. We recently lost one of our angels, Brextin, who went home to be with the Lord. His mother Randi was one of the strongest voices on our IS board. She has always been a wealth of information, a tireless advocate for Brex, and still now thinks of us. Those of us out here still fighting the fight. Still searching for the miracle. Still looking for the right dose, the right drug, the right surgical procedure that could end the constant chaos that is ravaging their brains. This week is Infantile Spasms Awareness Week. Questcor (of course) is gladly sponsoring the 2nd annual celebration and awards ceremony. This brings about a bit of rage in me. As I said on facebook, if Quescor wants to do something to help the IS community then perhaps they should think about lowering the price of ACTH from nearly 30K a vial to something , oh, I don't know, maybe actually REASONABLE. Stop monopolizing the market on Acthar. Thankfully, coming down the pike we have several new anti epi's and one is a Vigabatrin type drug, with less peripheral visual side effect issue and seemingly a good 200 percent more effective than Vigab. It is during these times ...like IS awareness week, and next month being Epilepsy Awareness Month, it hits closest to home. We were one of the lucky ones. If you can call having half of your brain removed and subsequently VP Shunt. But that is luck. It is the miracle I never thought I would be happy to have. I never thought I would say Radical Brain surgery saved the day. But it did. For us. Not everyone can be a surgical candidate. Not everyone who is a surgical candidate remains seizure free. This is why in times like this, when Questcor and Lundbeck are paying attention, we need to push. We need to remind them that WE are the ones in the trenches. We are the ones fighting this fight day in day out hour after hour. They need to come up with some new meds, new interventions to help those who are not surgical candidates, who have failed almost all of the meds like we did. We need our voices to be heard. Or at least our color to be seen. So if you have a facebook page, and you are friend with a mom who has a child that suffers from Infantile Spasms (or RE, or any type of rare epileptic syndrome) Go purple. Make them take notice, that we are here, together, fighting together, and we are not going anywhere.


This week is not without sorrow, or grief. Just recently, we lost Brextin. An amazing little boy who fought the good fight along side of his amazing mom Randi.. who tirelessly advocated for him. Randi has taught many of us ways to navigate getting equipment, pushing for EI Services. Always fighting for Brex. He is now watching over all of our kiddos here, and I know he is watching over us all, a smile on his face, and so incredibly proud of his momma. So Brex, this week is for you. WE miss you. You are loved, and never forgotten. <3

















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Monday, September 20, 2010

End of summer slack off

Yup.

Not that I have ever been good about blogging before. Because I am horrible at it. I've been slacking off. A lot. It was after all the dog days of summer. And post op anatomical left hemispherectomy for those who missed it. And VP shunt placement June 8th.

It was a long ride. It was a traumatic, scary, at times heart stopping, wonderful, amazing, awesome ride. Hard to put all that together with the words "brain surgery". But I really look back on Detroit as the start of a new era. It was an amazing experience, even with all the scary crap. I will expound on all of this at a later date. For some reason I just felt like blogging. And the cheese is still sleeping. So I can.

We are coming up on 4 months post op as of this coming Sunday. 4 amazing, glorious, incredible months. Every single day since surgery has been something new. We hit the 3 month post op mark and she took off...just like Dr. C said she would. We have weight bearing, she is almost sitting independently, her attention is better, she has all sorts of new sounds, she can roll over from her back to her belly, roll weak side over strong (which we could NEVER do before). Everyday is a miracle. A miracle made possible by the gifted physicians at CHM. Not a day goes by where I don't think of them and how much I owe them. I am currently awaiting an email back from Dr. C. We saw Dr. M last week for her first discharged EEG, and according to Dr. M it showed abnormalities consistent with post op changes, no S, no discharges. WOOT. Not that I will not say the S word. I don't even like to think of it.. But it creeps in to my brain when I least expect it. The other day a toy that she used to play with all the time went off and I think I became frozen in time for a minute. As soon as I heard it memories came flooding back...things that I have been able to keep locked up since the night of May 25th. I shook it off, threw out the toy, and moved on. That's how I roll now. Move on. Always something better around the corner. Tomorrow is a new day. Miracles can and do happen. If it isn't brain surgery..I don't need to stress it. And I am working really hard to do just that. Don't stress. Enjoy all this wonderful time watching my baby explore her new world around her. With that famous crooked smile. The best thing in my life.

I heart crooked smiles.

Off I go to check for a reply from the rockstar.

xoxo

Saturday, May 29, 2010

The 411 on Room 635

Hello from Detroit!

So we are three days post op and it's been a roller coaster for sure!!

We weren't even ICU a full day, and we got moved to a general surg/ped floor
because the hospital is so full. The surgery went without any issues and was
about 7 1/2 hours long.

Since ICU we have run into a few issues. She was transfused on ICU, but her Hgb
is slowly coming back up. We have had some real drain issues. The morning in
ICU her EVD was filled with bright red blood so they went for urgent CT to see
if she had a bleed. Everything was post surg appropriate. That damn drain has
been nothing but issues!! She started vomiting in ICU, and when we got to the
floor by bed time she was vomiting " coffee grounds" so she was put on protonix
to treat for stress ulcers. Zofran was ordered as needed. With the coffee
ground issue arose another EVD issue, and what once was clearer CSF became all
blood again. So 2am urgent CT showed really nothing. Since yesterday she has
been leaking around one of her drains, presumably because a clot is in one( most
likely JP). I hear the word clot and freak because of her Factor V issues and
stroke!!! We had some BM issues as well.. She is chronically constipated from
the stroke and straining is a big issue (forgive the TMI). So ICP went nuts
after some result, and EVD went back to
bright red.

I am seeing a lot of twitchy movements, as well as a few seizure-y looking
things. We restarted her Vigab yesterday and she was started on Dilantin post
op. Every time she moves I freak because I don't know how much pain she is in,
was that a seizure or did she jus startle. Seizure waiting as you all know is
torture. And with her drains we have no EEG on sight so the plan is to stay on
the two meds an eventually add trileptal.

Currently she is getting the most and best sleep she has had post op. Yesterday
had to be exhausting for her. We had her out of bed twice so they could change
her bed ( she freaks out when you try to log roll her) so it was just easier
(and of course I wanted my baby!!). It brought back NICU all over again. I
was so afraid to touch her, I had a pillow under my arm, and she was so
uncomfortable at first. Then next thing you know she is pulling herself up from
a reclined position in my lap to sit up. Something she doesn't even really do
on good days! So she sat up looked around and started babbling .. Getting back
to herself. Then she promptly fell asleep. :) I love snuggles, even if I
couldn't snuggle her too right for fear of hurting her.

Neurosurg just popped in, saw she was sleeping and said they will be back for
the JP.

I think the night we were moved from ICU to the 6th floor the hospital
exhaustion/post traumatic hospital stress started to hit. Today I'm more
exhausted than surgery day. I have been doing rather well in the keeping it
together part. I lost it in ICU when I first saw her throw up and the pain she
was in. Yesterday she had a coughing spell and the look of terror and pain on
her face will forever be embedded in my
mind. So much so that I have begun second guessing myself ( or I was last
night). I texted Larry and asked him if I made a mistake by going a head with
surgery. He said this is all temporary and in the long run will be worth it.
After the look on her face yesterday I have doubt in the back of my mind.
Logical part of me knows we had to do it, but mommy part can't rationalize all
the pain she is in and how I put her there.

But enough negativity.. Today she is getting much needed rest, and I am grateful
for that. One more tube comes out today so that is great. And above all else..
I got a smile before they drew her six am labs. A real, big, toothy, very
lopsided now smile. What my heart has been longing for and needing!!

So we still have a few days with the EVD and then I am
not sure where we go from there. I kind of hope to be here doin in pt rehab,
but part of me wants to go home. Her EI therapists miss her so much, and home is
so quiet.. But pretty content out here. I'd move if I could. I love Dr
Chugani, Dr Asano, Dr Sood.. Some of the nurses have been outstanding !!
Others.. Eh..

And that is where we are at right now.

Thursday, May 27, 2010

Day 2 coming to a close.....

Sorry I've been off the Grid today guys.  Been in ICU most of the dealing with stuff, now on the floor so I can use my cell in her room.  Drainage issue is getting better, CSF is looking less bloody... Still having some vomit issues, but Zofran has been ordered already.  She just got Morphine a little while ago so she is resting comfortably.  Spiked a temp of 102 but it's back down on it's own to 100.5.

  I'm taking first overnight shift in case the docs need history etc, then I think we are going to alternate between the four of us.  So currently things are stable, still watching EVD drainage and temp, as well as for seizures.  Hard to tell with all the startling going on.  Dr C and Dr A stopped in as we were moving up to 6, plan is to keep Dilantin in house, reintroduce vigab when she starts taking PO anything ( ng has been mentioned if need be) then she will be on vigab and trileptal, with the plan to wean vigab over the next several months based off of EEG's.  I love my neuros, they are the super duo.

  I had the most traumatic experience yet earlier when i first saw her throw up, she reached up with her left hand and grabbed her bandages and let out the most horrific scream of pain.  I thought I was going to pass out.  I have never heard her scream like that. I immediately burst into tears.    I keep begging them to give her a suppository because I'm afraid if she tries to poop her ICP is going to be off the charts!!!  I've told everyone so far.  Her ICP is a big worry for me... Everytime she coughs ( or vomits) I freak.  She is sleeping well with occasional little sleepy moan noises.  

It's been a pretty long exhausting day.... More so than yesterday I think ( or yesterday is just catching up). Between the drainage scare, CT, and constipation issue I'm pretty pooped (ha. No pun). Ruth, one of Dr Chuganis nurses came down to go over some research paperwork with me and said " has anyone told you how good she looks?". We were like no.  She said " she looks really good. Granted, tomorrow we may have more swelling, but she looks great for immediately post op". Yay!!  My girl kicks surgical ass.  

So we have our own room which is nice, but we are on the 6th floor instead of 5th... And it's fairly noisy up here.  We were told to just let her do her own thing, don't try and wake her up or over stim her as the brain is still traumatized and learning to adjust.  So noisy floor doesn't thrill me too much but I've loved her nurses down here so far, and the pedi resident.  I called to report home to our pedi but missed his call at the end of his day because we were just about to leave ICU.  So he left me his cell in case I need him tonight.  And Dr C said he was going to pop in tomorrow morning and leave his cell because he is going away and " it's a long weekend" and if we need him he wants us to have his cell.  Have I mentioned I think I have the greatest drs in the world.  Dr Asano was a neurosurgeon in Japan, now he does more research here (he is a PhD and a freakin genius) he works very closely with Dr Chugani and is conducting a few studies right now.

I finally ventured out in the tunnell tonight and went to Wendys.  I wasn't that impressed.  And so much for not stress eating.  The executive chef at the Marriott where we are staying whipped up some chocolate mousse - y hazlenutty yumminess just for us because our room service angel Kamal and his manager Michele love the baby and have been ao incredibly kind to us.  They are incredible at the Ren Center Marriott.. I highly reccomend if coming to Detroit staying there.. It's well worth the money!!  So I think I blew my ww points for the month with thAt chocolate confection but it was worth it.

I'm dragging ass right now.  I don't want to go to bed cuz it's so early, but I'm really beat and really bored.  I can't get the tv to work at all so it's stuck on ESPN.  Ugh.  And I can't turn it off.  Oh well.  If that's all I have to complain about then it's a good night.

So I'll say adios for now.  I promise I'll fb update more tomorrow since we are no longer in ICU. Since froggie joined her in her new roo
she has picked him up and was whipping him around like she loves to do. So that is a very promising sign!!!

Xoxo  

Wednesday, May 26, 2010

Dr Asano just stopped in, surgery is almost over, no major complications... we saw a picture he took of the hemisphere... Amazing. The whole middle area was missing. Dr Sood should be down about 430 to talk with us. Not sure if she needed a transfusion or not. And I had an amazing wonderful surprise! A lab mom who was in Detroit popped in to see us! My mom and I were blown away... She brought flowers ad yummy Italian pastries. Saratoga Hospital Lab you guys are the best!!! Xozoxox. Everyone just went to grab lunch... I'm kind of hanging by myself still trying to absorb. We probably won't get to see her til 630 or 7 when she gets to ICU. It's almost over (this part at least) I can't believe how fast it's actually gone by. I can't believe it's almost 4. I can't believe I just saw my childs brain. But I had to. I had to see for myself. Something that will never leave my memory.... But I'll never forget how that impacted the last year and a half. It's amazing how fast the day has gone. I was so worried about what I would do, how would I be during the wait.. but aside from some occasional tears ( and LOTS when I kisses her goodbye and watches as Larry carried her in back). I'm ok. Maybe cuz I'm
in denial, or compartmentalizing like usual.. or maybe it's the complete faith I have in her drs... But I'm ok. I'm sure when I see her poor swollen face I'll lose it.. But right now I'm ok. And ok isn't bad. I'm ok with ok.

Tuesday, May 25, 2010

Not just Hockeytown, it's where the man has all the power

No... I'm not talking about God, although technically he is the man with all the power usually. But yesterday I met God, in the form of a miracle worker neurosurgeon named Dr Sood. He is my God, because tomorrow my childs life will literally be in his hands. He has the power to change the course of all of our lives. To drastically change Charlis. From seizures all day long... Which have transitioned into prolonged tonics that scare her and she cries after them... To what he told us yesterday..."95% chance for seizure freedom". 95%. That's right... Ninety-five freakin percent. Seizure freedom. The best words in the world. Words that I dreamed of since I heard the words " she has hypsarrythmia with infantile spasms".

I have met a lot of Dr's in my day. I worked for some of the best pulmonary and critical care dr's in our area (probably anywhere). I have bumped heads with ER docs drawing bloods, run into cardio guys in ICU, had docs pop in the lab to read cultures or gram stains or whatever. I have met the most amazing pediatric dr's since Charli was born. Her pedi is a gift from God I am certain. Her cardiologist is wonderful. All of her neuros are great. But here, in Detroit, I think I may have found the two men who will undoubtedly be changing my daughters life for the better, and that my eternal gratitude will not be enough to ever thank them... For giving us a chance.. For giving HER a chance.. At a life with no seizures, no meds someday. A chance to sit, stand, walk, talk ( which Dr C says she will be doing more of 6 months post surg).

I've met a lot of dr's, and admired many, and disliked many, and there a few who if not for them I wouldn't be who I am, have the knowledge I do.. Which has helped me help my daughter. Never have I met dr's like these two before. Maybe because I hold them in such high regard because they are the ones who are about to shape my daughters life into a life with 95% chance no seizures. Dr C I knew a little before I met him. We had exchanged a few emails before we came out here. But Dr Sood. No idea what to expect. He is a neuro surgeon for Gods sake. Specialist. Top of his game. In my experience surgeons are rather cut and dry ( bad pun) kind of no nonsense... Get in get out let's get to the next case. Dr Sood walked in and this kind, gentle man said hello to Charlotte and began asking me questions about her history. Then he started discussing surgery. 6-8 hours probably, unless Thebes is an issue or she needs a transfusion then it could be more like 10. " did you see the MRI" he asked me. I replied " the DTI? no, Dr Chugani had not seen it when I saw him" he said " I will show you" so we started talking about surgery again. 95% chance of seizure freedom. And not cocky, like surgeons can be. He (and Dr C) have a confidence about them that is contagious. It's magical. I wasn't nervous, or scared talking to him. I felt calm, confident, optimistic. We talked about the DTI, and her right sided motor functions. He asked me how her movement was... I told him what she was able to do. He waved his hand and said " I'm not worried at all about her leg... That will be fine and all come back. Her arm, she can lift it?" I said yes. He said "that will come back as well". Her hand.... Different story. She has no volitional control over her hand. No dexterity. Never has. But he said "sometimes with surgery you can gain movement. It's very hard to say, but there are cases where it has happened." ok once again good news.

He mentioned that there is always a possibility with surgery that at the site a clot can form. My biggest fear. Charli is Factor V Leiden positive.. Meaning she is prone to clots (hypercoaguable) he said if that were to happen then they would go back in and remove it. He also said in all of his surgeries ( and I don't know his numbers) but he said it is very rare. We spoke about my appointment with heme an what Dr Chitlur said...and agreed no intervention was needed right now.

We spoke about some other stuff.. Mostly a blur because at this point my brain was spinning, tears already in my eyes.. Looking at my beautiful girl kicking away on the exam table.. Knowing in two days we are about to do the hardest most horrible thing ever but also the best and most wonderful thing ever. Because of two Dr's in Detroit who have made it their lifes work to help make miracles happen. Now I know the odds, I know the numbers game... Nothing is ever a gaurantee, but 95%.. how could I not be excited, optimistic . Then he said he'd be right back. When he returned he said ". Come on mom ... Dad you too." He walked us around the corner to a screen with my babies brain on it. I've seen her MRI's before, and her PET. But never a scan this clear. Immediately I saw the two areas.. The frontal and occipital areas that are hypometabolic on her PET. As clear as day. And I saw the black. The darkness that was once healthy tissue, that was destroyed by her stroke. ( middle cerebral artery infarction if you want to be specific). Those two little areas, trying to grow and develop... With no presence of middle lobe tissue.... They became irritable. Hyperexcitable. Seizures. Larry asked something about what he was looking at, and not thinking I just kind of blurted out " no, that's her ventricle , the rest is ex vacuo" (fluid from cell loss) Dr Sood looked at me and said " nice! You've certainly done your homework". Kind of nice coming from a famous surgeon. Looking at her MRI was once again clarification ...like seeing her PET that this is the right thing to do. I started getting teary again becaue he also said "and here is her right hemisphere, normal.". We've never head that about her right side before. Buy you could see it. No darkness. A few little white areas, but no darkness. Normal. Dr sood feels that most likely because there is no presence of motor tracts on the left hemisphere her right has picked her motor. Which means we may see less impairment. MAYBE. But it will be easier for her to regain function because of this. So as I tried to
Take this all in, head spinning, teary blob, Dr Sood put his arm around me and gave me a hug and said "it's going to be alright mom, she's going to be great". I don't think I remember much after that. I don't really need to. Because it is going to be alright. She is great, and she will be better than great after this. She will be my beautiful amazing little fighter, seizure free.. Ready to take on recovery and therapy...ready to take on the world. All because a Dr in Detroit answered a desperate moms email, and set in motion the next chapter of our lives... Which wouldn't be possible if not for Detroit Medical Center/ Detroit Childrens, Dr Chugani and Dr Sood. Miracles do happen, and Detroit is the Rock City... Rockstar dr's and rockstar hospital staff. Detroit for all of it's flaws, will forever be my favorite place in the world.

Saturday, May 15, 2010

I'm not sure what Garth Brooks was talking about....

Not that I haven't always had wonderful friends, and know that they have always had my back. But these last few weeks, these last few days in particular...I couldn't be more blessed than to know all of the wonderful people I know in life. From my lab moms, to the teachers at Slingerlands, my primary care dr, his nurse and office staff, friends I have known almost all of my life, to friends I have met who have become family to me since I started this journey called mommyhood. I don't say it enough...I don't write it enough...but you are ALL truly amazing. Each of you in your own way has touched my life, my childs life, or my family in a way that is truly wonderful. Some of you pop in from time to time to say hi, and check up on us. Some of you I talk to daily (or try to...I'm such a slacker lately) and listen while I vent and whine about the latest chaotic thing to go on in life. This is going to sound corny (but it's how my brain works) If I had to think of you all...I picture it like this in my head...it's either one of two scenarios....it's the community outpouring saying "move that bus" as Ty shows a family their new life... or it's the Verizon dude with the network behind him. Because I as hit the thruway and head out of NY that is how I feel...that is the strength and the power I feel behind me. I have never had this kind of outpouring of support before. Frankly a lot of times it's so overwhelming to me I don't know how to handle it. But it's the unity, the strength, the kindness and caring keeping me up right now, making me able to walk my path toward Detroit. So if I mutter "nurse, move those bandages" they'll probably think I'm insane..but so be it. Because this is the start of a new chapter, a new life for Charli... and all of you are a part of it.

So I don't know what Garth was talking about..friends in low places...because from the way I see it.. you were all sent from above.

I hope you ALL know how much I love you.

Friday, May 14, 2010

Hemi's have more power.


So, here I sit, yet again procrastinating my packing to leave Sunday morning for Detroit, for what will be the most life changing event ever. Her's a little recap just in case you've missed the last 22 months.

July 1 2008 after a hell of a labor and urgent C section the world welcomed my little angel Charlotte Hayes Gill. Within a few hours she was in the NICU with a pulmonary hemorrhage, on a vent, and having what they thought were seizures. Subsequent EEG's would show (first, little to no normal brain activity and then marked improvement but still many abnormalities and slowing). But no seizures. It was determined by MRI July 8 that Charlotte had a bi lateral middle cerebral artery infarct (big words for stroke). After reeling from the devastation that our baby had suffered a stroke, we began to settle in to life a bit.

Not for long. The day after Christmas Charli received her 6 month vaccinations and hours later went into a complex partial seizure, became post ictal, and upon waking up started what would be the first of what I can only imagine as thousands of spasms by now. At the end of that month my husband Larry had a spontaneous right carotid artery dissection and also had a stroke. Needless to say my family keeps me on my toes. EEG on Charli on January 7th revealed what I knew in the pit of my stomach all along. Infantile Spams with hypsarrythmia. A rare, catastrophic, devastating form of epilepsy.

Since January 2009 we've tried Phenobarb, Depekene, Zonegran, Topomax, ACTH, Keppra, Vigabatrin , Klonopin (her three current meds). During the past year we have had numerous trips to the ER via ambulance because of prolonged clusters of spasms, Generalized Tonic Clonic seizures, Status Epilepticus (or Status) and a plethora of other things including work ups for vascular anomalies because of bi lateral discoloration in her legs in the dependent sitting position, Pulmonary follow ups for R lower lobe atelectasis with a sub pleural bleb, Cardiology follow ups for a functional heart murmur, and for what was seen on a thoracic MRA as a possible aortic dissection where we didn't know for 18 LONG agonizing hours in the ER if she was going to go at any minute. We still haven't quite cleared all of that up, but it wasn't a dissection thankfully.

We've been to Philly for stroke follow up, Boston for eyes, NYU for seizures, and now we are headed what I refer to as home...to Detroit. To be in the hands of Dr Chugani and Dr. Sood, and for what will be the beginning of the best next chapter in Charli's life. After failing so many meds, and countless amount of research hours I've put in and mommy networking (thanks D ) ;) We landed ourselves in the Detroit Medical Center....home to Detroit Childrens hospital. After meeting with Dr C (or the Rockstar as we call him in the IS world) and Dr Velagabhanti (his fellow whom I ADORE) and going over VEEG results and results of her PET scan done there...it was determined that she is a perfect surgical candidate. Her stroke left her with basically little to no activity on her left side...except for two hypometabolic areas in her frontal and occipital lobes. Dr C thinks these are seizure culprits and are not allowing the right hemisphere to full take over the left side functions. We know that her right side has in fact taken over left side functions because she has speech (jargoning, babbling, 3 words...with maybe a forth on its way TRACEY!!) For a child with no language area (Broca's and Weirnekes) that is pretty damn impressive.

So, the plan. Monday we see Hematology because she needs to be followed because she is Factor V Leiden positive (which means she is hypercoaguable) and she may need coag therapy. Tuesday we have a new MRI Diffusion Tensor Imaging done to look more closely at the motor tracts in the left hemi to see if there is any activity. Wednesday with meet with Dr. C. Thur and Fri I think I may either sleep or drink myself into oblivion. Kidding. We might take in the zoo if the weather is kind to us. (open air good, closed contained environment bad!!) Then Monday the 24th we meet Dr Sood for the first time and have our Neuro Surg consult. Then the big day. Wednesday, May 26th. I kind of peeked ahead in a prayer book I got from a friend of my moms...and that days psalm is John 10:11-18 I am the good shepherd. The good shepherd lays down his life for the sheep. Lord Jesus, thank you for being my Good Shepherd to watch over me and give me what I need most. Amen God gave me what I needed most in life. My reason to live, breathe, fight, smile, love, laugh. My daughter. He also gave me a chance to meet people along my journey who have become kindred spirits, really family to me...who share my fears, inner most dark thoughts, joys, sorrows, tears, smiles. He gave me my daughter because she needed me. And I needed her. And I have stopped at nothing to get her the best care since the day she was born...and I will continue to do so for the rest of my life. I know Charli is an angel among us. You can see it in her eyes, the way they twinkle. The way she scrunches up her nose and smiles. The way she rolls over and throws her strong arm around my next and gives me squeezies (which I think is her learning how to hug). She is my reason for living. She was my path chosen and laid out before me. And I gladly walk this path. I might stumble, and fall, and lag behind at times feeling sorry for myself, but the light at the end of the tunnel is coming. So I will walk strongly, my head held high, carrying my daughter into the pre op room, knowing that when she goes away it's going to kill me, but when she comes back my little girl will be better than ever. I know this to be true, because I have so many of you out there praying for us, pulling for us, and I have more faith in my daughter than anything that she will come out kicking IS ass.

These last few months have been hell. I am not going to lie. As some of you know my husband and I have split up, but we are bonded as a team to fight for Charli and her well being. Unfortunately stress from medical crisis after medical crisis takes a toll on a marriage. It's been a roller coaster of emotions, illness, dr's appointments, traveling, lost cats, adopting epileptic dogs, cars breaking..you name it, it's happened. But this Sunday, as I drive in to Detroit (rollin up listening to Eminem of course) I know that Detroit will be the place that miracles happen. I've seen it, I know it to be true, and we will be among those miracles. So for those of you who pray...please continue to say prayers for Charli...to come thru her surgery, to have strength to recover quickly, for the seizure monster to be slayed and gone forever. And please pray for her family, to have the strength to wait the agonizing long hours in that surgical waiting room, to find some peace in knowing that not only is she in the hands of 2 brilliant dr's, but God is protecting his little lamb. To not get sick on the dozens of Bigbys coffee's I intend to drink (had to make ya'll smile!!) And for those of you who dont pray, maybe just think of that day. As you go about your day, and see the sun shining, or a butterfly, or a beautiful flower, think of my beautiful daughter..and wish her well.

I hope you know how much I love all of you. You are all amazing, I don't know what I would do without some of you (HEATHER, JEN, TARA, DANIELLE, AMY) so many people to list...who mean so much, and are in my heart forever...because of a common bond we all share in one way or another. We are moms (and dads) we love our kids. And we fight. Always. For them. For all of them.

I intend on making regular fb updates, as well as trying to update my blog from out there...so stay tuned. I'm sure you'll get some good five hour energy ramblings from me in the next few days ;o)
HOPE in one hemisphere
Post Surgery Hat Fashion Show

Monday, May 3, 2010

23 days. But who's counting


It would seem like there should be another way of dealing with time in a situation like this. Instead of just sitting and letting time win out day after day. Making it so we are that much more closer to leaving, to a week of pre surg appointments, to meeting with neuro surg and setting up a game plan (if that is possible) It doesn't seem that time should be able to taunt one so much. My biggest issue with time is that there is never enough of it, and sometimes there is far too much to even be able to comprehend. I don't know for the life of me what I am going to do. How do I go downstairs and order a coffee (a really GOOD coffee mind you) but not have it looming over me that my child is upstairs in the OR right now, and they are removing HALF of her beautiful little brain. So maybe it doesnt work the way it should. I get that. It's causing her seizures most likely. But it is still her. It's her brain,her beautiful little brain. How do I sit and wait for them to come out and tell me hourly updates while they cut into my babies skull. My baby that I grew in my belly, and tried so hard for her to have the best pregnancy, and to be healthy. How do Iwait for that dr to come out of the OR and do the family talk thing. I'm losing it her. I need to have a plan. Bigbys for coffee, phone,listen to music, just sit and look out the window. My child is my life. She is everything to me. She is the single , by far, best thing I have ever done in my life. She is my everything. My hope, my inspiration, my love bug, she is everything to me. Nothing means more to mean that the health of that child. and Whatever we have to do to get her well, that is what we will do. I love her that much that I will put aside fears and go into this as hopeful and positive as I can be. Because I know my girl is strong. She fights ..like her momma. I know she will kick some serious brain surgery seizure fighting ass. I just hope her momma can get thru the waiting without collapsing at the end of the day.