Sunday, April 17, 2011

Detroit 1-8-7 (well, ok, not really, but we like to pretend)

This is your baby. This is your baby burrito. This is your baby burrito with EEG leads and VEP goggles on. This is also what a CLEAN (outside of the left hemi schtuff) EEG looks like. Yup. That's right, you heard me. Clean. As in, almost 11 months know, those things. The things that we were having HUNDREDS of a day, that knocked my girl on her butt, that suppressed all her little brain wanted to learn but couldn't. This is what removing half of your brain will do for you. Dramatic, eh?

So, as you can tell we had a recent visit to our Angels in Detroit. Where we once again got bundled up and sat in front of the video monitor for what was supposed to be a 23 hour VEEG. Charli however decided that at 1am she had enough and they had enough info and ripped her leads off. And the tech wisely decided to not attempt to re attach the leads. Im sure someone would've gotten bit. Sure of it. So Monday at 10a we were hooked up, and came off at 1am Tuesday morning. Dr. Sood and the gang came in on rounds for consult (asked by Sarah very nicely several times) because of the fluid issues we have been having. Charli was awake this time and showed some of her stuff (only a little bit) Previously Katie and Trish had come in and she was sound asleep. Everyone wanted to see her and have her show off her talents. Dr. Sood ordered an ultrasound of her tummy to rule out fluid off to Radiology we went. US was neg, so we were out of the Ronald McDonald House to be back the next day for our appointment with the Rock Star and the junior Rock Star Kevin. OH. Let me back up a bit. Monday when we were checking in to EEG Kevin came walking thru and immediately came out to say hello and give hugs. He knocked me on my ass when he sat down and said "whatever happened with her sinus venous thrombosis?" My doubt is that he had just been reading her chart. My belief is he is just that good. How he remembered that is beyond me. But it floored me, and reminded me of yet another reason WHY I LOVE DETROIT SO MUCH. The care and concern and attention to detail that is shown by ALL of her medical team is astounding. So we somehow started talking about her last eye exam (and the disaster that it was) so Kevin hops up, and goes in the back, comes back to us, and says when she gets disconnected tomorrow we'll do a VEP. HELLO. Do we know how long it takes to get a VEP in Boston? ANNND not only did they do a VEP, they did an ERG as well. So I don't have to get back to Boston til May now. EAT THAT ACCREDO!! Seriously, these are tests that we fight over. There are only so many spots on the ONE Thursday a month they do them and it's not an easy feat to get scheduled. And Kevin (Dr. K) goes and gets it set up like *snap* that.

So on to Wednesday, our appointment with Dr. Chugani and Dr. K. (Sharief was out of town, so we missed him this trip) :( We did see Dr. Asano tho!! Dr. K comes in before he sits tells me that the EEG was clean (outside of the slowing from the left hemi, because, well..there isn't that will always be there) but there were no recorded episodes or spikes or discharges. YAY! I was dreading the results for some reason. I don't know why. I always have a freak out moment right before getting EEG results. Because I know they can change in an instant. We even discussed (once Dr. C came in) how prone she is to focal and partials because of the shunt. (and given the possible focal activity during her second revision and a few weeks ago I don't doubt that for a minute we could be faced with a med change at some point) But for now I celebrate our clean EEG, and the fact that my girl is doing AMAZING. She was VERY cranky and had a meltdown in the appointment, but was quiet long enough for Dr. C to look at her, and assess her a little bit. He was very happy with her progress, and said that if not for the revisions we probably would be farther along. He said, confidently, "She will walk. She will. probably soon" He also said "she will talk" If Dr. Chugani says something with confidence, in that manner that he has, sitting back after pondering for a few moments, I know without a doubt it will happen. He told me that pre op. "she will be fine. She will progress. She most likely will not have another seizure" If he speaks, I listen. We had a fabulous conversation about a possible new treatment to reverse the vision loss from a hemi being done on monkeys right now, albeit a very risky surgical procedure. Dr. Chugani is in the process of researching a med that could produce the same results. He has some of his older kids in the study. He said maybe Charli could be in it as she ages. Talk about cutting edge.

There was some concern about the fisting of her right hand and indwelling thumb. Dr. C had talked about a tendon release surgery before she had her hemi to happen sometime down the line. Kevin had looked at her hand when we were sitting in the waiting room when we first bumped into him. We actually bumped into Dr. C in the elevator when we were going up to 5West for the EEG Monday morning. The first thing he did when he saw her was pick up her right hand and look at it after he said hi to us. So a conversation started about rehab, and physiatrists (and the lack there of around here of pedi ones...much like neuros) and Kevin asked if she had ever seen anyone before. I said no, she saw Dr. Chinarian when we were deciding on inpatient rehab vs going home, but she has never actually been to a dr of physical medicine. So he says "hold on" and leaves the room. Comes back and says "I had to pull some serious strings, but I got you an appointment with Dr. Pelshaw for tomorrow morning." WHAT. What neurologist sets up appointments? Ours. That's who. I laughed later at the thought of Nichter even suggesting she see a rehab dr much less attempting to get her an appointment. There is the difference between AMC and CHM. Dr. Adamo would do it. He is different. He is special, and has a Childrens Hospital special quality to him. But the rest of AMC...I think not. We are lucky enough to have dr's that not only care but are proactive and thoughtful. Dr's that want to see their patients get the BEST OF EVERYTHING. Including physical medicine. So we met with Dr. Pelshaw Thursday morning...who is an amazing person, kind and considerate for seeing us first thing before his day even began (when he had to see patients then go off campus to another location to see patients) Dr. P was very impressed with her ROM, even tho her right hamstring is tight, her heel cord tone is good, supination of the right arm is good (worse on the left but we are all aware of that on her team at home) He asked what therapies Charli was receiving. I rattled off her list and her frequencies and he stopped and looked at me and said "you are quite the advocate. That is WAY more than most of our kids get here" I shrugged and replied, "nothing but the best, that is why we are here". So the plan is to do Botox in her right hand by her thumb in her palm. ANNND we have an appointment MAY 5th!!! That means back to Detroit in a few weeks! and this is only made possible because of Dr.K. I know for a FACT that would NEVER EVER happen at AMC. We are lucky to be listened to at Albany Med. The docs at CHM make us feel like Charli is the only patient they have that's how devoted they are to her and her care. I honestly, truly, can NOT say enough about CHM and the dr's that are part of Charli's care.

I wish I could accurately convey my thanks and gratitude....and I'll never be able to...for as long as I live. But this smile ------> over here, that smile...that is my way of showing them all they have done for us, and how they changed my little girls life. Because everyday is truly a gift. Everyday is miracle. A blessing. Everyday this is possible because of CHM.

I love you Detroit, and all of CHM. And my favorites. You know who are you...... :)

Saturday, April 9, 2011

Hello Detroit my old friend

Currently I'm still in Delmar, sippin on coffee listening to Mumford and Sons Pandora, waiting on my mom and my baby to come home.

This is our first trip out to Detroit since our surgery. It makes me a little nervous I have to admit. I've seen some suspicious activity in the last few weeks so this EEG is making me a wreck. (not that they don't always) but I'm praying there is nothing going on. Her shunt is still having the fluid issues, so I know that could become an issue at some point.

I'm also excited to see all of the WONDERFUL people and her amazing medical team. I can't wait for them to see her, and see the amazing progress she has made. Charli couldn't hold her own bottle, sit up, barely hold her head up..much less talk when she had surgery! She also had little hair then, so EEG glue oughta be a ton of fun now. UGH. I hope they are all as amazed an impressed as we all are with her. It's because of her strength and resilience, but because of them she is able to do all of these things. They gave her this amazing opportunity. And I don't know how I will ever put in to words my thanks and gratitude. I think about surgery and close my eyes and can feel the chair underneath me in the waiting room, the bouncing non stop of my leg, cranking All That Remains trying to lose myself in the music, with absolutely no idea what was going to happen. Would she be the same when she woke up? Would she have a different personality. Would her smile go away... will she lose what she could do with her right side. Will it even work, or will we still see them. When he said give it a few months and you'll see her take off progression wise, is that true? I'm tearing up now thinking of all of the doubt and unknowns I had that 7 1/2 hours. When she smiled in ICU when she came out of her anesthesia some of the doubt melted away. I questioned so many times was I doing the right thing by letting her have the surgery. She's going to live the rest of her life with half of a brain. Could I do that to her? Her vision...what happens when you take out half of a brain. So many times I thought maybe we shouldn't, I should stop this. But they knew. They saw it in her, and since her hemi I've seen the amazing other miracle hemi kids and their amazing stories, and my amazing miracle hemi kid writing her own amazing story. They knew that once they removed those pesky parts that were left in the left hemisphere she would be ok. She would stop being ravaged by hundreds of seizures a day, stop being a guinea pig with meds. They knew that this was her miracle. They knew that this was her chance. And even tho I trusted them with all of my heart and soul the fear and doubt was still there. I love these dr's with everything I have, but that fear, the demon that never sleeps, kept harassing me..despite how loud I'd turn up my ipod. "I will not fall, I will not fail." over and over. I couldn't. I couldn't give in to the fear. I wouldn't. I didn't. Because if she didn't, I wouldn't. And when Dr. Sood hugged me and said "It's all going to be alright, you'll see" I knew... these dr's know, they see it in her, they see the potential if only the seizure monster would go away and let her brain rest, and learn, and take in the world.

For those of you questioning surgery, I feel your pain. But I can honestly say it is the single most important, best decision I have ever made. Not every outcome is the same obviously. (like us needing the shunt) but if you or your kiddo is a candidate, I urge you to consider every possibility and outcome if that surgery works. Because it is a life changer. One that will live with you everyday, and one that will bring you amazing gifts and miracle days. It's not easy, it's not all flowers and rainbows...but with my heart and soul I tell you it's worth it. HOPE in one Hemisphere. It exists. It happens. There are many wonderful, beautiful adorable stories and pictures to prove it. Miracles happen. Everyday, everywhere, in everything. In my case, it happened in Detroit. So for me, my favorite place in the world is Detroit. It always will be.

So I'm going to shower, put my miracle baby in the car, crank the tunes, and make the 10 hour drive to the city of Miracles, and proudly show the dr's at Childrens one of their success stories. And thank them (again) for the most amazing gift I've ever gotten.

I <3 Detroit.

Tuesday, April 5, 2011

Denial and the blow I never wanted to acknowledge happened today....

We had TVI today as usual, but she was at a conference over the weekend. We are due to attempt to get in to Perkins School for the Blind for better visual acuity testing, but now they aren't open until FALL!!!! for scheduling. That really pissed me off since I've been trying for months, and my TVI mentioned to the person doing the conference that we have been trying to get her in for a while. So while she was there she learned a basic acuity exam that will give us a ballpark idea of what she is seeing. It was a long wooden dowel rod with a mini koosh ball hanging off of it. While I was in front of her it was introduced in to her visual fields and we noted when she saw it. Left side she saw it peripherally. from the top it took until about almost midline for her to see. the right, she didn't see it. It crossed over midline. :( So as near as we can tell she doesn't see with that side. Honestly it hasn't hit me yet. I expected it, I knew it , but to see it be so dramatic...was just heartbreaking. But my TVI reminded me (and she is right) about how well she has compensated for her vision and that you can't even tell she has a vision defecit. And according to her last ERG her developmental vision is still improving, so we can only speculate that she compensated for her vision loss from her stroke, not her surgery and that is why she doesn't show the typical signs of CVI/vision loss. It was just a major blow on an already crappy day. I guess I knew it all along, I just never acknowledged it. it was like her stroke in the beginning, if I didn't acknowledge it then it wasn't there..or at least not as bad. sigh. sometimes I hate testing.

Monday, April 4, 2011

New kicks and kickin butt.

Well, let's start with the new kicks. I bought new shoes (again) in the hopes that she might ACTUALLY keep them on. My child hates things on her feet. I don't know how she hasn't inherited my love of shoe gene, but she hates them. Hopefully these she can't Houdini out of. She kept her AFO/SMO and sneaks on thru PT and Horse Tx today.... which brings me to kickin butt...

We have to be at the barn at 3. It was about quarter to 2 and I was packing up her stuff to get her going (it takes me like 30-35 min to get there) and the phone rings. It's the Center for Disability. Melissa. The secretary. "I just wanted to let you know that Charlotte can't go to Hippotherapy today because the treatment plan Liz wrote hasn't been signed off on by our dr". I was like, so... why is that our fault. She started explaining there was nothing they could do, the dr was gone, it should be ready next week. I was like, that's fine, except she will miss next week because she is in Detroit, and has missed the last 2 sessions because she was hospitalized and sick. She will not be missing today. So she is hemming and hawing and telling me there is nothing she can do. I said fax it to the dr. "It's a computerized system" I said "Ok, email it". she said "well...I don't think we can do that. I'm just calling to tell you, that is what I'm in charge of." So I said "ok then, let me talk to who is in charge of you" so she gets all pissy and finally gets (of all people) a Charlotte on the phone. Who is very sweet. Unlike Melissa. I explain the situation and how I'm NOT a happy camper, and I realize it's not there fault the dr didn't sign off on it, but isn't there a dr in the building that can sign it? Every missed session is a missed opportunity for us to get her on her feet. So at first she was like there is nothing I can do, I promise it will be ready next I give her the we were just in the hospital and she needs this therapy and she'll miss a whole week of therapies next week sob story and she said, "let me call you back in 5 minutes". Meanwhile I have the CPSE Chairperson calling, who has now called 3 times..lord knows what she wants, I just didn't have the time or patience to deal with her today. So Charlotte calls back and didn't sound too enthused...and she TOTALLY psyched me out..she said "I got it signed!!" I was like OMG YOU ARE THE BEST!!! I don't think she knew what to do with herself because I was paying her so many compliments. So off to hippo we went. Liz was like "how are you guys here?" and I told her what happened and she went "THANK YOU!!" because she was not happy that they screwed up and should've had that paper work the fact that I fought for our session today made her very happy. And she did very well. Good trunk control until the end when she got tired, said "go" a few times to make Babe go, lots of "hi's" to the therapists, and lots of talking.

So, all in all it's been a pretty miserable day, but at least I won one for Team Gill.

My little equestrian has tired herself out and is asleep already. I'm not far behind her.

Til the next one... love and prayers and good thoughts to you all.