Apr 20, 2010
So there is definitely a reason we call our little girl Amazing Grace. Last week we went to the IWK for Gracie's first follow-up since her surgery. Before surgery they had all but guaranteed that her left hand would be non-functional and at best, if it did regain function, it would be very limited. When Dr. McNeely walked into the room and saw Gracie scooting and holding her left hand out he was visibly taken aback. Wow!! We went to Halifax knowing that the doctors would be surprised but this was better than we expected! After Gracie showed him all of the things she was able to do (like grabbing his fingers), he asked if we wanted to see the photos from surgery. He had asked for permission before surgery to take some and we were fine with it because if he published anything, it could be a help to others - Gracie has had many interns, nurses-in-training and more throughout her life and we've been happy to help because they can really pass on the knowledge that they may not have gained otherwise. Anyhow, we had asked then if we could see the photos afterward and thank goodness, he didn't choose to show us the week after surgery, they were quite intense!
What we saw was incredible. They had done a reverse stimulation to see which parts of her motor and sensory functions were within the tuber - the area they were going to remove. In stimulating her left hand, they saw that there were BOTH motor and sensory functions within the boundaries of her tuber - although her brain had already rerouted some of the functions it was clear that on the day of surgery, there were still functions in there and they were going to remove them. So THIS is why they were so adamant about her losing the ability to use her left hand! By all rights, she shouldn't be able to! Well, here's to you Gracie! We'll still have to wait until she's older and can tell us about the sensory part, but people can certainly make do with limited sensory function in her hand - we're pretty sure that she can sense hot and cold and pain, so those are the most important things to keep her safe!!
And above all else everyone, we should say that Gracie has been SEIZURE-FREE since surgery! From 100 seizures a day at 6 months old to seizure-free today. Thirteen syringes a day at one point to just 2 little pills a day. Measuring and weighing every piece of food that she ate to being a regular little girl. How life changes - we have to get used to a new 'normal' and it may take a while. To not think 'wait, what was that sound? Gracie, are you okay?' or 'was that a twitch, the start of a seizure? no, she just has something in her eye', ... Your brain gets stuck in one mode so now we have to switch over and enjoy this time with Gracie - hopefully it's long-lived and we can be peaceful for a while! Her disease is certainly a life-long one (a little tumor dormant in the ventricles of her brain, possible kidney cysts and lung disorder as she gets older) and we need to monitor her, but for now, things are good.
With all of that said, I hope to go back and post many of the messages to online support groups and paper journal entries that we've made over her life so that it may help others on the same journey.
As far as fundraising is concerned, we've been blessed over the past year by all of our friends, family, community and even perfect strangers. So this year, we'd like to 'pay-it-forward' and begin fundraising for the IWK - a wonderful hospital for women and children. Specifically, we'd like to help the neurology/neurosurgery division, but any help to the IWK is used wisely, so whereever it goes, we'll be happy! We have plenty of Gracie fairies (charms and earrings) and Gracie buttons and we're thinking of making the July BBQ & Yard Sale an annual one! Please let us know if you'd like to support the IWK by taking the fairies to your workplace or later in the summer, but donating any household items, clothing, etc that you've been looking to clean up!
THANK YOU everyone for being on this journey with us! We couldn't have done it without you!
Sarah, Kayoe and Gracie Girl
Dec 18, 2009
Our beautiful, amazing, tough little girl came out of brain surgery just 3 short hours ago. After going in at 8am for sedation, EEG stats, and positioning with the head brace, they began the surgery at noon. We expected to not hear anything until supper time and were moving our things into a temporary room by the ICU when we ran into the neurosurgeon! He was there to tell us that everything went very smoothly and we should be able to go into the ICU soon enough to see her. We put our things into the Ronald McDonald House room here at the hospital and just after, they came to tell us we could see her. We've prepared for this moment for a year and a half - expecting the larged bruised swollen eye, a giant wrap of gauze around her head and worse. Like everything Gracie does, she amazed us - her eye wasn't even swollen shut (the swelling will increase over the next 2 days, but they are still impressed) and she was asking for Mama, her bunny and wanting Dada to pick her up. She is crying, very dopey from the morphine and dry from the tube they took out of her throat, but she is nevertheless herself. Her left side is not yet moving and we will not know how much function she has lost for a while - the neurologist pinched her toes however and she cringed her foot which is wonderful. Her hand and arm are not reacting though. She is desperate to have us pick her up and cuddle so we've had to let her rest - it's killing us to not squeeze her and bury her in kisses to prove that this is real, our baby has come out of this surgery. We have some VERY tough days ahead of us as her headaches will begin tomorrow, as well as the swelling. But for now, we're just grateful that Dr. Dan McNeely and his team have pulled off this small miracle. THANK YOU...
Nov 2009
Gracie's Surgery is Scheduled!!
This is it everyone! We finally have a date for Gracie's brain surgery. It is scheduled for Friday, November 20th at the IWK in Halifax, Nova Scotia with Dr. Dan McNeeley. We will be heading down on the 17th for some extra testing (MRI, CT scan) before the surgery and expect to be in the hospital for a week after surgery if all goes well, plus a couple of weeks at home recovering.
Thank you so much to those who will be stopping in to say hi and give Gracie big hugs to keep her brave. And thank you to our friends and family staying at our home and keeping Gracie's puppy Gabby company, she sure will miss us but she will be relieved that Gracie might come home without those awful seizures (Gabby likes to sleep on Gracie's floor and will sometimes come and sit on our feet if something is wrong!).
And a HUGE thank you to all of the wonderful people who have offered financial and moral support to our little family. We are going into this surgery with our only concern being our beautiful baby ... thank you.
** Rescheduled to Dec 11th - after 3 days at the IWK for Gracie's pre-surgery tests (MRI, CT Scan, etc), we were sent home because the ICU was full with serious cases of children with swine flu. We were devastated but we would be back in 3 weeks.
** Rescheduled to Dec 18th - the night before we were to leave for Gracie's surgery, we received a call to say that Gracie's EEG technician's father had passed away - add that to a bad snowstorm and the remnants of a vomiting virus for Gracie, we were really not meant to have surgery on the 11th. The surgery DID happen on Dec 18th, 2009 (click on the journal tab to read about it).
Oct 8, 2009
Well, we're hoping that by tomorrow we might have a better idea about what will be happening for Gracie. Her neurologist was back from vacation briefly, then left again until today, for a conference maybe :( We really feel in the dark when it comes to what's ahead for her. Will they call us and say they can do the surgery next week or will they keep falling behind with the planning?? Gracie will be two years old on Halloween and while she is advancing incredibly compared to even 6 months ago, she could already be recovering from surgery.
Yesterday, Gracie began saying the word 'seizure' - while this is what we've hoped for, that she would someday be able to tell us when she's having one, it's heartbreaking to hear that word from her little mouth (it sounds like 'dzi-dee'). For her to even know what seizures are is hard for us (it's hard not to cry as we think about her saying it, having the seizure, then saying 'all gone' when it's done - she did this when we were in the bank this morning).
For the lighter side, I just watched Gracie playing 'make-believe' here while I work. She was taking Dada's old superheroes and kind of making them talk, then putting puppets on her hands and changing her voice. WOW is all I can say! It's incredible to watch this 'baby' grow into a 'toddler'!! And she is genuinely funny! Sometimes we're just in stitches laughing so hard and she just keeps on doing whatever it is and laughing harder herself. She is picking up new words every day too (with the unfortunate 'seizure' included) and chit-chats away to herself or tells us stories (oh, how we would love to know what she's saying!).
Every night after she's gone to bed, we seem to sit on the couch and marvel over all the little things we've noticed her doing that day, then the next day she surpasses the last. She's an amazing little girl and our lives are so much better with her in it...
Sept 11, 2009
It's finally Friday, only 3 more days before our neurologist gets back from vacation and we can get the ball rolling on Gracie's brain surgery. They would like us to go to Detroit for a PET scan before the surgery but there's no word on that either.... waiting, waiting, waiting.... we know all about it!!
On a bright note, Gracie went to the exhibition on Wednesday and went on a few rides - including the trucks ALL BY HERSELF!! Mommy and Daddy were giddy watching their big girl say 'wooooooooooooow' as she went around and around! Gracie is 22 months and for a long time we wondered if she was ever going to be able to do something like that on her own without someone holding her for safety (the seizure monster has been quiet for the past few weeks, thank goodness, with zero to a couple seizures a day - except for 2 really bad days that made us very sad). She really is growing up!
Last week at rehab, we showed them a printout of the Reverse Kaye Walker that we were interested in trying for her and Karen, her physiotherapist, said 'wait, I think I might have something!' and yup, after a little digging in storage, there it was! A beautiful toddler sized walker! We had to rig it up with a saddle thing to hold her up and a belt around her waist but she was on her feet! Once we got it home, we adjusted everything to bring her up straighter and she's been cruising around the house (she needs help turning but she can get going alright!). We notice that she's not up on her hips, kind of pulling herself like a person might on a rolling office chair. BUT, now when we stand her on her feet and keep her standing, she doesn't scream like we're pulling her fingernails out! (it doesn't hurt, she's just mad mad mad at us :) )
We'll write more as we hear news, until then, we're just enjoying every day with this wonderful baby who is learning and discovering new things every day!
