Weeble Update 7/02/2010

So let me catch you up to date. Weeble checked in Arnold Palmer Hospital on June 14th and on the 15th she had her first surgery to place grids on her brain. They monitored her seizure activity for 3 days and Thursday morning they did a stimulation test, There was approximately 30 people in the PICU room to see how it went (remember, this is the first time it had been done at APH, so a lot of staff wanted to see what happens) Dr. Davis and his whole team and Dr. Gegg and his team were there. Myself, Kay Taylor, Moniquie and eventually Dianna (all amazing staff from APH and Pediatric neurology) stood right next to Weeble and watched for any movement or twitching when Dr. Davis would send a "shock" to different parts of the brain the grids were on. Everytime...nothing would happen. Then he found the spots causing all the seizures and she would cry out in pain and move around. It was sad to watch but it was very important to know where it was coming from and make sure it wasn't near any major movement areas. Finally at the very end of his stimulation tests I saw the look of happiness on his face and knew that everything was where we had hoped it to be and nothing would be lost (movement, speech, memory, vision, etc.) I instantly broke down crying , with joy of course) and when Dr. Davis turned around he said "why is everyone crying?" lol, I looked behind me and the whole room was in tears. It was by far the happiest moment I had in a very long time. I will forever cherish that moment. I gave Dr. Davis and Dr. Gegg a big hug and everyone left. The next morning she was prepped and taken for the actual brain surgery where they removed the parts of the brain that caused all the problems. It took 8 hrs. I was never so happy to see her after that, she looked incredible! She actually looked better than she did before going in. The next day she opened her eyes and started watching tv. Her teacher showed up and she smiled big and reached for a hug (i cried). I was nervous that she wasn't going to be "weeble" anymore because she wouldn't eat, drink, smile , laugh or anything she normally would do but she started to come around later on. We went home the following Wednesday and since then she is back to her normal self and is averaging between 4-8 seizures a day!! 85% improvement to pre-surgery!! First I would like to thank her grandma Rhonda for being with me every step of the way, I love you more than you will ever know! I also need to thank Mike for holding down the fort and being the best fiance and step daddy (to Weeble and Kaylee) I could have ever asked for!! My sister Andrea, my mom, Mike's mom and everyone who helped with my other girls at home while I was gone! Ginny Clay for coming and hanging out with me and making me smile :) Teryn for letting me know she was thinking of us (I miss you) Kelly Kay Prickett and her mom for stopping by and bringing presents and laughs (and the quilt Weeble sleeps with every night!) The meningitis angels... Frankie, we love you so much and don't know how well I would have made it without you (especially the laughs at S&S... lmao) Abby and her fiance, thank you so much for the presents and they way you make me realize life is great no matter what! Donna and the Knutters for the balloons and flowers (they made me smile when I saw them in her room after surgery) Jennifer Bax for the presents and bringing Victoria from the Orlando Magic Dancers to see us! Aunt Lisa and Glenn for being amazing support! All the staff at APH, Geo from media relations, Dianna, Patty, Sheena, Michelle, Ana! Dr. Davis and everyone at Pediatric Neurology, Dr. Gegg and Dr.Olavarria and the staff at Pediatric Neurosurgery Specialty Practice. I now I am missing some people but please know I appreciate everyone for the prayers and support we have recieved! All my friends on Facebook thank you!!!

Surgery date!!

Ok so we went to get Weeble's VNS adjustedand before we get there, we get a call saying Dr. Davis had a family emergency (his 7 yr old fell out of a tree and broke her arm ~ :( ouch) and we would be seeing the NP Kay. Right when she walked in she said that she hadn't heard anything but asked if I wanted her to call Dr. Gegg (the neurosurgeon who will be preforming the surgery) and I said yes. So right when Dr. Gegg's assistant hears Kay's voice she says "I was just emailing you the surgery date for Breanna Osborn", and Kay says "well I'm looking at Breanna as we speak" lol. So yea!!! The dates are as followed ~ June 7th check in at 8am....June 8th surgery to place grids on....June 9th actual surgery. I have to schedule a pre-op appt. with Dr. Gegg to go over the risks and what all we are in for but I am so glad we are finally moving forward!! Thank you all for your continued support and I will keep everyone updated as we get closer.

Meningitis Anniversary

7 yrs ago today our lives changed forever when Weeble contracted strep b pneumococcal meningitis. I used to run and hide but not today, it was a great day! I will always consider today the worst day of the year but it won't keep me down anymore :) p.s. Meningitis ~ I fu**ing HATE you & Weeble I absolutely LOVE you!! You are my hero, my best friend, my soul mate!! XOXO

Weeble Update 05/06/2010

We are back from Weeble's neurology appointment! We upped her Klonopin to help calm her brain down from all the seizure activity she has been having. Her teacher said it best when she said "It's like the "seizures" have taken her "hostage". As for surgery Kay said we are looking at the 24th or 31st of May as the day we check in to Arnold Palmer. As we were leaving Dr. Davis pulled up to my car and reassured me it will be either the last week of May or the first week of June, and I love hearing it from the main man, lol! So our journey is about to begin and I'm holding on for dear life! lol! Thank you for all your continued support and prayers!!

Update on Weeble

Just an update on how little miss Weeble is doing... she is getting back into the school routine and doing well in that sense but her seizure activity is getting worse by the minute. Her first day back to school and she came home with a fat lip from having a seizure and hitting her face on the cafeteria table :( There is a another sad part to the story, she has a new assistant and when they got back to the classroom her teacher said "Oh my what happened to Breanna?" and instantly her assistant started crying saying how bad she felt and how was I going to react... :) sweet huh? Her teacher reassured her that this is nothing new to me and it was no ones fault. I love knowing her assistant is a caring person to worry about her like that ya know? Well hopefully we will hear more about the surgery date soon because she really needs it before she does more than bust her lip open. Thank you for the continued prayers and support we love you all!!

Surgery set back :(

So we're back from Weeble's neurology appt. and we have some kid-of sad news. Surgery has been postponed until sometime in May, no exact date yet. Dr. Davis had just got off the phone with Dr. Gegg (neurosurgeon) and because Weeble will be the first patient EVER to have this procedure done at Arnold Palmer they said he must have a proctor supervise the operation. So Dr. Gegg called his mentor from Louisiana or Texas to come and he isn't able to make it until May but he will be there. I am sad it has been put off but I like the thought of having her neurosurgeons mentor, the man who taught him everything he knows, to be there. I should find out the dates either today, tomorrow or at least by next week and I will keep everyone posted! xoxo

Easter 2010

Happy Easter everyone! Today started off really good, Weeble hunted eggs and ate some candy but by the afternoon she started going downhill and fast. Her seizures were clustering and may have been causing her some pain or discomfort. During a set of head drops she started getting mad and pulling her hair, screaming, crying and kicking her feet. I wasn't sure if she was in pain or was just getting mad because she wasn't able to control her head? Either way it was heartbreaking to watch. I would normally call her neurologist but in this case I knew the drill. I gave her an extra Zonegran and just waited it out to see how she was. She did fine the rest of the night.

4-5-10

Weeble woke up this morning with a very full VERY stinky diaper lol. So straight to the tub she went. she seems to be doing fine as of now minus the fact she is sleeping, as I am writing, after a set of head drops. We will see how today plays out and I will post again xoxo

First blog for Weeble!

So I've finally decided I need to blog after my aunt Jackie asked me if I've ever thought of writing one..... and yes I have so here goes.

This blog is about the life of my daughter Weeble (Breanna), funny but normally people would put the nickname in parentheses not the "real" name but that is who she is to everyone. Weeble. I've been asked a few times before what her real name is, lol! Let me give you a "quick" rundown of how we got to where we are. Weeble was pretty healthy normal baby until May of 2003, she became very ill. I took her to the ER on May 12 (mother's day) because she had a fever and vomiting they did some tests and said it was just a little virus and sent us on our way. She had her 1 year well baby check up on her 1st birthday May 14th and again her pediatrician said it was just a little virus and sent her home.Mind you she had a relentless fever and wouldn't eat or drink and vomiting, so on May 16th I rushed her to the ER again when she became unresponsive and I couldn't keep her awake. Right when I got her in they took her back and did 2 spinal taps with no luck so we rushed her to Florida Children's Hospital in Orlando where they finally succeeded in getting fluid from a spinal tap. The results were strep b pneumococcal meningitis. Now I'm going to skim through the next 21 days in PICU. She had a stroke which cause 1/3 of the left side of her brain to be damaged as well as parts of the right, seizures, she was put in a medically induced coma, had a breathing tube, feeding tube, picc line (because they collapsed every vein in her little body), and catheter. They said on May 21st ( my sister's) birthday that "she may not make it through the night" repeatedly , thank God the she did. She was released on June 6th.

Fast forward...... after almost 7 years, 2 VNS devices, EVERY anti-seizure med FDA and non-FDA approved, too many EEG's MRI's and other scans to remember, trips to Miami (never again by the way, lol) Tampa and different hospitals in Orlando we are now going to do brain mapping and surgery! We check in on April 19th @ Arnold Palmer Hospital for Women and Children!! I will continue to post from the hospital and keep everyone updated on her progress :)

I posted this video to show Weeble having head drop seizures so you will see why surgery is so important.