Friday, January 27, 2012

2 Weeks!

Today marks 2 WEEKS SEIZURE FREE! It is bitter sweet. Sweet because in the past two weeks she has caught up in almost everything!! It has been the most amazing two weeks. To not feel stressed or worried about having to create a bubble around her at all times waiting for those darn seizures. But here comes the bitter.... last night Jared and I decided that we want to move forward with going to Cleavland, so now we have to try and take her off her meds to make her have a seizure again. I don't know what we are thinking. Part of me thinks this is the miracle we have been waiting for and the other part says we have done this before it is just a matter of time and they will be back. So with that said I guess now I am hoping for one or two seizures just enough for the doctors to see in Cleveland and then back to seizure free. If only it worked like that!! It is crazy that she has been seizure free for two weeks, her medication levels are low, she has been sick and I have been giving her the morning meds at noon so she can get through her classes without falling asleep. So maybe the surgery worked, I guess we will soon find out. This whole being patient and waiting..... IS NOT FOR ME! I am the most impatient person I know.

Saturday, January 14, 2012

We are starting toddlerl class!!

Yesterday we met with Bailey's teachers and decided to start her in the toddler class!! I am so excited. Right now she is in music class and loves it so it will be interesting to see if she can last through an hour and half class with out me. Bailey is doing great right now and I think it is a great time to start this. She is still having a seizure here and there throughout the day but overall she has improved!!! I will post pictures and an update next Tuesday with how it goes!

Wednesday, January 11, 2012

We are in!!

I just got the best call today! After a few weeks of phone calls and lots of paper work, our insurance approved us to go to Cleveland. But that is not the good news, not only did we get approved but they will pay our in net work benefits for the out of net work doctors!!! This saves us a lot of money! This is good news since it sounds like we will be there for one week in Feb. and then 2-3 weeks for her surgery. We also have to go back for a 6month post op and 1 year post op. So we will be traveling!!! I am so excited for Cleveland.  I also received our schedule for the week.

Day 1 Check in,psychiatric evaluation, MRI, and EEG.
Day 2 MEG Scan
Day 3 Pet Scan
Day 4 more monitoring with the EEG and talking with doctors about tests
Day 5 plan for the future and going home!!!

I can't wait to get this week over and find out what is next. I am nervous but so so relieved that at least this is all taken care of and approved. Now if I just could skip the plane ride I would be feeling better. I hate flying and then adding a crazy toddler that has a small seizure issue, well it will be interesting. The total trip will be about 7 hours. YIKES!! But we can do this. Just one more thing I have to keep telling myself will be okay. Wow that list is getting long.

We also had to increase Baileys meds tonight :( she is doing okay but not great. So hopefully we will get some good results. (but not to good we need her to have seizures for Cleveland)
Happy Wednesday Everyone!

Friday, January 6, 2012

Doing Good!

I just wanted to post an update about Baileys and her many medications. Jared and I decided to take a chance and go back down  to only three meds. It was a little crazy for a few days but we did it! We made the transition instead of 5 different pills or liquids a day we are back to three. I just love that Dr. Filloux gave us the option to go back down. Currently Bailey is on Depakote 2.5 pills a day, Vimpat 12mls a day and Oxcarbazepin 3 pills a day. Bailey is back to taking a normal 2 hour nap a day, and can stay awake once you give her the meds for at least an hour. We are making progress and I am so happy! She did have a seizure today :( It  was really hard on her and wiped her out, but before today she had made it 2 days again seizure free! I will take it!! Her speech is amazing the words that are coming out of her mouth just amaze me. Bailey is also climbing like a little monkey! It's so nice to just relax and not live in that fear day after day of watching and waiting for the next episode. I am So HAPPY!!!! What a great great way to start this great New Year! Happy 2012 And to many many more good days!! At this rate maybe we won't need that second surgery! FINGERS CROSSED!!

Wednesday, January 4, 2012

Hello 2012 This is Our YEAR!!!

Hello 2012 I am so excited to see you!! I have been having a hard time with this journey since her failed surgery in September, but I am back!! I don't think I had allowed myself to feel everything we were going through. Maybe it is because I didn't want to think about it or maybe I just did not have any time, but all of the sudden it hit me. I was sitting at the table with Jared and emotions were just flooding out, I was nervous to feel anything because sometimes it is just to hard to really cope with all that is going on. But after two nights of just letting my self have a pity party everything I had been bottling up finally came out and I took a big deep breath and I am ready to face whatever challenges come next!! Bailey needs us to be strong and we need to be strong for the hard decisions we have coming up again. I don't have any more time for these pity party sad days. I know deep down this is "Our Year" Cleveland is the best and they will help our little bug!! After all is said and done, and  after Cleveland we will at least know that we have tried everything. We have been to the best doctors and surgeons that our Country has to offer. If they say this is her life then we will accept that and move on and learn how to handle a child with a chronicle illness. I am starting to wrap my head around that. It has taken a year but I can at least say that out loud. Do I think that this is the life Bailey will always have? No, but I also want to be realistic and know that being seizure free for her is not likely. That makes me horribly sad, but she is strong and can handle it. These seizures have never changed her fighting personality. I thank god for giving me a baby with so much SPUNK!! It is amazing to see her fight these day after day with that sweet smile!! She has an uphill battle that will not be easy, but knowing Bailey  she never backs down and is always up to a challenge. Bailey never has listened to the word No and I don't see that changing anytime soon. So I know this is not going to slow her down. We received the paper work for Cleveland last week. It outlined all of her testing and schedules. Poor baby is in for a hard long exhausting week of tests, but she can do this! We fly out Feb. 5th (the super bowl) and come home the 10th. They are going to do the EEG, MEG, PET, MRI, surgical evaluation and physiological evaluation. At the end of that week we will know and schedule the second surgery if that is what they feel best for Bailey. I can't imagine doing those surgeries all over again but at the same time we know what to expect and know that we can get through it. Since the last surgery in Sept. she has had some of her worst days. Her worst day was when she had 85 seizures that we were aware of. It was heart breaking every day watching seizure after seizure and your baby going from running around talking to just laying in your arms crying. But I am so happy to say as of Dec. 23rd Bailey has been doing so much better!! We have still had some bad days but nothing compared to before. She even went three days seizure free!! THREE DAYS! I was bouncing off the walls happy. Bailey is improving on her speech and coordination as well. She put 5 words together! I was so proud of that sweet little sentence! She is using more and more words every day. And the longer she is seizure free (or more under control) the better she gets. She can use both hands to feed herself, walk, almost run without help and even climb the stairs. It is nice when we get these breaks and I can just sit back and watch her be a "normal" 2 year old. I love that little girl so much she makes me a proud mommy!! She is truly amazing!! Thank you everyone for your prayers, thoughts and help. We are blessed with amazing family and friends. Thank you again for donating and supporting our fundraiser, without that I am not sure if we would be able to go to Cleveland and get this amazing opportunity for Bailey. I also want to say a BIG THANK YOU to Industrial Solutions and Shamrock Plumbing for purchasing  our airfare for the two big trips to Cleveland. Karla and Kevin thank you so much!!  Prayers do work I saw it on Christmas eve and Christmas day. She was seizure free. We had a terrible day on the 23rd her seizures were every 2 mins non stop and with prayer and many thoughts she woke up seizure free for the first time since thanksgiving. We had a perfect Seizure Free Christmas the best gift anyone could have given. Please keep Bailey in your prayers and thoughts, she has a few hard months coming up and will need all the help she can get! We are so thankful for them. I hope everyone has a great 2012, I know we will!!! This is Bailey's Year to conquer these dang seizures!!!! Love The Bates!!