Tests,tests, and more tests!

Okay here is the big update for everyone. Zoey was taking a med called zonisamide that I had high hopes for, but did nothing. Now we are on another medication called vimpat. It seems to be helping, but not enough. Instead of having seizures daily, she is having them every 2 or 3 days. After watching these seizures, I had a huge fear that her infantile spasms were back. So back to the testing games we went. She had an MRI on Wednesday which was long and made us all exhausted. Results came back good. Last year she showed some deep tissue injuries from her spasms. This time, there were no signs of injuries at all. Old or new!

Thursday we went in for another EEG to make sure spasms weren't back. Lucky for us there is no infantile spasms going on. She still shows abnormal signs which means she has seizures going on (duh!). So now we wait until Tuesday to talk to our neurologist and find out what step to take now.  I have to say she was the cutest little girl for the EEG. If you have never had one, they hold your head still then put tons of goo and electrodes all over your head. I would say about 20-30 electrodes. She was smiling and grinning and making everyone laugh. No crying or fighting. She was a beautiful little toddler making everyone love her. She is good at that! Her favorite person is joe joe her brother who continuously tries to make her laugh. 

Zoeys time

Can't believe it has been so long since I blogged! So hear is the update. We finally got into a new neurologist who has been fantastic so far. She actually was the doctor that diagnosed Zoey in the very begging and remembers her. This dr. Has made her own practice and what a change it has been. She calls back the same day when I leave messages and even gave me her email address which of course I lost, but still amazing! I talked to her all about my concerns with Zoey and starting new meds again. After a lot of discussing we settled on zonisamide. Still a scary, crapy drug but the least scary of them all and the one I felt comfortable with. So now we have been on this mes for something like 8 weeks. We had to increase her dosage because she was having early morning breakthroughs that would wake her up crying with cluster seizures. She has been on the increase for almost 2 weeks and it seems to be working so far!

Tomorrow we start another fundraiser for little miss Zoey! I know I know 2 in one year! Yes a lot but this one she was able to get into last minute and best of all I didn't have to plan it! Also it's in summer so no having to compete with christmas. Don't worry no more after this for awhile!

Also the other good news is that our hard  work is paying off! We are in a research about genetics and infantile spasms. Haven't done anything yet but I love that we are doing something productive to help others!

Dun dun dunnnnn....

Yes the dreaded day has come! My Zoey is having seizures again. What kind you may ask? If only I knew... But alas, we don't get answers... What do you do when you call your nurse and she is on vacation for 2 weeks? Call your neurologist!!! Oh wait.. She is on maternity leave... They won't give you another number, only leaving a message to be answered in 3-4 days. Good to know that seizures don't cause brain damage or anything! Oh they do?? Well we will answer you in 3-4 days still... Hmm time for a switch!! We have an appointment with a new neurologist at a new place tomorrow! Hopefully we will finally get some much needed answers about what is happening with Zoey and how we can help her. Yes, I know this is a rant, but only so much can be taken before mama bear gets poked too many times. I recently saw a movie that described my whole day yesterday when we were trying to figure out what to do. Stress paralyzed. When there is so many things to do, but you are so stressed that you can't do anything. You sit and think and stare... Luckily today I came out of it, but it was a long day!! I will keep everyone updated as soon as I know anything new or worth mentioning!

Ohhhh yeah!!!

What a funny day! Zoey's physical therapist has been telling me for weeks now that when Zoey was ready she would walk. She has been on the edge of walking for weeks now, but has refused to talk those first few steps.... Until today! Today was the day that Zoey met her grandad Burke for the first time. So how does she great him? She takes 3-4 steps on her OWN!!! Then she proceeds to give her nanny Burke a big smooch right on the lips. Must tell you that watching this little girl being so social and doing things that we didn't think were possible, such an emotional night. She saved her big moment for her grandparents! Little show off! We have been pushing her to do it and refused, but her physical therapist was right. In her own time. 

She is still having seizures, and there isn't a lot more information about that. I want to diagnose her myself with absence seizures. Those seem to look the most like hers. She doesn't have them everyday, but they are still frequent. We haven't put her on meds yet. Still trying to figures out which direction we should go. The meds are pretty rough, but we don't want to wait until she has bigger and worse seizures. All in all though, she is still her happy little self. It's amazing how many emotions you can have during the day. Right now in this very moment, I am happy and at ease with my little girl. 

Oh so happy!

I'm sure by now everyone has seen my many many pictures and videos of my Zoey doing her thing! My baby girl can crawl! Yes, it is a bit of a modified version, but oh wow she is on a roll. Today I actually had to tell her NO! Doesn't sound exciting right ? Usually she can never get into trouble because she is stuck wherever I put her. Today she scoot/crawled over to the plug while I was vacuuming and tried to figure out what it was. She then proceeded to chase me around trying to get the vacuum. How long have I waited for this! So now she is moving right along and pulling herself up on things and trying to take that first step. Bless her though, the kid needs to know how to fall down. She is so cute, when she goes to bed or is tired she puts her hands behind her head. That is how she falls back words too. As soon as she tips, hands go up behind her head. Yeah it's cute and all, but she's not a big fan. So we are working on falling on her bum. Joseph has been so fun with her lately. He loves to squish her cheeks, and for whatever reason Zoey likes it and laughs.... Most of the time. Joe joe refuses to take baths without his sister and they play and play. Visions that I had in my head of what they would be like growing up together is finally coming true. We did go and see the neurologist again just for her check up and for now, we will leave her off meds. Any sign of a seizure and we will be doing an overnight EEG with her and getting her on meds. Let's just keep the good vibs coming and say it was just a fluke with the whole fever thing! 

Ok?

Alright yesterday we finally got some results! Zoey was a bit naughty and wouldn't sleep during her EEG. That means her EEG wasn't as clear as it should have been. However, she definitely doesn't have infantile spasms. That is a good thing. They are not sure if her seizures are related to her sickness a couple of weeks ago or if now it's something else entirely. Whatever it may be, the ones she is having are very short and not harmful to her brain. Meaning she shouldn't lose anything she has learned like she did with infantile spasms. Yay! That was my biggest concern since she has been doing soooo well! The plan is to wait for 3 weeks for our next appointment and see how she does. If she has more seizures she will go on meds, but if they stop then we keep plugging away like we have been. I intend to look into the meds they will put her on so going into the appointment I will already know what I want to do. Good news is she hasn't had any seizures since Sunday so gotta keep going!

Bummer

I probably shouldn't write a blog when I feel this way, but unfortunately for everyone this is my therapy.  A way to clear my mind and maybe even get some sleep tonight. Zoey is having something going on. Spasms or seizures? We will find out hopefully tomorrow or Wednesday. Another EEG on the way for my baby girl. I knew it was a possibility, but I didn't think it would only be 3 1/2 months of being spasm free. For a little while I have seen things that made me wonder if she was having them or not, but last night was a flashback to those dark days. She woke up from sleeping and back to back to back 10-15 little body shudders and eyes unfocused. My stomach has dropped and I feel detached. She has accomplished so much these last few months! She has pretty much caught up to her age. All except the crawling which is coming soon! Now the uncertainty sets back into place. I don't want to do this again. I don't want to watch her suffer while I just have to sit and watch. I just want to either cry hysterically into my pillow or else punch a hole in the wall and I'm not sure which would make me feel better. So instead I'm asking for prayers and happy thoughts to be sent zoeys way. Long days ahead with tests and decisions.