Holiday fun time

Did not realize it had been so long since I updated! That is a good thing, means I do t have much to write about. Zoey has been changing meds about every 6 weeks or so, but now we are hopeful that topamax is her med! She still has a few break through small, almost unnoticeable ,seizures. That is huge for her! She was having the small ones before, but they were in clusters. Now she may have 1, but it's by itself. Topamax has also seemed to have stopped whatever else was making her have seizures every morning between 4-6 a.m. Hopefully this means we are finally headed in the right direction for her meds.

 The holidays were really nice! We moved into our new home, and were able to have thanksgiving and christmas at our house to enjoy it. This kids had a blast playing and finding out where buddy the elf had moved everyday. Both joe joe and Zoey celebrated birthdays in December as well, making it a busy busy month. Joseph had a transformer party, Zoey had a ladybug party. Both parties we were able to have nanny come all the way from England to join in on the parties!

I don't want to sound all negative in my posts. That isn't my intention, but I also know that there are parents out there who are just starting the journey of dealing with infantile spasms and I want them to know that others struggle with the same emotions. Zoey has been doing extremely well. She loves to run and climb and even recently started saying "Dixie". Dixie is my mom and dad's dog, sooo not sure why she learned that one, but we will take it! That puts her total vocabulary words to 3.  She is learning facial expressions and is getting some attitude. She knows what NO means and doesn't like be told it. It's very cute and hard to keep a straight face when she gets all mad. She will also give kisses, but must be in a good mood and most importantly WANT to give kisses or again she will just get mad at you. These are all good positive signs for her growth and development. When it's just me and her I love it! I don't think about anything else except she is happy and cheeky. 

 The outside world likes to take that away. I seem to think that everyone else must see that for a 2 year old, she just isn't developed enough. I find myself having to explain to people what she has been through and make them understand why. I don't need to do that. Most of the time I don't believe people even think about it. It's just me. Don't get me wrong I am proud of what she has already accomplished. She is a little miracle. The odds of her having this type of a life of walking and running isn't common. Like only 10% chance. However, I also see how cruel people can be. People who don't know and don't understand. They make a comment that is devastating to the parent and the child. Ignorance... I don't look forward to having those kinds of encounters. I'm not a confrontational person, but don't poke mama bear!

 Now that that is out there, I can resume the positivity! I have a 4 year old and a 2 year old! Cannot believe it... Also my crazy birthday/christmas month is done which means I can relax for a bit. Remember no news is good news!

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. 

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.