Home Sweet Home

We're home! We were able to record one seizure, got tons of face time with various neurologists and epileptologists (a new word I learned this week) and have put Brady on a new medication. So far, so good. We are almost 48 hours seizure free.

Now if we could just get the glue out of Brady's hair. The nurses suggested mayonnaise - so gross. Brady smells like an egg salad sandwich but his hair has never looked silkier ;-)

Seizure Update

Just thought I would check in quickly and let everyone know that, due to an alarming number of seizures in the past 24 hours, Brady has been re-admitted to the Epilepsy Monitoring Unit at St. Joseph's Hospital in Phoenix.


This is not a bad thing. This is not a scary hospital stay. The type of seizures Brady is having are not dangerous to his health in any way. They are just stressful and in need of being figured out.


We have never been able to record one of Brady's seizures while he is hooked up to an EEG machine and therefore our neurologist is to some extent flying blind when helping us pick the right course of treatment. We stayed in the EMU for three days in October and Brady had no seizure activity whatsoever to record. Instead, he was happy as a clam (see below) and the nurses treated him like a rock star because they don't typically take care of little ones.




This morning our doctor met with us for almost an hour and a half and patiently answered each and every question. I love him for this. It's so rare to get undivided attention from physicians. The EMU is usually booked out at least a month and somehow our Dr.'s staff got us squeezed in at the last minute. I came in to the office this afternoon to check in with some clients and Troy just called me to say they already have recorded one seizure. How strange is it that we were both pumping our fists and yelling "YES! HE HAD ANOTHER ONE!" This EEG information will be extremely helpful in determing exactly what type of seizures Brady is dealing with and from which part of the brain they originate. Also, this means we won't have to spend an indefinite amount of time there - last time we only lasted three days trying to "corral" Brady in a little pen on the floor and keep him from pulling off his "special hat" and the wires underneath.




Brady is feeling pretty well. He is sleepy and cranky for an hour or two after each episode but is very much himself during different windows of time throughout the day. This morning we went to the park. Tonight we will spend the night in the hospital. Epilepsy is weird that way.

We know it will take some time to find the right meds but we are very hopeful and encouraged now. We still have many, many options to try which is a great thing.

Lately

I love blogging and the opportunity it presents to record our little family's history, especially considering we don't scrapbook or write in journals. However, I have hesitated to blog about some recent events because I am having a difficult time staying positive!

We were hoping that putting Brady on seizure meds would decrease the frequency and/or severity of his seizures but unfortunately the opposite has occured. He has had 2 to 3 seizures per week lately, some of which have clustered together and turned into grand mal seizures. When this happens we administer a valium suppository and it then takes Brady two or three days to return to normal activities like walking or going to his usual therapy appointments. He is averaging one or two good days a week when he seems like himself.

We are becoming more skilled at handling each situation as it arises and no longer feel the need to call the paramedics. However, each 'event' is still incredibly frightening. It's also becoming frustrating to cancel all of our plans at the last minute and continue to sleep with Brady during all naps and throughout every night. We are finally admitting that we need some help and are starting the process of hiring a respite care provider. Respite basically consists of babysitters who are trained to care for Brady's specific needs and could watch over him while we are home and need some rest, while Troy goes on errands during the day, or in the rare possibility that Troy and I could go out on a date. It might sound insane that we have never hired a sitter since moving to AZ but we are paranoid parents who haven't really dared to ask for help followed by directions for what to do if Brady turns blue.

We have met some amazing families on our journey with Brady, many of whom have extremely medically fragile children, some with limited life expectancy. This has brought me some needed perspective and has helped me adjust my expectations of what I thought my life was going to look like once I had children. I still have my bad days but will readily admit that the positives in our situation ALWAYS outweigh the negatives. I mean, have you seen this smile?

I feel better already. Thank you, internet, for helping me stay positive.

Coming Up For Air

Remember that post about my rocking chair and how in love with it I am? I changed my mind. I have been in that damn chair, for the most part, since Saturday morning. Brady seized over and over in that chair until we were finally forced to break open our emergency pack of Valium. I won't go into the details of how you administer Valium to a toddler but it scared us to death to use it and it actually worked quickly and beautifully. We haven't had any seizures since Saturday morning, just a high fever that won't go away and one cranky little boy.


On a brighter note, the powers that be at work have assured me I can work from home whenever and as much as I want. I don't think I'm disciplined enough to make that work but it's a huge relief to know I have the option. Also, we ran to the grocery store this morning to give Brady some fresh air and find something he might actually eat. This is who we saw...

We saw him but I didn't dare talk to him because A)I was too star struck and B)hello, I looked awful and there were cameras everywhere! I am actually quite obsessed with the Oprah show and its many experts. Troy loves to poke fun at me for this and has already pointed out how ridiculous it is that I didn't go talk to "my idol."

There is one other thing that has made Troy and I so very happy lately and it is this clip. Apparently the whole world has seen this video but us. We have been speaking in bad British accents now for days.

I know it seems like all we blog about is seizures but we're just in the midst of one of those clusters. We can't seem to think about or get much else done but we know it will pass. We will get this medication thing figured out and our lives will start to feel normal again. Thank you, everyone, for your kind comments, thoughts and prayers. It boosts our spirits more than you know.

Trileptal

This has been a difficult week for us. We decided to place Brady on seizure medications as his seizures continued to increase in frequency and duration. We had discussed our options with a couple of different neurologists over the past six months and finally decided that it was time. We weighed our options with a couple of different medications (all carried side effects that can be frightening) and finally decided on Trileptal. Anyone who has gone through the process of diagnosing seizures will vouch that the process is both difficult and scary. First of all there are many types of seizures and it is not easy to identify the specific type. Brady has been through three different EEG procedures in the past year (of course he didn't have any seizures while hooked up to the machine). One of the EEG's was actually a 3 day study in the hospital (which tested all of our patience levels) that revealed no seizure activity. The picture on the "RSV SUX" post was actually taken in the Epilepsy Monitoring Unit at the hospital where we did the 3 day study. The bandage on his head was to keep Brady from pulling the wires off his head. We have tried to catch a couple of seizures on our own with the video camera but have been unsuccessful because it is too frightening to leave his side as the seizure is happening to get the camera and you don't think to grab it as you are racing in. We finally had to make an educated guess that Brady was suffering from Complex Partial Seizures which means that the seizure originates in either the right or left hemisphere of the brain causing the opposite side of the body to shake. Our best guess is that Brady's seizures are beginning on the left side of his brain (which is actually where he has an arachnoid cyst) because his eyes are usually shaking back and forth while looking up and to the left with the right side of his body doing most of the movements (usually a rythmic pumping motion). He will ocassionally bring his fist to his mouth while he is having the seizure and there is no shortage of slobber. His mouth and tongue make a smacking or clicking sound (almost as if he is tasting something) and usually end up blue in color as he struggles to breathe regularly through it all (this is the scariest part). His seizures usually last anywhere between 1-4 minutes (they seem much longer). He usually sleeps for a while immediately following the seizure...unless we call the EMT and they wake him to take his vitals and in this case he becomes EXTREMELY irritated (needless to say, we don't call very often anymore!)...
So far so good with the medicine and he is very good to take his "Medicine Candy". As Kajsa noted in an earlier post, some of our posts may seem like a little too much info but we are hoping that someone will be helped in some way shape or form by stumbling into our blog. We have learned so much from others and hope we can do the same for someone else.
The one thing we truly regret through this whole process is not buying security cameras for the house earlier in the process as we witnessed Brady having a seizure in his sleep the first day we had the camera monitors set up (if only we would have had a recorder set up at the time). All but one of Brady's seizures have been during either a nap or while sleeping at night. We realized that we don't know how many seizures he has had in his bed by himself without our knowing. This left a sick feeling in our stomachs knowing that Brady has been alone at times having seizures. Second guessing yourself is not a fun activity and we are getting way too good at it. You will find much better descriptions of seizures and medications than I gave at http://www.epilepsy.com/

(This picture was actually taken in Utah last spring...thought it may bring hope to everyone that the snow really does eventually stop!!)