More Signing Time & Sunny Days

We recently moved a mirror onto the floor since gazing at himself is Brady's current #1 hobby. I always catch him signing to himself and, I'm not even kidding, saw him laugh and sign "mom" in his sleep the other night. I'm sure I was telling a HILARIOUS joke in his dreams ;-) In reality, he laughs when I bend over and groan so I'm sure that's what was going on in his head.

Signing "hungry"...This is the sign for "hat" which Brady also uses as the sign for "dad." Both signs are done on the head and I'm positive Brady uses them interchangeably because Troy ALWAYS wears a hat. Brady's face lights up at the sight of any hat and then he signs "hat/dad" and starts looking around the house for Troy. He is pretty much just calling Troy "hat" if you think about it. This one's got a sense of humor!

Brady's current signs:

more

hi/bye

food

cookie

hungry

mom

dad

hat

brush teeth

please

thank you

sorry

dog

car

airplane

sleep

ball

all done

brush hair

I think Brady's priorities in life are obvious by this list. He has all of the boy basics covered!

Kissy kissy!

Fun In The Sun

Brady loves to peek at me through the window in his stroller cover. I'm not sure if you can tell what this is but I can't get enough of that little grin. We went to the park this morning after being sidelined for almost two weeks with a nasty virus making its way around Phoenix. Troy managed to stay healthy and took great care of me and Brady. He deserves a break so it was great timing that his friend Joseph came in town. He and Troy love to play tennis...

Brady's version...

We have been trying to teach Brady to drink from an open cup forever. Brady is NOT a fan yet will gladly "drink" tennis balls!?! This is Brady's favorite place to go - it was packed today!Happy weekend, Everybody!

Milestones

Where oh where has my baby gone? I knew Brady might be mobile enough to do this but I had no idea he was tall enough and coordinated enough to pop up on his tip-toes and reach my stuff on the bathroom counter.

Despite the loss of some of my eye shadow it was quite a thrill (yeah, I don't get out much) to find this mess because it felt so normal. This all prompted Troy to start installing the baby-proofing stuff that we got as a gift when Brady was born and have waited so patiently to use. There were so many times we looked at that pile of little white plastic thingies and asked ourselves if we would ever need them. Yes we do!

Phoenix Anyone?

My mom just called to schedule a visit in early March. Yippee! Brady loves visits from Grandma. She used to watch him three days a week when Troy and I were both working and Brady has been so attached to her ever since. He loves to listen to her voicemails on our answering machine and demands "more, more, more" in sign language. Troy and I also love Mom's visits because she always insists we take a few date nights while she is here and it's always fun to watch our visitors soak up the sun we sometimes take for granted.

Can you believe our weather forecast? Is this just plain cruel to all of you up north? Carolyn, did I tell you my little brother is on a Rochester-area mission? So far he has been in very rural areas (currently in Warsaw) so I don't get the impression he is near where you live.

Anyway, here's to sending some sunshine to Utah and NY! We will be wishing for your forecasts when our's approaches 120 this summer.

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!!)

All Done

Brady has been learning sign language and is up to about 20 signs. He periodically surprises me with new signs he learns with Dad while I am at work. He recently learned "mama" and often signs "mama" when I'm not home. While I don't love the fact that he is missing me while I'm at work (ooooh, the guilt!) I love that he is better able to communicate with us.
I haven't seen Brady for a few days due to working some long hours lately. When I got home last night I picked him up and proceeded to kiss, kiss, kiss on his cheeks. He took one look at me and signed "all done." He then showed me his sign for "Mom" and "Signing Time" and pointed to the TV.
Translation: "Bleh... stop kissing me already, Mom! Oh, and turn on my show."
He is growing up so fast! Thank goodness he now has a way to tell me.
Here he is signing "all done taking pictures" as he watches his favorite DVD...

And another picture because this chair and this boy make me so happy...

I got this La-Z-Boy for Christmas. It rocks while reclining and has already seen me through many sleepless nights with Brady. He goes through periods when his body twitches and jerks which wakes him up every few minutes. It helps if Troy sleeps with him and can put a little bit of pressure on Brady's arms or legs. Until we got the chair I couldn't sleep with Brady and Troy has had to shoulder this burden alone. Now I put Brady's head on the fluffy arm rest and during those nights when his little body just can't calm down he sleeps on me while I hug his arms and legs. I can sleep so much better knowing there is no risk of rolling over onto him and the fact that he can't kick me all night long in this position. Hands down, the best Christmas present ever!