Fun TImes

These first two pictures of Ya Ya just make me smile. My baby girl had the BEST time camping ever. She really loved every minute, and I just loved watching her enjoy herself and all her family. We had a good time and really look forward to more trips in the spring.

Mud Baths

I'm horrible about posting updates! Nick is doing great, No seizures since his surgery! The first week home with him was not fun. He had a lot of anxiety, and did not trust us to take proper care of him. Silly kid.

His recovery and attitude has been amazing. He's been going for walks, and can't wait to start lifting weights again. His Dr.'s say it's too early to call this a cure (especially since his chances of this were very low) but we are hopeful. I love this big kid and it's so nice to see him smile again!

The girls and the rest of the kidlets are doing well. We are looking forward to a week at the ocean next week with all the family.

The little girls thought it would be fun to add dirt to their pool today and take a mud bath. The only time I freaked is when I caught Ya Ya drinking the muddy water!

Multiple subpial transection

Not exactly the words we were hoping for, but at least Nick still has options. The mapping this morning showed that Nick's seizure focus is located too near his speech and motor areas so he will not have the resection. His loss of function would be too great if these areas were removed. The mapping was interesting but very exhausting for Nick. I read that some patients actually enjoy some of the sensations they experience during mapping, but this was not the case for Nick. It caused him to be very fearful of a big seizure and he stopped multiple times asking for reasssurance. Once the testing was done he got a nice calming dose of Ativan, and he is still sleeping...12 hours later. Today has been the hardest so far, but the Dr.'s have told us how well Nick is doing. They told us most of their patients don't do as well as Nick.
Tomorrow morning Nick will have surgery to have the grids removed and will have the subpial transection. He won't have any tissue removed, but will have tiny slices made in the area of his seizure focus. I don't have the energy to explain the procedure, but it's easy to google.
I am thankful that at least Nick still has options if this doesn't work. Many epilepsy patients are not candidates for grid surgery, so I still feel blessed, but I'm speaking for myself and not Nick. At least we know where Nick's seizures are so this will never be in question. His Dr.'s feel Nick is a good candidate for the deep brain stimulation (neuro-pace) but we will cross that bridge when we come to it.
Nick has been so amazing through all of this. He is such a brave and awesome young man.

You should see the other guy.

Nick's grid placement went well. He had 146 electrodes placed on the left side of his brain, and started having seizures before even leaving the ICU. He was finishing up a huge seizure right before his grandpa and I arrived which was very upsetting to everyone. Luckily after some heavy drugs things settled down and he then proceed to have a seizure every half hour (not big ones) which kindof freaked his drs out. He could have these grids in for two weeks, but decided to have all his seizures in the first 4 hours of being hooked up. As is the case in all video eegs, you press the button when the seizure starts which alerts the whole floor with a siren, flips the lights on, and everyone comes running. Well doing this every half hour it became pretty comical. By the time they came in his seizures had stopped. His typical seizures are brief, but very frequent. I think he had twenty yesterday. I told them that I could just reset the monitors, but they wouldn't allow it. Anyways, it's now the end of day two and he's back on all of his meds. He felt pretty crappy today and woke up this am with his eye swollen shut. He's getting tired of hearing how all this is normal for brain surgery.

Tomorrow am his surgeon and neurologist and some other guy will come in and start mapping out his brain by stimulating different parts of his brain with small amounts of current. This data will tell them if they can proceed with the resection. This whole surgery boils down to what they find out tomorrow morning. I am prepared to be disappointed. My heart will break for Nick if he's gone through all of this for nothing. His doctors were talking to us today about implanting a brain stimulator in Nick, but he would have to heal from this surgery first for three months, and even then the stimulator is not FDA approved, so Nick would be part of a clinical trial. I can't imagine him having another surgery in three months, but will support whatever he decides.

The picture of Nick looks a lot worse than he actually is. His head looks so big because they packed the wires on top of his head and then wrapped it all up. His eye really is swollen shut, but this is normal.

Since Nick had seizures like crazy (way to go Nick) in 4 hours, and they got the data they needed, he will have his surgery moved up 5 days! This is so awesome!

I am exhausted and feel like this post is not making sense.

more later...

She Sleeps

Wake me up when it's over

Yesterday morning we headed back to the hospital for Nick's pre-op appointment and one last MRI. I planned on having a long list of questions, but came empty handed instead. My main concerns were how long Nick would feel like crap for, what his recovery would look like, and is this going to make an already depressed and angry kid more angry and depressed?
Nick will have a horrible headache and nausea right after surgery, and having seizures on top of this will not help things, but we are doing this invasive monitoring to capture seizures so this is the ultimate goal! I am anxious to finally find out where these stupid seizures are coming from, and even more anxious to hear that he can have a successful resection without affecting his speech or motor function. Nick will have left sided weakness that should improve with time. This is probably the part about this surgery that I dread the most. I hope Nick fully understansds this, it was explained again yesterday and he nodded his head so I know he gets it.
After his appointment with the Dr. we headed to the Seattle Center (after eating at Dicks) and walked around. I begged Nick to go on the roller coaster with me and he finally agreed. We got the front seat and I screamed the whole time! We had a good laugh, though Mike pretended he didn't know me when we got off. After a bag of cotton candy, ice cream, and a deck of cards (Nick wanted cards so cards he got) we headed back to Swedish for his MRI, where we waited and waited and waited. What was supposed to be a forty minute MRI turned into two hours. The Dr. ordered a functional motor hand MRI to help map his motor region, which entails Nick tapping his fingers at the appropriate time while looking through some goggles at a screen. I think Nick was a little confused and the test took a little longer. Poor Nick, he has been such a trooper. I can't imagine trying to accomplish all this testing with a little kid. It has been exhausting. My heart goes out to parents who spend all their time in hospitals. Our time has been minimal, and we're wiped out.
Speaking of grueling, the Dr. says for us to plan for two weeks in the hospital, but if Nick has good seizures (good?) that give them the information they need, then they will be able to proceed to surgery right away and Nick can go home sooner, but if it takes longer to get good seizures then we'll be in longer. Did I mention that someone has to be with Nick 24 hours/day to push the button when he seizes? Did I mention that someone was me? With Mike having no work this winter, he has to take the work now. This is okay. I can't imagine not being with my son anyhow. So lets get down to business...we need prayers for

• Nick


• successful grid placement-minimal amount of swelling and bleeding


• Quick seizures but no grand-mals (tonic-clonics)


• Smooth and steady hands for the surgeon (I noticed he has pretty shaky hands & isn't this a bad thing for a neurosugeon?)


• Good pain control (we have a $100 bet on this) silly kid thinks he won't need pain meds


• Peace if they can't do the resection


• Peace if they can do the resection


• Strength for his mom & dad & family


• Good internet connection so Nick can play poker-stars


• Decent food & good coffee


• God's will

more later...

Head to Toes Update.

Our oldest son Nick is scheduled for his first brain surgery July 7. For those of you that don’t know, Nick started having seizures for no apparent reason when he was around 11 years old. I laugh now when I think back to our first ambulance ride to the hospital, and how the doctors told us our son just had a night terror. How I wish they were right. It has been years of seizures, different meds, doctors appointments, and heartache for all of us that love him. A few years ago, Nick could have 50 small seizures a day, now he is just having the big ones, which wipe him out both physically and emotionally. He has become a recluse rarely leaving the house. I thank god for our baby girls, his little sisters, which give him a reason to smile, a reason to play, and I hope live. They are all over him when he shows his charming and sometimes grouchy face downstairs. Last week Ya Ya fed him cashews until he almost puked, and just today Jie Ling called him a poopy butt in response to him calling her a monkey. The two of them went round and round. The little girls adore their brother, I just wish he could find that value in himself.

His surgery will be in two stages. First, he will have electrodes placed directly on his brain and we will wait for seizures. The electrodes can only be in place for up to two weeks because of the risk of infection. When they have captured enough seizures (pray for this to happen quickly and safely) and they aren’t coming from critical areas (their concern is they are coming from his speech area in his left frontal lobe) then they will proceed with the second surgery. When they go in to remove the grids they will resect the part of his brain causing the seizures, and then put him back together. I’m not sure how long he will remain in the hospital if they are able to do the resection, and I have a lot of other questions I need to start writing down before his pre-op appointment July 2.

The chances of him becoming seizure free are not great. Frontal lobe surgery for seizures is not as successful as temporal lobe surgery which has a very high percentage of success. Nick fully understands the risks and is willing to move forward. Nick is very bright and has made this decision on his own. He knows he has our total love and support, and he wants to try whatever is possible to get better.

That’s it. The conversation was over back on May 21 when we met with the surgeon. Nick chooses not to discuss it, and does not care to hear about it, so we have not said a word since that day. How I wish I could hold my baby boy and tell him it will be alright, how I wish we could discuss his fears and anxieties, but he won’t allow it. He is trying so hard to be a man and it kills me, but I have to respect who he is. He is a beautiful boy.

So that was the head update, and now for the foot update. I so do not want to see Ya Ya lose her foot. Unfortunately this big foot cannot wait. We see the dr. June 20th. Finding shoes to accommodate her is becoming a problem. Nordstrom is the only place that will sell different sized shoes and this second pair I just bought her (which entails trying on lots of shoes!) are uncomfortable for her. This summer is going to be a problem if we can’t find something to put on her feet. I bought a pair of crocs for her but even those are too tight for her fat foot, it's pretty comical trying to cram her foot in it, reminds me of Cinderalla's step sisters trying to cram their foot in that glass slipper. Poor Ya Ya.

Okay I’m tired of all this depressing stuff, life really isn't so bad!!

Besides a couple of impending surgeries, the kids are doing great! Brianna is getting ready to go to Ethiopia to volunteer for AAI and I couldn’t be more proud of her! She’s been working extra hours to help cover costs. She is a great kid...usually;)

Nick may make the World Championship of Poker after all! He loves the game, and I hope we can arrange something fun before his big day. He can be a big help with the girls when I'm at my witts end. I love him for that.
Aimee is getting ready for her 9th grade dance, and excited to start high school. She has been accepted into a program at her high school to help her prepare for college which is very exciting. Our Jakey boy is the wisest little man around. I miss him being my little guy, but he is growing up. He just loves his brother Nick and understands him so well. Nick and him are extremely close.

Jie Ling informed me I had a baby in my tummy the other day, and also let me know that my boobs were falling down as I was getting ready for work and running around in my bra. How can you not love kids??

Ya Ya has mastered our baby locks, and now gets into ALL the kitchen cupboards! God has answered Mike's prayers that Ya Ya will be our last child...

Only 7 days left of school, and I couldn’t be happier. I’m thinking about living off of my student loans and taking next year off. I need a break from teaching, and would like to concentrate on my family and finishing my masters somehow.