A Surprising Result

And NOT a happy surprise.....unfortunately.

This was Elissa last week during the EEG study. She did a really great job doing all the things the tech asked of her and being patient while they put on and took off all the electrodes.

We got the results of Elissa's EEG today.

We expected her doctor to say that the abnormality that was diagnosed back in 2009 was gone and that we would start weening her from Tripleptal today.

Instead the doctor pulled us from the room we were waiting in, to another room where she had information set up to share with us. Ok, so things are not going to be how I imagined. There were issues with her EEG.

She still has an abnormality in a specific part of her brain that can cause complex partial seizures (clonic-tonic seizures). And then the surprise was that she was also now showing that she is photic sensitive (strobe lights/can be any type of repetitive lights) and that she is having general seizures as well. These are very quick 1-4 second episodes awake and sleeping where she has a non-jerking seizure. The time they last can start growing. We just don't know. The doctor asked if I had noticed any staring episodes and I immediately recalled the times I thought she was just finding her words, she was most likely having a general seizure. I had asked myself several times if she was having a seizure, but dismissed it because she was immediately ok. I lost it a bit at this point. It sunk in what had been happening with her and that most likely she has them at night sleeping too. It really does not harm her, at least at night. But if they start happening during the day for longer periods, she could harm herself.

We are kind of starting from square one again. I honestly have been very lax in thinking about Elissa having a seizure and bringing her emergency kit and letting people know that she is "prone to seizures" when she went somewhere new. I really thought that it was gone. I didn't need to worry about it. We know that isn't true now. We have to watch her carefully while she is swimming and pay attention when she's talking and be close when she's in the shower and she might not be able to ski next Winter. It is real.

So now she needs to be put on a new medicine that is broad spectrum for both partial and generalized seizures. She will continue taking Trileptal as she ramps up on Keppra. In 3 weeks she will have her blood drawn to verify if the Keppra in her system is at theraputic levels or if she needs a higher dose. During this time we will also be watching for severe mood swings. That is the one big side effect that children have or don't. We told the doctor that she already has mood swings, how can we tell?? :-) If the blood test comes back in theraputic range, then we will start weening her off of Trileptal. Then before the end of the year, the doctor will order another EEG. This one may be a 24 hour study so that we make sure and catch all activity that may be going on. If Elissa does not tolerate Keppra, then we will try Lamictal.

It was a hard, long decision on what medicine to go with. There are really no right answers. You just try to make the best decision you can. I SO appreciate our doctor and how much time she takes with her patients. She never made us feel like we needed to hurry up and end the appointment. She just kept on answering questions and repeating answers and showing us the EEG issues. I'm sorry for the patients after us, but thankful for her care. It was really hard to comprehend everything and accept that at this point in time, Elissa is Epileptic.

She even advised us to get her a Medical ID bracelet.

 Aaaahhhh.......it is just so much to comprehend. There is so much to know and you can't possibly comprehend it all. It is so complex.

But in the end, this isn't so bad. So much easier to handle than so many other things that other families are having to go through with their children. We are thankful that she is otherwise healthy and a vibrant little girl.

 If we didn't have struggles, then we wouldn't learn to cling to God and we wouldn't have the opportunity to share how
His grace is sufficient.

We are SO very thankful for your prayers.

Please keep them coming!

Papa did it again!

Wednesday, 6.22.11

Taught another grandchild how to ride a bike.

We knew that Zach was ready to take off his training wheels, but we couldn't get him to do it. We even had his training wheels off a couple of times, but he just wasn't confident to start and stop the bike so he made us put them back on.

Zach spent the night with Grandma & Papa and when I came to pick him up, he was riding a bike with NO training wheels!

Great job Zach!!

Now he just wants to ride and ride.

Good-Bye 1st Grade!

Monday, 6.20.11

Elissa really loved her First Grade year.

It has gone by SO fast.

I can't believe I have a SECOND Grader now.

Elissa and I both loved her teacher, Mrs. Carr.

She was the perfect blend of strict and loving. Exactly what Elissa needed.



Today there was a last day assembly that I'm so glad I went to. All the classes sang a song, there was a slideshow of a year in review and awards were given out. Elissa got one for helping to clean lunch tables on a regular basis. I had no idea that she did this. I was also really surprised when the slideshow was going, all the kids were singing to the latest songs that was playing as background music. I guess I shelter my kids, though Elissa does hear the songs on the bus. Also, the teachers did a show of dance through the years. It was awesome!

Ok, so I just asked Elissa what she would say about her first grade year. This is what she said, "It was kind of boring. We had to sit in chairs all day." Nice! :-]

They were singing "Fireworks" by Katy Perry

Yes, the song is called "Don't pee in the pool".

Elissa was VERY excited to get a certificate for helping clean the lunch tables. Cole got one too. :-)

Then the very fun performance by the teachers.

Elissa's teacher is right up front. She did a great job!

Good-Bye First Grade!!

Another EEG

Prayer Request for my little girl.

Friday she did a little slideshow presentation of pictures she had made on the computer during her computer class.
I can't believe she is finishing 1st grade today!

Wednesday morning at 7:45am Elissa is going to have the first EEG since her initial one in August of 2009 when she had her seizure and was in the hospital. 

EEG defined:  An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activiy.

An EEG is used to diagnose epilepsy and see what type of seizures are occurring. EEG is the most useful and important test in confirming a diagnosis of epilepsy.

PRAYER REQUEST

♥ That the abnormality making her "prone to seizures" would be GONE. She can definitely outgrow the
    abnormality and that is what we are praying for.
     *If the abnormality is gone, then we will ween her off her seizure medication this Summer. Then she can 
       start 2nd grade medicine free!
     *If the abnormality is still there, then we will continue the current course. She would continue to be on 2x
       daily medicine and we would probably do another EEG in a year. If the EEG in a year continues to
       show the abnormality, then she would most likely be labeled epileptic.
♥ That the preperation for the EEG goes well.
     *This is a sleep deprived EEG which means that she has to be awake until midnight Tuesday and then we
        have to get her up at 4am Wednesday - no naps, caffeine or chocolate. I really don't know how we are
        going to do this. We are definitely going to play outside until it gets dark, dark. :-) Zach will be having a
        fun sleepover at Grandma and Papas. Thank you!

We will find out the results on Tuesday, June 28th.

Your prayers would be so much appreciated!

Thank you!

Father's Day

Man vs Food Style!

Darin loves to watch Man vs Food, so I thought it would be fun to take him to the Seattle restaurants that Adam went to.

When we were in San Francisco last year, we went to a Man vs Food sandwich shop. It was a fun adventure to find it and cool to eat at a place that we saw on the show.

So we headed out around 10am (a little late) this morning to go to Beth's Cafe for breakfast. As we drove by it just before 11am and there was a line out the door, we decided to just jump forward to Red Mill Burgers. It's a good thing that we got there right when they opened because by the time we left there was a line out the door there too.

It was good. A little spicy. Worth the drive.
But we wouldn't make a special trip out there again.
It wasn't all that.

But it was fun!
(I was really looking forward to Beth's)

Then we headed to the waterfront to walk through the Seattle Aquarium on this drizzly day.

We even got to watch the bridge go up for a ship to pass thru.

Zach and Elissa were very excited to see the octopus.

The Hawaiian exhibition

Watching the sea otters and river otters.

This is a face we see from Elissa a lot these days.

Yes, she is thrilled to be taking another picture. :-)

Here's a better picture!

We ended our day in Seattle with a trip to Starbucks. YUM!

Then it took the kids 2 seconds to pass out in the car.

It was a good day!

We didn't get to all the things I had planned, but I hope you feel loved and appreciated Dad!!

We love you very much!

Family Bike Ride

We all got new bikes recently, so we were excited to take them out for a "longer" ride.

Today was a fairly beautiful day, so after church we headed to Orting for a trail ride.

The 10 minute ride took us an hour, but we had fun. Zach is just not to the age of wanting to ride and ride and ride. He prefers to saunter down the trails and stop at everything that looks cool. But Elissa wants to go fast and long, so we split up. I took a turn following Zach while Darin and Elissa took off and then we switched.

Zach trying his hardest to fall in.....

It was fun, but we have to remember the limitations of our kids, especially Zach. We have to go at his pace and enjoy his exploring, while challenging Elissa.

Looking forward to more SUNNY days!

Field Day 2011

Lake Tapps Elementary School

Mrs. Carr's 1st Grade Class

Look at that determined face!

It was one active, wet, fun day!