Update for Weslee's epilepsy

We met with his 2 epileptologists yesterday, along with hospital's rehab doctors, hospital child life coordinator, and his neurosurgeon. Several things. Because of his rapid degeneration, they are concerned about Rasmussen's encephalitis so waiting for results of Thursday's 3T MRI to see if that's a possibility. If so, will need to do surgery quickly.

That MRI (it's a very high resolution MRI, done at a different hospital) will also show if damage on left side (seizures happening on right frontal lobe).

Also, 95% of people withOUT epilepsy have speech only on one side. It's slightly more common in epileptics to have speech on both sides. Weslee is right handed so his speech should only be on left. But because of his speech regression, concerned that he might also have speech on his right. Going to do a "Wada Test" to determine that. It'll take 4-6 weeks before that can happen, although I'm pushing for quicker.

The epileptologists said this is one of the more complicated cases they've seen, with many layers and quick progression.

Talking about a hemispherectomy (see: http://www.youtube.com/watch?v=Qckrx9DdNfg and http://www.youtube.com/watch?v=rsHpXNIgobI, and another story: http://www.youtube.com/watch?v=D0njlDSFie4 and http://www.youtube.com/watch?v=pVTWDuwDkoc), whether or not the grid mapping is done.

Basically, he could be absolutely fine after the surgery (regarding epilepsy) or he could be a vegetable.

Make-A-Wish Colorado ... we had to go into town this past Saturday so we went to Best Buy so Weslee could spend his MAW gift card on movies. Had a tonic clonic (grand mal) seizure in the store. Huge thank you to the passersby who stopped and asked if they could help. I'm thinking we'll spend the rest of the gift card online.

Keeping him safe and happy while being confined to the house is difficult, but my priority. I need to find someone in this area to take over the Friday Farmer's Market ... perhaps even change it to a different day. People can still special-order baked goods, eggs, and produce, and pickup by appointment.  I do still intend to bake but once he's in the hospital, it's going to be difficult to do from the hospital room!

Once Weslee's in the hospital for surgery, people can arrange to pickup eggs and produce from Hubby. No baked goods because he's really not good at that!

Your continued support and healing thoughts are appreciated. Thanks.

BTW, I'm falling apart.

Pix from Make-A-Wish Colorado

As promised, here are the pictures from when Shell and Allie from Make-A-Wish Colorado came here for Weslee. They took our yucky and bare main basement room, added a loveseat and beanbag chair, a big flat-screen TV, surround sound, blue-ray disc player and some movies. He loves it!

Here's Weslee sitting on his new bean bag chair (SitSational). Very comfy. Delivered in the morning by American Furniture Warehouse and now impatiently waiting for Make-A-Wish people to come!



Allie brought lots of ice cream (this is only a small sampling) plus pizza, a big basket with movies and toys and candy and snacks.  Ooops, just noticed Weslee's double-hat is crooked. Again.

Wow ... what a lot of pizza!  Even brought cinnamon-sticks and soda pops. Good thing I had paper plates and cups.

There's Weslee in front of the big flat screen TV, playing with the light saber (did I spell that right?) that he found in his goodie basket.  Hmmm... wonder if I need to get one for Doug too?!?!

We took this picture before friends Stacy and her daughter Sara showed up.  Who was behind the camera?  Weslee's high school teacher, Lori Biggs. So glad she made it to see him.  After Shell and Allie left, the other 3 were about to leave when we discovered Weslee stuck at the front door, having a big ole seizure. It was several minutes before we could move him so they could leave.

A HUGE thanks to everyone involved with Weslee's Wish. He loves spending his mornings watching movies on the big TV and flopping on to the comfy loveseat and beanbag.

 

 

NOW, it's time to other stuff:

I took this pic last Friday when I was making chocolate frosting for the Chocolate Cherry cupcakes. I had been asked earlier if I bought the stuff pre-made from the grocery store or if I made it myself.  I felt I really needed to take a pic to show... YUP, I sure do make it myself!  Butter, powdered sugar, organic cocoa, and sometimes vanilla, spices and goat milk. Remember to order your cupcakes on Wednesdays for Friday pick-up, and that we're doing this "Baking For Weslee" to raise money for Weslee's medical and living expenses.

Oh em gee ... just got the bill from Weslee's February hospital stay ... over $42,000!!!! Good thing insurance paid most of it. Thing is, that's withOUT surgery and ONLY for 5 days! I am SO not looking forward to the bill for the next hospital stay that WILL be for surgery (probably 2 at least) and all that includes.

Anyway ...

Got a LOT of snow on Saturday.  Doug wanted to test out the new "Snow Joe" I had bought him just the week before. It really was necessary since the week before, it took the two of us a complete day digging out his 4WD.  We really needed that day's pay so this machine makes sense. Notice how deep the snow drift is where he is. And this is our front yard!

Last but not least, I took this picture this morning of my brace. Just ignore the big ole fat legs.  The brace on my right leg is supposed to be on from the minute I hit the floor in the morning until I go to bed at night.  Until I have surgery, which I'll discuss AFTER Weslee has his and has recuperated.  The cloth wrap/brace on the left leg is probablly just until I get a permanent metal brace like the one on my right leg.  I'm thinking I'm gonna have to wear skirts from now on.

Make-A-Wish Here Tomorrow

Just got the final word... Make-A-Wish Colorado will be here tomorrow to grant Weslee's Wish ... a movie room in the basement.  (He really wanted to go to Universal Studios for a studio behind-the-scenes tour but since we can't even drive to town without seizures, a trip was out.) 

American Furniture Warehouse will be delivering the sofa in the late morning. Then the wish grantor, Shell, will be bringing the big screen TV and hooking it up while a second wish grantor (Allie?) will be bringing the blue-ray player, movies, the pizza and ice cream. We've invited a friend who has an autistic daughter the same age, and his high school teacher. Hoping my MIL can come too.

Weslee's degeneration is getting worse. He threw a 3-year-old's tantrum in Wal-Mart yesterday, with the stamping of feet, and running to where HE wanted to go. NOT good... for a 160 lb, 5'8" 16 year old, and especially difficult for me to chase after him with one leg in a metal brace and the other in a Mueller-brace. I still can't walk today. Weslee doesn't remember much of it at all.

Board of Neuro docs met yesterday. All agree to go forward with surgery, but they need a bit more info first. It's possible that Weslee's personality and intellect degeneration is caused by the meds and/or the seizures, and they need to know the extent of it. They've ordered another MRI. That will determine if they do the two-step surgery (grid-mapping then taking out the effected parts) or a different kind of surgery. Keep sending your best wishes.

Meanwhile, tomorrow's going to be a busy day. Guess I should clean first thing tomorrow! Then first thing on Friday, I'll start baking to fill cupcake orders. I'm making extra of the chocolate cherry and the cherry cola so that we can eat some too.

Another WHY WE DO THIS Post

Here's a picture I took last week of Weslee and Krypto.  Krypto is a white (yellow) lab about a year and a half old. We got him as a very young puppy to be Weslee's seizure-alert / autism dog but ran out of money and time (and energy!) to train him.  Raising money to get back at that (well, you should know if you are one of our cupcake customers!).

Aren't they cute?

Weslee had a rough day on Friday. We had a full day starting with me getting my permanent leg brace on, then off to the Children's Hospital for 5 and a half hours of Weslee doing some intensive pre-surgical psych evaluations and interviews. The day away from home caused a LOT of seizures so by the time we got home, ate a late dinner and did night-time things, he was ready to pass out. And did. Saturday was a little bit better because he slept until about 10 a.m.!

We'll know by March 6 or so if they are going to go ahead with surgery, or if they have something else they want to try.

Torn ACL. Probably.

"Sprained" my knee that first night Weslee was in the hospital, right? Two Mondays ago. The ER took xrays and said it's probably just sprained. Stay off of it.

Yeah, right.

How do I stay off it when I have to pick up a 156-pound boy off the floor after a grand mal seizure?

Sorry.

Anyway, the pain was getting worse and worse, so last week I made an appointment for today with an orthopedist. Barely touched it, tried to manipulate it, I bit back a scream of pain ... yep, it's probably a torn ACL.  From the mayoclinic website: "An ACL injury is the tearing of the anterior cruciate (KROO-she-ate) ligament, or ACL, inside your knee joint."

They sent me for an MRI to confirm the diagnosis, and I'm supposed to go back in a week to further discuss. Meanwhile, it's pain killers, ice packs, and trying to stay off it.

That means no baking or cooking.

And THAT means no Friday Farmer's Market for at least a week.  Sorry about that.  I hope to be able to get around at least a little bit to do some Valentine's Day baking. If you have Val Day cupcake needs, please contact me before Feb 12 to discuss. I should be able to sit on a bar stool and get some done.

This month's cupcake flavors. Note that I can make any of these as a Valentine's Day cupcake ... something sweet for your sweet!

-WHITE ON YELLOW
-CHOCOLATE ON CHOCOLATE
-SWEET SNOW
-ROCKY ROAD
-LEMON SCHMEMON
-PISTACHIO CHOCOLATE CHIP

And as I was typing this post, my husband calls me into the kitchen where my son was having another big seizure. It took both of us to keep him from collapsing backwards again.