Weslee update 2 days after 1st surgery

Weslee is sleeping at this moment but its all as was expected. Except for a little problem during surgery, he's ok. Lots of pain. Nausea. Lots of swelling including right eye swollen shut and looking like a black eye.

Hoping he's better today so we can start learning sign language and start inducing seizures.

Thanks so much for all the letters. He's loving the notes, pictures, movies and just knowing people from all over care about him. We brought quite a lot to the hospital so we can keep opening them, although he hasn't felt like it since we got her. Maybe today?


Day before Surgery

And now for some pictures.

The first two aren't graphic.

First pic: in the red shirt, it's him clowning around the day before the surgery. Look how beautiful he is.

The second is the morning of the surgery, in his hospital scrubs. Wristbands on.  Head just about to be scrubbed.  Trying to get  comfy in the narrow hosp bed.

When we got to the hosp surgery morning, they weighed him ... had lost a total of 8 pounds in just 2 weeks! Probably has lost more in 2 days following the surgery as he didn't eat at all until last night, and then it was only a few bites of pasta alfredo, 2 carrots and a little bit of orange juice.

I sure hope he eats today.

Please keep the letters coming. It's been a rough 2 days and honestly, he needs something to keep him going. He's strong but hates how much pain he's in.

Now ... if you have a squeamish stomach, don't look any further.

These next two pictures can be upsetting. Oh, and the towel on his head to help him remember to not pick at his head, or scratch. His skull plate wasn't reattached and is in a sterile fridge waiting for next week's surgery. We really really don't want him pushing that area and finding out he's missing bone.

This is Weslee the day after the surgery.
Notice the bandage at the right ear.
The incision is bleeding and right into his
ear so we are keeping something absorbant
there.  The blood dripping into his
ear is freaking out. Right eye still kinda
open.

This was last night. Had surgery on Wed, and
this was taken Thurs night. Right eye swollen
shut and bruised.. Face swollen. Blood in his
ear. 



Weslee is Freaking Out

Weslee started asking questions yesterday about the surgery.  Can he have a scar in the shape of a lightening bolt (after his fave movie, BOLT), (answer from surgeon, not really).  Will it hurt. Will his brain feel the electrodes on it. And so on.

Because he's expected to have a speech defect after the 2nd surgery, I bought some learning sign language DVDs and flashcards for us to learn ASL during the week between the first and second surgery. He's not thrilled, but I reminded him that people are donating money and with some of it, we'll buy him a really cool IPAD with a really cool program where he'll just touch the screen and it'll talk for him.  AND use sign language.

(He's also obsessed with writing a screenplay and making a movie based on The Great Dog Robbery .. also known as 101 Dalmatians ... so I got him a couple of books for the hospital on script writing.)

Also reminded him (I had to) he might have other problems, like walking, memories, change of personality. He's really hating that there's a slight possibility that he'll lose his memories. One of his autistic traits is that he files away memories by year and it's really important to him that he keep those. He's hoping there's no change in his personality, but I explained that no matter what, I'll love him and we'll work through it all.

He's so stresssed that he's barely sleeping or eating.  The only thing he's looking forward to is watching the Disney channel at the hospital, and all of these letters (and packages!) that are coming to him.  Keep them coming!

Pic taken the summer after our wedding.
Weslee on the float, Doug in front.

A BIG thanks to you all ... you wonderful people are keeping Weslee from completely falling apart.

I have to note here that I wish the news story had at least mentioned that our biggest support is my husband, Doug. We've been married just over 5 years, and Weslee adores him. Thank you, dear hubby. I'm not sure how strong I would have been if I'd had to do this alone.


Two videos featuring Weslee:
- http://www.youtube.com/watch?v=sWLnFBXPwT0
- http://www.youtube.com/watch?v=v19GF17O2ws

Weslee is a TV Star!

A local TV station reporter Anastasiya Bolton from 9News (www.9news.com) came out yesterday to shoot a story on Weslee, asking for letters to him telling what their favorite movie is, and it went live last night. Already he's gotten a few donations on the www.giveforward.com/awishforweslee page and we're hoping he'll start getting letters in a few days.

Here's the link: http://www.9news.com/news/article/334516/188/Autistic-teen-with-seizures-wants-letters

I can barely wait for him to wake up this morning so I can show him that people really do care about him and are thinking about him.

Meanwhile, remember that we're having a BAKE BENEFIT AND GARAGE SALE this Saturday here on our farmette. Hours: 12-6 or until we're sold out.

What'll we have:
-pasture-raised eggs $3.50/dozen
-farm-fresh rolls (rye, garlic, squaw, and more)
-beautiful cupcakes
-cookies, brownies, muffins
-homemade chocolate candies
-baby clothes and women's clothing
-books
-toys
-whatever else I can find and tag

We also have a buck (intact boy goat - half la mancha half nigerian dwarf) to sell. He's a great sire, short, stocky and sweet. Has 1 horn.

Stop in with a money donation, be ready to buy some goodies, cuddle our orphaned baby goats, and meet Weslee!

Surgery Scheduled

Weslee's surgery is scheduled for 3 weeks from now. LOTS to do until then. We're putting together an auction / bake sale. Working to locate a place and time.  If you're willing to donate gift cards, gift baskets, baked items, etc ... please let me know. THANK YOU for your constant support.

Wada Test Postponed

Got up at 4:00 to do chores. Got Weslee up at 5 and left at 5:20. Drove through snow drifts and on icy roads.  Took twice as long as should have but got to Children's Hospital at 7:00 for the Wada Test but ... ARGH ... postponed!

It's such a specialized test that when the one doc that was absolutely required to be there had to leave suddenly (something about father taken seriously ill, LAST NIGHT), they couldn't find anyone to fill in and do this test accurately. I cried, we bundled back in the car, and then had to face rush hour traffic and stupid drivers on the icy roads to drive the one hour back home, taking over 2 hours.

Hubby hurredly left for work. That's 4 hours of comp time he'll never get back.

Can you tell I'm p.o.'d?  Intellectually I understand why it was postponed, but that just means it'll push everything back again. I really want to get past this waiting game and get my son whole.

Weslee's already showing signs of a big seizure, just from the stress of this morning and getting up so early.  I just sent him back to bed.  I'm gonna too because of migraine. ARGH!

Practice for Wada Test

We braved a blizzard and raining ice to get to Children's Hospital this morning.  Took 20 minutes just to scrape off the windshields! I drove slow, hunched over the steering wheel like a little old lady (ok, I am, almost). Took my time, and only sped up when the icy streets met the slushy streets.

Dr. Buada is the neuro-psych who practiced the Wada test with Weslee.  The test is tomorrow, and because of it's nature, we didn't give all the details to Weslee. Tomorrow is soon enough.

Since our goal is to determine if Weslee has speech on his right side in prep for his 2-step brain surgery, we concentrated on just getting him to talk quickly. No need to do the memory part of the test.

Practicing consisted of ... holding up his arms while counting at a regular pace and somewhat loudly 1 through 20.  Then he had to answer clearly "what is your name" "what is your age" "where do you live" and "what color is the sky".  Then the Dr. held up pictures, words and toys that Weslee needed to identify.  Open your mouth.  Blink twice.  Wiggle your tongue.  Stick out your tongue.

Took about an hour.  Hard time getting Weslee to concentrate so I'll practice more with him tonight (he's napping now) and probably on the way tomorrow.

Snowed the whole way home... came home to find another 6 or so inches had fallen on our property.

I'm really nervous about tomorrow.  If he really does have speech on his right side and almost none on his left, chances are he won't have any speech at all after the surgery. I'm so scared.

==============

In other news, our goat Vida hasn't kidded yet (hope she waits for the snow to stop, in a couple of days), our chickens are liking their new homes but not so much the snow, have lots of eggs for sale, and I'm doing everything I can to find funding to board/train Weslee's service dog and to fundraise for Weslee's medical expenses. Pulling my hair out ... literally!

Pics of Weslee with Neurosurgeon

Finally getting around to downloading pictures from my camera.  Here's some I took on April 4 at Children's Hospital in Aurora, CO. It was a quick meeting, just to go over the results of Weslee's 3T MRI from the week before.

Caught a shadow picture of Weslee in the waiting room, getting ready to lick the top off a drink. Don't you love the silhouette? Obviously I'm not a photographer (especially with this old digital camera) but I try.

Weslee with his neurosurgeon, Dr. Michael Handler. Dr. Handler has a long history of working with kids like Weslee so we feel he's in good hands.  Wow ... just notice the blank look on Weslee's face.

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.

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.