Sunday, June 22, 2014

A Jewell Never Forgets

Jewell suffers from seasonal allergies, which we have had under control by her taking two different medications daily, or at least until this past Friday. She has the stuffy nose, watery eyes, sneezing, coughing, and now it looks like the beginning of a double ear infection caused by all the sinus drainage. Tonight she requested her ear drops, in addition to her regular meds.

Apparently the last time she needed ear drops was before I found the Eric Carle Alphabet picture that currently hangs on her wall. 
Prior to me finding this picture there was a 3 piece picture of a cottage with green grass. About 10 minutes after I administered her ear drops she becomes hysterical because those pictures are no longer on her wall. They've been gone for months and we already went through the meltdown from the change then. It took about 20 minutes or so to get her calmed down, and we may have bribed her with the promise that we will look for new "3 pictures of a house and grass" tomorrow, after she sleeps. 

Tuesday, June 17, 2014

Knoebels Amusement Park

Saturday, June 7th, we went to Knoebels Amusement Park. We were supposed to meet up with family for Jewell's twin cousins', Ersel and Gemma, birthday party. My cellphone had zero reception, which made meeting up with the family difficult to the point that we never did find them. We did end up having a great time and Jewell got on some rides that she had never tried before, plus even ate some chocolate soft serve ice cream!

Instead of going into a winded description of everything we did, I'll just post pictures!


Thursday, June 12, 2014

4 Paws for Jewell Jamberry Nails Fundraiser!

I am hosting an online party through Jamberry Nail Wraps independent consultant Bobbie Mauss. Jamberry Nails will donate 10% of all purchases to 4 Paws for Ability, and Bobbie has offered to donate 15% of her commission as well! That makes a total of 25% of each purchase being donated to 4 Paws for Ability in honor of Jewell! How amazing is that?

They have a design to fit everyone's style, and it's so much cheaper than going to the salon. They even have Junior sizes too! Check them out here.


Tuesday, June 10, 2014

Possible Future Author

Over the last couple of months, Jewell has been creating stories that she types up on Google Translate. It started out as her typing a few sentences so that she could translate them into different languages (Russian is her current favorite), but it has morphed into her typing longer and longer short stories. Most of the stories are adaptations of stories she is currently obsessed with. The bonus of her using Google Translate is that she can have it read back to her and fix any errors if it doesn't sound quite right. Her sentences are getting better (although she still has trouble with of, a, the filler words) and her stories are getting longer.

Here is what she was working on this evening:

"Moby. I get books. Hey. What is an Eric Carle? The Very Hungry Caterpillar. Brown bear, brown bear, What do you see? The Mixed-Up Chameleon. The book called. The Very Hungry Caterpillar. What is The Very Hungry Caterpillar? One Sunday morning the sun came out and, pop-out of the egg came a tiny and very hungry caterpillar. He started to look some food. On Monday. He ate through one apple. But he was still hungry. On Tuesday. He ate through two pears, but he was still hungry. On Wednesday. He ate through three plums, but he was still hungry. On Thursday. He ate through four strawberries, but he was still hungry. On Friday. He ate through five oranges, but he was still hungry. He built a small house called a cocoon. He in stay more than two weeks. Then we nibbled a cocoon pushed and way out and. He was a beautiful butterfly! Awesome butterfly. The book called. Brown bear, brown bear, What do you see? What is Brown bear, brown bear, What do you see? Brown bear, brown bear, What do you see? I see red bird looking at me. Green frog, green frog, What do you see? I see a purple cat looking at me. Teacher, teacher, What do you see? I see children looking at me. Children, children, What do you see? Roar! The book called. The Mixed-Up Chameleon. What is The Mixed-Up Chameleon? The chameleon saw a zoo. It had never seen so many beautiful animals. The chameleon thought.  How small I am, how slow, how weak! I wish I could be big and white like a polar bear. And the chameleon's wish came true. But was happy? No! White."

Her current obsession is Eric Carle books. I copied the above exactly as she had written it. A lot of it is from her memory and is from her 3 most favorite books at the moment.

Here is another piece she worked on earlier in the evening:

"The Spring. Hi. I'm Bonnie. Pat-pat-pat. Clever's patting. Darla's patting. Ed's patting. But more help. Fast. What's this? It's a butterfly. The butterfly flies in the flower. What's this? It's a frog. The frog jump. It was not me. What is a sound of the spring? A bird. Right. Everyone say. Flap flap flap. Flap flap flap. One more time. Flap flap flap. Lower. Flap flap flap. We didn't"

And another from before that:

"The Birthday Party. Art by Edward Hicks. And. Music by Jonathan Sebastian Bach. Hi. I'm Darla. Ready. Set. Go. Birthday pieces map. First. We need a turning piece. Next. We need a clapping piece. And the end. We need an up and down piece. Balloons. Gifts. And cake. What is the holiday? Birthday. Right. Pat-pat-pat. Darla's Patting. Froggy's patting. Sally's patting. But he was pat. Faster. Turning piece. Does a turning piece? Yes. The library. The books. What is a sound of the birthday party? A party horn. Right."

This one seems a bit inspired by "The Little Einsteins".

She doesn't always finish what she was working on before she scraps it and starts with a new train of thought. I don't care that they aren't perfect. What I care about is getting to see a bit of what is going on in her head after all this time of not really knowing.


So Much For Being Cleared For Seizures

Jewell has had very short duration staring spells since she was pretty young. The earliest I remember her having them was at 3 1/2 years old. Initially I blew them off as her daydreaming, but they did concern me since it was impossible to get her attention during one. It wasn't that she didn't respond to her name, because she never really did that, but it was that she wouldn't even respond to my touching her shoulder or waving my hand in front of her face. Eventually I decided to make a mental note when they happened but not to be overly concerned, because how many different "issues" could she possibly have?

At one of Jewell's visits with her Developmental Pediatrician last year, I was asked if she had staring spells or episodes where she stopped in the middle of doing something, then went right back to doing whatever she was doing after the pause. My heart sunk. At that point, I had kind of gotten used to thinking of them as "just daydreaming" and had never thought to bring them up to one of her physicians. I described them to her doctor and admitted that I was pretty vague on the details, but that she had them on occasion and not very often. They were always really short. We decided to add a visit to a Pediatric Neurologist to get their opinion.

Jewell has had an EEG and a MRI (with sedation), both of which came back normal and gave me that bit of hope that we didn't have to worry about seizure activity. Her neurologist even said that we didn't have to come back to see her, unless something else happened to require further evaluation. I was super excited to knock a specialist off our list!

Then yesterday morning it happened. Jewell woke up happy and singing. She proceeded about her morning as usual. She started drawing pictures, still singing and chatting to herself. After she threw one of her art mishaps into the recycle box, she paused and just stared at the wall. I was several feet away from her and being puzzled at her behavior I went over to see what she was looking at. When I was about 3 feet away from her, she snapped out of it and proceeded to grab a sheet of paper out of her art drawer. When she turned around I noticed her pupils were huge. Several minutes later, it happened again. This time she was retrieving a new piece of paper and had sat it down on the table. She then sat on the arm of the kitchen chair and just stared off into space. I noticed that her pupils were dilated and her expression was blank. I waved my hand in front of her face and said her name, and there was no response. My next thought was to grab the iPod and try to get video (later I realized I should have touched her shoulder or nose to see if she responded). Normally when she sees me preparing to video her she will say "no iPod" or "no video". She said nothing, but made a small noise and snapped out of it before I could start the video. This time she seemed confused and grabbed the clean sheet of paper, balled it up, and threw it in the recycle box. She was very subdued and quiet afterwards, and it seemed like she was tired.

I sent her to school, like normal, and let them know what I observed. They reported that she had a good day and they didn't see any other "episodes". I also spoke with her neurologist and we are back to monitoring her for more episodes like this. The next time she wants me to touch either her shoulder or nose and see if there is a response. She will also be speaking with her Attending to see if we should pursue more testing or just continue observation for now. She did admit that they sound a lot like absence seizures but that they could just be daydreaming, and that absence seizures can take awhile to diagnose or rule out.

I just hope we can figure it out soon. I might need to contact 4 Paws for Ability and inquire about adding seizure detection to Jewell's service dog's duties. It's always something!

Monday, June 9, 2014

Schnoodleware Dog Toys Fundraising Campaign

We have teamed up with Schnoodleware Dog Toys to run a campaign to raise funds for Jewell's Autism Assistance Dog. "Schnoodleware makes a fabulous line of dog toys to do just that. We invite you to browse our selection of colorful unique fleece dog toys and choose one that is just right for your dog. In doing so 10% of your total purchase will be donated directly to Jewell's fundraising campaign. Schnoodleware fleece tug toys are durable, washable and assembled in the U.S.A."

Just enter "4jewell10" at checkout to have 10% of your purchase donated directly to 4 Paws for Ability in honor of Jewell. By using "4jewell10" you will also get 10% off your purchase price.

Tuesday, June 3, 2014

5 Weeks of Fundraising Complete

I was trying to post our fundraising updates on Fridays, but I ended up getting too busy with the actual fundraising projects. Our weekend was full of me keeping Jewell occupied, so again no chance. I promise that I will try to be better about my updates.

Face painted.
We did go to the "Kickoff Celebration for the Summer Reading Program" at our local public library and attended an event called "Mad Science: Spin, Pop, Boom" on Saturday that was really fun. They had tons of activities for the kids, face painting, and a scavenger hunt. Jewell decided to try face painting and insisted the girl give her a beak, as well as a blue bird on her cheek.

Red Bird
White Dog
The "Mad Science" event was a cool show for the kids with a scientist that showed them chemical reactions between things like baking soda a vinegar. Luckily I brought fidgets to keep Jewell busy, but it didn't stop her from wanting to try and give the other kids bunny ears. Not sure why she keeps insisting on doing that.
The Very Hungry Caterpillar
On Sunday, we went swimming at Jewell's Mommom's house. She is very serious about her swimming, and I am thinking she may grow gills and turn into a fish... especially after being in the pool for 6 hours!
Jewell the Fish

Okay, back to the original point of this post!
For week 5 fundraising efforts:
  •  Eddie and I discussed the Yard Sale to benefit 4 Paws for Ability that we want to organize for September. The idea is to collect items to sell at a yard sale and donate all the proceeds to 4 Paws for Ability. Most of the items will not be priced and will be left to the customer to decide how much it;s worth.
  • We also discussed doing a 50/50 raffle. Winner gets half of the pot and the other half goes to 4 Paws.
  • I received the draft from Schnoodleware Dog Toys. They will be donating 20% of sales to 4 Paws, in honor of Jewell, just by using a special code.
  • I mailed out about 16 packets to local hospitals and various other businesses.