Sports for the blind and visually impaired: Goal Ball

Jimmy playes "right wing"

Jimmy throws the ball

Jimmy had a goal ball tournament today, Goal ball is a sport created for blind and visually impaired with 3 players on a team wearing blindfolds, using a ball with a small bell inside. Players try to block the ball by listening for it. It actually looks quite fun. Jimmy's team lost two games and won one, pretty good considering the teams they played against were quite a bit older than Jimmy's team of 6 and 7 year olds. One team they lost to was 14 year olds. Jimmy said "I did my very best and I had fun" and he was thrilled with his participation ribbon.

car soap

I bought a bottle of hand soap with a picture of a Red Hot Wheels car on the label and a hot wheels logo on it, and put it in the bathroom. I thought Jimmy would get a kick out of it, he loves hot wheels.

Jimmy went to wash his hands and came out excitedly with the soap and asked "is this car soap?"
I replied "Yes it is" thinking that he probably could not see the picture really well.
"can I use it on my hands, or is it just for cars?"

Now he wants to wash the car with it and will not believe it is for his hands "but, mom, you said..."

Jewelery for charity auction site competition update

This is an update on my "Jewelery for charity auction site competition". That I blogged about previously. (Is Ebay the best? and Ebay wins, I think... ) I have started 2 more auctions benefiting the Pediatric Brain Tumor Foundation. I am trying to see which auction site is best. The items I am selling are 2 cultured freshwater pearl & quartz chip bracelets. I have plans to sell more also and I'll let you know when I do.

These are the auctions

Ebay

ArtAndCraftAuctions

Getting new hair for a child- Hair club for kids

I don't know what is weirder, a 6 year old with a comb-over or a 6 year old with hair piece.

When Jimmy decided he wanted to get "new hair" we found out about Hair Club for Kids , a charitable foundation for kids with hair loss. Jimmy is totally bald on the side and back of his head from Radiation Treatments for his brain tumor. He has been "Half- Bald" for allmost 2 years now. I have been so excited for him to get hair. They took measurements of his "Bald-spots" 6 weeks ago and ordered his hairpiece then. Jimmy got his new hair Saturday. We went right after the Candlelighters Easter party so he had his face painted like a bunny.

Before

First they washed his hair. you can see where he lost his hair from radiation therapy

Then they took the pattern they had made for his hairpiece and marked where it would go

They cut off any of the little hairs that he had in that area. Then they put the hairpiece on with adhesive and cut and styled his hair.

After

He really looks good!

Thank You, Hair Club!

Sad news...

Shaylynn

My older brother came home early from work on Wednesday to take his sweet wife to her Dr. appointment and found that she had passed away. His wife Shaylynn was the prettiest nicest person, she was only 43. She had been in poor health all her life, having her first surgery at the age of 3 months. I suppose it was a miracle that she was with us as long as she was. At her funeral the story of Job was told I thought it was so appropriate, it seemed to be her life story. Shaylynn probably did not have a day without pain in the last 15 years, she was frequently too weak to stand or walk. But, I never did hear her complain. Her faith in God never seemed to waiver. My brother was so dedicated to her, she seemed to be his purpose in life. They have both set examples for me to follow.

OBITUARY

Heart 2 Home home makeover

Gabe & Jim with the Jazz Bear

Jimmy's best friend is another 6 year old brain tumor survivor, Gabe. They met at the School for the Blind, they have so much in common my oldest boy calls them the "tumor twins". However, Gabe can't come over to our house to play. He has to have medication and injections every few hours and they do not live nearby so Jimmy always goes to where Gabe is staying at the time. I can't say Gabe's house because Gabe and his family are kind of homeless. Gabe's family has had to move out of their home because toxic mold and electrical problems that have made the home unlivable. The entire family has been living with relatives and friends for months and months, they could not afford rent because they still kept paying the mortgage on a home they could not live in. Gabe's 2 little brothers who have major health problems of their own have each had surgeries in the last 3 weeks

Well Monday their house got torn down, now they are really homeless, but only for a week. Just before Christmas Gabe's mom, Mandalina, called to tell me some wonderful news, a local foundation, Heart 2 Home, decided to do an "Extreme Home Makeover" style demo and re-build of their home. They sent the family on vacation while their home is being torn down and re-built.

Gabe and Jim on top of a fire truck monday with the Jazz Bear and the Mayor

We got to see them tear down the house on Monday. What really impresses me is this is all done through donations and volunteer work. Not one of the hundreds of people involved is being paid for the work that they are doing, and everyting is being donated.

To see more of this story:

About the family

Read more of their story and see news video clips

See the home being built LIVE

Jimmy fixes the dog

"Fix" by Jimmy

Jimmy came home from school the other day with this picture. He did it all by himself, It is a picture of our dog, Buddy, with the word "Fix" written across the top.....

MY first thought was "What are they teaching my little boy at school?" When I asked Jimmy about it he told me that he was supposed to write a spelling word and draw a picture. In his mind there is no connection at all between the word and the picture. So I put the picture up on the fridge and just laugh every time I see it.

Is it my imagination or does the dog wince whenever he walks by the fridge?

Woohoo!!!!!

It was the usual Looooooong MRI day Wednesday. We had to be up at the hospital at 8am for Jimmy's blood work labs and I.V. and then to MRI at 8:45, they always want us there an hour before his scheduled MRI time, so we wait for an hour and fifteen min., because his MRI was delayed until 10:00. Then we waited two hours for him to wake up, another half hour for him to be able to sit up, drink something and get his I.V. removed. Then we ran to the cafeteria to get him some food because he had not eaten since last night. At 1:30 we went to oncology where we sat for another hour while various doctors and nurses checked him out.

The good news: We were out of there 2 hours sooner than I thought we would be.

The really really good news: the "lit up" area that the radiologist saw on the MRI 3 months ago was not "lit up" now so no worries there. and the other 2 spots were "stable" WOOHOO! So no MRIs for six months! that is the longest we have ever gone between MRIs.

Worry, fear and MRIs

detail from "Angry Jimmy"

I was in the grocery store, when it happened. I was attacked by FEAR. I felt like I stopped breathing, thought I was going to throw up or pass out.

I had looked over at the little display of Hot Wheels cars and thought I should buy one for Jimmy. I would like to have a little prize to give him when he gets an I. V. for his MRI tomorrow. Then I thought about what I have been avoiding thinking about for months: what the results of his MRI will be: We have been watching 2 spots that first showed up on his MRI 5 months ago and another area that is "very concerning" that showed up on his last MRI 3 months ago. I am not feeling very good about this MRI tomorrow I keep thinking that these two things are tumors or at least one of them is, It just does not seem probable that it could be anything else.

I thought about: how I will tell him he has a brain tumor again ?, or will I try to hide it from him when he wakes up and my heart is breaking, just thinking of it now makes me feel ill. The surprising thing is I have not been obsessing or worried about this for the last 5 months since we got the first bad MRI. I guess I have learned not to worry and I have been blessed with peace, but it wasn't worry that made me feel feel so awful in the grocery store today, it was fear. I don't want to face tomorrow, but I also am looking forward to it, depending upon if I am feeling hopeful or afraid. I guess knowing is better than not knowing.

I bought Jimmy a hot wheels car to give him tomorrow and went home to give him an extra hug and kiss.

Ebay wins I think...

Here are the results of my little "auction experiment"

Ebay:

The bracelet sold on ebay with 1 bidder for $4.99 I cost me $1.14 to sell on Ebay.

ArtAndCraftAuctions:

The bracelet did not sell on ArtAndCraftAuctions it cost me $.30 to try and sell it. but, I re-listed it for free and if it did sell then there would not have been any "final value fees" so it would have cost me $.84 less to sell there.

The interesting thing is that I had exactly the same amount of viewers on each auction, and only one bidder on ebay. I think I will try this again and start the auctions at $.99 and see what happens.

Sick again

Well we've done it again!

It started with Jimmy He has had a really yucky runny nose for about two weeks now. I was worried that because of his congestion they would not be able to do his MRI next week because he needs sedation. Then I started to feel really sick Friday evening, it was a real familiar sick feeling, nausea, really sore throat, fever, aches, I knew what I had STREP THROAT AGAIN! So Jimmy and I went to the insta-care (boy did they name that wrong) and 1.5 hours later we saw the doctor. They weren't used to children like Jimmy there I'm sure. He sat right down and started putting the blood pressure cuff on and asked if he could take his own temperature. It is kind of funny how this 6 year old just takes over a doctors office.

First the nurse looked in my throat and took a throat culture. She then asked Jimmy if he had a sore throat or if his head hurt. Jimmy of course said no. I told her that I thought Jimmy did have a sore throat because of how he was acting but he will never tell us when he is in pain. So would she please check him. She looked at me rolled her eyes and said she would take his word for it. When the doctor came in he asked Jimmy if he had a sore throat or if his head hurt, with the same answer and explanation from mom the doctor did look in Jimmy's throat and said it looked very sore. He pressed on Jimmy's forehead and decided that he had a headache. He then asked the nurse why she didn't do a strep test on Jimmy. Sometimes moms do know what they are talking about.

Well the doctor diagnosed Jimmy with a sinus infection and probably a strep throat and I definitely had a strep throat. Saturday evening son #2, Came down with Strep throat, Monday Son #1 and #3 were sick and today my hubby is complaining. We are all on antibiotics now. I still don't feel well but I am better than everyone else so guess who gets to play nurse to 5 people?