Easter, Hope, and Neurofibromatosis

Hello! I hope everyone had a wonderful Easter.
We had a great time,  just the three of us. The Easter bunny made his visit and gave Brenda candies, coins, a book, and nail polish.
My decor was nearly the same from last year,with very little changes.
While Spring cleaning,  I found an old Easter basket that I made for Brenda when she was almost two years old.
The cute flower buttons were recycled from one of Brenda's baby dresses. I added a bit of felt, ric-rac,  and hand embroidery.  Here are some pictures I took just before Easter.

And here is baby Brenda with the basket in 2006. She got a delicious Brazilian Easter egg that year :)  How I miss the Easter eggs from my country!

I just love these pictures! But that was a difficult Spring for our family.  It was when Brenda broke her leg for the first time.  She had just started walking some months before.  We knew very little about her condition that time,  and were even accused of child abuse.  It was very scary.
Anyways, back to this year.  We had a delicious Easter dinner and appetizers.
Brenda and Daddy made Deviled Egg Chicks from Family Fun and Pinterest .
The green plate was my birthday gift, a set of two.

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For dessert I made Brazilian  Pineapple and Cream . So good!

Springtime is so special.  A time of growth and renewal, and Easter is a time of hope and faith for Christians.  We are very different from the Spring of 2006.
It has been quite a ride for us since we found out about Brenda's Neurofibromatosis.
We are more mature now, and have learned a lot about NF.  Our faith has improved over the years.  We have found great doctors and some amazing families that live with NF like us.  It give us hope and support.  Brenda is doing very well.  She is a sweet little girl that has great faith in Jesus Christ, and we are very proud of her.

We are on Spring break this week with lots to do. We are doing Spring cleaning, gardening, a play date,  and going to the movies to see Mirror, Mirror.  I have some projects to share,  but it will be for another post.
Have a wonderful day!

Ana Paula.

Summer

We are having a stay cation this summer just doing local trips.
We also joined the summer reading program from our local library. We just finished it.
I will share some pictures of our little adventures. First, a Fourth of July celebration and breakfast at church.

Some days later we were invited by friends  to go to the Paul Getty museum in Los Angels.

On the way back we stopped by the LDS Los Angeles Temple to see the newly remodeled visitor's center.

Of course we had a day at The OC county fair. Brenda got a new "carriage".  It helped a lot, since walking the whole day can be difficult for her.

Fair food can be  weird like bacon dipped in chocolate and fried butter. The corn looked good, but we got  fennel cake with strawberries and went to a restaurant after the fair. A lot healthier!

At the crafts building they had some lovely things.
Beautiful quilts.

I love redwork. And Swedish weaving.

My favorite quilt was the one hanging on the middle. Amazing work!
Now the cross stitch. This one really looked like a painting.

More beautiful pieces.

I liked this one... so cool!

We also spent some days in San Diego where Brenda among  many other activities, built a sand castle with grandpa.

But the best thing this summer was our  visit to Brenda's leg doctor.
She is doing very well and now she is allowed to use the slide at the playground. When it is not crowded, to avoid accidents. This may sound like nothing for many, but for us it is huge! She is so happy, and we are too. The doctor even recommended walks around the block.
If you want to know more about Brenda's condition please visit The Childrens Tumor Foundation website.
Brenda does her best to follow the doctor's orders, but she is just a seven year old that wants to do all the things the other kids do. It is very hard for her to be "normal" but not to be able to do normal things. She is a very faithful child, and before the visit to the doctor she told me that she wished  the doctor let her to do "one thing"...meaning less restrictions at her play time.  And she got it!  Yes, life is full of little miracles and my little princess believes in it.

Hope you are having a great summer.
Thanks for stopping by!
Ana Paula.

Brenda's Cooking Class.

Last Christmas, Brenda got a cool cookbook from Santa:  Kids in the kitchen by Gooseberry Patch. It is a very cute cookbook with lots of easy recipes and even things like homemade face paint , bubbles and dog biscuits.
She can't  really do sports or other physical activities because of medical restrictions due to her Neurofibromatosis / Pseudoarthrosis. We are planning other after school activities for her in the near future, but for now I decided to have a "class" with her every Tuesday when Dad goes to Cub Scouts.
So, every week we pick something new to do. Most of the time it is a little craft, and we always have a little treat at the end, like cookies or ice cream. Sometimes we cook something, and eat our creation.
She really looks forward for the classes, and calls it girl's time.
So, some weeks ago I told her she could pick any recipe from her cookbook.
The day before the class we went grocery shopping and she picked all the ingredients she needed.
You can see how happy she was making the recipe she picked:  Cups of dirty with worms.

Please excuse my mess. I had bags of fabric all over and the sewing machine on the table.
Happens when you live in a small place.
But, we had a great time and had lots of dirt to eat! :)

Thanks for stopping by !
Ana Paula.

Race day party and new followers!

Hi!
Saturday we went to one of  the Children's Tumor Foundation local events.
The Children's Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

What is Neurofibromatosis?
Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves.  NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

My little girl has Neurofibromatosis 1, as some of you may know.
She has no tumors. We pray everyday about that. But she has bone deformity, or pseudoarthrosis on her right leg. This means that her tibia was very week, and as she started walking the bone could not handle her weight anymore. She broke her leg two times. It was a very difficult time for us.
At  two and a half years old she had a surgery to correct her leg.
We have no NF history on our family. Brenda's condition comes from a "spontaneous mutation".
To make a long story short, she now is 6 and a half years old, and has a pretty "normal" life.
She wears a brace to protect her leg, and has some  restrictions that are very difficult for a first grader.
She can't run or jump, go on the slide, swing or monkey bars. The risk of breaking her leg still there.
Many days she comes home from school and tells me that nobody wanted to play with her. It breaks my heart. I try to make her understand how the other kids like her but also like to run and jump.
The school  makes special adjustments for her on PE classes and other activities.
So, we have a little china doll, she is beautiful and we love her.
We don't know what the future will bring. She has a "mild" case. But things can change. NF can bring many issues. We trust the Lord and she is on His hands.

The foundation has a car that is every year at the 24 hours of  Daytona for their Racing for Research program.
Saturday, the local chapter had a party here at the  Los Angeles area.

The raffle table. See my Valentine's Basket there?

Brenda, Kelly ( the Foundation's representative at the Los Angeles office) and Ray, another NF hero.

Brenda and Ray helping with the raffle.

Some of the kids making bubbles.

The race is over and it was a success, but the "race" against NF is everyday.
Next year the car will be at the 24 hours of Daytona again, and we will be fundraising  for this and other events through out the year. One day they will find a cure.

Now, the swap party!
Amy, from Petal picking designs is following me...and I am following her.
She has many darling projects on her blog.

Jordan, from Military spouse house is a very creative lady. Many great ideas on her blog.
She is following me, and I am following her now.

That's how the party works: I follow you,  you follow me.

Here is the link for the Swap party again. Please join us.








Thanks for stopping by.

Ana Paula

Valentine Hat and Scarf

Hello!
Today I want to show you a set of red hat and scarf I made to donate to the Children's Tumor Foundation.
Every year they host local little parties on different parts of the country to watch the 24 hours of Daytona race.
The Children's Tumor Foundation has a car on the race with the purpose to raise money for reaserch and  awareness to Neurofibromatosis.
My daughter Brenda has Neurofibromatosis 1.
We try to help participating in events, raising money for reaserch any  way we can.
So, I decide to make the hat and scarf set  to be used on the raffle at our local party today.
It a very simple set, fast and easy to make.
For the hat, I used a loom from Provo Crafts. I love these looms. I have made many  hats just like this for charity events at my church.

I used Homespun and Fun Fur from Lion Brand for the set.

I made the scarf using regular knitting needles.
I put the hat and scarf  together with some Valentine candy on a little wire basket from the Dollar Tree .

And here it is, ready to go! I hope this can help the event today.
Thanks for stopping by,
Ana Paula :)