1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Monday, July 29, 2013

My Child with Spina Bifida

With the upcoming school year getting ready to begin soon I created another video. This video is geared towards teachers and caregivers. This is something I would be emailing to Rachel's school and teacher if she were of school age. If she were ever to need daycare I would also be sharing this video with them.
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I created this video to be shared so please share it. It is also available on Rachel's YouTube channel- Rachel's Fetal Surgery for Spina Bifida Stories.

Friday, July 26, 2013

Spina Bifida Basics Video

With help from our spina bifida friends and family I made a short educational video about spina bifida. It does not go too far into depth but I am hoping it will give some understanding.
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The video was made on Animoto's website. I had fun making it and look forward to making more.

Tuesday, July 23, 2013

Finding the Right Motivator

Tonight we went to our nephew Max's double header little league game. We are proud of you Max!
Rachel spent the beginning of the first game crawling around in the grass with a football. There was a little boy who walked up to her a few times and they threw the football to each other in toddler fashion. We later learned that the little boy's name was Aiden and he turned 2 back in March. During the second game Rachel joined Aiden on the top of the bleachers. I was unsure of what she would do on the bleachers but they were built so she couldn't fall off of the top or slip underneath. Aiden must have been the right motivator for Rachel. She stood up on her own a few times and cruised along the bleachers. She bounced and got in a lot of her physical therapy moves.
These pictures were too cute not to share. If we only what they were talking about!
Rachel trying to sneak in a kiss! She really enjoyed cruising the bleachers with Aiden. Thank you to Aiden's family for letting us share pictures of their cutie!

Rachel had a renal and bladder ultrasound this morning followed by a urology appointment. Good news that her kidneys and bladder continue to appear healthy and are growing the appropriate size for her age. We are praying to stay  on the no UTIs streak that we have been on. We have been very fortunate that she has not had a UTI yet and she will be 2 years old next month. We also signed up for a study that Children's Hospital is part of to learn more about the inter-relationship of spina bifida and urological issues.They are hoping to use the data to help future patients.
I finished painting my spina bifida mug last week. My Aunt Helen had a "puffy" type ceramic paint that I used on the angel wings and spina bifida daisies.
I added 2 spina bifida daisies along with Rachel's lesion level to the empty side of the mug.
I was unable to fit Fetal Surgery at Vanderbilt with the date on the center of the mug. I opted for the yellow spina bifida awareness ribbon with FS (fetal surgery) SB (spina bifida). I can't wait to see how the mug turns out after my Aunt Helen fires it in the kiln.

Monday, July 22, 2013

YouTube Here We Come

I recently started Rachel a channel on YouTube. It is called Rachel's Fetal Surgery for Spina Bifida Stories. I am in the process of constructing her channel. I will add some links soon. We would also love to add videos of other spina bifida kids to her channel. We are looking for both kids that have and have not had fetal surgery. Our hope is that by reaching out we may inspire others and give hope to parents whom have been given the diagnosis of spina bifida for their child.

For those who would like to be featured on Rachel's YouTube channel- please email at oceangirl0702@gmail.com Please include your child's name, age in the video, lesion level, if they had fetal surgery and any links to your own blogs or facebook pages that we can add to the video description. Thank you for sharing!

Wednesday, July 17, 2013

Prayers and Butterfly Kisses for Callista

Please take a moment to say a prayer for Callista. She is a member of our spina bifida family and she is undergoing a chiari decompression surgery today. This is Callista's second decompression surgery. You can follow Callista's journey at the link listed at the bottom of Rachel's blog.





Cover PhotoWe are praying for you  Callista and sending little butterfly kisses!

Tuesday, July 16, 2013

Rising Up

Grandpa Bill finished making foot pedal risers for Rachel's tricycle. I added info on how he made them under the pages list on the right hand side of the this blog.
Rachel loves her tricycle. She doesn't have the leg strength yet to do a lot of pedaling but I am confident she will get there. With her feet strapped to the pedals when you push the tricycle her legs get a good workout and she is learning the movement of bicycling. Her physical therapist was able to see Rachel on her tricycle yesterday. She had stated that the motion of pedaling is a skill for ages 2.5 to 3 years old and that having strong hips for pedaling is good. 
Rachel has figured out how to get on her tricycle without getting her one leg stuck.

Rachel used a 3 lb weighted vest during therapy yesterday. She wasn't too big of a fan of the weighted vests and was trying to avoid standing up with it on as best as she could. I think we may have to break out the marshmallows for when she wears the weighted vest.
This is a design that I am found online from a tattoo artist. I am using it to paint a spina bifida mug at my Aunt Helen's house.
Design prior to adding ceramic paint.
With 2 layers of ceramic paint- I can't wait to see the results after it is fired in the kiln. I am working on ideas for the middle and  other side of the mug. I would love to stencil on Fetal Surgery for Spina Bifida at Vanderbilt June 7, 2011 in the center of the 2 designs. I think I may add the Spina Bifida daisy and yellow ribbon as the other design. I will paint the inside of the mug with the matching color of the cross. I will post pictures when complete. Thank you Aunt Helen for being a great teacher and giving my girls and I the opportunity to get creative!

I also want to say "Hi" to my Aunt Sue in Cedarburg! Rumor has it she is now able to get online and follow Rachel's blog. My Aunt Sue was also born with spina bifida and I would love for her to share her story with all of us. She too is a miracle!

Monday, July 8, 2013

Going for a Ride

I found Rachel a Radio Fl yer tricycle at our local Goodwill. I hesitated buying it at first in fear she would not be able to use it but I was suckered in by the price $1.99. You can't beat that and I figured if she wouldn't like it we could donate it back. As soon as I brought the tricycle into the house Rachel immediately tried to climb on it. She was able to get herself onto the seat but got one leg stuck underneath her. She grabbed the handlebars and was not letting go. After getting her legs situated we pushed Rachel around the house on her bike. She is just barely able to reach the pedals. I grabbed some Velcro pieces I had and Velcroed  her feet onto the pedals.
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Rachel loved the tricycle so much we ended up spending the rest of the night helping her with her bike. Her feet would slid out of the velcro straps I put on the pedals. Grandpa Bill is busy engineering foot pedal extensions with strapping to keep her feet in place. We will share his plans once he is done.
Rachel and her daddy waiting for the Fourth of July parade to begin. Rachel enjoyed the parade and the fireworks at night. She kept us busy while we were waiting for the fireworks to begin. We brought with a small basket full of toys to keep her entertained. She would throw her toys off of the blanket and then look to see if you were watching before taking off at a high speed crawl for any nearby trees or other blankets. During the fireworks she would point to the sky and say "pretty". About half way through the fireworks she fell asleep.
Steve returned from his 3 week trip to Mexico. He had some great experiences and met new friends. The picture above and below  is from one of the mountain springs he visited while in Mexico.
We are glad he is back home and have been learning new Spanish words from him. Three weeks of managing the kids, Lucky, the house and work alone has given me a great respect for the single parents out there.