New Brace Fitting

This morning Rachel was seen at Hanger. She will be having twister cables added onto her AFOs. The de-rotation straps are not providing enough support for her legs. Rachel's legs have a tendency to rotate inwards from below her knees. This inward rotation is causing her to trip over her feet when she is trying to walk. We are very excited to the addition of the twister cables. The orthotist measured Rachel's waist while she was in 2 different positions. She has a 17 inch waist. The orthotist also measured the length of Rachel's legs. The twister cables will be added onto her current pair of AFOs. We go back in the beginning of September to have them added. We were warned that it will be 1.5 hours long to apply them.

Rachel waiting patiently at Hanger

Good view of how Rachel's feet like to rotate inwards

Bubble time!

Last week our family went to the county fair. We took advantage of wrist band day for the older girls to go on the rides. Both Breanne and Alicia braved it this year and went on the Zipper, Freak Out and the Ferris Wheel together. It was bitter sweet to see them ride together without needing mom or dad at their side.All was fun in the animal barns until a pig snorted at Rachel. She frequently pointed out to the wooden shavings in the animal pens and said "Mess". Rachel was able to identify a bunny, horse, cow, chicken, pig and goose. She had a little trouble remember what the sheep was.

Breanne and Alicia 

The girls had whispered to each other for a week about their plans to try to win a goldfish at the fair. The girls did very well and we are now the happy owners of 3 fair goldfish.

Rachel played her first fair game of picking out little ducks. She won a blue owl inflatable.

 

Breanne and Alicia on the Ferris Wheel

My Child with Special Challenges Awareness on Facebook

I started a facebook page called My Child with Special Challenges. I enjoyed making the 2 videos about spina bifida and the 1 video about down syndrome. I am planning on making more videos to bring awareness about other physical and mental challenges people face. I tried to post the video about down syndrome but it doesn't seem to want to work tonight. I will keep on trying. Here is a direct link to the video on Rachel's Fetal Surgery for Spina Bifida Stories YouTube channel.
http://youtu.be/R_2Szl-sCTE
Direct link to the My Child with Special Challenges Facebook page is
https://www.facebook.com/MyChildwithSpecialChallenges

My Child with Down Syndrome video

I made an awareness video for down syndrome. The video is dedicated to our cousin Katie. I enjoyed learning more about down syndrome while creating the video.

http://youtu.be/R_2Szl-sCTE

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.

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.

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.

The video was made on Animoto's website. I had fun making it and look forward to making more.

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.

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!