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.

We are praying for you  Callista and sending little butterfly kisses!

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!

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.

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.

                                                                                                         

Learning to Stand Alone

Rachel's physical therapist brought with her this week a pair of wooden platform shoes. They reminded Rachel's sisters of the the wooden Chinese shoes worn by the characters in the book Where the Mountain Meets the Moon. (the book is a favorite of my girls)

The wooden platforms help Rachel keep her balance for standing. They are not good for using with the walker but worked while holding Rachel's hands and walking.

Rachel was able to stand on her own a few times during her therapy session. This was such a great sight to see!

Rachel standing some more and telling Susie which ball she wants. "That one there".

 We have the wooden platform shoes on loan for a week. Yesterday Grandpa Bill and I went to Home Depot and bought the supplies for making Rachel's own pair of platform shoes. We will be sharing the tutorial on how to make your own soon. Grandpa Bill is also busy making Rachel a set of parallel bars and we will share the building instructions on those as well.

One of my friends Julie from work gave Rachel a Little Tykes art desk and chairs. She absolutely loves this desk. It has two lights- one on the top and the other one is located underneath the papers the she has in front of her. The cool thing about the hidden light is that it is a tracing light. We are planning on using the tracing light to start practicing tracing shapes and writing Rachel's name. She loves using crayons. (I have caught both of her sisters squeezing themselves onto the chairs and coloring at her desk- too funny- they are 13 & 11)

Updated version of Rachel's feet. They look so big but in reality they are a baby/toddler size 4.

Little Feet Big Heart

The girls and I have been searching milkweed plants for monarch caterpillars this month.Each year we find some and watch them go through the stages of becoming a butterfly. We haven't found any caterpillars yet this summer. The girls however caught some frogs instead. The first picture is blurry from water on the inside of their creature hut but I love the baby frog sitting on the bigger one. I had the girls return the big frog but we have 5 baby ones. They are currently vegetarians in their lifespan so they are eating lettuce. I am planning on having the girls return the babies as well soon.

Rachel attending a Birth to 3 summer picnic last night. She had a great time. She really enjoyed going up the steps and sliding down the ramp there. She liked seeing other little ones also.

Busted

Rachel has figured out how to get on top of our kitchen table. She first started out by pushing a blue stool over to a kitchen chair. She would then climb on top of the stool and onto the kitchen chair and proceed on to the top of the table. She now has moved onto skipping the stool altogether and just scaling the kitchen chair right on to the table. She is very fast- the doctors forgot to tell us that "yes spina bifida kids do climb".

Caught her on the computer twice this week.

On Father's Day she sneaked up on the kitchen table. I heard a "mmm good". Rachel had helped herself to a handful of cake that we were in the process of making for Grandpa Bill.

Trying to look innocent while plotting her next adventure on the kitchen table.

Playing cars!

Rachel graduated to having a forward facing car seat at 22 months old. She was not sure what to think of it initially.

Today Rachel tried out a new taller walker with wheels that can swivel or be set straight. She did really well. The last few days she had been using her other walker but refusing to use the seat that was in it. No seat with this one.
Both of the videos below were filmed today. Notice what a difference the new walker makes.

(Forgive me telling her sister to move out of the way in the video- but look and listen to Rachel actually picking up her feet- can't wait to try out the new walker tomorrow with her rotation straps on.)

Happy 2nd "First Birth" Fetal Surgery Anniversary Rachel June 7,2011

Two years ago Rachel and I underwent fetal surgery at Vanderbilt University Hospital in Nashville TN. The purpose of the fetal surgery was to repair the myelomeningocele defect (spina bifida) of Rachel's spine. Repairing the defect prior to birth would help avoid any additional nerve damage to her spine that could occur during the remainder of the pregnancy. This was a scary and defining moment for our family. I was 23 weeks pregnant with Rachel at the time of the surgery. If things went wrong during the surgery Rachel would not be with us. We were blessed by God and the hands of the doctors and nurses caring for us. Rachel survived the surgery. Her  surgery date is considered her "first birth" June 7, 2011. Our next biggest obstacle was to keep me pregnant as long as possible to avoid extreme prematurity. Rachel was born at 32 weeks 5 days of pregnancy on August 11, 2011.She was "born twice". Rachel was the first baby born at Children's Hospital Milwaukee that underwent fetal surgery for spina bifida. She was a rock star in the NICU and had many doctors and nurses come and see her- all fascinated by the fetal surgery and her healed surgical site at birth. Today Rachel is a thriving 22 month old girl who has filled our family with more love and faith than we could have ever imagined.

Rachel's defect started at the L4 level of her spine.

 My surgical scar 2 years later. (no tattoos just markers on us both)

Rachel's and my scar- bonded by love.

Happy 3rd Fetal Surgery Birthday Ruth Video

Happy 3rd First Birth Ruth! Sara Ruth's mom made this wonderful and very inspiring video to celebrate Ruth's special day. I love this video so much!I love all of the thoughtfulness and love that Sara put into it. Have your box of tissue near by and enjoy.

http://www.youtube.com/watch?v=RgLbAz4vNoA

Happy 3rd Fetal Surgery Birthday Ruth!