1 Corinthians 13:13

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

Wednesday, June 26, 2013

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.

Monday, June 17, 2013


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.)

Thursday, June 6, 2013

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.

Wednesday, June 5, 2013

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.