1 Corinthians 13:13

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

Tuesday, August 27, 2013

Making Moves

Rachel worked with a large size Pilates ball this week during therapy. She sat on top and held herself upright. When her physical therapist rolled the ball backwards Rachel kept her core strong and stayed upright. She also worked her core on a peanut shaped Pilates ball reaching backwards side to side to pick up blocks off of the floor. I thought she did amazing- I would have fallen off the back of the ball.
My spina bifida cutie!
We put the locks back on Rachel's walker so she can't roll backwards. She walked to the front door.
Tried to push her walker backwards
Then she came up with plan B
Under and out- Rachel's version of the limbo.

Alicia had orchestra camp for a week and is learning how to play the violin. I am excited for her. She is doing really well practicing. I recorded her first concert following orchestra camp for her to see how she is improving as the school year goes on.I am proud of her. Steve plays both the piano and guitar. He has been helping Alicia learn to read notes and he started to teach her how to play Canon in D. They are planning on starting to learn a song to play for everyone at Christmas. Rachel has enjoyed the extra music in the house.
As I am writing this post we are under a heat advisory and it is probably about 90 degrees yet. As warm as it is there are early signs of fall popping up.
Another sign of fall was the older girls getting their school schedules and school pictures done. I had to bribe the girls for the following pictures. Breanne was afraid we would get caught and she was right. We were busted and I had to confess I came up with the locker picture idea. Thank goodness I am too old for detention!

Seriously? A pencil vending machine- I should have thought of this.
video
Please ignore Lucky's dog bed in the back round (yes he has own crib mattress and blankets). We invaded the man cave to play on the clavanova. It sounds like Rachel is saying "elmo" but she is really saying "piano" as she talks to the baby (herself) while we were filming. She loves Jake and the Neverland pirates and sings "YoHo". Maybe a girl pirate for Halloween this year? We are ending this post with a song and dance. Ignore her crazy baby hair too- with this heat advisory it is hard to keep it or mine under control.


Friday, August 23, 2013

Getting Around

My favorite daisy picture taken this week.
Rachel continues to work on strengthening her legs and using her walker. She walked to the far end of our block and back with minimal assistance. She likes to walk until she gets near a tree and then she takes off crawling over to touch the tree. She usually stands up and cruises around the tree.
Last week we had an impromptu trip to Chicago. We had only about 20 minutes to get ready and I forgot to grab Rachel's AFOs and shoes. We stopped at Grandparents Park and South Park while Steve was busy. The photos are not the best but Rachel climbed the steps and went down the slide on her own several times. The girls and I stood close by in case she needed help but she did very well.
This week we stopped at Holy Hill. My mom's family use to go there yearly when she was a child. My mom hasn't been there in several years. My mom is physically unable to walk the steep hills or climb all of the stairs. We walked and climbed for her and took pictures along the way. I had Rachel in the backpack carrier. Climbing the tower with a baby in the backpack carrier was definitely interesting.
My favorite picture of the trip
A view looking down the stairs in the Tower.
The symbolism of healing- the little AFOs and shoes brought me to tears.

I created a video for my mother of Holy Hill. You can view it on YouTube at http://youtu.be/XYdGCV-mJuw All pictures were taken on this trip with my cell phone.

Monday, August 19, 2013

My Child with Autism video

I just finished up an autism awareness video last night. Please feel free to share and use the video to help bring more awareness. Here is the direct YouTube link: http://youtu.be/zhhlvryFh0Y


Monday, August 12, 2013

Happy 2nd Birthday Rachel!

I am posting a day late due to having to work yesterday. Happy Birthday Rachel! You are 2 years old and absolutely wonderful!We love you beyond measure!
 We had practiced singing Happy Birthday with Rachel for about a week prior to her birthday. She picked up on part of the song- she will sing "birthday happy" and dance. I look at her and wonder where did the time go? It seems like only a short time ago I was writing about having the fetal surgery and later a c-section to deliver her.  I made a set of her footprints to compare to the set I took in the NICU. I am working on combining them into a picture and will post it when it is finished.

Rachel had her 2 year old check up today. She weighs in at 23 lb 1 oz. She is 32.5 inches long. I forgot what her head circumference was but it is on the middle of the growth chart. Rachel was not too happy to be at the doctor's office- she frequently said "bye bye" and "all done".  Overall she is doing great health wise.
Steve and I found this tree while hiking on the Ice Age Trail near Slinger. I couldn't resist trying to capture its beauty and character. I love old trees that have branches with a lot of character and interest. I do not have a fancy camera- I actually do not have a working camera at all- all of the pictures I take are using my cell phone with different lens attachments.
I have been working on taking pictures of daisies. I think I may start a Spina Bifida daisies page on this blog.


Both of these daisies were also located on the Ice Age trail.
Not a daisy but a very playful sunflower Rachel and I found while walking to the post office this past week. I can just imagine it saying "Peek a boo"

Wednesday, August 7, 2013

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.
video
Rachel played her first fair game of picking out little ducks. She won a blue owl inflatable.
 
Breanne and Alicia on the Ferris Wheel

Tuesday, August 6, 2013

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.