100th Blog Post

Life seems to have pushed the fast forward button this week. I am excited about this being our 100th blog post. Rachel continues to be a wonderful blessing in our lives and I can not imagine life without her. I would not change anything about her including our journey with spina bifida. That doesn't however mean that somedays I didn't wish spina bifida would take a hike off a cliff and never effect anyone again. Little by little we hike farther from the edge and push the challenges of spina bifida further away. What during pregnancy seemed like the end of the world and the end of the childhood dreams we had for Rachel is so far from the reality that we have with her. Rachel has knitted our family closer together. It is every mom's dream to watch her children play, grow and love together and we are blessed to have this however bumpy the path may be at times.

Yesterday we were able to attend Breanne's track meet. Rachel enjoyed the feel of the AstroTurf on the football field.

Rachel cheering Breanne on with Alicia.

Breanne doing the high jump.

I took Rachel on a bike ride today. We stopped at Hobby Lobby to buy 2 pieces of orange felt to make play carrots. Yesterday we made felt eggs to play with. There is a felt egg tutorial on the right hand side of this blog under the pages section. I am hoping to make more felt food over this fall/winter for Rachel. I tried to make a felt cupcake and failed miserably at it.

Felt egg from tutorial

First attempt at a pancake- I realized I forgot to add the maple syrup. I usually skip maple syrup on my pancakes at home so I didn't even think about it until after it was sown together.

Carrot

I also stopped on the way home from our bike ride at McDonald's.I wanted to see how Rachel would do on the indoor play equipment. She ate her hamburger and watched the other kids playing. She observed the slide and then told anyone that walked by that there was a slide. 

Rachel did really well in the play equipment. She needed a little help going up some parts but was able to crawl through the tunnels without any problems. We had another little girl as our tour guide through the play equipment. It was cute! (and yes I made it through all of the tunnels too!) Rachel really liked going down the slides with me.

Rachel has been taking better steps with her twister cables. She has been frequently pushing her cart through the house and outside. She has also been asking to stay "up go" and wanting to hold our hands to walk instead of crawling. I like this.

A Beautiful Tale

A picture of sweetness

Rachel continued to work hard with her twister cables this past week. I missed out on photo opportunities of her working hard. I flew down to Tampa on Tuesday and returned back home late yesterday.

While in Tampa I attended an accredited class for my 30 hour IV certification. Basically this means a semester of IV training scrunched into 2 days. Needless to say I was nervous about how I would do with the time restraint. I passed my certification test with a 98%. Hooray! We had practice arms that we inserted IV's in. The practice arms looked pretty creepy but the great thing about them is they would bleed (red food coloring and water). 

Our practice arm even had fingerprints!I think it would make a good Halloween decoration.

 

While I was in Tampa I was able to stay with my friend Dawn and her family. Our family use to be neighbors with Dawn when we lived in Tampa several years ago. Dawn is one of the strongest women I know. I find her amazing. She is paralyzed from the waist down. During my time there we got to go swimming together for the first time.

Dawn was like a ballerina in the water. 

One of the other things we did was visit the Clearwater Marine Aquarium. The aquarium is the home of Winter the dolphin. If you are unfamiliar with Winter - the movie A Dolphin's Tale is the story about her life. I confess I have not seen the movie yet but am hoping to this week. The movie was filmed at the Clearwater Marine Aquarium. They are closing the aquarium temporarily starting next month to begin filming A Dolphin's Tale 2.

Winter was a baby dolphin that was found entangled in the ropes from a crab trap. She was found by a fisherman that cut her free and called a rescue team. Winter lost her entire tail and 2 of her vertebrae as a result of the injuries sustained from the ropes. Winter was cared for and began a long road of continuous rehab.Dolphins swim in a up and down motion- Winter without her tail swims in a side to side motion. Hanger Prosthetics worked with marine veterinarians and trainers to help create a prosthetic tail for Winter. 

One of Winter's prosthetic tails

Winter

We were able to see Winter, Panama and Hope. We didn't get to see Winter's Dolphin Tale Adventure- a hopefully future trip. I found Winter's story touching and inspiring. I would love Rachel to see Winter one day. Hanger has made a profound difference in both Rachel's and Winter's life.

She's Twisted

Rachel had twister cables added to her  AFOs yesterday at Hanger. Twister cables are metal bars that attach to a waist piece (belt). The metal bars are located on the lateral sides of the hips and extend down to the ankle. The knee portion of the twister cable is hinged. The purpose of the twister cable to prevent inward leg rotation. Rachel is able to still crawl, pull to stand, cruise and use her walker while wearing the twister cables. Her legs are in correct alignment and she now needs to relearn how to crawl, pull to stand, cruise and step while wearing them. Needless to say she is alittle whiny about this today.

Rachel waiting while the orthotist attaches the twister cables to her AFOs

Her robo legs as Alicia calls them attached to her UFOs (more Alicia)

My unthrilled model

Place the waist piece behind your child while they are sitting up with the twister cables extending down each outer side of the legs.

Help your child lay down- you may need to pull the whole set up either up or down to align up the AFOs with your child's feet prior to applying. Put one AFO on at a time.

After both AFOs are on- apply the belt on the waist piece. Put on their shoes and they are ready to go.

Side view of the twister cable while standing

Good view of the hinged knee portion of the twister cable

Short video of Rachel trying to walk with her twister cables on. She moves her right leg really well with them on but the left leg she hooks onto the back of the right leg at times. She also seemed to do better after we locked the front wheels of the walker from swivel to straight.

Rachel had a good day in therapy yesterday. We were able to take a few pictures of her standing up with her wooden platform shoes on.

Rachel was registered to be paired up with a runner from I Run for Michael. I think this is a great organization and idea. We are currently waiting to be matched up with our runner. To our future runner: thank you for sharing your heart and your physical abilities with Rachel. We look forward to cheering you on and getting to know you. We are working on a special picture to share with you.

Rachel sitting on her hopper pony.

Her hopper pony helps work her core muscles and she thinks it is just a toy.

Breanne on her first day of school. She is on the track team this year. She would like to have some spina bifida awareness tee-shirts to wear while she runs. I will have to look into that- the only one we have is the brady steps one we showed in a previous post.

Alicia on the first day of school.

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.

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.

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.