Will to Walk

This has been a busy week for Rachel and I. A busy but happy week. On our fetal surgery for spina bifida facebook group we also gave away 2 super hero masks.Our little spina bifida kiddos are true super heroes and defy the odds. The masks are also available to purchase at the Twice Born Boutique in infant, toddler and child sizes.

Here is Dryden's super hero mask.

Here is Miah's super hero mask.

 We also made a super hero mask for Darb. She is Rachel's runner from the I Run For organization. She has been working hard in Rachel's honor. Go Darb Go!

Here is Darb's super hero mask!

Here is Carter with his sister and the sword and eye patch from the pirate play set give away. They are both so cute!Carter is going to need to learn how to use that sword to chase the boys away from his sister!

Rachel giving her stuffed dog a kiss. She is so sweet!

Rachel standing tall. She is rearranging the front of our fridge. I have caught her swinging on the door handle of the fridge trying to get it open. It will only be a matter of time before she figures it out.

Rachel's physical therapist brought over a front facing walker this week for Rachel to try. She has been using it nonstop- as in she hasn't even touched her other two walkers since this one arrived. The problem is she wants to walk with it like her backward facing ones. During her therapy session we had to attach a soft pumpkin trick or treat basket to it and bribe her with candy into her basket. That worked for a while until she realized we were placing the same 2 suckers back in when she wasn't looking. Height wise this one is a little too tall for her yet but she likes it. It is easier for her to maneuver around the house with it. It can fold up and be brought with when we go places. Over all we both like it. In time she will use it in the right direction but for now I am just happy with her will to walk. She has also been doing a lot of bear crawling this week- this is where she crawls with both her arms and legs extended and not bent. Kind of like the yoga position- downward facing dog only crawling at the same time.

Sea Legs

Rachel is trying to get her "sea legs" under her. She has been being brave this week and letting go of holding onto things while she is standing. She looks so hesitant but proud at the same time. She stays steady, then those "sea legs" start to sway and down she goes. I love how determined she is. We have caught her walking along the outside of her parallel bars with just one hand lightly skimming the top of the bar. I wish I would have gotten video of the that. With her "sea legs" and love for Jake and the Neverland Pirates we made a girl and boy pirate playset. The pirate playset was then put into a drawing amongst our Fetal Surgery for Spina Bifida facebook group. We are excited to send them out in the mail tomorrow to Alexis and Carter.

During one of our walks this week Rachel walked about a 1/4 mile with her walker. We took a different route and her toddler curiosity kept her going. I took this picture of her during this walk.

I found Rachel her own student sized guitar. She loves it! I wouldn't be surprised if during her fetal surgery in Nashville she got a little taste of Music Row.

Rachel has an improved pancake with the maple syrup on it this time-lol!

October is Spina Bifida Awareness Month

I have seen so many wonderful spina bifida awareness pictures on Facebook since the beginning of October. I love them! One of the facts that I have seen posted several times is that 64% of pregnancies with a spina bifida babe end in abortion. That is a horrifying number!

Rachel and I getting ready to go down the slide together. I am not sure which one of us has more fun on the slides. Yes- I admit we were at McDonald's again. Truthfully she gets an amazing workout crawling through the tunnels and she is so motivated to go while we are there. (and no I still have not had any french fries yet this year) We were blessed to have met a nice young man (I am guessing 3-4 years old) that would take Rachel's hand and try to help her up over the tough spots. He never questioned why she needed help- he could just see that she did and he stepped up to help her  without being asked to. What a little gentleman! I stopped to compliment this young man to his mom and grandma. It turns out they have a member of their family affected by spina bifida too. Trey (I hope I have the spelling correct) has spina bifida starting at the L2 level of his spine. His grandma is very proud of him and told me wonderful and inspiring things about Trey.  He maybe surprised to know that this was the second person to have mentioned him to our family. My sister-in-law told me about a  wonderful athlete from West Bend High School with spina bifida when we had  just found out Rachel had spina bifida. I have tears in my eyes as I write this- I hope one day he will know how he inspired my family and gave us hope.

 I have started working on Rachel's pirate costume. I had to get creative with eye patch. I couldn't make a skull shape for the front of it no matter how hard I tried. I improvised with a pink heart instead. I will write up a tutorial on how I made it soon. Very easy and the length of the ribbon can adjust to fit those bigger spina bifida/hydrocephalus heads if needed.

I also made Rachel a felt sword. The pattern is from http://gracesfavours.blogspot.co.uk/2013/09/how-to-make-diy-pirate-sword-tutorial.html I love this pattern! There are a lot of pictures that help make the project go smoothly.

Rachel walking around at Breanne's track meet. She has started cheering. "Go Girls Go!"

She got her walker stuck in a tree root.

Rachel troubleshooting the situation. She pulled all the leaves away from her walker wheel and got it out herself.

My parents stopped by and dropped off our annual 50lb bag of potatoes from Crystal Falls MI. There were just harvested and are the best potatoes ever. Our family looks forward to these potatoes each fall. Thank you mom and dad!While my parents were visiting- my dad told me an awesome story. I have requested to receive pictures of his story that I can post here. Working with another friend up in the backwoods of Northern Wisconsin, my dad and his friend cleared away about 400 trees to make a path and an opening in the woods. They then built a ramp and wheelchair accessible tree stand for hunting. They did all of this work so a friend of theirs could enjoy hunting again. Their friend is paralyzed from a fall off of a roof and uses a motorized wheelchair. My dad said they also added a wench system to ramp in case there would be any problems with the wheelchair. My dad said their friend cried at being able to go out and enjoy hunting again.  I say a huge round of applause to these gentlemen! And to Jerry- I hope you get the biggest bad-assed buck out there! I look forward to seeing the hunting pictures.

Rachel kicking it up at the library. Her first trip to the children's section and she did not want to leave. She pushed around a little chair to get around since we didn't have her walker with.

Future nurse or doctor? She loves to use my stethoscope, blood pressure cuff and thermometer. I will have to teach her how to use the pulse ox and she will be ready to go to work. 

 

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.