1 Corinthians 13:13

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

Friday, May 31, 2013

Children's Miracle Network Ambassador Visit

Today Rachel visited our local Walmart to say "thank you" to the employees that work hard to raise funds for the Children's Miracle Network Hospitals including Children's Hospital of Wisconsin.
Rachel coloring her picture for her visit.
We love that the picture she made had daisies on it. Daisies are a symbol used to represent spina bifida.
Rachel with some of the WONDERFUL ladies that work hard to support the Children's Miracle Network. Thank you ladies for a job well done and thank you to the camera man Jesse. We had a great visit.

Wednesday, May 29, 2013

Retro Reels Found

I finally figured out how to upload the movies we made a year ago using the 8mm film app. The one below is from 1 year ago about 1 week from our fetal surgery "first birth" anniversary.Rachel was about 9 months old in the video.
The next video is exactly 1 year from the video above. What a difference a year makes! I am so proud of all of the hard work Rachel has done.

Happy Memorial Day (a few days late) to all of the service men and women past and present. Thank you for your service!
Miss Rachel awaiting the start of the Memorial Day Parade. It was about 60 degrees outside and drizzling for the parade. She liked the marching bands.
Paying our respects at the War Memorial in our town.

Rachel has been spending more time outside. Her collection of "must haves" for outside has grown and her walker probably weighs more than she does. LOL!
Thank you Grandma for the dancing and singing flower bubble blower! Rachel loves it!
Taking a break to watch the garbage trucks drive by.
Rachel is trying to figure out how to walk and talk on her phone at the same time. Looks so cute! She likes to ask for Grandma while she is on the phone.
Playing in the water at the beach on Little Cedar Lake after a family picnic. Rachel was a huge fan of this. Steve fished with the older girls while Rachel and I took pictures and played in the sand and water. Alicia caught her first fish of the season.
Rachel practicing with her fishing pole. (We did not put anything on her line yet- avoiding injuries and getting her use to holding a pole) I think it is very sweet that my dad made sure all 3 of his granddaughters had fishing poles at their births. One day Papa is going to have some fishing pals.

Tuesday, May 21, 2013

Picking Up

Rachel has been progressing well this week with her walker. She asks daily to use it- especially outside. We have been playing a game (aka physical therapy) by throwing balls or her ducks while she is walking and stopping to pick up the ball or duck. This is a really good core strength training and learning to balance activity.

Looking sturdy while stopping for a drink.
Stopping to reach for her cup

On Sunday we attended Steve's graduation ceremony. We are so proud of all he has accomplished. I can not imagine how challenging it must have been at times to keep steady and stay the course during everything our family has gone through from fetal surgery until today. Definite proof of a dad's love for his family.
Rachel lasted about 10 minutes into the graduation ceremony before we joined the group of restless babies and toddlers in the lobby of the Mecca center. We were able to sneak back in to see Steve receive his diploma. The older girls liked to tease him about his Bachelor's hood and say he looked like a character out of a Harry Potter story.
Rachel enjoyed watching the cars driving by during the ceremony. 
Rachel chasing Alicia.

Wednesday, May 15, 2013

Celebrate the Night

Beautiful weather this evening must have inspired Rachel. She figured out how to make the walker go and kept at it for a full half hour. We had to keep turning her around as she ran out of sidewalk. While I know these are very early primitive steps- they are still reason to celebrate. We will continue to work hard with Rachel to build up her leg muscles so her legs are more underneath her and she is more upright but for tonight- let's celebrate her accomplishment.

Monday, May 13, 2013

All About the Timing

My timing was way off trying to capture the 2 geese flying in the photo or is it right on? We had been on a family bike ride to Sunburst Ski Hill and back. Steve was pulling Rachel in the bike trailer with Alicia keeping up well. I stayed at a slower and very frustrating pace with Breanne as she did not want to be on a family bike ride. Steve and Alicia made it to Sunburst and turned back around lapping past us. Breanne continued to be stubborn about the bike ride to the point I ended up turning the two of us around without making our goal. Steve and Alicia waited for us to catch back up with them on the way home. We switched older girls and I let Steve and Breanne head home before us. I had been feeling very frustrated at the situation since Breanne is more than capable of out riding all of us but just didn't want to that day. Alicia and I decided to stop on one of the bridges along the bike trail and attempt to take some pictures. No matter how hard I tried I just couldn't get any of the flying geese centered in the photos. I decided to try one more time, took the shot above and then starting packing away my lens attachment. Alicia was standing next to me- I heard a young child's fearful scream. I remember shoving the lens equipment in Alicia's hands and running at full sprint towards the scream. The child's father was also running at full sprint from the opposite direction. I reached the area of the scream first- there are steep sides along the bike trail- there was a 3-4 yr old little boy caught up in the shrub branches half way down the side with his bicycle stuck under him-his head was falling forward down toward the bottom of the ravine with just one foot sticking out.If those shrub branches were not there to catch him-he would have sustained serious injuries. I worked with the dad to pull the little boy back into safety. He fortunately just had a few scratches and got a lecture from his dad on bike safety. As frustrated as I had been with Breanne earlier perhaps it was meant to be that way - our timing would have been different and I wouldn't have been there to help someone who needed it.
Finally a warm enough day for Rachel to visit the park. She was not a fan of the swing.
Exploring the equipment. Great physical therapy having to climb up.
Rachel was hesitant to crawl through the tunnel initially then you couldn't get her back out of it.
Hmm, mom can't get me when I am in here.
Rachel had a great time playing and exploring at the park.
Rachel loved Clifford and gave him several kisses before we left the park. There was a lot of "dog woof woof clifford" between kisses.
Beautiful flower on a tree at the park.
Rachel's physical therapist added a seat sling to Rachel's walker.
Rachel using her walker. She loved trying to get the bubbles Alicia was blowing.
Go Rachel Go! She is averaging about 20-25 steps each time she uses the walker. She still needs assistance with keeping upright at times. Today Rachel was averaging taking 4 steps at a time before taking a short break and starting up again. She surprised us during physical therapy today also by crawling over to her walker, saying "bubbles", stood up at her walker and took several unassisted steps behind it (using it like an adult walker). She continued to push the walker towards the front door with assistance from her therapist and then we headed outdoors. (Rachel is requesting that her grandma sends her a battery operated bubble blower so she can walk with Mommy without needing a third person to entice her with the bubbles).
Rachel loves playing Grandma Eisen's piano. Tonight she was playing and singing "marshmallow". She discovered a bag of miniature marshmallows last week that Alicia keeps for cooking. I let her try one and she was hooked. I am actually impressed by her being able to say marshmallow at her age not to mention feeling it to be song worthy.

De-Rotation Tutorial

My model let me take a few pictures today of us putting on her de-rotation straps. The straps help keep her legs and feet in correct alignment. A common problem amongst spina bifida little ones is that their legs like to rotate inwards causing a pigeon toed appearance when they are trying to walk. The de-rotation straps in the photos was given to us by Rachel's physical therapist and is made by SureSteps. She had told me that you could also use a very long ace wrap to achieve similar results. You would need to find the center of the ace wrap first and wrap the center of the ace wrap around your child's waist leaving two long tails to wrap as shown below.
The above picture is of the first time Rachel wore the straps. She is using size B tubigrips as knee protectors in this picture due to wearing shorts. I would recommend keeping pants or some sort of leg protectors while wearing the straps.
Place the de-rotation waist band on your child with the 2 long straps loose in the back.If your child needs extra support you can criss-cross the straps in the back before applying them to the legs.
Bring the straps to the front of the leg. It will pass over the hip and follow along the top of the thigh at an angle.(Go from lateral to medial)
Pass the strap behind the knee to below the front of the knee crossing over the front of the shin. (go from medial to lateral back to medial)
Pass the strap behind the ankle to the front of the ankle. Place the metal clip on to the velcro strap on your child's shoe and secure velcro strap on their shoe. (starting medial go lateral then towards medial ending by the top of the shoe)
In the photos above there is a lot of extra length of the strap. I followed the extra length of strap on top of the main strap and pinned into place with a baby safety pin. In future pictures of Rachel the extra length and baby safety pin will not be present- Rachel's physical therapist cut the straps to her length today.
Repeat with the other leg.You may have to readjust the length of the straps several times to get the right fit- don't get frustrated- the amount of support they provide your child is well worth a few extra minutes of strap adjusting.

Thursday, May 2, 2013

Blessed Week

We have had a week full of blessings since I lasted posted. On Wednesday we attended a honor ceremony for Steve graduating with the highest GPA in his field of study. We are so proud of him!Graduation coming up later this month- hooray!
A partial shot of Rachel and I. It is hard to get a picture of with Rachel when she is trying to grab my phone.

While I wasn't able to buy The Escape baby carrier by Phil&Ted as I had hoped, I was able to purchase Meadow by Kelty Kids from a friend from high school. Thank you Robyn! We love it! It was nice to drive up to Oostburg to pick it up. Rachel and I were able to drive past the area where I grew up and we stopped at Harrington Beach State Park to try out the baby carrier.
Miss Rachel in the baby carrier. This picture doesn't show that there is a bar at the bottom of the baby carrier just below my hips. The blessing about this bar is that Rachel plants her little feet on it and stands while we are walking together.

Walking along the shoreline and seeing where other people were there before me reminded me of the Footsteps in the Sand poem. I often recommend this poem to other families when they first find out the diagnosis of spina bifida or other birth defects.That's when it becomes Footprints in the Sand time.

We found a few signs that spring may actually be coming to Wisconsin as we hiked part way around the quarry.
My power lifter. Imagine being able to lift your body weight like that? She power lifts herself up until she can easily swing a leg up.
Rachel's physical therapist brought with a pediatric walker on Tuesday. We have been having Minnie Mouse walk with it to get Rachel interested in using it. On the first day with it she walked about 20 feet with lots of whining and the therapist holding her up by her waist. Last night she did great! Alicia stayed in front of Rachel and blew bubbles for her catch. Rachel loved this and did not seem to notice she was working hard. She would stop and bounce up and down on her legs, laughed, would balance herself standing still and went about 25 feet. I still had to hold her up by her waist but it was just a huge improvement from the day before. We are working with her ortho doc to get a script for a gait trainer. I have heard it can take several weeks to get one. I will try to get pictures of Rachel using the walker when I have an extra set of arms helping- I think it will take 3 of us.