1 Corinthians 13:13

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

Wednesday, October 8, 2014

More of the Swing Master

Rachel also has a swing that she uses in physical therapy. It is used to help strengthen her core and her balance. I sat on it with her once and it is really relaxing. If only I had the type of house that we could install our own.
They alternate from swinging forward and backwards to side to side.
We took the girls on a fall hike recently. We all love this time of the year. (LOL as I think of the Facebook picture Steve posted about saying "pumpkin spice latte" three times into a mirror and a girl in yoga pants will jump out and tell you everything she likes about fall). The color of the leaves, the smell in the air, the crunch of leaves under your feet, pumpkins, apples and ect.
Meg, Rachel and Breanne
Love finding spina bifida daisies!
Alicia recatching her grasshopper.

The pint sized princess walked for part of the hike then rode on my back. I had added a yard of duck canvas to our baby carrier back in June to accomendate Rachel's size and at that time casts. I am glad I had altered the baby carrier and look forward to more family hikes this fall.

Urology Update Age 3

Yesterday Grandma and I spent a long morning with Rachel at Children's Hospital.This was the first time there in several months. The construction around Watertown Plank Rd is crazy. I never thought I would temporarily forget my way around Children's Hospital but I have to admit we road the elevator several times due to my forgetfulness. I will actually take that as a good thing meaning that Rachel has been healthy enough not to need to be there. Rachel had her annual urology testing. She started off with urodynamics testing. We had a great team helping with the test this time around. Rick and Molly explained everything they were doing.They also ran the test twice to ensure there were not any false positive results happening. And yes, Rick, I remember that you told Rachel she needed to buy Grandma and Mom a Starbucks once she is a working girl.( I am not sure when they started serving Starbucks at Children's but sure enough I saw the sign for at while walking on the 2nd floor). Rachel's fill rate for the urodynamics was at 15-which is based off of her weight. I apologize I forgot what the formula used was. To estimate pediatric bladder volume by age- take the age-add 2 and multiply by 30ml.
age 3 + 2 = 5 x 30ml = 150ml 
Rachel then had a renal and bladder ultrasound. After her ultrasound, she had VCUG testing done.

Rachel was a great patient. She let out a few complaints but nothing earth shattering. Rachel the Brave was her name of the day.

Drumroll, please. Great news is that Rachel's bladder and kidneys look healthy. Her bladder is smooth, grew to the correct size for her age and her bladder volume is exactly where it should be also. Her kidneys also grew properly to the correct size for her age and look great! No hydronephrosis or kidney reflux!!!!!Hooray! She is still experiencing bladder spasms and sadly can not empty her bladder on her own. We will continue with catheterizing and will start using Vesicare to help with the spasms.  

Monday, October 6, 2014

Master of the SwingSet

My nephew Max and brother Glenn dropped off a swingset that Max had outgrown. The story behind the swingset is that my grandparents in Green Bay found it. They picked up all of the pieces of this swingset that a family was throwing out. They delivered all the the pieces to my parents' house (which is about 2 hrs north of Green Bay). My dad sanded and repainted all of the pieces. After refurbishing the swingset, my dad brought it down and put it together for my nephew Max.My brother screened in the sand box and added a door to the sand box. Rachel is head over heels in love with this swingset.
No naughty kitties getting into this sandbox!
Look at this happy girl! She amazed me by showing me how she can get onto and off of the swing without any help. She still needs to work on moving her legs up and down- she pulls up her knees and then kicks her feet.
Look at Rachel's amazing arm strength! Yes!She lifted her entire body a good 4 inches above the seat of the swing to get into the swing. Embarrassing to say- I am no where near to being that strong in my arms. I tried to do a pull up on the monkey bars of the swing set and was an epic failure.
Rachel's hard work in therapy paid off. There is both a ladder and a rock climbing wall to climb up to go down the slide. She can climb up both without any assistance needed.
video
While these activities may seem like "no big deal" things to the average parent- to the parents of a special needs child, it is a like that happy moment when you are blowing out the candles on your birthday cake. It is that well needed reassurance that, yes, my child is more like his or her peers and getting further and further away from all of those horrible statistics you get bombarded with when your baby is diagnosed with having a disability. It is part of those "unseen" daily miracles that people often take for granted. I am blessed to watch my 3 yr old daughter show what a child with spina bifida at L4 can do and to see her inspire others.
I was unable to get a picture but the pint sized princess likes Pepper and me to ride on this seat with her. I am not sure how much Pepper enjoyed swinging but he will do anything for a Cheerio.
Rachel and Pepper are "monkey see monkey do" together. Somedays, I swear they conspire together to get me to clean up one mess while the other makes a different one. At least Pepper is consistent- he always takes his stolen items to chew to the shoe gathering in the sunroom.
Pepper Jack at 5 months old

Tuesday, September 9, 2014

Summer Wrap Up

When Rachel turned 3 years old in August she aged out of the Birth to Three program. We began taking Rachel to physical therapy in the clinic setting instead of receiving in our home. 
Going up the ladder
Having fun after going up the ladder
Climbing back down the ladder
A box was made for Rachel to try to stand in while popping bubbles with a racket
Trying hard
Standing strong!
Rachel even tried stepping with these at her insistence-I am trying to find a used pair to buy.
Getting ready to throw the ball

We visited Grandma and Papa up north. Long car ride with the 4 girls but well worth it.
Direct quote from Papa "slow down Rachel, Papa doesn't move that fast!" Love it!!!!!
The older girls looking like they want to find some mischief.
Papa let me take the girls around on one of the 4 wheelers (grandma's-not sure if his was truely in need of repair or he was fearful of my 4 wheeling skills) Rachel is so small. I had to keep my legs up and hold her in place with my knees.
It had been both Meg and Rachel's first time on a 4 wheeler. We love it! Rachel asks almost every morning to go to Papa's and drive the 4 wheeler. 
No trip up north is complete without stopping to listen to the world's greatest song played back to back. Alicia asks Meg- "what is Big John?"  Gotta love Meg's response - "a giant toilet-I don't know"
This was asked prior to arriving.
That is one big tire!
The girls found a giant bear across from Big John (not to be confused with the flushing kind)
We stopped at a wayside park to enjoy some waterfalls.
The pint sized princess was very wiggly here. We will need to stop there again to enjoy a longer time with watching and listening to the waterfalls.
Rachel went to her first Brewers game.
We had fun there as a family. Steve's employer hosted the game as a company event. It was nice to meet some of his coworkers. Alicia, Breanne and I climbed the Mountain Dew rock climbing wall together. Alicia is a rockstar rock climbing wall girl! 
The older girls headed back to school.
Last year of middle school for Bre and Meg.
I need a copy of that rule made to be hung up in mom mobile. 
We enjoyed Labor Day with Steve's family. It was great to see everyone. Grandma with 4 of her 7 granddaughters. Carl needs to start his own restaurant-best ribs ever! 
The kids turned off all electronic devices and had a very competitive game of Clue. Rematch coming up in the near future. They found another anime fan.
We adopted Pepper LD Jackson. He is a 4 month old German shepherd/mountain cur mix. We love his big ears! He has adjusted well into our family. 
Found him cuddled up in what was a clean load of laundry when I got home from work this weekend. The girls had used a baby gait to keep him in the craft room overnight but he had other ideas. Very smart little guy-waited for them to go upstairs then he jumped over the baby gait and proceeded to take a siesta in the clean laundry. He is in training mode with me to be my running companion. I am training to be able to do a half marathon by Valentine's day. Currently I am able to consistently run 6-7 miles and he can do a half mile. 
My selfie with more laundry looming in the background.