1 Corinthians 13:13

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

Saturday, February 21, 2015

Skater Girl Fun

Last night we went rollerskating as a family. It was Rachel's first time at a skating rink. Needless to say, she loved it!
Due to her toddler sized feet- (yes at age 3 1/2 she could still fit into a toddler size 7 or 8 without her AFOs on) she was supplied with Fischer Price adjustable skates by the skating rink. She appeared to be the youngest skater out there last night.
Getting some skating lessons from daddy- thankfully he is pretty good at skating backwards.
video
The skating rink also had small semi-walkers made from PVC for new skaters to use. I think this would be an easy Grandpa Bill project. It was very difficult to get her to use it though- she refuses to use any type of mobility device. I think this refusal is what helped motivate her initially become an independent walker- no walkers, no quad canes and no forearm crutches for this tough girl. 
video
Susie her physical therapist would be proud- although she may have fallen at times- Rachel never stopped trying - did not cry once and figured out how to get herself back up on her own with rollerskates on.
video




Friday, February 20, 2015

Late Fall and Early Winter Catch Up

Realizing that I am writing this in late February- I will mainly post some cute pictures and short comments.
One of Rachel's Fall goals is to be able to stand in place for longer periods of time. She has a tendency to need to take a few steps forwards or backwards to keep her balance. In the picture her goal was to stay in the hula hoop while popping bubbles with her racket.
Rachel loves riding this tricycle while she is at physical therapy. I am on the look out for one just like this that the seat sits higher. We are planning on donating her pink radio flyer tricycle as she has outgrown it. The other cool thing to note in this picture is we had officially donated all of Rachel's walkers this past fall.
Rachel rolling the barrel up the ramp- great strength training!
She couldn"t resist climbing in the barrel by herself.
I love this picture! Walking the dog is one of those blessings that can be overlooked by someone who has always had the physical ability to do so. This is one of Rachel's Take That Spina Bifida pictures. Rachel age 3 with Spina Bifida starting at L4 walking her dog Pepper with only the aid of AFOs.
Baby Gia taking a nap. As Rachel says "that's my girl- that's my baby Gia"
Rachel, Breanne and Alicia walking together at the Festival of Lights.
Rachel and I enjoying the lights.
Back view of Rachel's ankles and feet without her AFOs on at Shriner's Hospital Chicago. This picture was taken in December and her surgery was done in June. Still looking great!
As Rachel says "I am cute"
Alicia and her Christmas present- her first electric guitar.
Rachel and Alicia
Steve and I (aka Dad and Mom)
Breanne
Another Take That Spina Bifida picture- yes that would be Miss Rachel climbing on top of the picnic table just like any other 3 yr old.
And there she is walking across without any fear of falling off.
She was however, leary of the man that kindly took our picture as a family.
The best older sisters ever!
Rachel and Daddy!
I wonder what Pepper would think if I turned the treadmill on?
Working those legs by standing on an incline.
 
Strength training on the Bosu
Coolest giraffe ever! This giraffe was made by my Aunt Helen. She made an armature, then covered the armature in casting material and painted the giraffe. Amazing talent!
Tough girl Rachel!
Make up Artist Rachel!(I am thinking she probably shouldn't quit her day job yet)
Winter has not been too exciting- everyone is doing well and Rachel is still our sunshine! Pepper is still a chewer. I will try to add some other videos and pictures from her physical therapy sessions soon.

Strength In Beauty Video

Another Animoto creation:
https://animoto.com/play/YA9XMzlVyoSCgUrjWzZZrw

Rachel's Minnie Mouse Slideshow

In case it doesn't load properly- use the link below to view Rachel's Minnie Mouse Slideshow created in Animoto.
http://youtu.be/1W-00b8qIPg

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