Thursday, July 10, 2014

REALLY!?!? How can it be July already?

Hello Everyone,

It has hard to believe that it is July already.  This is going to be a busy month for us.  We had a great holiday weekend of relaxing and working around the house.  On Sunday, the fabulous Amy Carroll took Faith's 2.5 pictures.  On Monday, Faith had a HUGE milestone and started school.  She is going to Hillside in Allegan 3 full days a week.  The first day she cried on the bus but stopped as soon as the driver backed up.  She has done great on the busy every day since.  She is very tired and it will be an adjustment for all of us.  She seems too young to be going on the bus and to school.  We know that we made the best decision for her and that she will thrive there.

Faith will have an MRI of her brain, spine, and pelvis on July 23.  The brain and spine MRI are to be sure she is stable for surgery and to check the status of the cyst on her brain stem.  On July 31, she will go into the O.R. for a Cystoscopy,  The pelvic MRI and Cystoscopy are both in preparation for reconstructive surgery.  We are all very ready for the surgery to be done and over with.  Everything works good so there is no rush.  However, she has a colostomy bag that gets change about once a day and she can not be submerged in water.  This means a VERY shallow bath and no swimming.  Faith loves the water and we are all ready for her to go in the pool, lake, etc. 

What is a Cystoscopy?  
Cystoscopy is a test that allows your doctor to look at the inside of the bladder and the urethra using a thin, lighted instrument called a cystoscope . The cystoscope is inserted into your urethra and slowly advanced into the bladder.


Ruby chased a deer out of our yard last night. I was watering and managed to catch a quick picture!

Friday, June 27, 2014

First Real Haircut

Faith had her 1st real haircut on Monday, June 23. Neurosurgery has buzzed off lots of hair in the past. We are so happy that it was finally time for a trim. Faith did a great job


Michele DeBoer Sunde's photo.Michele DeBoer Sunde's photo.

Thursday, June 12, 2014

May/June 2014




April Smith Ruehs's photo.
Cousins over for Mother's Day
April Smith Ruehs's photo.April Smith Ruehs's photo.April Smith Ruehs's photo.


Photo: This little cutie is 2 1/2 today!
Hard to believe but this little cutie is already 2 1/2! 6/5/14

 
Michele DeBoer Sunde's photo.
Faith learned to sign HAT and now asks to wear one! :)
Michele DeBoer Sunde's photo.


Michele DeBoer Sunde's photo.
Michele DeBoer Sunde's photo.
Michele DeBoer Sunde's photo.

Michele DeBoer Sunde's photo.
Michele DeBoer Sunde's photo.

Photo: Serious about her new outfit and purse!This book is seriously good!  Lol
Very serious about her new outfit and purse!


Tuesday, April 22, 2014

Happy Easter!


Happy Easter Everyone!

Happy Easter!
Finally time for Spring clothes!
My new kitchen!



Cousin Matthew came over and Faith loved it!





Monday, April 14, 2014

A Few Pics from April 2014

 
Working hard at Physical Therapy!




 
 
Fun at Home!
 


Tuesday, March 11, 2014

Uneventful

We are happy to report that it has been an uneventful few months for us.  Faith is always doing new things and we couldn't be happier.  She finished her 2nd round of feeding therapy at Mary Free Bed. Last week was her 1st visit for her 2nd round of PT at Mary Free Bed.  She is getting more mobile but not walking yet.  She is a chatter box and does very well with the signs she knows but is not saying words yet.  We are still working with Early On for OT, Speech, Vision, and PT.  Everyone is very happy with her progress. 

On January 25, 2014, it was 1 year ago that she had her last surgery.  For a 2 year old who has had 11 surgeries, that is a great accomplishment!

February 14, 2014, was Faith's 2 Year "Shunt Anniversary."  Considering that shunts have a high failure rate and that she had 3 of them by the time she was 2 months old, we are thrilled beyond words!


Here are a few more pictures we want to share:

Photo: Grandma had to wake me up to go to therapy today.  This is how she found me and I was obviously not ready to get up!
Grandma had to wake Faith up to go to feeding therapy and this is how she found her! 1/29/14






Photo: Out for breakfast with Daddy and Mommy
Breakfast with Mommy and Daddy at the Rainbow Grill on 3/1/14

Michele DeBoer Sunde's photo.Michele DeBoer Sunde's photo.
She loves the Jeep she got for Christmas.  She started out going backwards but goes forwards now too!  We still have to learn to turn. :)I can turn it on all by myself now! :)
Bucket heads









Monday, January 13, 2014

Sleep Study

On Saturday night, Steve took Faith to have a sleep study.  It was ordered by her Neurosurgeon to see if the cyst on her brain stem causes her to stop breathing, have apnea, or any other issues.  She and Daddy were both not impressed and neither of them got much sleep.  A BIG thank you Daddy for taking her so Mommy could work.  We will get the results in 4-6 weeks. She has been doing good lately and sleeping through most nights of the week. :)  This is a very great change from only sleeping 1 night through a week.  A good nights rest for all of us makes for a much happier family!


Photo: Faith during her sleep study. She was not impressed, nor was I .

Yay for Pigtails!

Faith has not had brain surgery in almost a year. She finally has enough hair for pigtails!

PhotoPhoto