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.

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

May/June 2014

Cousins over for Mother's Day



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

 

Faith learned to sign HAT and now asks to wear one! :)



Very serious about her new outfit and purse!



Happy Easter!

Happy Easter Everyone!

Happy Easter!

Finally time for Spring clothes!

My new kitchen!

Cousin Matthew came over and Faith loved it!

A Few Pics from April 2014

 

Working hard at Physical Therapy!

 

 

Fun at Home!

 

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:

Grandma had to wake Faith up to go to feeding therapy and this is how she found her! 1/29/14



Breakfast with Mommy and Daddy at the Rainbow Grill on 3/1/14

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!

Yay for Pigtails!

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

Faith is 2 years old!

It is hard to believe that our little miracle made her grand entrance into the world 2 years ago! 


Faith had her 2 Year Session last week with my bestie and AMAZING photographer, @amycarroll. As always, we were blown away! The images she captured perfectly portray Faith and her personality. We can never thank Amy enough!


http://acarrollphotography.pass.us/faithtwoyear/





We wish you all a safe and happy holiday!

With Love,
The Sunde's


 

Happy Holidays!

You must be wondering if we have abandoned our blog.  Once again, it has been 3+ months since our last post.  Life gets so busy and time just flies by.  We apologize that we have been MIA on our blog. 

What have we been up to since our last post?

We took Faith camping in September.  We were worried that she wouldn't sleep well because she was a horrible sleeper camping the year before.  She did great sleeping at night and was a happy camper as you can see.





She loves to play in the end table


On October 11, Faith had an MRI on her brain.  It was a 4 month follow up to check on the cyst on her brain stem.  The good news is that it is the same size.  More good news is that she still has no obvious symptoms (trouble breathing, swallowing).  Her Neurosurgeon is concerned that she may have symptoms that we can't see.  He ordered a Swallow Study (scheduled for 12/16/13) and a Sleep Study (scheduled for 1/9/14) to determine if she does have underlying symptoms. 

Faith's Ophthalmologist had her get glasses because patching her eyes for 1 hour per day were not getting the results he wanted to see.  She does not use her peripheral vision which can affect her development.  The glasses have a special prism in the lens.  We have not noticed a big improvement and she has had them since October 8.  If the glasses do not correct this, she will need to have surgery on her eye muscles.  We have a follow-up appointment with him on December 27. 

The first day with the glasses was rough and we were skeptical.  She proved us wrong and does very well with them.  We just take them off in the car, to eat, and sleep. 

A very unhappy girl, the first day with glasses


Super cute with glasses!




A picture taken by Aunt Amy on our visit to see her a day after PT at Mary Free Bed.


Faith made great progress with PT at Mary Free Bed over the summer.  We had our last visit on October 30.  She is now going back to Mary Free Bed for OT-Feeding Therapy for the winter.  She is still not eating more than 4 ounces at a time and will only eat pureed foods.  Her goals with Feeding Therapy are to increase her volume per feeding, discontinue over night g-tube feedings, solid foods with different textures, and drink from sippy cup. 

Faith with her walker from Mary Free Bed.




Our little Monkey for Halloween


Ready for the Snow


Still loves to play in the end table


Our little jail bird:


Faith likes pushing her walker backwards now.  Look how tall she is getting!


My fancy fox sweater


Daddy likes to mess up her hair.  Wow is it crazy!


How do you like my hat?  She loves to play peek-a-boo with her bucket.  Silly Girl!




Faith has a cold right now for just over a week.  Hope that she is 100% very soon.  She has only been sick one other time.  She still smiles even when she isn't feeling well.



Hope you are all doing well.  Happy Holiday Season!

Love,
The Sunde's