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

Just a few photos

How is September right around the corner?

Hi Everyone,

We hope that this post finds you all doing very well.  How can the summer almost be over already?  It went by so quickly that it doesn't even feel like we had a summer.  We have been busy since the last post (almost 3 months ago). 

The results from Faith's MRI were not what we had hoped for.  Her cyst continues to grow.  However, she is still having no symptoms.  We are so thankful for that.  Her Neurosurgeon (NS) asked us to watch her closely for symptoms.  She has a follow up MRI schedule for October 11.  Surgery is inevitable but it is just a matter when.  Her NS feels that we have a greater chance of success this (the 3rd) time, the longer we can wait.  It is hard and scary but we have become used to worrying that she may start having symptoms. 

We have been taking Faith to PT at Mary Free Bed (MFB) for the summer.  We decided to do this because she does not get regular PT through Early On during the summer.  Early On is a school system based program so they only come once a month during the summer instead of once a week.  Faith has made great progress with her PT at MFB.  We love her therapist and she is so good with her. 

Faith still has to wear her eye patch for an hour every day.  We go see Dr. Droste in mid-September and hope to be done with it.  Her right eye still wanders but we are hopeful this will be resolved sooner than later.

We still take Faith to see lots of specialists but the time between visits is getting longer.  It is nice not to feel like we are taking her to a different doctor every week.  Things will definitely be busier for us when school starts because her Early On visits will resume.  We are looking forward to her getting all the therapy so it is well worth being busy.

We are struggling to get her to sleep through the night.  Lately, we are up for several hours most nights.  There are a multiple of things that wake her.  Sometimes it is her teeth, sometimes she is soaked from being fed by her feeding tube, sometimes her colostomy bag comes off, sometimes her feeding tube has an error, and sometimes we have no idea what the problem is.  She is almost always a very happy girl through all of this and we couldn't be happier about that.

Faith continues to learn new things and progress forward.  We are teaching her sign language and her favorite is "Please."  She is walking along furniture and loves to get into drawers and cupboards.  She loves to be outside and to be read to. 

Please continue to keep Faith in your thoughts and prayers.  She is truly defying the odds!  Two year ago on 8/31/11, the doctors told us that Faith would never survive.  She is a fighter and we are truly blessed to have her in our lives.

With Love,
The Sunde's

Where did May go?

We hope this post finds you doing well.  It is hard to believe that May has come and gone already.  May was a good month in the Sunde house.  Faith is crawling and gets all over the place now!  She pulls herself up on furniture and anything else she can find.  We couldn't be happier with the progress she is making.

Faith graduated from Feeding Therapy the end of April.  We have also changed her diet to less formula and more table food (pureed only at this point).  She is increasing the volume she eats which is a huge accomplishment.  It definitely takes patience but she is doing much better with eating.

She went to see her Opthamologist in early May.  Her right eye is dominating so she needs to wear a patch on it for an hour every day for 4 months.  She wears it on the right 2 days and left 1 day and repeat.  It is definitely the longest hour of the day and she wants constant attention when she is wearing it.  But, she is very tolerant of things and handles it well.  

 

 

Faith went to the dentist for the first time in early May.  She did very well.  The dentist is where Grandma DeBoer and Cousin Bev works so it was also a fun social visit.  Grandma had fun showing her off. 

 

 

Mid May we took Faith to see her Neurodevelopmental Pediatrician.  She is so pleased with everything that Faith is doing.  She said that she is doing amazing considering all the brain 'abnormalities' she has. :)  She doesn't need to see her back unless we or one of her other doctors has a concern.  Praying that we never have to visit her office again.

 

The end of May we went to see her Neurologist.  He is also pleased with Faith's progress.  He is concerned about the cyst she has pressing on her brain stem. But, he doesn't need too see her back unless we or one of her other doctors has a concern.  We can always give his office a call for advice.  :) 

 

On May 31, Faith had an MRI to check her cyst pressing on her brain stem.  Her NeuroSurgeon is on vacation this week so we don't get the results till Monday.  We are praying that the cyst has not grown at all.  Faith does not have any symptoms so that is good news. 

 

 

Please continue to keep Faith in your thoughts and prayers.  They are much appreciated.

Love,
The Sundes

Here are some other misc pics from May 2013:

Faith is 18th months old! 6/5/13

 

 

Update for April 2013



Faith is doing very well.  She is working on getting tooth #6.  She has started to army crawl and is working on her coordiation and strength to crawl.  Here are a few pictures from the last few weeks:

Took Mommy and Grandma out for lunch at Qdoba today after my blood work 4/17/13

Out to dinner with Mommy, Daddy, and Grandma & Grandpa Smith 4/14/13

A Few Pictures of our little Cutie Pie!



Crazy Curly after a bath 3/23/13



I Love My Puppies and They Love Me! 4/1/13

I CAN DO THIS! 4/1/13

All Ready for Bed 4/4/13

I'm a big girl now! :) 4/5/13

 

 



Playing in my toy bucket! 4/5/13



Loves to Read & Play Peek-A-Boo 4/5/13

Daddy & Mommy went to South Haven for a weekend away.  They missed me as much as I missed them! 4/6/13

Helping Mommy sort my clothes for the garage sale 4/7/13