Working hard at Physical Therapy!
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Fun at Home!
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Monday, April 14, 2014
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:
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| Grandma had to wake Faith up to go to feeding therapy and this is how she found her! 1/29/14 |
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| Breakfast with Mommy and Daddy at the Rainbow Grill on 3/1/14 |
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!
Yay for Pigtails!
Faith has not had brain surgery in almost a year. She finally has enough hair for pigtails!
Tuesday, December 17, 2013
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
Tuesday, December 3, 2013
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
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
Tuesday, September 3, 2013
Tuesday, August 27, 2013
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
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
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