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
Thursday, June 6, 2013
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.
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 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:
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| Faith is 18th months old! 6/5/13 |
Tuesday, April 23, 2013
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:
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| Took Mommy and Grandma out for lunch at Qdoba today after my blood work 4/17/13 |
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| Out to dinner with Mommy, Daddy, and Grandma & Grandpa Smith 4/14/13 |
Tuesday, April 9, 2013
A Few Pictures of our little Cutie Pie!
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| Crazy Curly after a bath 3/23/13 |
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| I Love My Puppies and They Love Me! 4/1/13 |
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| I CAN DO THIS! 4/1/13 |
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| All Ready for Bed 4/4/13 |
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| I'm a big girl now! :) 4/5/13 |
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| Playing in my toy bucket! 4/5/13 |
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| Loves to Read & Play Peek-A-Boo 4/5/13 |
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| Daddy & Mommy went to South Haven for a weekend away. They missed me as much as I missed them! 4/6/13 |
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| Helping Mommy sort my clothes for the garage sale 4/7/13 |
Wednesday, April 3, 2013
March 2013
March was a fairly uneventful month and we are thankful for that! :) Faith will not be having her reconstructive surgery anytime soon. They will not do the reconstruction until the cyst on her brain stem is resolved. She has an MRI the end of May to reevaluate the cyst. She is having no symptoms that suggest the cyst is causing any issues.
Faith is busy working on her skills. She can now get from flat on her back to sitting. She can also get on her knees. Her newest 'trick' is pulling herself up to standing by her tub of toys. She will rock back and forth on her knees but isn't interested in crawing. She would rather hold your hands and 'walk'.
Faith is also busy getting in teeth. She is working on #4. I can't wait till they are in father so I can get an adorable toothy grin!
Here are a few pictures from March:
Faith is busy working on her skills. She can now get from flat on her back to sitting. She can also get on her knees. Her newest 'trick' is pulling herself up to standing by her tub of toys. She will rock back and forth on her knees but isn't interested in crawing. She would rather hold your hands and 'walk'.
Faith is also busy getting in teeth. She is working on #4. I can't wait till they are in father so I can get an adorable toothy grin!
Here are a few pictures from March:
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| Happy 8th Birthday to our Jewels! You are the best four legged family member ever. We all love you! 3/21/13 |
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| Happy Girl playing with Mommy! 3/16/13 |
Tuesday, March 5, 2013
February 2013
Faith turned 15 months old today! It is amazing how time flies. February was a busy and tough month. December to March is a notoriously busy time for me at work so that just adds to an already busy schedule. Faith is doing well and making good progress with Occupation Therapy (OT) , Physical Therapy (PT), Vision Therapy, and Feeding Therapy. She has OT, PT and Feeding Therapy each once a week. She had Vision Therapy once a month and a visit from her Early On Infant Teacher twice a month. They will be introducing Speech Therapy soon too. Those visits along with the specialist that she sees, makes for a very busy little girl. Most weeks she has 4-5 appointments.
We are very disappointed that after 2 tries, her cyst is still pressing on her brain stem. We are very thankful that she is doing well and isn't exhibiting any symptoms. Her Neurosurgeon ordered a follow up MRI in late June. In the meantime, we just need to watch her close for any symptoms like trouble breathing or swallowing.
On Friday, we have an appointment with her Urologist to talk about her reconstructive surgery. He will work with her General Pediatric Surgeon. Her Urologist will reconstruct her Vesicostomy (urine) and Vaginostomy (vaginal opening). Her General Pediatric Surgeon will reconstruct her Colostomy (stool). There is no rush for this surgery, however, the older she gets to harder it will be because she is more aware of everything going on.
Here are a few more pictures taken in February 2013:
We are very disappointed that after 2 tries, her cyst is still pressing on her brain stem. We are very thankful that she is doing well and isn't exhibiting any symptoms. Her Neurosurgeon ordered a follow up MRI in late June. In the meantime, we just need to watch her close for any symptoms like trouble breathing or swallowing.
On Friday, we have an appointment with her Urologist to talk about her reconstructive surgery. He will work with her General Pediatric Surgeon. Her Urologist will reconstruct her Vesicostomy (urine) and Vaginostomy (vaginal opening). Her General Pediatric Surgeon will reconstruct her Colostomy (stool). There is no rush for this surgery, however, the older she gets to harder it will be because she is more aware of everything going on.
Here are a few more pictures taken in February 2013:
 Playing with my Kitties  |
| Green Beans are Yummy! |
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| Dani Grace (my cousin Jill's daughter) & Faith having a play date with their Grandma's |
Monday, February 25, 2013
Monday, February 18, 2013
Happy Valentine's Day
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| Happy Valentine's Day Everyone! I love to wave hello and goodbye. |
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| All dressed up in Daddy's snowsuit to go for a tractor ride with him and plow the snow! |
Thursday, January 31, 2013
Update for January
Well by now you have all figured out that I am terrible at being a consistent blogger and I apologize for that. I do my best but it is so easy to update Facebook and time is so limited. Here is what has happened in January:
January 14, 2013
MRI day... again. A 3 month follow on brain and one of her abdomen to prepare for up coming reconstructive surgery.
January 24, 2013
Surgery #11 tomorrow at Noon for Faith. The cyst on her brain stem is significantly larger. Her neurosurgeon will place another catheter off her current shunt into the cyst. Your thoughts and / or prayers are much appreciated. ♥
January 25, 2013
My Pre-Surgery Curls
Waiting For Surgery
Faith went into surgery at 1pm and total it will be 5-6 hours. His includes an hour to run antibiotics, getting her set, actual surgery, and post op.
Neurosurgeon was unable to complete the surgery because she started bleeding when they tried to do the 3rd/final incision. He tried it twice and bleeding both times so they are closing. Please pray there is no bleeding in her brain. That would be very bad news bears! :(. She is in recovery now and I am anxiously waiting to see her. Even harder that Daddy is sick at home! :(
Post Surgery
January 26, 2013
Faith had an okay night and is doing okay today. Working to keep the pain under control so she stays comfortable. She needs to be on IV antibiotics till Monday because of the high risk of infection. We are missing Daddy! He has to stay home because he has a double ear infection and bronchitis. :( Visitors are being limited in the hospital because of the flu epidemic. The Children's Hospital ...is overflowing to Butterworth! Please practice good hygiene and stay out of public if you are sick. It is awful for anyone to be sick and horrible to have a sick child. You may expose a child or person who has compromised immune system or other issues. We never know when Faith might need an urgent surgery and her being ill could cause serious complications.
January 27, 2013
Faith had a good night and is having a good day. She is bored and so are we! She is eating well and just getting Tylenol for pain. Her last does of IV antibiotic is at 8 am tomorrow morning. Hopefully we can blow this Popsicle stand at a decent time tomorrow. We are so anxious to get home. Unfortunately Daddy is still home sick. :(
Playing on the floor. So glad they let me out of my 'jail' crib
Trying to Escape
January 28, 2013
Faith's last dose of Vanco (antibiotic) just finished. Now we are just 'patiently' waiting for Neurosurgery to round on her....
We are home from the hospital. Faith is doing well. Just have to keep from scratching her 3 incisions so she is wearing socks taped to her hands to bed and she is not real impressed with that. It is critical that she doesn't scratch her sutures open or she will probably leak CSF (cerebral spinal fluid) and have to be admitted again. The plan is for an MRI in 3 months and monitor her closely for signs of cyst pressing on brain stem (unable to breathe, swallow) and shunt malfunction (fever, loss of skills, and many others). For now, we are all so glad to be home and sleep in our own beds tonight!
January 29, 2013
Faith had a good night last night and a good day today. She isn't thrilled to have socks on her hands for napping and sleeping but is doing better than we expected. :)
January 14, 2013
MRI day... again. A 3 month follow on brain and one of her abdomen to prepare for up coming reconstructive surgery.
January 24, 2013
Surgery #11 tomorrow at Noon for Faith. The cyst on her brain stem is significantly larger. Her neurosurgeon will place another catheter off her current shunt into the cyst. Your thoughts and / or prayers are much appreciated. ♥
January 25, 2013
My Pre-Surgery Curls
Waiting For Surgery
Faith went into surgery at 1pm and total it will be 5-6 hours. His includes an hour to run antibiotics, getting her set, actual surgery, and post op.
Neurosurgeon was unable to complete the surgery because she started bleeding when they tried to do the 3rd/final incision. He tried it twice and bleeding both times so they are closing. Please pray there is no bleeding in her brain. That would be very bad news bears! :(. She is in recovery now and I am anxiously waiting to see her. Even harder that Daddy is sick at home! :(
Post Surgery
January 26, 2013
Faith had an okay night and is doing okay today. Working to keep the pain under control so she stays comfortable. She needs to be on IV antibiotics till Monday because of the high risk of infection. We are missing Daddy! He has to stay home because he has a double ear infection and bronchitis. :( Visitors are being limited in the hospital because of the flu epidemic. The Children's Hospital ...is overflowing to Butterworth! Please practice good hygiene and stay out of public if you are sick. It is awful for anyone to be sick and horrible to have a sick child. You may expose a child or person who has compromised immune system or other issues. We never know when Faith might need an urgent surgery and her being ill could cause serious complications.
Faith had a good day. Since surgery she has had 2 CTs and they were both clear. We are so thankful for that. She is acting like her happy self and is doing well with pain management. She needs to stay on IV antibiotics till Monday because of the high infection risk. If it wasn't for that, we could go home now. She is getting restless because she feels to good and wants to play and roll around...d but that doesn't work well when you are hooked up to so may things.
The big question is: what are they going to do now about the cyst pressing on her brain stem? The answer is: they don't know yet. For now, it is okay because it is not causing extreme symptoms (I.e. unable to breathe or swallow). She does have a horrible gag reflex so that is a symptom of concern. We will let everyone know the plan when we do. But for now... We don't know and only time will tell. In the meantime, keep our little miracle in your thoughts and prayers. Thank you! ♥
The big question is: what are they going to do now about the cyst pressing on her brain stem? The answer is: they don't know yet. For now, it is okay because it is not causing extreme symptoms (I.e. unable to breathe or swallow). She does have a horrible gag reflex so that is a symptom of concern. We will let everyone know the plan when we do. But for now... We don't know and only time will tell. In the meantime, keep our little miracle in your thoughts and prayers. Thank you! ♥
January 27, 2013
Faith had a good night and is having a good day. She is bored and so are we! She is eating well and just getting Tylenol for pain. Her last does of IV antibiotic is at 8 am tomorrow morning. Hopefully we can blow this Popsicle stand at a decent time tomorrow. We are so anxious to get home. Unfortunately Daddy is still home sick. :(
Playing on the floor. So glad they let me out of my 'jail' crib
Trying to Escape
January 28, 2013
Faith's last dose of Vanco (antibiotic) just finished. Now we are just 'patiently' waiting for Neurosurgery to round on her....
We are home from the hospital. Faith is doing well. Just have to keep from scratching her 3 incisions so she is wearing socks taped to her hands to bed and she is not real impressed with that. It is critical that she doesn't scratch her sutures open or she will probably leak CSF (cerebral spinal fluid) and have to be admitted again. The plan is for an MRI in 3 months and monitor her closely for signs of cyst pressing on brain stem (unable to breathe, swallow) and shunt malfunction (fever, loss of skills, and many others). For now, we are all so glad to be home and sleep in our own beds tonight!
January 29, 2013
Faith had a good night last night and a good day today. She isn't thrilled to have socks on her hands for napping and sleeping but is doing better than we expected. :)
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