The words just don't seem to go together to me - Children's Hospital. Don't get me wrong I'm soooo thankful to have a place that focuses on healing children and to have a place like that so near to our home - we are very lucky. Somehow though I can't manage to get over seeing and hearing those two words together- Children's Hospital. Last week while we were in the hospital there were several things that I struggled with not only concerning Camilla being a patient there and what she was having to deal with but just the fact that anyone has to be in this place. If you ever have to go to CH (and I hope you never do) I recommend keeping your head down and don't speak to anyone until you get where your going! Ha - bet you'd bump into quite a few walls that way! But seriously, last week when I'd make my coffee run down the street or even to the main floor for the cafeteria I made the mistake of looking around. Looking around to see an ice cream truck parked in front of a hospital, an empty playground outside of the hosptial (all of the children are inside), the emergency helicopter continuously taking off and landing, a VERY upset family in the chapel, walking down the halls and hearing screams and crys, seeing 'quarantined' signs on doors of rooms with a crib in it, a Mother in the main lobby whose whole world had obviously just collapsed and a small funeral home van pulling up to the back of the hospital. I struggled with being identified as a "Children's Mom" 4 blocks away at Starbucks because of the band on my wrist and having to relay why my child was there to a stranger and then having to listen to a Mother say words like 'bone marrow transplant' and 'luekemia' about her son. It is so very difficult to erase these voices and images and then to think that I'm part of this group. I'm not an outsider looking in. I have a child with very serious medical problems and a very unsure road ahead of her laying in that hospital the same as the other Moms I see around me. That realization hurt the most - that and the fact that this will probably not be our last visit to this place.
Please bear with me - good days and bad - I promise to post about Camilla's tests and pics from our stay next! We have also celebrated her fourth birthday recently - pics to follow soon!
Friday, August 28, 2009
Wednesday, August 26, 2009
video from hospital-
I'll be posting pics soon of our stay at Children's this week but I wanted to go ahead and post this video - it shows how the wires are wrapped and gives an idea of how she was confined to the bed for 48 straight hrs. She sure was a trooper!
Monday, August 24, 2009
medical update
camilla is in Children's hospital until Wednesday-48 hour EEG followedby an MRI-please keep her in your thoughts and prayers
Tuesday, August 11, 2009
school days, school days, wonderful golden rule days...
Camilla started school today! She loved going back to her classroom and seeing her teachers again - Mrs. Moore, Mrs. Morgan and Mrs. Campbell. She really didn't want to leave the house this morning and it took some enticing but once she got to the classroom she immediately began working on puzzles and meeting new friends. It's going to be a great year!
what an adventure!
This past weekend Brandon and I took Camilla to Alabama Adventure for one last summer-fun blowout before school started back! She loved the water park, the train, the carosel, the mini ferris wheel and most of all the log flume! Sorry, some of the shots are blurry and my batteries died half-way through the day!
Wednesday, July 29, 2009
medical update
OK - I have put this off as long as I can - time to do another medical update on Camilla. I love that so many people are concerned and interested to know how we are all doing and especially how Camilla is but to be honest, those have been some tough questions to answer this summer. The main reason for this very blunt, honest post about Camilla's situation is that I have been conversing through some of the online support groups and following other blogs of families dealing with similar situations and they are interested in Camilla's story.
For the majority of her illness (diagnosed with Infantile Spasms at 6 mo then Intractable Epilepsy at 12 mo) her seizures have been myoclonic 'jerks'. For Camilla this has meant that her upper body would stiffen and her arms would straighten for a couple of seconds during the seizure and then she would come out of it. At times these myoclonic jerks have come in clusters, lasted longer, caused shaking, caused 'brain fog' and caused her to be upset but for the most part these have not been 'severe' seizures (as if you can even rate something so horrible in the first place). She only went through one period at about nine months old where she began having multiple seizure types that invloved atonic, partial complex, abscense and myoclonic. Some of these were severe but, for the most part, ceased once we began the ketogenic diet. At the beginning of this summer Camilla's seizures began to change. Techincally they are still considered to be myoclonic but have worsened with their presentation. A bad seizure these days involves complete body involvement, last 20-30 seconds, may cause her to vomit afterwards, may cause her to cry out or moan during and causes her to be very upset, frantic and confused following. Needless to say this is a very disturbing event, not only for those watching, but for Camilla mostly. This week we began taking a new seizure med that we are very unsure about. Our neuro has pushed for months for us to begin this newly approved medicine, Banzel, and after all of our questions and research we are still so very unsure that this will help (however it is the lesser of our evil options at this time). At the last visit the neuro reconfirmed a new diagnosis that we have been dreading for years, Lennox Gastaut Syndrome. It is a very rare, severe form of childhood epilepsy and even though he claims that she is 'highly functioning' LGS it is still a devastating blow. He has scheduled Camilla for a 48 hr EEG and another MRI beginning on Aug. 24th. Please keep her in your thoughts and prayers leading up to and during these tests. They will be very difficult for her to deal with but we need this information to help determine our course of treatment.
Along with the very-pressing medical issues we are dealing with, we are also constantly concerned with her cognitive development, speech, motor skills, etc... Some 'side-effects' of having a child with neurological problems is their inability to 'shut down' the activity in their brain resulting in little to no sleep (for the past 3 months she has operated on an average of 4-5 hrs of sleep a night and 20 minutes during the day) and marked hyperactivity.
Through her illness we have endured many ups and downs. We have worried over medical condition, development, doctors, surgery, therapy, medicines, side effects, tests, diagnosis' and all the other 'usual' concerns. We hope and pray that this latest change will be just another of the temporary 'downs' on this roller-coaster ride and we hope the next 'up' will take us higher than she's been before. You see, we will continue to hold on to the hope that one day Camilla will be seizure-free, happy, healthy and leading a 'normal' life with no medical limitations.
Camilla will be 4 next month and as we prepare for parties and presents we realize that even though this summer has been a little more difficult and seen a little less progress than the last, we should still be celebrating because Camilla is a very happy, beautiful little girl who loves to play in her room, loves to swim and take a bath, loves to color, loves to laugh, loves to eat and loves her family. When we look at the 'big picture' and what we were told to expect at the beginning of this journey, we realize that she has come so far. She is such a little trooper through everything we have to put her through. She is such a stubborn, hard-headed little angel who I know will continue to fight these battles before her - and she will continue to amaze us with her grace, beautiful smile and contagious laugh in doing so.
For the majority of her illness (diagnosed with Infantile Spasms at 6 mo then Intractable Epilepsy at 12 mo) her seizures have been myoclonic 'jerks'. For Camilla this has meant that her upper body would stiffen and her arms would straighten for a couple of seconds during the seizure and then she would come out of it. At times these myoclonic jerks have come in clusters, lasted longer, caused shaking, caused 'brain fog' and caused her to be upset but for the most part these have not been 'severe' seizures (as if you can even rate something so horrible in the first place). She only went through one period at about nine months old where she began having multiple seizure types that invloved atonic, partial complex, abscense and myoclonic. Some of these were severe but, for the most part, ceased once we began the ketogenic diet. At the beginning of this summer Camilla's seizures began to change. Techincally they are still considered to be myoclonic but have worsened with their presentation. A bad seizure these days involves complete body involvement, last 20-30 seconds, may cause her to vomit afterwards, may cause her to cry out or moan during and causes her to be very upset, frantic and confused following. Needless to say this is a very disturbing event, not only for those watching, but for Camilla mostly. This week we began taking a new seizure med that we are very unsure about. Our neuro has pushed for months for us to begin this newly approved medicine, Banzel, and after all of our questions and research we are still so very unsure that this will help (however it is the lesser of our evil options at this time). At the last visit the neuro reconfirmed a new diagnosis that we have been dreading for years, Lennox Gastaut Syndrome. It is a very rare, severe form of childhood epilepsy and even though he claims that she is 'highly functioning' LGS it is still a devastating blow. He has scheduled Camilla for a 48 hr EEG and another MRI beginning on Aug. 24th. Please keep her in your thoughts and prayers leading up to and during these tests. They will be very difficult for her to deal with but we need this information to help determine our course of treatment.
Along with the very-pressing medical issues we are dealing with, we are also constantly concerned with her cognitive development, speech, motor skills, etc... Some 'side-effects' of having a child with neurological problems is their inability to 'shut down' the activity in their brain resulting in little to no sleep (for the past 3 months she has operated on an average of 4-5 hrs of sleep a night and 20 minutes during the day) and marked hyperactivity.
Through her illness we have endured many ups and downs. We have worried over medical condition, development, doctors, surgery, therapy, medicines, side effects, tests, diagnosis' and all the other 'usual' concerns. We hope and pray that this latest change will be just another of the temporary 'downs' on this roller-coaster ride and we hope the next 'up' will take us higher than she's been before. You see, we will continue to hold on to the hope that one day Camilla will be seizure-free, happy, healthy and leading a 'normal' life with no medical limitations.
Camilla will be 4 next month and as we prepare for parties and presents we realize that even though this summer has been a little more difficult and seen a little less progress than the last, we should still be celebrating because Camilla is a very happy, beautiful little girl who loves to play in her room, loves to swim and take a bath, loves to color, loves to laugh, loves to eat and loves her family. When we look at the 'big picture' and what we were told to expect at the beginning of this journey, we realize that she has come so far. She is such a little trooper through everything we have to put her through. She is such a stubborn, hard-headed little angel who I know will continue to fight these battles before her - and she will continue to amaze us with her grace, beautiful smile and contagious laugh in doing so.
Friday, July 24, 2009
family beach pics
those of you who follow the blog that are interested in checking out the family pics we had made a couple of weeks ago at the beach can go to www.aimeereynoldsphotography.com and click on clients from there type in the password Camilla
we are so pleased with these pics - thanks Aimee for being so good to us
we are so pleased with these pics - thanks Aimee for being so good to us
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