Wednesday, August 19, 2009
Update on SK
We did see Sophie Kate's neurologist today. You really never know what to expect going into some of these appointments, but from what I told him he seems to think that the episodes SK has been having are seizures. However, since it has been a year since her last EEG, he does want her to have another one done. We didn't get a lot of information today b/c her doctor will be able to tell so much more from the results of the EEG. He set us up for a video EEG on Tuesday morning. Afterwards he will discuss the results with me and then our options (meds, no meds, etc). I personally want her on as little medication as possible, so we will see what kind of options we have come Tuesday. Thanks for checking in on us.
Tuesday, August 18, 2009
When I Feel All Alone
Well, tomorrow is the day. We will take our little girl to see her neurologist again as we walk in and through yet another chapter in this earthly journey with our sweet Sophie.
The message our Pastor shared on Sunday was about blooming where we are planted, living for God in the circumstances we are in. As I thought about all the people around me and felt myself going into major pity party mode, I wanted to scream (not even knowing any of their circumstances)"yeah, easy for y'all to do go ahead and bloom where you are planted with your perfect families and your perfect children."
As I have had more time to think and pray on this and have tried to pull myself out of the pity party/victim hole that I find myself in way too often, I have thought that this really is how Satan would like us to see ourselves. He likes for me to be isolated, for me to feel alone, for me to feel like I am the only one and even more so for me to feel like God doesn't care for and love me anymore, b/c then he accomplishes his ultimate goal which is to take away my witness for my Savior.
When I am consumed with how unfair I think my situation is, when I am sad b/c of all the things I feel like I am going to miss out on with Sophie Kate, when I feel sorry for myself b/c of my circumstances there really is only one common thread running through the whole thing...I, I, I, me, me, me.
Oh, I am not going to try to fool y'all into thinking that I am this healthy/positive in my thinking all the time. It is only through God's wisdom and strength that I am able to have these moments of clarity from time to time. Sadly, I do find myself thinking a lot about how I have it so bad around here and how everyone else "appears" to be "living the dream." And friends I use "appears" in a very loose sense of the word b/c I am truly only looking in from the outside another quality that I am not proud of, but when I am being honest it is the truth.
Lord, forgive me. Brothers and sisters in Christ forgive me, I know that I am not the only one suffering. Thank you for sticking with us in this journey. Your prayers spoken on our behalf do not go unheard to the Father and do not go unappreciated by our family.
The message our Pastor shared on Sunday was about blooming where we are planted, living for God in the circumstances we are in. As I thought about all the people around me and felt myself going into major pity party mode, I wanted to scream (not even knowing any of their circumstances)"yeah, easy for y'all to do go ahead and bloom where you are planted with your perfect families and your perfect children."
As I have had more time to think and pray on this and have tried to pull myself out of the pity party/victim hole that I find myself in way too often, I have thought that this really is how Satan would like us to see ourselves. He likes for me to be isolated, for me to feel alone, for me to feel like I am the only one and even more so for me to feel like God doesn't care for and love me anymore, b/c then he accomplishes his ultimate goal which is to take away my witness for my Savior.
When I am consumed with how unfair I think my situation is, when I am sad b/c of all the things I feel like I am going to miss out on with Sophie Kate, when I feel sorry for myself b/c of my circumstances there really is only one common thread running through the whole thing...I, I, I, me, me, me.
Oh, I am not going to try to fool y'all into thinking that I am this healthy/positive in my thinking all the time. It is only through God's wisdom and strength that I am able to have these moments of clarity from time to time. Sadly, I do find myself thinking a lot about how I have it so bad around here and how everyone else "appears" to be "living the dream." And friends I use "appears" in a very loose sense of the word b/c I am truly only looking in from the outside another quality that I am not proud of, but when I am being honest it is the truth.
Lord, forgive me. Brothers and sisters in Christ forgive me, I know that I am not the only one suffering. Thank you for sticking with us in this journey. Your prayers spoken on our behalf do not go unheard to the Father and do not go unappreciated by our family.
Thursday, August 13, 2009
Keeping our Heads Above Water
There is so much going on in our family right now and I would give anything if it only had to do with the business of going back to school.
We continue to helplessly watch our baby girl have seizures. It's unbelievably difficult to watch her go through that, each and every one just tears at my heart. Chad and I will be taking her to see her neurologist on Wednesday. Please, please please pray for this appointment. Getting the right medicine (if that's what we decide to do) or combination of medicines can be quite a process in trying to control seizures. The brain damage SK sustained at birth definitely complicates the situation possibly making the seizures harder to control. At this point from my description to the doctors of what the seizures look like, they do not feel that she is in any danger of suffering further damage to her precious little brain.
Her Creator was certainly not surprised or caught off guard by these seizures. Pray that He will shower us and her doctors with His wisdom so that we will make the best decision possible for our girl.
As if that wasn't enough, when it rains it pours....Jacob had tubes put in his ears a week ago and in doing so they found a cyst growing in his right ear. The cyst must be surgically removed and there is certainly concern for his hearing in that ear. We are in for quite a process with this too, depending on how big the cyst is and how involved it is with the bones of the ear, there may be more than one surgery in Jacob's future. It will all start off with a CT scan at the end of this month, we don't have a surgery date set yet.
All of that while I am desperately trying to maintain some sort of normalcy for everyone. The problem is that we don't do normal very well, so I really don't know what I am trying to maintain around here. I guess we are just trying to keep our heads above water. We are overwhelmed and certainly feeling like our family is under attack, yet we are grasping and holding tight to the One who has never let us go. Thank you for keeping our family in your prayers.
We continue to helplessly watch our baby girl have seizures. It's unbelievably difficult to watch her go through that, each and every one just tears at my heart. Chad and I will be taking her to see her neurologist on Wednesday. Please, please please pray for this appointment. Getting the right medicine (if that's what we decide to do) or combination of medicines can be quite a process in trying to control seizures. The brain damage SK sustained at birth definitely complicates the situation possibly making the seizures harder to control. At this point from my description to the doctors of what the seizures look like, they do not feel that she is in any danger of suffering further damage to her precious little brain.
Her Creator was certainly not surprised or caught off guard by these seizures. Pray that He will shower us and her doctors with His wisdom so that we will make the best decision possible for our girl.
As if that wasn't enough, when it rains it pours....Jacob had tubes put in his ears a week ago and in doing so they found a cyst growing in his right ear. The cyst must be surgically removed and there is certainly concern for his hearing in that ear. We are in for quite a process with this too, depending on how big the cyst is and how involved it is with the bones of the ear, there may be more than one surgery in Jacob's future. It will all start off with a CT scan at the end of this month, we don't have a surgery date set yet.
All of that while I am desperately trying to maintain some sort of normalcy for everyone. The problem is that we don't do normal very well, so I really don't know what I am trying to maintain around here. I guess we are just trying to keep our heads above water. We are overwhelmed and certainly feeling like our family is under attack, yet we are grasping and holding tight to the One who has never let us go. Thank you for keeping our family in your prayers.
Monday, August 10, 2009
My Old Friend
Why does the bad always seem to outweigh the good? Why do the lows of the bad news always seem, well, lower than the highs of the good news?
I'll get right to it...two therapists that saw Sophie Kate on Monday saw her having a seizure. I guess I have been in absolute denial since April/May of this year or I have been trying to pretend that I wasn't seeing clearly, when I should have opened my stinkin' eyes and seen clear as day, SK is having seizures.
She's had I guess 8-10 "episodes" as I would have called them since April/May. I have been trying to describe them to her therapists but no one has seen them but me and Chad and we just didn't know. Monday when we were going to pick up her splints, which I was totally excited about, she had one of these "episodes" in front of two therapists and they both told me that this was a seizure.
And instantly, there it was again...my old friend waiting to envelope me in the deep blackness, waiting to take all my joy and happiness away once again. Waiting to drown out all the strides we've made this summer, waiting to overshadow and eclipse all that my little girl is striving for.
Of course, I let my old friend back in as if with open arms. We have spent so much time together over the past 21 months. We know each other so well. It's a silent kind of pain. I never knew that pain could be silent until Sophie Kate was born. Pain hurts doesn't it? When you are injured badly aren't you supposed to scream?? Then what does it mean when there is no sound?
My silent tears pour into some kind of bottomless vastness that never ever fills up, tears just roll but still there is no sound. It must be the silent pain that no heart should ever have to endure. The kind of pain we have no control over, pain that cannot be fixed with medicine or bandages.
The pain that a parent endures as they watch their child suffer. Her cry is so different after she comes out of a seizure. It's a scared cry, my baby girl is scared, she doesn't know what has just happened to her. All I can do is hold her, I can't make it stop. Oh, I'm sure whatever new medicine they throw at us will make them stop, but that medicine will also run the risk of making my girl's sweet smiles disappear too. How could I not have known what was happening to her??
Did we have too many good months, fill our quota of positive steps forward? So she really is going to be just like "they" said she was going to be. When I watch her sleeping she looks totally normal. She doesn't look like anything is wrong with her at all, it's heartbreaking....and here comes the tears and the everpresent silent pain.
You all think I am so strong, that I am dealing with all this and handling it all so well (or maybe you don't), but that is the "fake me." The "fake me" is who you see when I leave this house, it's who you talk to when I answer the phone.....this is where I really dwell and very few can handle it, deal with it, want to see it or want to be around it.
I'll get right to it...two therapists that saw Sophie Kate on Monday saw her having a seizure. I guess I have been in absolute denial since April/May of this year or I have been trying to pretend that I wasn't seeing clearly, when I should have opened my stinkin' eyes and seen clear as day, SK is having seizures.
She's had I guess 8-10 "episodes" as I would have called them since April/May. I have been trying to describe them to her therapists but no one has seen them but me and Chad and we just didn't know. Monday when we were going to pick up her splints, which I was totally excited about, she had one of these "episodes" in front of two therapists and they both told me that this was a seizure.
And instantly, there it was again...my old friend waiting to envelope me in the deep blackness, waiting to take all my joy and happiness away once again. Waiting to drown out all the strides we've made this summer, waiting to overshadow and eclipse all that my little girl is striving for.
Of course, I let my old friend back in as if with open arms. We have spent so much time together over the past 21 months. We know each other so well. It's a silent kind of pain. I never knew that pain could be silent until Sophie Kate was born. Pain hurts doesn't it? When you are injured badly aren't you supposed to scream?? Then what does it mean when there is no sound?
My silent tears pour into some kind of bottomless vastness that never ever fills up, tears just roll but still there is no sound. It must be the silent pain that no heart should ever have to endure. The kind of pain we have no control over, pain that cannot be fixed with medicine or bandages.
The pain that a parent endures as they watch their child suffer. Her cry is so different after she comes out of a seizure. It's a scared cry, my baby girl is scared, she doesn't know what has just happened to her. All I can do is hold her, I can't make it stop. Oh, I'm sure whatever new medicine they throw at us will make them stop, but that medicine will also run the risk of making my girl's sweet smiles disappear too. How could I not have known what was happening to her??
Did we have too many good months, fill our quota of positive steps forward? So she really is going to be just like "they" said she was going to be. When I watch her sleeping she looks totally normal. She doesn't look like anything is wrong with her at all, it's heartbreaking....and here comes the tears and the everpresent silent pain.
You all think I am so strong, that I am dealing with all this and handling it all so well (or maybe you don't), but that is the "fake me." The "fake me" is who you see when I leave this house, it's who you talk to when I answer the phone.....this is where I really dwell and very few can handle it, deal with it, want to see it or want to be around it.
Not Me Monday
I am so NOT up way earlier than I should be today after a totally fun movie night with all my boys in which they did NOT stay up until after 11pm. I am still trying to convince myself that we do NOT only have 2 more days until school starts, but unfortunately myself cannot argue with the school calendar. Sadly, it is a reality that school starts this Wednesday around here.
Thank goodness we are NOT going to be in a complete state of shock when that alarm clock goes off at "I don't want to even think about it" am. Thank goodness that we have NOT been staying up too late and that we are NOT going to be having any problem with going to bed early Tuesday night, since we have been preparing for our back to school routine for some time now, yeah right!
My oldest and my youngest sons are definitely NOT going back to school with hair that is WAY too long, sorry grandparents. I did NOT splurge on a Star Wars-The Clone Wars lunch box for my 3 year old Star Wars fanatic just b/c I knew the look on his face would be priceless. Thank you G-man, you did not disappoint.
I guess I should also be relieved since Grey, SK and I are NOT going to miss our big brothers like CRAZY!! At least I will NOT be sad about the loss of our lazy mornings and carefree days, sniff sniff. Also, good thing I am NOT dreading homework too, huh? Am I convincing anyone yet, b/c I am NOT convincing myself.
Oh and lastly Cooper and I were NOT already sent to the office. That's right, you heard me, I just want to state for the record that Cooper and I were NOT sent to the office on "Meet the Teacher" day. We are bus newbies this year and Cooper's mama didn't know his bus number. Turns out that's information that the child and his teacher actually need to know, who knew?
Friday, August 7, 2009
Sophie Kate's Biggest Brother
Our girl in her stander...
I love how happy she is...
These next few pictures are extra special to me. I feel like I have to give a little background first. Of all three of the boys, Cooper has been the most standoffish (if that's a word) when it comes to Sophie Kate. I don't know if it's b/c he knows more about what's going on than her other brothers do, or if it's that he's a little scared, or just being overly cautious. I don't really know, probably a combination of all three. Nevertheless, he has the least to do with her of all 3 boys. We try to encourage him and certainly answer all of his questions when he has them, but he kind of does his thing and lets SK do her thing. Until now...
This was completely spontaneous on his part. It gave me goosebumps all over, such a sweet moment between my oldest and my youngest. Cooper was reading "Brown Bear" to his sister. I am so thankful that he has found a way to interact and connect with her. His heart is so tender and I know full well how difficult it is to take this all in. He's such a great big brother.
We continue to work with SK each day in her stander and in her gait trainer. Hopefully each day she is gaining more and more strength. She is definitely getting tired from all the activity, so that must mean something. She's back to 3 naps a day and I use that term very loosely when it comes to Sophie. It's more like hold me for 15-20 minutes while I watch a little TV with my eyes closed, then I'll be good to go. She's gotta make sure that the world continues to revolve around her over here. Mission accomplished Sophie, you got us!!
I love how happy she is...
These next few pictures are extra special to me. I feel like I have to give a little background first. Of all three of the boys, Cooper has been the most standoffish (if that's a word) when it comes to Sophie Kate. I don't know if it's b/c he knows more about what's going on than her other brothers do, or if it's that he's a little scared, or just being overly cautious. I don't really know, probably a combination of all three. Nevertheless, he has the least to do with her of all 3 boys. We try to encourage him and certainly answer all of his questions when he has them, but he kind of does his thing and lets SK do her thing. Until now...
This was completely spontaneous on his part. It gave me goosebumps all over, such a sweet moment between my oldest and my youngest. Cooper was reading "Brown Bear" to his sister. I am so thankful that he has found a way to interact and connect with her. His heart is so tender and I know full well how difficult it is to take this all in. He's such a great big brother.
We continue to work with SK each day in her stander and in her gait trainer. Hopefully each day she is gaining more and more strength. She is definitely getting tired from all the activity, so that must mean something. She's back to 3 naps a day and I use that term very loosely when it comes to Sophie. It's more like hold me for 15-20 minutes while I watch a little TV with my eyes closed, then I'll be good to go. She's gotta make sure that the world continues to revolve around her over here. Mission accomplished Sophie, you got us!!
Monday, August 3, 2009
Here Comes the Sun
Here Comes the Sun...those words have more than one meaning to our family right now. I thought I would gather together some of the fun photos from our summer as it sadly draws to an end. Also though, the Son continues to shine down upon our family as we are certainly experiencing some of our best times together, at least the best time in the past 21 months. We are not taking our smiles for granted...
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