Yesterday Sadie had a check up with her eye Dr. Have I ever told you how much I love her eye Dr? He is the most kindest, gentlest, smartest man I have ever met. He never makes you feel stupid. He always validates your feelings. He loves questions and teaching you new things. He is not just knowledgeable in eye issues, but in a bazillion areas. He always listens to your concerns and never blows them off. I wish all of her Dr's were like this man. You can truly tell he loves his career and cares about all these kids that he sees. However, because he cares so much and never turns any pt away, it is ALWAYS a long visit. He is always at least an hour or two behind. Which is kind of annoying, but at the same time if it was my child that had an emergency I would want him to work her into his schedule. I have learned to just plan on being there for a couple of hours.
Sadie usually cooperates very well for all of her Dr appts, probably because she is so comfortable at all these places after being to them a million times (kinda sad, huh?). Well yesterday was a different story. She wanted nothing to do with them and she let them know that. Since she has always cooperated with them, I didn't know what they would do with an uncooperative child. I soon found out. I had to help hold her down and they used what looked like a torture devise on her eyes to hold the lids open. My poor girl. In the end it was all worth it though. She got a perfect check up. No new eye issues and some of her old issues are improving. I was so happy when I left that appt. An appt that actually went well with no surprises. I love those kind.
The Dr actually called Sadie "cool". I burst out laughing. I so did not expect that coming out of his mouth. I asked why? "Sadie has cool medical issues that I've never seen and may never see again. She is so rare and unique and is teaching me about a new medical condition that will help me help other kids in the future. That is an awesome gift to be able to give someone." I looked at him and said "I totally agree. She is one of a kind, teaching myself and others many lessons."
January 30, 2013
January 29, 2013
Random moments bring me to tears
Believe it or not I am not an emotional mess. I know I write about emotions a lot and things that bother me, but I swear I do not ball my eyes out 24/7. It actually is the complete opposite. I keep a lot of things buried deep inside and then all of a sudden I explode. I really have been trying to work on this fault of mine. I have lost out on different things in my life because I pretend I do not care, or I just do not want it held against me later in life, or I just do not like drama, or I do not want people to see me as weak, or I do not want to hurt others feelings. But all of a sudden something happens and I am a mess. That happened tonight.
Everyone who is reading this is probably going to laugh, but it was because of the show The Bachelor. Not this weeks episode, but last weeks (thank you to DVR, I got to watch it tonight). For those that do not watch it I'll give you a brief little description of the show. The Bachelor, Sean, takes a girl on a date and they rent out an amusement park for just them, but they include 2 girls from a charity called Starlight Children's Foundation who have chronic/terminal illnesses. What do you think their chronic/terminal disease is... mitochondrial disease.
I lost it! All my girls and my husband were in bed and it was just me. I cried and cried and cried. They were both tears of sadness and tears of joy. Here are 2 teenagers that were having fun and do not let their illness or disability keep them from enjoying life. They do not let this stupid disease define them and win. This is what I want for Sadie. This stupid disease, and her other medical issues will not get in her way of living life to HER fullest. It is these random moments that light a fire under my butt to make sure I am doing everything I possibly can for my little girl.
It is also these moments that bring me to my knees crying and trying to figure out why MY little girl has medical issues that are described under chronic/terminal illnesses. This news is not a shocker to me. I've known the outcome from the beginning, but it is random moments like this when it is said out load unexpectedly that it stabs me in the heart. Not just stabs me, but the knife twists back and forth and then gets pulled out just to be cleaned off and put away for the next random moment when I am not expecting it. I know that is a graphic description, but honestly that does not even begin to describe what these random moments do to me.
Everyone who is reading this is probably going to laugh, but it was because of the show The Bachelor. Not this weeks episode, but last weeks (thank you to DVR, I got to watch it tonight). For those that do not watch it I'll give you a brief little description of the show. The Bachelor, Sean, takes a girl on a date and they rent out an amusement park for just them, but they include 2 girls from a charity called Starlight Children's Foundation who have chronic/terminal illnesses. What do you think their chronic/terminal disease is... mitochondrial disease.
I lost it! All my girls and my husband were in bed and it was just me. I cried and cried and cried. They were both tears of sadness and tears of joy. Here are 2 teenagers that were having fun and do not let their illness or disability keep them from enjoying life. They do not let this stupid disease define them and win. This is what I want for Sadie. This stupid disease, and her other medical issues will not get in her way of living life to HER fullest. It is these random moments that light a fire under my butt to make sure I am doing everything I possibly can for my little girl.
It is also these moments that bring me to my knees crying and trying to figure out why MY little girl has medical issues that are described under chronic/terminal illnesses. This news is not a shocker to me. I've known the outcome from the beginning, but it is random moments like this when it is said out load unexpectedly that it stabs me in the heart. Not just stabs me, but the knife twists back and forth and then gets pulled out just to be cleaned off and put away for the next random moment when I am not expecting it. I know that is a graphic description, but honestly that does not even begin to describe what these random moments do to me.
January 25, 2013
The results are in
The Dr called me this morning to talk about Sadie's blood test results. I'm not sure whether to be happy or sad. I'll try to explain the best that I can. All of the hormone test were normal. No abnormalities. Which means her pituitary gland is working perfectly normal. Normal. That's fantastic. Not to many people use the word normal to describe anything that involves Sadie. I was thrilled, until we started to discuss the one abnormal lab.
Along with all the hormones she checked some basic labs too like her electrolytes, blood cell counts, etc... and one was abnormal. The prealbumin. Prealbumin checks nutrition levels. If the levels are low it means that the person is malnourished. Sadie's is low, not extremely low, but low, maybe of concern, maybe not. There are a couple reasons it could be low. 1. Because of her recent hospital stay and not tolerating her food she was "malnourished" for a couple of days. 2. We may need to change her food regimen. 3. She may have an absorption issue in her intestines.
Though I am hoping it is because of her recent illness, realistically I really don't think that that is what the issue is. First of all it was 26 days ago. Second it only lasted a couple of days. It should not have effected her that much where we are still seeing the effects 3 weeks later. So maybe it is her food. We did change her food when she turned 1 yrs old. We decreased her calories because she was now "obese" (according to their charts of weight vs height). Maybe we decreased tooo much, she also has lost 1.5 lbs. I will be talking to the nutritionist about this later.
Although I REALLY am hoping that it is not reason number 3, it makes the most sense. This is why. That dang mitochondrial disease!! Since the blood test showed that her hormones are not the reason for the poor weight gain, short stature, hemihypertrophy, low muscle tone, etc... it does give us one more reason to lean towards the fact that she does have mitochondrial disease. Even though mitochondrial disease can effect all parts of your body it tends to attack certain organs more, the digestive system being one of them. We already know that Sadie has poor suck/swallow (part of the digestive system). We already know that some days she can't handle her food and she dry heaves/vomits and gets extremely fussy (part of the digestive system). Now the blood test are showing malnourishment, that means that the intestines are not absorbing the nutrients that she needs to gain weight and grow (again part of the digestive system). Do you see the pattern?
What do we do now? We will change her food regimen, see if that changes anything. Then we continue to do what we do best, just wait and see! And of course love the snot out of her. :)
Along with all the hormones she checked some basic labs too like her electrolytes, blood cell counts, etc... and one was abnormal. The prealbumin. Prealbumin checks nutrition levels. If the levels are low it means that the person is malnourished. Sadie's is low, not extremely low, but low, maybe of concern, maybe not. There are a couple reasons it could be low. 1. Because of her recent hospital stay and not tolerating her food she was "malnourished" for a couple of days. 2. We may need to change her food regimen. 3. She may have an absorption issue in her intestines.
Though I am hoping it is because of her recent illness, realistically I really don't think that that is what the issue is. First of all it was 26 days ago. Second it only lasted a couple of days. It should not have effected her that much where we are still seeing the effects 3 weeks later. So maybe it is her food. We did change her food when she turned 1 yrs old. We decreased her calories because she was now "obese" (according to their charts of weight vs height). Maybe we decreased tooo much, she also has lost 1.5 lbs. I will be talking to the nutritionist about this later.
Although I REALLY am hoping that it is not reason number 3, it makes the most sense. This is why. That dang mitochondrial disease!! Since the blood test showed that her hormones are not the reason for the poor weight gain, short stature, hemihypertrophy, low muscle tone, etc... it does give us one more reason to lean towards the fact that she does have mitochondrial disease. Even though mitochondrial disease can effect all parts of your body it tends to attack certain organs more, the digestive system being one of them. We already know that Sadie has poor suck/swallow (part of the digestive system). We already know that some days she can't handle her food and she dry heaves/vomits and gets extremely fussy (part of the digestive system). Now the blood test are showing malnourishment, that means that the intestines are not absorbing the nutrients that she needs to gain weight and grow (again part of the digestive system). Do you see the pattern?
What do we do now? We will change her food regimen, see if that changes anything. Then we continue to do what we do best, just wait and see! And of course love the snot out of her. :)
January 24, 2013
Added another Dr
Well today we added another Dr to Sadie's list of Dr's. I know, a shocker, huh? I knew there was a possibility of adding this specialty, just was not sure when we were going to. Well the time was today. We saw an endocrinologist (that makes Dr #15, but who's counting). Why? For a couple of different reasons. 1. Sadie has multiple midline brain malformations. The pituitary gland is in that midline, and even though the MRI said the pituitary gland was intact and the proper size does not mean that it remained the proper size over or working correctly over the last 15 months 2. Sadie is of short stature. She is proportionate, but short. She just started wearing 6-9 mo clothes. 3. Over the last 6 mo or so it has become apparent that her right leg is becoming longer then her left. So those are the main reasons that we thought it would be a good idea to chat with this Dr.
I filled out all the paperwork ahead of time which took forever because of all of her issues and Dr's. The Dr was very thankful for it because she said that she sat down last night to get prepped for today's visit and she started to get a little overwhelmed trying to figure out what was what, who was who, tests that had been down, and tests that she would like to have done. After all the discussions, her assessment, going over her MRI she decided to run all the tests for her hormone levels. She definitely believes that some of her issues could very well be connected to her hormone levels.
What I found interesting though is that if these hormone levels are not correct her body would be reacting as if she had mitochondrial disease. They have the same effect on the body. After I realized how similar they sounded, I pointed this out to the Dr and she agreed that that is one of the reasons that it is so hard to diagnose mitochondrial disease because it can mask itself in many other diseases.
Since this sparked my interest I immediately took Sadie over to the lab and had her blood drawn right after the appt (only took 2 pokes this time, unlike 20 pokes in the past). Wouldn't that be something if this whole time we were blaming her mitochondria when in fact it was her pituitary gland? We can actually do something about hormones. I have so many thoughts going on in my head tonight. I really wish tomorrow would hurry up and come. I just want answers. This could be one step closer to diagnosing her with something!
I filled out all the paperwork ahead of time which took forever because of all of her issues and Dr's. The Dr was very thankful for it because she said that she sat down last night to get prepped for today's visit and she started to get a little overwhelmed trying to figure out what was what, who was who, tests that had been down, and tests that she would like to have done. After all the discussions, her assessment, going over her MRI she decided to run all the tests for her hormone levels. She definitely believes that some of her issues could very well be connected to her hormone levels.
What I found interesting though is that if these hormone levels are not correct her body would be reacting as if she had mitochondrial disease. They have the same effect on the body. After I realized how similar they sounded, I pointed this out to the Dr and she agreed that that is one of the reasons that it is so hard to diagnose mitochondrial disease because it can mask itself in many other diseases.
Since this sparked my interest I immediately took Sadie over to the lab and had her blood drawn right after the appt (only took 2 pokes this time, unlike 20 pokes in the past). Wouldn't that be something if this whole time we were blaming her mitochondria when in fact it was her pituitary gland? We can actually do something about hormones. I have so many thoughts going on in my head tonight. I really wish tomorrow would hurry up and come. I just want answers. This could be one step closer to diagnosing her with something!
January 22, 2013
Normal
It is hard to take out my feelings when it comes to Sadie. What do I mean? To me her life is not normal. I feel bad for her. I feel bad that she can't hear. I feel bad that she can't sit up by herself. I feel bad that she can't walk or even stand up yet. I feel bad that even though she is learning to roll over, that some days she does not have enough energy to rollover. I feel bad she just lays there day after day after day. I feel bad that she is not "talking". I feel bad that she does not like to be held, so she misses out on being rocked and carried around or just sitting on our lap. I feel bad cause I think she is bored. I feel bad cause I feel like a neglect her.
But when I take out my feelings and just observe her... Sadie is a baby that is happy, content, smiley, even giggly on some days. She does not know any different. This is her normal. She doesn't know that she is supposed to be crawling, walking, playing, hearing, eating by mouth, "talking".
What is normal? According to Bing dictionary: 1. usual: conforming to the usual standard, type, or custom 2. healthy: physically, mentally, and emotionally healthy 3. occurring naturally: maintained or occurring in a natural state.
According to that definition, Sadie is normal. She is conforming slower then the typical developing child, but she is conforming (it does not say how fast one has to conform). She is healthy in all 3 of those aspects. And everything that is going on with her is occurring naturally in a natural state.
So who wants to argue with me that she is not normal? Normal is what you expect in your own life. This is what she expects in her life. As her mom I want to be an educator to her, my other girls, and to all others that I come in contact with that we are all normal, whatever our normal may be. I want to teach people to not be shy, to know how to react around her as she grows up, to step up and interact with her, to see that she is actually normal.
But when I take out my feelings and just observe her... Sadie is a baby that is happy, content, smiley, even giggly on some days. She does not know any different. This is her normal. She doesn't know that she is supposed to be crawling, walking, playing, hearing, eating by mouth, "talking".
What is normal? According to Bing dictionary: 1. usual: conforming to the usual standard, type, or custom 2. healthy: physically, mentally, and emotionally healthy 3. occurring naturally: maintained or occurring in a natural state.
According to that definition, Sadie is normal. She is conforming slower then the typical developing child, but she is conforming (it does not say how fast one has to conform). She is healthy in all 3 of those aspects. And everything that is going on with her is occurring naturally in a natural state.
So who wants to argue with me that she is not normal? Normal is what you expect in your own life. This is what she expects in her life. As her mom I want to be an educator to her, my other girls, and to all others that I come in contact with that we are all normal, whatever our normal may be. I want to teach people to not be shy, to know how to react around her as she grows up, to step up and interact with her, to see that she is actually normal.
January 21, 2013
Blah... is over! Thank Goodness
It's amazing how one little thing can make you change your perception, your attitude. Lately, I've been getting so frustrated with Dr's and feeling so down about stuff going on with Sadie that I forgot to remember the miracle she is and the miracle that my other 2 little girls are to me.
Last week one of my best friends that I've had since Jr high had her first baby. An absolutely adorable little boy with big, chubby cheeks (the kind of cheeks that you just want to pinch and squish and just kiss thousands of times). Unfortunately, I could not go see them because of the fact that they live in California and I am here in Michigan. However, we are so lucky to live in this day and age of facebook and text messaging so that I could still see him just an hour old. As I was looking at a picture of her and this sweet little baby, you could just see and feel the love and happiness that was written all over her face. In that moment all the feelings and love and happiness that I had when all three of my babies were delivered came rushing back to me and I couldn't help but smile, tear up, and be so thankful that I have these beautiful, perfect 3 little girls that drive me crazy from time to time. Yes, I said perfect. Yes, I'm including Sadie as being perfect. She was perfectly created in God's eyes...with her small brain, mitochondrial disease, hole in her heart, deafness, facial paralysis and all. Even though it does not make sense to me, this is how God wanted Sadie to be. So yes, Sadie is perfect!
Last week one of my best friends that I've had since Jr high had her first baby. An absolutely adorable little boy with big, chubby cheeks (the kind of cheeks that you just want to pinch and squish and just kiss thousands of times). Unfortunately, I could not go see them because of the fact that they live in California and I am here in Michigan. However, we are so lucky to live in this day and age of facebook and text messaging so that I could still see him just an hour old. As I was looking at a picture of her and this sweet little baby, you could just see and feel the love and happiness that was written all over her face. In that moment all the feelings and love and happiness that I had when all three of my babies were delivered came rushing back to me and I couldn't help but smile, tear up, and be so thankful that I have these beautiful, perfect 3 little girls that drive me crazy from time to time. Yes, I said perfect. Yes, I'm including Sadie as being perfect. She was perfectly created in God's eyes...with her small brain, mitochondrial disease, hole in her heart, deafness, facial paralysis and all. Even though it does not make sense to me, this is how God wanted Sadie to be. So yes, Sadie is perfect!
January 17, 2013
Blah!
I have been so blah lately, in this funk that just doesn't seem to be going away. I am tired all the time and I have had headaches off and on (mostly on) for the last 3 weeks. If you couldn't tell from my last post, I'm been very frustrated lately too.
It all started around the time that Sadie was in the hospital. Is it because it is now January and it is such a blah, boring month? Is it because the weather is so blah? Is it because the holidays and fun are over for a while? Is it because I saw a side of Sadie that I haven't seen before? Is it because I'm exhausted? Is it because I expect too much from Dr's and they are letting me down? Is it because I am a "fixer" and when I can't "fix" something I get angry? Is it because I am ready for some kind of a change in my life but I don't know what? Is it just EVERYTHING right now? YES!!!!! It is all of the above (and probably then some).
Ever since Sadie has been born (well maybe not the first month or so, but pretty much from the beginning) I have changed the way I look and think about things. I had to. Otherwise I would be so down on life and I would make my life, my husbands life, my kids lives, and everyone else's life around me, miserable. Who wants to go through life miserable? Not me, it's too short. There are too many positive things in life to always be focusing on the negative. However, right now... I'm having a hard time finding the positive. I really am trying to stay positive. My favorite saying "If you don't like something, change it. And if you can't change it, change the way you think about it". So I have been saying this to myself everyday.
I can't say that it works everyday, but it is getting me through the day. January is almost over, spring will be here soon, my chiropractor is working on my headaches, the "change" I need: I go through this stage at least twice a year I know I'll get over it. What I can't get past is the stuff that deals with Sadie. I can't fix her and it is breaking my heart. It takes a little piece of me every time I see her "differences". Let me explain.
I see Sadie as a normal baby. I don't see her as a "sick" baby or a baby with "special needs". I don't treat her any differently then I treat my other 2 girls. It's very easy to forget all the things that she has going on on the inside of her body. Yes she has therapy, yes she eats with a g tube, yes she has a lot of Dr's. But really that is it. She's not constantly sick, she doesn't have a bunch of tubes and wires coming off of her, she doesn't look different (except her pirate grin, which I don't even see anymore because I am so use to it). As far as I am concerned she is normal. BUT every once in awhile something comes up and slaps me in the face and kicks my butt back to reality. And when that happens I start getting angry. What kicked me in the butt this time? 2 things. 1. Was that she got sick. All babies get sick. But the fact that what she got sick with was seizures AND a respiratory infection and those are the 2 things that are supposed to effect her most in life and they both happened. IT SUCKED!!! Just thinking that she is following the patterns that I was told she would. I don't want her to follow their predictions. She has not up to now, so why is she starting? I do not want that reality. I want her to stay in her safe bubble and against the odds. And 2. I saw her around her peers. I see what she is "supposed" to be doing. She is obviously not doing the same stuff. I try not to let it bother me. She is progressing at her own speed and I could not be more proud of what she has accomplished, how far she has come, and what odds she has beaten. But it makes me angry that she has to work so much harder at everything in life.
Then this anger starts turning into anger towards the Dr's. Not even towards one in particular. I just want one Dr that will take care of all of her and fight to find answers and at least pretend that they really truly care. I just have not found that one Dr yet. Do they even exist or am I just hallucinating or just having wishful thinking?
I am exhausted! I am tired of always having to think what is next, tired of having to think like a Dr, tired of having to do my own research on everything, tired of having to be an advocate, tired of having to be a nurse, tired of having to be a therapist. I just want to be a mommy! A regular mommy that has regular concerns. I know that is why I am tired all the time and why I have headaches. People tell me "you need a vacation", "you need a break", "you need to have time for you". I 100% agree! However, it's not realistic. On many different levels, it's not realistic.
I'm sorry this is not a very perky, happy post. But this blog is actually helping me a lot with sorting out feelings and getting things out of my head. Unfortunately, some of the bad things have to get out of my head too, to be able to get back to the happy stuff. Thanks for listening/reading. I will get through this. If Sadie can fight to get past her obstacles, I can fight to get past mine.
It all started around the time that Sadie was in the hospital. Is it because it is now January and it is such a blah, boring month? Is it because the weather is so blah? Is it because the holidays and fun are over for a while? Is it because I saw a side of Sadie that I haven't seen before? Is it because I'm exhausted? Is it because I expect too much from Dr's and they are letting me down? Is it because I am a "fixer" and when I can't "fix" something I get angry? Is it because I am ready for some kind of a change in my life but I don't know what? Is it just EVERYTHING right now? YES!!!!! It is all of the above (and probably then some).
Ever since Sadie has been born (well maybe not the first month or so, but pretty much from the beginning) I have changed the way I look and think about things. I had to. Otherwise I would be so down on life and I would make my life, my husbands life, my kids lives, and everyone else's life around me, miserable. Who wants to go through life miserable? Not me, it's too short. There are too many positive things in life to always be focusing on the negative. However, right now... I'm having a hard time finding the positive. I really am trying to stay positive. My favorite saying "If you don't like something, change it. And if you can't change it, change the way you think about it". So I have been saying this to myself everyday.
I can't say that it works everyday, but it is getting me through the day. January is almost over, spring will be here soon, my chiropractor is working on my headaches, the "change" I need: I go through this stage at least twice a year I know I'll get over it. What I can't get past is the stuff that deals with Sadie. I can't fix her and it is breaking my heart. It takes a little piece of me every time I see her "differences". Let me explain.
I see Sadie as a normal baby. I don't see her as a "sick" baby or a baby with "special needs". I don't treat her any differently then I treat my other 2 girls. It's very easy to forget all the things that she has going on on the inside of her body. Yes she has therapy, yes she eats with a g tube, yes she has a lot of Dr's. But really that is it. She's not constantly sick, she doesn't have a bunch of tubes and wires coming off of her, she doesn't look different (except her pirate grin, which I don't even see anymore because I am so use to it). As far as I am concerned she is normal. BUT every once in awhile something comes up and slaps me in the face and kicks my butt back to reality. And when that happens I start getting angry. What kicked me in the butt this time? 2 things. 1. Was that she got sick. All babies get sick. But the fact that what she got sick with was seizures AND a respiratory infection and those are the 2 things that are supposed to effect her most in life and they both happened. IT SUCKED!!! Just thinking that she is following the patterns that I was told she would. I don't want her to follow their predictions. She has not up to now, so why is she starting? I do not want that reality. I want her to stay in her safe bubble and against the odds. And 2. I saw her around her peers. I see what she is "supposed" to be doing. She is obviously not doing the same stuff. I try not to let it bother me. She is progressing at her own speed and I could not be more proud of what she has accomplished, how far she has come, and what odds she has beaten. But it makes me angry that she has to work so much harder at everything in life.
Then this anger starts turning into anger towards the Dr's. Not even towards one in particular. I just want one Dr that will take care of all of her and fight to find answers and at least pretend that they really truly care. I just have not found that one Dr yet. Do they even exist or am I just hallucinating or just having wishful thinking?
I am exhausted! I am tired of always having to think what is next, tired of having to think like a Dr, tired of having to do my own research on everything, tired of having to be an advocate, tired of having to be a nurse, tired of having to be a therapist. I just want to be a mommy! A regular mommy that has regular concerns. I know that is why I am tired all the time and why I have headaches. People tell me "you need a vacation", "you need a break", "you need to have time for you". I 100% agree! However, it's not realistic. On many different levels, it's not realistic.
I'm sorry this is not a very perky, happy post. But this blog is actually helping me a lot with sorting out feelings and getting things out of my head. Unfortunately, some of the bad things have to get out of my head too, to be able to get back to the happy stuff. Thanks for listening/reading. I will get through this. If Sadie can fight to get past her obstacles, I can fight to get past mine.
January 09, 2013
ENT check up...So complicated
So we went yesterday to the ENT to make sure the tubes in Sadie's ears were doing ok. Everything was good; no drainage, no sign of infection, tubes were still in. Perfect. Then we start discussing her hearing tests. No, I was not expecting a miracle like she can hear now. I was hoping that it would say that she could hear a little bit clearer. No such luck. It shows that she is profoundly deaf in both ears. However, this time it did not show the she has auditory neuropathy is stated that she has sensorineural hearing loss. Which means that it is more of an inner ear problem, not the cranial nerve.
This is just flat out frustrating! She has had 4 BAER tests. And every single one of them has said something different. I try to look at the overall picture that clearly says Sadie is deaf and I try not to get hung up on the small details. I've never argued that. However, how we go about treating it can be significantly different. Why can't anything just be simple and straight forward when it comes to Sadie. I am so tired of this guessing game with her. I just want a black and white picture for once.
Why does it matter? It probably doesn't matter that much, cause we are probably only going to try hearing aids with her and primarily use sign language with her. It's just the point that I can't even get a direct flat out answer on her hearing. I would think that this should be an easy black and white answer.
Why is everything in Sadie's life have to be so complicated? Is it? Or do I make it more complicated? Am I not excepting things for what they are? Am I trying to change things that just can't be changed? I didn't think that I was. I really thought that I excepted everything for what it is, who she is. My goal for her is to make sure she has the best quality of life. That's all that I want for her. Why do things have to be so complicated!!!
This is just flat out frustrating! She has had 4 BAER tests. And every single one of them has said something different. I try to look at the overall picture that clearly says Sadie is deaf and I try not to get hung up on the small details. I've never argued that. However, how we go about treating it can be significantly different. Why can't anything just be simple and straight forward when it comes to Sadie. I am so tired of this guessing game with her. I just want a black and white picture for once.
Why does it matter? It probably doesn't matter that much, cause we are probably only going to try hearing aids with her and primarily use sign language with her. It's just the point that I can't even get a direct flat out answer on her hearing. I would think that this should be an easy black and white answer.
Why is everything in Sadie's life have to be so complicated? Is it? Or do I make it more complicated? Am I not excepting things for what they are? Am I trying to change things that just can't be changed? I didn't think that I was. I really thought that I excepted everything for what it is, who she is. My goal for her is to make sure she has the best quality of life. That's all that I want for her. Why do things have to be so complicated!!!
A friend needs help
My friend, Christine, from college was diagnosed with a brain tumor back in May while she was 5 months pregnant. A couple weeks after she delivered her baby she underwent brain surgery to remove the tumor. The Dr's had to take more of her brain when removing the tumor then anticipated which is causing her to have an even longer rehab. Just like Sadie, she is proving the Dr's wrong as she is doing amazing in her rehab. However, she still has a ways to go. Going from a two income household to a one income household has taken a tole on her family. Please check out her website, read her story, and if you can help her financially that would be great, if not please at least pray for a speedy, full recovery for her. Help Christina Fight!!!
January 08, 2013
The rest of last week
After that first night everything settled down for the most part. There was no more fevers and no more seizures, and we were increasing her feeds and she was tolerating them. We even had a diagnosis: RSV with new onset of seizures. But that cough was still horrible. Sadie would cough and cough and cough, so hard she could not breath. We would have to suction her to get the secretions out of her throat. This pretty much was the only reason we were staying in the hospital, that and the fact that she wouldn't keep her oxygen above 92%. So we wait and wait and wait. Sadie was super sleepy, which was not that unusual because of her mitochondrial disease, but it's even worse when she is not feeling well. To tell you how sleepy she was, in a total of 72 hrs she was awake for approx 12 of those hours. Off and on, and when she was awake she didn't have much energy to move. She would just look around and then fall back to sleep. But the problem was when she slept her oxygen level dropped to mid 80's without oxygen on. So obviously she had to wear the oxygen all the time.
Then in the afternoon on Thursday she woke up and was wide awake, ready to go. As if she had not just slept, and seized, and had a high fevers. She was even practicing her exercises and lifting her head, she all of a sudden had energy.
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| My little unicorn! The nurses couldn't get an IV in a normal spot, so the forehead was our only choice. We then put a guard around it so she wouldn't pull it out. |
Well where did this baby come from? Her oxygen level stabilized, so we ditched the oxygen and took a bath, washed her hair (which was so gross from all the nasty glue from the EEG probes), got a massage, put some fresh clean clothes on, and got out of bed. She was so smiley and happy. I had my baby back and she was going to be OK.
I did not know how stressed I was about this whole admission, until Thursday night. As I put her to bed that night and kissed her good night and felt her heart like I always do, I began to cry. The first time I had cried through this whole admission. Why was I crying now? I guess they were tears of joy, tears of relief, and tears for what the future may hold. Two of her big things that are supposed to give her issues, just happened: respiratory issues and seizures. Sadie has never had these issues until now. Is this the beginning of something? Horrible thoughts started running through my mind. "I can not go there," I tell myself, "I've been positive this whole time I can not let this short, simple admission bring me down now". I began to pray for strength for me and for my beautiful, little girl.
Thursday night into Friday morning Sadie's oxygen level would fall into the high 80's to low 90's when she slept. That meant that she still needed oxygen while she slept. That was consistent through out the night. During rounds in the morning the Dr's came in and we decided to see how she did during the day. If her oxygen stayed above 92% while she was sleeping she would be released. If not we would stay another night and talk about going home with oxygen and having a sleep study done. So after the Dr's left her room, Sadie and I had a heart to heart conversation and I told her to take deep breaths while she slept so we could go home today and without oxygen.
Sadie listened! Bless her heart. She took 2 naps and kept her oxygen level at 93-94%. Perfect!! The Dr walked in around 5p and said we could go home that night. HOORAY!!!!
January 07, 2013
EEG results
The past:
Sadie has had 2 EEG's (which is a test to check the brain waves) since she has been born. The first was in her first few days of life and the second was sometime over the past summer (I'm going to guess she was about 9 mo old or so). Neither one really showed anything except that she had slow brain waves in parts of her brain. That was no surprise since she has a brain malformation. Everyone was pleasantly surprised with the results because there was question on if she was having infantile spasm
The present:
First thing in the morning the tech came in to do an EEG. Sadie has not had anymore seizures since that high fever and since we started the seizure medication. That evening the neurologist came in to discuss the results. First we talked about the 3 different types of "episodes" that I saw. Then we discussed everything about her: development, personalty, movements, milestones, her life so far, and all of her different diagnoses. After all that he told me the results. The EEG showed changes from her last 2 EEG's. It does not mean that she has had a seizure, but it does not mean that she has not had a seizure. It just means the potential for seizures is greater then it was in the past. Where the EEG showed changes is in the midline of her brain (which does not surprise me at all because that is where all of her issues are throughout her whole body). So what do we do with this new info? His suggestion... "given her brain malformation, the episodes that you have told me about, and the changes on her EEG, I suggest we put her on a permanent seizure med." We discussed the risks and benefits and some of my concerns. In the end, I just was not convinced that this is what she needs. I have learned from being a nurse and from being Sadie's mom that Dr's guess (a lot) when it comes to her. She is not a textbook case at all. So this was the agreement that we came up with... While she was in the hospital she will stay on the seizure med and for a week after discharge she will be on the med and then we will wean it for a couple of days and then she will be off of it. After that it will be watching her for signs of seizures. If she is healthy and she has an episode she will be put back on the med. If she does not have another episode then good, we made the right choice. The Dr did say that there was a possibility that she might only have seizures while she is sick, fever or not, it might just be the way her body reacts to illness.
As always it is a guessing game when it comes to Sadie. I truly hope that I am right that the seizures are only because she was sick, but as always we will just wait and see. The story of her life!
to be continued...
Sadie has had 2 EEG's (which is a test to check the brain waves) since she has been born. The first was in her first few days of life and the second was sometime over the past summer (I'm going to guess she was about 9 mo old or so). Neither one really showed anything except that she had slow brain waves in parts of her brain. That was no surprise since she has a brain malformation. Everyone was pleasantly surprised with the results because there was question on if she was having infantile spasm
The present:
First thing in the morning the tech came in to do an EEG. Sadie has not had anymore seizures since that high fever and since we started the seizure medication. That evening the neurologist came in to discuss the results. First we talked about the 3 different types of "episodes" that I saw. Then we discussed everything about her: development, personalty, movements, milestones, her life so far, and all of her different diagnoses. After all that he told me the results. The EEG showed changes from her last 2 EEG's. It does not mean that she has had a seizure, but it does not mean that she has not had a seizure. It just means the potential for seizures is greater then it was in the past. Where the EEG showed changes is in the midline of her brain (which does not surprise me at all because that is where all of her issues are throughout her whole body). So what do we do with this new info? His suggestion... "given her brain malformation, the episodes that you have told me about, and the changes on her EEG, I suggest we put her on a permanent seizure med." We discussed the risks and benefits and some of my concerns. In the end, I just was not convinced that this is what she needs. I have learned from being a nurse and from being Sadie's mom that Dr's guess (a lot) when it comes to her. She is not a textbook case at all. So this was the agreement that we came up with... While she was in the hospital she will stay on the seizure med and for a week after discharge she will be on the med and then we will wean it for a couple of days and then she will be off of it. After that it will be watching her for signs of seizures. If she is healthy and she has an episode she will be put back on the med. If she does not have another episode then good, we made the right choice. The Dr did say that there was a possibility that she might only have seizures while she is sick, fever or not, it might just be the way her body reacts to illness.
As always it is a guessing game when it comes to Sadie. I truly hope that I am right that the seizures are only because she was sick, but as always we will just wait and see. The story of her life!
to be continued...
January 06, 2013
The first night
The first night was terrible. Sadie spiked a fever of 104.0 and we could not get it down. Tylenol, Motrin, more Tylenol, and finally another dose of Motrin and the fever came down to 100.0. The whole night she was seizing and was so lethargic. She was not my baby at all. What was wrong! We had no diagnosis. Her blood work looked great, her chest x ray showed some inflammation but nothing major, and her lumbar puncture came back normal (they were checking her for meningitis). Ok so now what. Her oxygen is dropping, her cough was horrible and she was requiring a fairly decent amount of oxygen. After her fever finally dropped and she woke up a little she became very fussy. Now whats wrong? She had not eaten in a while, maybe she is hungry, lets try some clear liquids. I am about to hook her up to her g-tube extension and I open the flap that keeps it closed and what happens..... BLOOD comes pouring out of it. OMG! I don't freak and panic very easily. I freaked! Why does my baby have blood coming from the inside of her belly. I call the nurse, the nurse calls the Dr, the Dr comes quickly. We all stare at it and come up with a million different reasons of what could have caused the blood. The good thing was that it was not fresh, bright red blood. It was old, dark brown blood. Which proved that she was not bleeding currently, but what was bleeding and why? We decide to not give her anything else in her g-tube for the night and just watch and see what happens. Her vital signs were all stable, she had no pain in her belly and it was nice and soft. I felt comfortable with the decision that was made.
After the fever episode and the blood episode the neurologist came in her room (which by the way is not the same Dr that I fired, but he is from the same office) to discuss the seizure episodes. He stated that we were going to give Sadie some more seizure meds and do an EEG in the morning. I agreed with the plan.
It was now 4:30a. I was tired. I think I slept for approx 5 hours in the last 48 hrs. But I was afraid to fall asleep. I don't know why. Sadie was stable. She had monitors on so the nurses were watching her at all times and someone was coming in her room often (almost to the point of annoying, but I was grateful that it was annoying at the same time). I wanted to sleep, I also wanted to cry. For some reason though the tears would not fall. I just sat and stared at her, watching her every breath, her every movement. Making sure I didn't miss a thing.
to be continued...
After the fever episode and the blood episode the neurologist came in her room (which by the way is not the same Dr that I fired, but he is from the same office) to discuss the seizure episodes. He stated that we were going to give Sadie some more seizure meds and do an EEG in the morning. I agreed with the plan.
It was now 4:30a. I was tired. I think I slept for approx 5 hours in the last 48 hrs. But I was afraid to fall asleep. I don't know why. Sadie was stable. She had monitors on so the nurses were watching her at all times and someone was coming in her room often (almost to the point of annoying, but I was grateful that it was annoying at the same time). I wanted to sleep, I also wanted to cry. For some reason though the tears would not fall. I just sat and stared at her, watching her every breath, her every movement. Making sure I didn't miss a thing.
to be continued...
January 04, 2013
ER and Admission
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| Waiting in the waiting room. Rosy pink cheeks from the fever and no smiles. :( |
Well, here we are, admitted to the hospital. How fast things change. Let's chat about the last few days, shall we...
It all started on Saturday night/Sunday morning. Sadie was coughing and sounding horrible, but we were managing just fine. Sunday and Monday she was tired and coughing, but I still didn't think she was bad enough to go to the ER. Then Monday night after the ball dropped (Happy New Years by the way) I went and checked on Sadie after I put Chloe and Aubrie to bed. She was burning up. Checked her temp, 102.7. "This isn't good". I gave her some Tylenol and I remembered that I forgot to do her eye drops. I started to do her eye care and an "episode" happened. "A seizure?" It wasn't the jerking and out of control movements that you think of when you hear the word seizure. It was the eye rolling, and some crazy noise/cry that she's never had. Sadie was completely out of it after it was over, like she was confused or something. Hmmmm, this REALLY isn't good. She's never had seizures, but as I have said before, I have been told to expect them. I was pretty confident that that "episode" was a seizure. "Crap! Now what". Do I go to the ER, do I call her Dr, do I wait until later? I decided to wait. Why? I don't know why. I just didn't feel like I needed to run to the ER. Probably cause I knew they were coming, I don't know. So I watched her all night. Every couple hours I checked her temp, woke her up, made sure she was ok. She was doing fine, never got her temp under 100.0, but no more "seizures".
Tuesday morning her temp was 101.5 and she was not tolerating her food. "This sucks. I guess it's time to call the Dr." So I called the Dr on-call at her pediatricians office thinking they were going to tell me to give her pedialyte and alternate between Motrin and Tylenol. That was exactly what they said. Then at the end of the conversation I added "Oh, by the way, Sadie might have had a seizure. I was told to expect them, so it wasn't that big of a deal, but just thought you should note that in her chart." The Dr on-call flipped out a little and she said that since she didn't "know" Sadie, that she would feel more comfortable with her going to the ER. I really didn't think we needed to go, but I wasn't completely against it either, so we went.
The ER was luckily not that busy (surprising since it was New Years Day) we waited for about 30 minutes and then went back. They suctioned her and suctioned her and suctioned her. Poor girl. She hated every minute of it so she was screaming and with that came very low oxygen saturation's which freaked everyone out, which caused more Dr's, nurses, and respiratory therapists to come in her room. I knew from past experience in the NICU that when she gets extremely mad she turns a pretty shade of purple and her oxygen saturation goes down. Now that she is older when she just gets mad her "mood spot" (the "stork bite" in the middle of her forehead) just turns red. She does that, that is her normal. After I heard some big words thrown around like intubation and c-pap I decided to step in and tell the main Dr and nurse to just leave her alone for a minute and let her catch her breath and calm herself down and I promised them, she will turn her pretty pink color again. They listened. Sure enough once they stopped touching her, she calmed down and turned pink. Thank goodness I was right! However, her oxygen still was not high enough to leave her on room air, so a nasal cannula was applied and became her new best friend.
After the breathing issue was under control we started chatting about everything else... not eating, high fever, seizure, coughing... The Dr's decided to do a chest x ray, blood work, a lumbar puncture, and to swab her nose to check for certain illnesses. All the tasks began. However, as these things were going on I noticed she wasn't acting herself. She was acting lethargic and letting the staff do what they wanted. They were poking her for IV access and blood draws, doing her lumbar puncture and she didn't even budge, no cry, no whimper, no arching her back like she does when she gets mad. The more that went on the more concerned I got. I began to really watch her close. That is when I realized that she was having seizures, a lot more seizures. The blank stare type of seizures. Nothing was getting her attention. When finally she would turn her eyes and look at me she was so confused looking. I told the Dr's and that is when they decided to give her a seizure med and admit her to the hospital for the night.
...to be continued
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