It's been over a week since Bayleigh was diagnosed. Feels like an eternity...especially being snowed in for four days! All I have to do is watch her...to watch all of the kiddos. Honestly, I am just not sure what to think about the whole situation with Bayleigh. There are good days (she has few seizures that we see), and there are not so good days (she has lots of seizures that we see). Yesterday was a good day. Today was a not so good day. She had the longest seizure she has ever had, and it scared the life out of me...I kept wondering when it was going to end. What's long? Oh, about 15 seconds. Yep, that's it. Just 15 seconds...forever when you are a mom watching as your baby girl's eyes roll up under her eyelids. And you don't know why. What we have noticed is that many of her seizures are in response to something. Playing peek-a-boo. A kiss on the cheek. Being tickled. Splashing in the bathtub. My heart breaks seeing that our interactions with her cause this.
So, still no answers. Her medication dose will increase next week, and then we see the neurologist again to see how it is working. I'm not convinced it is yet, but I have been told we have far to go with the medication route. I have been researching and studying....trying hard to stay away from sources that may be alarming. The internet is stupid.
The homefront is quiet right now, although that has not been the case for most of the week. The kids are nuts...more so than usual. And nutty kids make for a nutty mom. If there is no school on Monday, I may be farming them out to our neighbors for cheap labor. Heh.
Friday, February 4, 2011
Friday, January 28, 2011
freakishly calm
Time crept for us this week.
Most of you already know that I am not one of those parents who freaks out about every rash, runny nose, or scrape my children get. Even with my firstborn, I was pretty laid back. Don't get me wrong...I did a healthy amount of freaking out about stuff. He, after all, was very sick for the first couple of months of his life. And I was a first time mom. Freaking out and new moms...they just go together. My laid back nature has brought me through a new experience.
A few weeks ago, I began to notice that Bayleigh would occasionally zone out....just stare blankly at what seemed to be nothing for about 10-15 seconds. Then she'd shake it off and return to whatever she was doing before she zoned out. At the time, I definitely thought it was odd, but dismissed it. For all I knew, she could have learned to take a quick nap with her eyes open. Cool trick, right? Later last week, I began to notice the zoning out several times in a day, but they were also coupled with her eyes rolling up and her eyelids fluttering. The whole incident would only last about five seconds, but I knew something wasn't right. I began to document as much as I could what was going on with her. By Monday morning, I had grown concerned enough to talk to our pediatrician about it. I simply explained what I was seeing and how often. I was totally unprepared for his response. He thought she could be having seizures. Seizures? All I knew about seizures were the type Carleigh had when she was a toddler...they were scary. These were not that kind. He said we could wait another couple of days to see what happened. But by the next evening, they had begun to happen more frequently, and I was growing concerned. I e-mailed him again. This time, he requested to see her first thing the next morning. I was worried, but still not freaked out.
Off we went Wednesday morning to see our awesome pediatrician. While we were there, he witnessed one of her little episodes. He wanted her to be seen by a neurologist. After the two of them talked, it was decided Bayleigh should be admitted to the hospital for testing. I could tell our doctor was trying not to alarm me, as I had never witnessed him so concerned. My concern was growing, but still I wasn't freaked. Chris freaked. He was in Tulsa at the time and could not get home right away.
So the girls and I got things in order and headed to the hospital. By the afternoon, we got our angel to sleep and started our first EEG. We found out that afternoon that the EEG was inconclusive. She had not seized during the 15 minute test. Since I knew something was wrong, I was quite discouraged. I thought we were going to go home with no answers. But the neurologist suggested we do a sleep deprivation EEG the next morning. The lack of sleep would increase the frequency of the seizures and allow them to capture record of them. I was calm when we went to bed.
We kept our girl up late and woke her early the next morning and kept her up for a few hours before putting her down for a nap. She had already had 20 of these little seizures before the test began. A little freaked on the inside, but calm on the outside.
The last EEG captured both sleeping and waking seizures, and the doctor was able to give us diagnosis...epilepsy with petit mal seizures. This is probably the least serious type of epilepsy she could have (at least in my opinion). But what does this mean for us and for her? Well, first it means that we have to medicate her for at least a few years. We have to watch her closely (and those who care for her will have to watch her closely) because when she has her seizures, she loses consciousness. Even though it is only for a few seconds, she could injure herself if she is walking, running, riding a bike, etc. In addition, her case could be different than others who have been diagnosed with this. Turns out, our little love is an unusual case. Babies don't typically develop this type of seizure disorder, so there may be some unknowns. Further testing could shed some light on why she had developed this so early or at all. For now, we are clinging to the common diagnosis, and that is that she should grow out of it by the time she reaches adolesence.
Through this whole process, Bay was so precious. We were sprung from the hospital last night. Then I freaked. I cried the whole way home. I could chalk it up to lack of sleep or even tears of joy and relief that it isn't more serious (though serious enough), but I know that I simply freaked. I just couldn't hold it in anymore.
Bay fell into her bed without a peep and woke just now (at 9:30am). I didn't sleep as soundly, but was thrilled to be back in my bed!
What's next? We will visit with the neurologist in a couple of weeks. Then we get to see him every 4-6 months for as long as she has seizures. She will continue to have an occasional seizure even on the medication, though the frequency should be significantly less. Once she gets settled into her medication regimen, we will have an MRI done to check her brain anatomy. There is possible genetic testing in our future as well. (That's another long story.)
Thank you to everyone who has been praying for our family. We have felt them, and are so grateful for the support network we have in each of you! God is so good.
Most of you already know that I am not one of those parents who freaks out about every rash, runny nose, or scrape my children get. Even with my firstborn, I was pretty laid back. Don't get me wrong...I did a healthy amount of freaking out about stuff. He, after all, was very sick for the first couple of months of his life. And I was a first time mom. Freaking out and new moms...they just go together. My laid back nature has brought me through a new experience.
A few weeks ago, I began to notice that Bayleigh would occasionally zone out....just stare blankly at what seemed to be nothing for about 10-15 seconds. Then she'd shake it off and return to whatever she was doing before she zoned out. At the time, I definitely thought it was odd, but dismissed it. For all I knew, she could have learned to take a quick nap with her eyes open. Cool trick, right? Later last week, I began to notice the zoning out several times in a day, but they were also coupled with her eyes rolling up and her eyelids fluttering. The whole incident would only last about five seconds, but I knew something wasn't right. I began to document as much as I could what was going on with her. By Monday morning, I had grown concerned enough to talk to our pediatrician about it. I simply explained what I was seeing and how often. I was totally unprepared for his response. He thought she could be having seizures. Seizures? All I knew about seizures were the type Carleigh had when she was a toddler...they were scary. These were not that kind. He said we could wait another couple of days to see what happened. But by the next evening, they had begun to happen more frequently, and I was growing concerned. I e-mailed him again. This time, he requested to see her first thing the next morning. I was worried, but still not freaked out.
Off we went Wednesday morning to see our awesome pediatrician. While we were there, he witnessed one of her little episodes. He wanted her to be seen by a neurologist. After the two of them talked, it was decided Bayleigh should be admitted to the hospital for testing. I could tell our doctor was trying not to alarm me, as I had never witnessed him so concerned. My concern was growing, but still I wasn't freaked. Chris freaked. He was in Tulsa at the time and could not get home right away.
So the girls and I got things in order and headed to the hospital. By the afternoon, we got our angel to sleep and started our first EEG. We found out that afternoon that the EEG was inconclusive. She had not seized during the 15 minute test. Since I knew something was wrong, I was quite discouraged. I thought we were going to go home with no answers. But the neurologist suggested we do a sleep deprivation EEG the next morning. The lack of sleep would increase the frequency of the seizures and allow them to capture record of them. I was calm when we went to bed.
We kept our girl up late and woke her early the next morning and kept her up for a few hours before putting her down for a nap. She had already had 20 of these little seizures before the test began. A little freaked on the inside, but calm on the outside.
We were left alone during the test and given instructions on what we were to do. We woke Bay after 45 minutes of sleeping. Not fun. We had to keep her from pulling on the EEG wires for as long as possible. That ended up being a couple of hours, praise God! We could actually see that what we were witnessing was being recorded. While I would love nothing more than for her to not have these seizures, I was grateful she was having them while they were recording her. Here is our girl playing with her daddy...
This is some of my charting...it was crazy. I didn't chart during her naps or EEGs...and then I actually just got tired of doing it altogether. We all knew she was having them by that point.
The last EEG captured both sleeping and waking seizures, and the doctor was able to give us diagnosis...epilepsy with petit mal seizures. This is probably the least serious type of epilepsy she could have (at least in my opinion). But what does this mean for us and for her? Well, first it means that we have to medicate her for at least a few years. We have to watch her closely (and those who care for her will have to watch her closely) because when she has her seizures, she loses consciousness. Even though it is only for a few seconds, she could injure herself if she is walking, running, riding a bike, etc. In addition, her case could be different than others who have been diagnosed with this. Turns out, our little love is an unusual case. Babies don't typically develop this type of seizure disorder, so there may be some unknowns. Further testing could shed some light on why she had developed this so early or at all. For now, we are clinging to the common diagnosis, and that is that she should grow out of it by the time she reaches adolesence.
Through this whole process, Bay was so precious. We were sprung from the hospital last night. Then I freaked. I cried the whole way home. I could chalk it up to lack of sleep or even tears of joy and relief that it isn't more serious (though serious enough), but I know that I simply freaked. I just couldn't hold it in anymore.
Bay fell into her bed without a peep and woke just now (at 9:30am). I didn't sleep as soundly, but was thrilled to be back in my bed!
What's next? We will visit with the neurologist in a couple of weeks. Then we get to see him every 4-6 months for as long as she has seizures. She will continue to have an occasional seizure even on the medication, though the frequency should be significantly less. Once she gets settled into her medication regimen, we will have an MRI done to check her brain anatomy. There is possible genetic testing in our future as well. (That's another long story.)
Thank you to everyone who has been praying for our family. We have felt them, and are so grateful for the support network we have in each of you! God is so good.
Wednesday, January 19, 2011
beautiful chaos
It is hard to believe we are so deep into January already! The last couple of weeks have really flown. I started back to school last week, and it is OVERwhelming to say the least! This is my first official semester of nursing school, and they start us off running. Aside from the administrative requirements I have had to meet, we started clinicals on the first day of class, and have already taken exams! If the rest of the semester is anything like these first two weeks of class, it is going to be over before I know it!
In addition to starting school, I have started training for my first half marathon...the OKC Memorial Marathon on May 1st. Yikes. I have never run more than 6 miles at a time, so this will be huge for me! I am excited, but also very, very nervous!
So all this adds to what is already a chaotic life with a big family! But there is peace.
In addition to starting school, I have started training for my first half marathon...the OKC Memorial Marathon on May 1st. Yikes. I have never run more than 6 miles at a time, so this will be huge for me! I am excited, but also very, very nervous!
So all this adds to what is already a chaotic life with a big family! But there is peace.
I hope I can say this when it's all said and done...
I have fought the good fight, I have finished the race, I have kept the faith.
2 Timothy 4:7
Monday, January 3, 2011
a new year
I have not made any New Year's resolutions this year. I usually don't...I am one of those statistics you read about. You know the ones who start out the year strong and have broken most, if not all, of the promises made by February? I do, however, always set goals for myself and for my family. I am excited to report that most of our goals were reached last year, and those that weren't have just become goals again this year. Yes, some of those goals are regarding health and fitness, but they do not involved us killing ourselves in the gym.
2011 is special, however, as it is the first year we have focused the first few weeks on spiritual health. Our church body has been called to fast together for the first part of the year. Chris and I have begun the Daniel fast, which is a 21-day fast from meat, dairy, and sugar. There is more to it than that, and you learn more about it by clicking the links below. You can begin this fast at any time. Prayerfully consider joining us and starting your new year off putting God first!
Lifechurch.tv Live First message
Daniel Fast
Daniel Fast blog
YouVersion 21-day Fast reading plan
2011 is special, however, as it is the first year we have focused the first few weeks on spiritual health. Our church body has been called to fast together for the first part of the year. Chris and I have begun the Daniel fast, which is a 21-day fast from meat, dairy, and sugar. There is more to it than that, and you learn more about it by clicking the links below. You can begin this fast at any time. Prayerfully consider joining us and starting your new year off putting God first!
Lifechurch.tv Live First message
Daniel Fast
Daniel Fast blog
YouVersion 21-day Fast reading plan
Sunday, January 2, 2011
what I'm learning - Christmas edition
Very few people shop during the extended store hours.
My children will not keep secrets from their siblings.
Some Christmas ornaments are edible.
Some Christmas food is not.
My kids will bring home ten times the amount of art they normally do.
By January 1st, I will pay in blood for child volume control (by volume, I mean loudness and not how many children I have...we all know how that one has turned out.)
I will always like giving more than receiving (although I received two of my favorite gifts of all time this year!)
One can never sleep too much.
Santa gets gas just like everyone else.
Small children do not really care what is inside the package...they will inevitably end up playing with the package.
Take two cars when traveling to grandma and grandpa's...we will come back with more than we took.
There is a reason the Dirty Santa game is for adults.
Light-seeing is fun until a kid gets sick in the car and you're not close to home.
Do not put breakable (i.e., glass) gifts under the tree in a house full of short people who shake presents.
Send Christmas cards every year.
Spending too much time on things that do not matter (shopping, decorating, partying) takes away time from things that really do.
Video everything....when you have children, everything is AFV material.
Use every opportunity you have to tell people about Jesus (they are more likely to listen at Christmas!)
Give meaningful gifts.
Too much of a good thing can cause diarrhea.
My children will not keep secrets from their siblings.
Some Christmas ornaments are edible.
Some Christmas food is not.
My kids will bring home ten times the amount of art they normally do.
By January 1st, I will pay in blood for child volume control (by volume, I mean loudness and not how many children I have...we all know how that one has turned out.)
I will always like giving more than receiving (although I received two of my favorite gifts of all time this year!)
One can never sleep too much.
Santa gets gas just like everyone else.
Small children do not really care what is inside the package...they will inevitably end up playing with the package.
Take two cars when traveling to grandma and grandpa's...we will come back with more than we took.
There is a reason the Dirty Santa game is for adults.
Light-seeing is fun until a kid gets sick in the car and you're not close to home.
Do not put breakable (i.e., glass) gifts under the tree in a house full of short people who shake presents.
Send Christmas cards every year.
Spending too much time on things that do not matter (shopping, decorating, partying) takes away time from things that really do.
Video everything....when you have children, everything is AFV material.
Use every opportunity you have to tell people about Jesus (they are more likely to listen at Christmas!)
Give meaningful gifts.
Too much of a good thing can cause diarrhea.
Thursday, December 30, 2010
a quiet return
So, I took an unplanned sabbatical from blogging, thanks to a grueling class schedule for the fall semester. I can't remember the last time I was able to sit down and gather my thoughts long enough to blog about them! Next semester may prove to be just as challenging, as it is my first official semester in the nursing program! I can't believe it has been that long (two and a half years!)...since I finally decided what I wanted to be "when I grew up!" And, for once, I haven't given up! I am beyond excited to see what is in store for me for the next five semesters!
I am in a crazy season of life, which has landed me studying hard Proverbs 91. My favorite verse is 1:2, "I will say of the Lord, He is my refuge and my fortress: my God; in him will I trust." Sadly, earthly things are usually my refuge. My battle is against this lie that Satan tells me each and everyday. Where do you take refuge?
I am in a crazy season of life, which has landed me studying hard Proverbs 91. My favorite verse is 1:2, "I will say of the Lord, He is my refuge and my fortress: my God; in him will I trust." Sadly, earthly things are usually my refuge. My battle is against this lie that Satan tells me each and everyday. Where do you take refuge?
Wednesday, October 27, 2010
more things I am learning
The Lord DOES give us more than we can handle.
Dirty laundry multiplies faster than rabbits.
Babies bounce.
Kids WILL talk. Listen. Really listen.
There will never be enough hours in the day.
An ugly heart can't be disguised by a pretty face.
Mean people suck.
Love on purpose.
Memorize scripture. It is the armor that protects from life.
Control is an illusion.
Sanity is overrated.
God does not grant patience. He gives opportunities to practice it.
I will never know it all.
My kids will.
You are never too old for PB&Js!
It is okay to cry.
If you are not content with what you have now, you will not be content with what you wish you had.
Some days, having it all together is simply having had a shower.
To see my first post on things I am learning, click here.
Dirty laundry multiplies faster than rabbits.
Babies bounce.
Kids WILL talk. Listen. Really listen.
There will never be enough hours in the day.
An ugly heart can't be disguised by a pretty face.
Mean people suck.
Love on purpose.
Memorize scripture. It is the armor that protects from life.
Control is an illusion.
Sanity is overrated.
God does not grant patience. He gives opportunities to practice it.
I will never know it all.
My kids will.
You are never too old for PB&Js!
It is okay to cry.
If you are not content with what you have now, you will not be content with what you wish you had.
Some days, having it all together is simply having had a shower.
To see my first post on things I am learning, click here.
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