As of Monday, Kennedy is down to two medicines, twice a day. It's nice because our mid-day dose is completely gone and any day plans often had to revolve around being able to take her medicine....or take it with us (and of course the bottles always leaked). To me, she's seemed more alert and bright eyed despite being sleep deprived.
Kennedy hasn't woken up screaming any this week, but she has tossed and turned every night and whimpered some in her sleep. I'm not sure if she's having bad dreams or just weird dreams because she can't really communicate anything about her dreams. I've been putting her to bed at 7 each evening and she sleeps until at least 6:30 the following morning. Most of the week we had her sleep on an air mattress in our room in case she had any sleep walking or nightmares, but she has so restless that none of us were sleeping. So she's returned to her own bed...in her own room....
The return to school this week has been tough on her! Of course, any kiddo has trouble getting back into the swing of things after a break, but she has always had a more difficult time. Couple that with medicine changes and sleep deprivation and it's not been a good week for her. She's extra agitated (side effect of her meds) and has no patience to work on any activity. She immediately shuts down and says the work is too hard-- when it's obviously not. Hopefully this will get better. One thing I have noticed is that she doesn't look exhausted when I pick her up in the afternoons. It could be because she doesn't get that mid-day dose or maybe she just feels better with the new medicine. Oh and did I mention I've only seen TWO seizures since she started the new meds?? Thank you, Jesus!!
Yesterday, Kennedy took quite a spill at her friend's house trying to get out of the sandbox. She has extremely delayed reflexes so injuries are quite common for her because she's unable to break her fall. She has a pretty nasty lip but she didn't cry at all when it happened. I can hardly believe it. She's one tough cookie!! She constantly amazes me with her strength!
Thursday, April 11, 2013
Thursday, April 4, 2013
2013 Achievements
Since the last post was somewhat "heavy," I figured it was only fitting to also blog about Kennedy's awesome accomplishments in 2013. Plus the purpose of this blog is so that when the times get hard I have a visual reminder of how far we've come in this journey. So please give me this proud mom moment :)
Here goes:
1. She's learning to zip her jacket and can do it independently about 50% of the time!
2. She's obsessed with One Direction (which is not an achievement) but she knows all the words to most of their songs (which is an achievement)-- although their c.d. is about to go missing, probably because it will accidentally fly out the car window....but that's just a guess......
3. Not only can she get in the car independently now, she can close the car door from inside the car and-----wait for it---- buckle the seatbelt!! FINALLY!
4. Her handwriting has improved tremendously this year! No iPad needed at this point
5. Today in speech, she finally caught on to the "ch" sound and is really trying hard on the "th" sounds-- one day everyone will understand her! :)
6. She's learned to jump rope (which may have been included in my last achievement list, but she's even better now!)
7. Most of the time, she can get both shoes on her feet if they aren't untied.
8. I'm not sure where she's learned it but she has learned to shake her booty---a lot! (Probably got that from her Nana)
9. She can button clothes with a nickel-sized button
10. Thanks to cheerleading, she has mastered a toe-touch......and does it 123854798168 times each day
11. Her self-confidence went from non-existent at the beginning of the school year to "satisfactory" on her last report card!
12. About 75% of the time she will order her own food when we go to restaurants (though Mommy sometimes has to translate)
13. She's learned to carry Milo (our dog) around without using a choke-hold
14. She's almost mastered taking a shirt off, but sometimes gets a little twisted up
15. She is starting to help me with household chores like feeding Milo, folding wash cloths, putting away her PJs, but is still stumped on how to clean her own room :)
16. Today, she finally admitted she was "too old" for Dora or other Playhouse Disney shows. (Thank goodness!)
I'm sure there are lots more accomplishments in the last 3 months but I'm tired and it's hard to list them all on the spot. I'm sure most 4 or 5-year-olds have mastered all these tasks, but for a little girl who wasn't supposed to amount to much according to the doctors, we rejoice in every little victory!
Here goes:
1. She's learning to zip her jacket and can do it independently about 50% of the time!
2. She's obsessed with One Direction (which is not an achievement) but she knows all the words to most of their songs (which is an achievement)-- although their c.d. is about to go missing, probably because it will accidentally fly out the car window....but that's just a guess......
3. Not only can she get in the car independently now, she can close the car door from inside the car and-----wait for it---- buckle the seatbelt!! FINALLY!
4. Her handwriting has improved tremendously this year! No iPad needed at this point
5. Today in speech, she finally caught on to the "ch" sound and is really trying hard on the "th" sounds-- one day everyone will understand her! :)
6. She's learned to jump rope (which may have been included in my last achievement list, but she's even better now!)
7. Most of the time, she can get both shoes on her feet if they aren't untied.
8. I'm not sure where she's learned it but she has learned to shake her booty---a lot! (Probably got that from her Nana)
9. She can button clothes with a nickel-sized button
10. Thanks to cheerleading, she has mastered a toe-touch......and does it 123854798168 times each day
11. Her self-confidence went from non-existent at the beginning of the school year to "satisfactory" on her last report card!
12. About 75% of the time she will order her own food when we go to restaurants (though Mommy sometimes has to translate)
13. She's learned to carry Milo (our dog) around without using a choke-hold
14. She's almost mastered taking a shirt off, but sometimes gets a little twisted up
15. She is starting to help me with household chores like feeding Milo, folding wash cloths, putting away her PJs, but is still stumped on how to clean her own room :)
16. Today, she finally admitted she was "too old" for Dora or other Playhouse Disney shows. (Thank goodness!)
I'm sure there are lots more accomplishments in the last 3 months but I'm tired and it's hard to list them all on the spot. I'm sure most 4 or 5-year-olds have mastered all these tasks, but for a little girl who wasn't supposed to amount to much according to the doctors, we rejoice in every little victory!
Amazing!
Wow! I can't believe it-- I've had nearly 200 views from yesterday's post in about 24 hours. I had no idea that so many people cared about our family! Thanks to each one of you who are following us in this journey. Your calls, texts, emails, and prayers have kept us going.
I'm happy to report we had NO NIGHTMARES last night! Praise God! But Kennedy did talk A LOT during her sleep and Jeremy caught her sitting straight up in bed (but sleeping) when he got home from work last night. lol But she can sleep-talk or sleepwalk for all I care as long as she doesn't wake up screaming like she's being murdered. It's NOT a good way for any of us to wake up in this household!
Yesterday and today Kennedy has had a serious case of the hiccups! And what do you know.... that's a side effect of the new medicine. She's getting really frustrated and keeps telling me she "never" going to get rid of them. I certainly hope this passes because she's getting really frustrated that she can't say what she wants to say because of her hiccups. (And quite frankly, I am miserable when I have them so I feel her pain.)
Today Kennedy was able to catch up on her sleep. She had to be sleep deprived Monday for her testing and didn't take a nap that day. She's napped every day since and is finally starting to feel better I think. She was seriously funny today! Some of the things that she said and did just made me full of happiness with God's grace! It was the best day that we've had in a long time! She is such a little blessing to our family and I'm not quite sure positive that my life would have a purpose without her in it-- even on the tough days.
I've had a lot of people tell me they are sorry for what Kennedy's going through and I am grateful for that-- but it doesn't make things any easier. But we all have our own cross to bear and this is our family's battle. A few months ago I was listening to Way-FM and there was a man that called in thanking the station for being a big comfort after the death of his young son in an accident. The father said he had been angry at God with taking this sweet little boy away and couldn't understand why God couldn't just prevent the accident from occurring--but then he realized that God has that power (just like he could have taken away the circumstances surrounding His Son's death), but there was a greater purpose in the tragedy because it made this family lean on God for comfort when no one else knew quite what to say. I see how many people simply adore and love my sweet girl and I know she has a big purpose in this world! There is a blessing somewhere in all this mess and I know one day I will see it all so clearly.
And while of course, I would give anything if these seizures would stop for good and Kennedy's body was healed, I'll cling tightly to my Rock and know that He goes with us in this journey.
He alone is my rock and my salvation, my fortress where I will never be shaken. Psalm 62:2
Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." Deuteronomy 31:8
Until next time......
I'm happy to report we had NO NIGHTMARES last night! Praise God! But Kennedy did talk A LOT during her sleep and Jeremy caught her sitting straight up in bed (but sleeping) when he got home from work last night. lol But she can sleep-talk or sleepwalk for all I care as long as she doesn't wake up screaming like she's being murdered. It's NOT a good way for any of us to wake up in this household!
Yesterday and today Kennedy has had a serious case of the hiccups! And what do you know.... that's a side effect of the new medicine. She's getting really frustrated and keeps telling me she "never" going to get rid of them. I certainly hope this passes because she's getting really frustrated that she can't say what she wants to say because of her hiccups. (And quite frankly, I am miserable when I have them so I feel her pain.)
Today Kennedy was able to catch up on her sleep. She had to be sleep deprived Monday for her testing and didn't take a nap that day. She's napped every day since and is finally starting to feel better I think. She was seriously funny today! Some of the things that she said and did just made me full of happiness with God's grace! It was the best day that we've had in a long time! She is such a little blessing to our family and I'm
I've had a lot of people tell me they are sorry for what Kennedy's going through and I am grateful for that-- but it doesn't make things any easier. But we all have our own cross to bear and this is our family's battle. A few months ago I was listening to Way-FM and there was a man that called in thanking the station for being a big comfort after the death of his young son in an accident. The father said he had been angry at God with taking this sweet little boy away and couldn't understand why God couldn't just prevent the accident from occurring--but then he realized that God has that power (just like he could have taken away the circumstances surrounding His Son's death), but there was a greater purpose in the tragedy because it made this family lean on God for comfort when no one else knew quite what to say. I see how many people simply adore and love my sweet girl and I know she has a big purpose in this world! There is a blessing somewhere in all this mess and I know one day I will see it all so clearly.
And while of course, I would give anything if these seizures would stop for good and Kennedy's body was healed, I'll cling tightly to my Rock and know that He goes with us in this journey.
He alone is my rock and my salvation, my fortress where I will never be shaken. Psalm 62:2
Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you." Deuteronomy 31:8
Until next time......
Wednesday, April 3, 2013
Vanderbilt Update
“Isn’t it funny how day by day nothing changes but when you look back everything is different…” – C.S. Lewis
I haven't blogged in a LONG time because I guess from day to day, nothing much seemed "blog-worthy." But looking back over the last year--- SO MUCH has changed.
It's been a really tough week.....
A year ago, on April 1st, 2012, we went to Vanderbilt for Kennedy's routine checkup with the Neurologist. She had been doing so well that we had planned for an EEG this year (on Monday) and if Kennedy continued to not have seizures and the EEG was normal, we could start weaning her off her seizure meds. It would have been the first time since she was 7 months old that we would not be taking medicines multiple times per day...... But several months ago, Kennedy started having petit mal seizures many, many times each day. Within the last couple of months, they have increased her medicines twice-- but the seizures continued.
So Monday, we went in for our scheduled EEG. They were able to trigger a seizure which was the first time she has seized during any test which was a good thing. But my mom and I were able to watch the test results on the computer and noticed that she was having spikes of activity every 10-20 seconds. According to her neurologist, these "sparks" are seizure activity, but not all of them turn into seizures that we are able to see. This has been terribly upsetting because although we have seen LOTS of seizures, we had no idea she was seizing that much!
As we were talking to the doctor, I had big decisions to make on the spot. We could increase one of her current medications which would control both the petit mal (Depakene) and the complex-partial seizures (Keppra) (both controlled with Depakene alone-- that sounded great because we'd be able to stop the second medication!)......BUT there were concerns. First, higher doses of Depakene would cause tremors-- and since she already has pretty bad tremors, they would get worse and she would have trouble holding things in her hands. Not good! Plus, if the medication was able to control her seizures, she could not use it long-term because it could cause liver damage/failure.
Our other option was to keep her on Keppra for the convulsions-- but stop the Depakene (since it causes liver problems long term) and add Zarontin which is a medication that is specifically used to treat petit mal seizures. That sounded like a good plan, but there was a catch. Kennedy had been on this medication about three years ago and had terrible nightmares while she took it. She would wake up screaming every night.
How could I make a decision like that so quickly? Should I give my child a medicine that could damage her liver? Or do I give her medicine that I know is going to give her terrible dreams? I'm sure it seems like an easy decision, but until you are in that position-- you have no idea! I felt like no matter what choice I made, Kennedy was going to suffer. So I asked the Neurologist what he thought would be the best bet and he said he'd like to try the Zarontin because he only knew of one other patient that had nightmares from the medicine and since Kennedy was older, it might not be a concern.
So I took his advice and agreed to the changes. We started weaning her off of the Depakene, giving her an increased dose of Keppra and added the Zarontin. Yesterday was the first full day of Zarontin and she woke up screaming last night and saying a witch was after her. I pray this was just a coincidence she had a nightmare after starting the medicine, but we'll have to wait and see. The doctor wants her to try this medicine for at least 2 weeks to see if the nightmares stop. If we are unable to get the seizures to stop, we may have to spend the night in the EMU (Epilepsy Monitoring Unit) at Vanderbilt.
I was certainly hoping for a different outcome from our visit, but seeing all the seizure activity on the EEG was heart-breaking. Please continue to keep Kennedy and our family in your prayers. This is not an easy circumstance to go through.
I haven't blogged in a LONG time because I guess from day to day, nothing much seemed "blog-worthy." But looking back over the last year--- SO MUCH has changed.
It's been a really tough week.....
A year ago, on April 1st, 2012, we went to Vanderbilt for Kennedy's routine checkup with the Neurologist. She had been doing so well that we had planned for an EEG this year (on Monday) and if Kennedy continued to not have seizures and the EEG was normal, we could start weaning her off her seizure meds. It would have been the first time since she was 7 months old that we would not be taking medicines multiple times per day...... But several months ago, Kennedy started having petit mal seizures many, many times each day. Within the last couple of months, they have increased her medicines twice-- but the seizures continued.
So Monday, we went in for our scheduled EEG. They were able to trigger a seizure which was the first time she has seized during any test which was a good thing. But my mom and I were able to watch the test results on the computer and noticed that she was having spikes of activity every 10-20 seconds. According to her neurologist, these "sparks" are seizure activity, but not all of them turn into seizures that we are able to see. This has been terribly upsetting because although we have seen LOTS of seizures, we had no idea she was seizing that much!
As we were talking to the doctor, I had big decisions to make on the spot. We could increase one of her current medications which would control both the petit mal (Depakene) and the complex-partial seizures (Keppra) (both controlled with Depakene alone-- that sounded great because we'd be able to stop the second medication!)......BUT there were concerns. First, higher doses of Depakene would cause tremors-- and since she already has pretty bad tremors, they would get worse and she would have trouble holding things in her hands. Not good! Plus, if the medication was able to control her seizures, she could not use it long-term because it could cause liver damage/failure.
Our other option was to keep her on Keppra for the convulsions-- but stop the Depakene (since it causes liver problems long term) and add Zarontin which is a medication that is specifically used to treat petit mal seizures. That sounded like a good plan, but there was a catch. Kennedy had been on this medication about three years ago and had terrible nightmares while she took it. She would wake up screaming every night.
How could I make a decision like that so quickly? Should I give my child a medicine that could damage her liver? Or do I give her medicine that I know is going to give her terrible dreams? I'm sure it seems like an easy decision, but until you are in that position-- you have no idea! I felt like no matter what choice I made, Kennedy was going to suffer. So I asked the Neurologist what he thought would be the best bet and he said he'd like to try the Zarontin because he only knew of one other patient that had nightmares from the medicine and since Kennedy was older, it might not be a concern.
So I took his advice and agreed to the changes. We started weaning her off of the Depakene, giving her an increased dose of Keppra and added the Zarontin. Yesterday was the first full day of Zarontin and she woke up screaming last night and saying a witch was after her. I pray this was just a coincidence she had a nightmare after starting the medicine, but we'll have to wait and see. The doctor wants her to try this medicine for at least 2 weeks to see if the nightmares stop. If we are unable to get the seizures to stop, we may have to spend the night in the EMU (Epilepsy Monitoring Unit) at Vanderbilt.
I was certainly hoping for a different outcome from our visit, but seeing all the seizure activity on the EEG was heart-breaking. Please continue to keep Kennedy and our family in your prayers. This is not an easy circumstance to go through.
She is my hero! So brave!!
As my dear friend, Champ has nothing on my tough little girl!
She definitely deserved a trip to Build a Bear after our visit-- and now she wants to wear her new bear's glasses all the time. Who couldn't love that sweet face??
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