Alannah had her one year post-surgery follow-up tests and doctor appointments this month. She had another MRI of the brain and another 24 hour EEG. She also met with the neurosurgeon and neurologist to confirm test findings. All went well! The EEG showed no abnormal brain waves, THANK YOU GOD! The doctors were both happy with how she is doing. The neurologist has said that she is able to come off her meds now, and the probability of her seizures returning would be very low. We are going to wait until after the National Walk for Epilepsy to start weaning her off the Keppra. We are very excited and grateful. Our next big step will be to try and raise money for the Epilepsy Foundation, as a way to give back for all that has happened for Alannah. We hope to help many other people with epilepsy, and to raise awareness about this devastating condition.
As always, thank you for the love and support,
Eric and Marilena Enfield
Thursday, January 26, 2012
Sunday, August 21, 2011
AUGUST 2011 FOLLOW-UP / EEG TEST
Alannah is 7 months post-surgery now. On August 10, 2011, she had a 24 hour video EEG at Children's Hospital. For those of you that don't already know, an EEG is a test where they glue electrodes to your head in specific areas. These electrodes then record the electrical activity in your brain. This test is used to determine if there is any seizure activity happening, and if so, where and how much is happening.
We arrived on Wednesday at 9:00am and they admitted her for the test. Then she was brought up to her room on the EEG-Epilepsy unit at Children's. They then glued all the electrodes to her head, which she hated because the glue stinks. [pics to follow at the bottom] She made sure they were aware that she was unhappy about the smell! Then they "plugged her in" to the monitor, and that's it! She was pretty much tethered to the bed for 24 hours, but she could walk around the bed a little. She watched movies, played games, and colored with the nurses, me and Eric. We stayed until Thursday morning, when they took all the electrodes off, and then we came home.
The neurologist was suppose to read the EEG results on Thursday and call us with the news, but she unexpectedly had to go out of town for the weekend, starting Thursday!! So, we had to wait until Monday for her to read the test and give us the results.....it was a very nerve-racking 4 days....to say the least. But we love and trust her doctor implicitly and didn't want anyone else to read the test results, so it was worth the wait.
Her doctors' nurse called us late in the day Monday to deliver the good news!! The test showed no seizure activity at all!!! They didn't see any abnormal electrical activity!!! Needless to say, I cried many, many tears of joy....we are so happy and so grateful to so many people. First and foremost, God. Not just for the excellent test result, but for getting her and us through the last very hard 17 months. And then we are so thankful to her neurologist, and the neurosurgeon and all the nurses and staff at Children's for essentially saving our daughter's life ( and putting up with me and my ten thousand questions!!) . We can never repay them for that most precious gift. And also thanks to all of our family and friends who provided never ending support and love through the whole process.
It's not quite over yet,though. She has to continue taking the anti-seizure meds for a full year post-op, which means through Jan-Feb 2012. It is their protocol to keep them on the meds for that long, because the brain can "re-learn" the seizure activity. Research has shown that it is less likely for the brain to re-learn the old seizure activity if they keep them on meds for 1 full year. We are of course praying that this "re-learning" does not happen!! But only time will tell. In Jan-Feb, she will have another EEG to confirm these test results, and also she will have another visit with the neurologist and neurosurgeon. Then they will decide when to start weaning her off her meds, if that is possible.
This whole process has taught us a alot about ourselves and about epilepsy and how much it can limit someone's life. We have decided to try and help other people with epilepsy by raising funds for The Epilepsy Foundation. The Epilepsy Foundation uses their money to fund research for surgical procedures, like the one Alannah had, and also to fund research for new and better meds for epilepsy control. They also create and help to pass laws which are aimed at preventing discrimination against people with epilepsy in the workplace and in schools. This is a link to their website and description of their foundation: http://www.epilepsyfoundation.org/aboutus/
Bella already started by working a lemonade stand all summer, and was able to raise $ 504.08. God-willing, in March 2012, Eric and the girls and I are going to Washington DC to participate in The Walk for Epilepsy. We are planning to investigate how the whole "WALK" works, and then hope to start a team, in Alannah's honor, for coming years. We hope that some or all of you will be willing to stand and/or "walk" with us for Alannah and for all the other children and adults who have dealt with, or are continuing to deal with epilepsy and its effects.
The Epilepsy Foundation's motto is "Not another moment lost to seizures". We sincerely hope that one day, this motto could be true for all people who have been diagnosed with epilepsy.
We arrived on Wednesday at 9:00am and they admitted her for the test. Then she was brought up to her room on the EEG-Epilepsy unit at Children's. They then glued all the electrodes to her head, which she hated because the glue stinks. [pics to follow at the bottom] She made sure they were aware that she was unhappy about the smell! Then they "plugged her in" to the monitor, and that's it! She was pretty much tethered to the bed for 24 hours, but she could walk around the bed a little. She watched movies, played games, and colored with the nurses, me and Eric. We stayed until Thursday morning, when they took all the electrodes off, and then we came home.
The neurologist was suppose to read the EEG results on Thursday and call us with the news, but she unexpectedly had to go out of town for the weekend, starting Thursday!! So, we had to wait until Monday for her to read the test and give us the results.....it was a very nerve-racking 4 days....to say the least. But we love and trust her doctor implicitly and didn't want anyone else to read the test results, so it was worth the wait.
Her doctors' nurse called us late in the day Monday to deliver the good news!! The test showed no seizure activity at all!!! They didn't see any abnormal electrical activity!!! Needless to say, I cried many, many tears of joy....we are so happy and so grateful to so many people. First and foremost, God. Not just for the excellent test result, but for getting her and us through the last very hard 17 months. And then we are so thankful to her neurologist, and the neurosurgeon and all the nurses and staff at Children's for essentially saving our daughter's life ( and putting up with me and my ten thousand questions!!) . We can never repay them for that most precious gift. And also thanks to all of our family and friends who provided never ending support and love through the whole process.
It's not quite over yet,though. She has to continue taking the anti-seizure meds for a full year post-op, which means through Jan-Feb 2012. It is their protocol to keep them on the meds for that long, because the brain can "re-learn" the seizure activity. Research has shown that it is less likely for the brain to re-learn the old seizure activity if they keep them on meds for 1 full year. We are of course praying that this "re-learning" does not happen!! But only time will tell. In Jan-Feb, she will have another EEG to confirm these test results, and also she will have another visit with the neurologist and neurosurgeon. Then they will decide when to start weaning her off her meds, if that is possible.
This whole process has taught us a alot about ourselves and about epilepsy and how much it can limit someone's life. We have decided to try and help other people with epilepsy by raising funds for The Epilepsy Foundation. The Epilepsy Foundation uses their money to fund research for surgical procedures, like the one Alannah had, and also to fund research for new and better meds for epilepsy control. They also create and help to pass laws which are aimed at preventing discrimination against people with epilepsy in the workplace and in schools. This is a link to their website and description of their foundation: http://www.epilepsyfoundation.org/aboutus/
Bella already started by working a lemonade stand all summer, and was able to raise $ 504.08. God-willing, in March 2012, Eric and the girls and I are going to Washington DC to participate in The Walk for Epilepsy. We are planning to investigate how the whole "WALK" works, and then hope to start a team, in Alannah's honor, for coming years. We hope that some or all of you will be willing to stand and/or "walk" with us for Alannah and for all the other children and adults who have dealt with, or are continuing to deal with epilepsy and its effects.
The Epilepsy Foundation's motto is "Not another moment lost to seizures". We sincerely hope that one day, this motto could be true for all people who have been diagnosed with epilepsy.
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| EEG tech, Donna, applying electrodes to Alannah's head |
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| Unhappy, "that glue stinks!!" |
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| Happy again! |
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| The queen with her remote! |
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| Marilyn, the funny nurse from January, came back to color with Alannah again! |
Friday, April 29, 2011
3 Month Follow-up Post Surgery
Hello everyone,
Alannah had her 3 month follow-up with the neurosurgeon and neurologist physician assistant yesterday, Thursday, 4/28/11.
First, she had an MRI so that they could have images of where they resected part of her right frontal lobe to see if that has healed the way they expected it to, and to make sure that nothing abnormal had happened in the healing process.
The neurosurgeon said everything looks good on the MRI. The area where they removed brain tissue has filled with fluid, which is what was suppose to happen and he saw nothing abnormal on the MRI. GOOD NEWS!
He informed us that since it has been 3 months since the surgery, that the skull bone where they had to cut is healed pretty solid at this point. He also reminded us that it would be a full year before she could withstand anything like sports or anything high impact. Bottom line: Don't let her do anything where she could fall and hit her head really hard, such as climbing a jungle gym, riding a bike without a helmet, etc....otherwise, she's clear to get out and about and is going back to preschool next week to finish out the year with her classmates!!
She does not need to see the neurosurgeon again until 1 year post surgery, which will be January 2012!
She has continued to remain seizure-free ( Thank God ) and will continue on with Keppra, her anti seizure med for 1 year post-op, b/c that is their protocol.
In August sometime, which is 7 months post-op, she will have a 24 hour video EEG. That means she'll go into the hospital in the morning, they will attach numerous leads to her scalp ( with special glue ) and then they will plug her into a monitor, which will record her electrical brain activity. They will admit her to the video unit ( which means they video tape her during her stay ) for that day and overnight and she will be able to leave the next morning. When we leave the unit the next morning, we will go directly to an appointment with her neurologist, who will be able to tell us if they see any abnormal ( epileptic ) brain waves on the EEG. Of course, this will be big news, either way. So we are anxious to see what happens, and we will keep praying that the news continues to be good news.
Below I have posted pictures from when we first got home after the surgery in January, through March 2011. You will be able to see how much her hair has grown over the incision area and almost all of the dissolvable (is that a word?) stitches have fallen off.
All in all, everything is coming along really well at this point, and we will continue to pray, and hope that all of you will continue to pray, for her to continue to heal and to enjoy life to its fullest potential.
Love, Marilena and Eric
Alannah had her 3 month follow-up with the neurosurgeon and neurologist physician assistant yesterday, Thursday, 4/28/11.
First, she had an MRI so that they could have images of where they resected part of her right frontal lobe to see if that has healed the way they expected it to, and to make sure that nothing abnormal had happened in the healing process.
The neurosurgeon said everything looks good on the MRI. The area where they removed brain tissue has filled with fluid, which is what was suppose to happen and he saw nothing abnormal on the MRI. GOOD NEWS!
He informed us that since it has been 3 months since the surgery, that the skull bone where they had to cut is healed pretty solid at this point. He also reminded us that it would be a full year before she could withstand anything like sports or anything high impact. Bottom line: Don't let her do anything where she could fall and hit her head really hard, such as climbing a jungle gym, riding a bike without a helmet, etc....otherwise, she's clear to get out and about and is going back to preschool next week to finish out the year with her classmates!!
She does not need to see the neurosurgeon again until 1 year post surgery, which will be January 2012!
She has continued to remain seizure-free ( Thank God ) and will continue on with Keppra, her anti seizure med for 1 year post-op, b/c that is their protocol.
In August sometime, which is 7 months post-op, she will have a 24 hour video EEG. That means she'll go into the hospital in the morning, they will attach numerous leads to her scalp ( with special glue ) and then they will plug her into a monitor, which will record her electrical brain activity. They will admit her to the video unit ( which means they video tape her during her stay ) for that day and overnight and she will be able to leave the next morning. When we leave the unit the next morning, we will go directly to an appointment with her neurologist, who will be able to tell us if they see any abnormal ( epileptic ) brain waves on the EEG. Of course, this will be big news, either way. So we are anxious to see what happens, and we will keep praying that the news continues to be good news.
Below I have posted pictures from when we first got home after the surgery in January, through March 2011. You will be able to see how much her hair has grown over the incision area and almost all of the dissolvable (is that a word?) stitches have fallen off.
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| This was almost immediately after we got home - You can see how the incision is lifted, running along the top of her head.......that was some funky hair-do! |
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| Getting back to guitar practice, she remembered everything! |
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| February - you could still see the holes on the top of her head where the wires went in, and she still had her stitches but they are too small for you to see in this picture, and the incision has flattened down alot at this point ( I have such a way with words....sorry! ) |
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| March - hair covers almost everything |
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| Playing with her cousins who came to visit from Tennessee - Kaci and Zachary |
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| And we started to put her back to work! haha |
All in all, everything is coming along really well at this point, and we will continue to pray, and hope that all of you will continue to pray, for her to continue to heal and to enjoy life to its fullest potential.
Love, Marilena and Eric
Wednesday, January 26, 2011
First follow up visit post surgery
Alannah's first follow up visit post surgery was Monday, 1-24-11.
It went pretty well. The neuro team is happy with how the incision looks, her activity level, and her appetite. They are also happy with the fact that she has not had any seizures (Thank you God).
The only thing she has to have looked at in February is a swollen lymph node/gland in her neck on the right side, the same side as the surgery. She had this inpatient, then it went away. An ear/nose/throat doctor looked at it while she was inpatient, but never had to do anything about it b/c it went away. Well, it came back last week, so the neurosurgeon wants us to have ENT doctor look at it again. So she has an appointment the 2nd week of Feb, to have it looked at. It doesn't hurt her and it may just be part of the healing process, but he wants it looked at just to be sure.
Other updates:
The skull bone will take 3 months to heal solid. It is being held in place by a plate and screws which will stay in forever, and as per the neurosurgeon, will not affect her ability to do anything in life. He said if she wanted to play football, she'd have to wait for a whole year post-surgery.....Here's to hoping she never really wants to play football, because I am already getting gray-haired pretty quickly! The plate and screws are even MRI safe.
In fact, her next follow up with both the surgeon and the neurologist is in 3 months, and she will have had an MRI by the time she sees them. She will be on anti-seizure meds for a whole year post-surgery, that is their protocol after this surgery.
At 6 months, the neurologist will see her again. At this point, she will have an EEG, which is a test that measures electrical brain activity. They will be looking for any abnormal brain waves......hopefully, they won't find any.
Then, at 1 year, if the EEG is normal and she still hasn't had any seizures, they will talk about weaning her off the seizure meds for good.
That's the plan for now.....
I will keep you all posted after the multiple visits over the next year.....if I forget to blog....call me. Teresa, thanks for the reminder for this one.
GO STEELERS! ( Sorry, Dr. Holder)
It went pretty well. The neuro team is happy with how the incision looks, her activity level, and her appetite. They are also happy with the fact that she has not had any seizures (Thank you God).
The only thing she has to have looked at in February is a swollen lymph node/gland in her neck on the right side, the same side as the surgery. She had this inpatient, then it went away. An ear/nose/throat doctor looked at it while she was inpatient, but never had to do anything about it b/c it went away. Well, it came back last week, so the neurosurgeon wants us to have ENT doctor look at it again. So she has an appointment the 2nd week of Feb, to have it looked at. It doesn't hurt her and it may just be part of the healing process, but he wants it looked at just to be sure.
Other updates:
The skull bone will take 3 months to heal solid. It is being held in place by a plate and screws which will stay in forever, and as per the neurosurgeon, will not affect her ability to do anything in life. He said if she wanted to play football, she'd have to wait for a whole year post-surgery.....Here's to hoping she never really wants to play football, because I am already getting gray-haired pretty quickly! The plate and screws are even MRI safe.
In fact, her next follow up with both the surgeon and the neurologist is in 3 months, and she will have had an MRI by the time she sees them. She will be on anti-seizure meds for a whole year post-surgery, that is their protocol after this surgery.
At 6 months, the neurologist will see her again. At this point, she will have an EEG, which is a test that measures electrical brain activity. They will be looking for any abnormal brain waves......hopefully, they won't find any.
Then, at 1 year, if the EEG is normal and she still hasn't had any seizures, they will talk about weaning her off the seizure meds for good.
That's the plan for now.....
I will keep you all posted after the multiple visits over the next year.....if I forget to blog....call me. Teresa, thanks for the reminder for this one.
GO STEELERS! ( Sorry, Dr. Holder)
Wednesday, January 19, 2011
SHE'S HOME !!!
Sorry it took me so long to update the blog. We came home on Monday, 1-17-11. Since we've been home, we have been very busy getting acclimated to being home again.
She is doing very well, the incision looks good, her appetite is picking up now that she's home, and her balance is steadily improving each day.
She's very annoyed with us sometimes because we constantly have to guard her from falling and bumping her head.....which is very annoying and limiting for her ( and us ) but it's in her best interests. Hopefully, that part we'll only need to worry about for 6-8 weeks, until the skull heals. We have to watch her for seizure activity too, because they informed us that she could have seizures post-op just from the surgery itself, for up to 3 months. Thank God above, none so far. I was saying that to someone today and she overheard me say she hadn't had any seizures yet.....and her response was "Mom ( in a very sarcastic tone ), That's why I had the surgery....." You could almost hear the "Duh", but she didn't actually say it....you could see it her eyes though!
Overall, things are going well and we are very blessed because she is acting more and more like herself everyday. She still has some recovery time to go, but she's well on her way.
The next update will be after her follow-up appointments on Monday, 1-24-11, with the neurologist and neurosurgeon.
Thanks, for the hundredth time, for everyone's love and concern.
She is doing very well, the incision looks good, her appetite is picking up now that she's home, and her balance is steadily improving each day.
She's very annoyed with us sometimes because we constantly have to guard her from falling and bumping her head.....which is very annoying and limiting for her ( and us ) but it's in her best interests. Hopefully, that part we'll only need to worry about for 6-8 weeks, until the skull heals. We have to watch her for seizure activity too, because they informed us that she could have seizures post-op just from the surgery itself, for up to 3 months. Thank God above, none so far. I was saying that to someone today and she overheard me say she hadn't had any seizures yet.....and her response was "Mom ( in a very sarcastic tone ), That's why I had the surgery....." You could almost hear the "Duh", but she didn't actually say it....you could see it her eyes though!
Overall, things are going well and we are very blessed because she is acting more and more like herself everyday. She still has some recovery time to go, but she's well on her way.
The next update will be after her follow-up appointments on Monday, 1-24-11, with the neurologist and neurosurgeon.
Thanks, for the hundredth time, for everyone's love and concern.
Sunday, January 16, 2011
SUNDAY 1-16-11 EVENING
Well, Alannah has continued to improve today. She has been eating a little more and walking a little more and being more and more sassy as the day goes on.....all very good news!
The plan is still for us to go home tomorrow......and we are very excited about that.
She has not been wearing her mesh hat at all today....I wanted to wash the hat and the doctors said to leave the incision open to air and to wash her hair tomorrow. If you scroll down, you'll see pics of the incision now that it is closed up.
Update on move home will be tomorrow evening.
PICS:
The plan is still for us to go home tomorrow......and we are very excited about that.
She has not been wearing her mesh hat at all today....I wanted to wash the hat and the doctors said to leave the incision open to air and to wash her hair tomorrow. If you scroll down, you'll see pics of the incision now that it is closed up.
Update on move home will be tomorrow evening.
PICS:
Sunday - 1-16-11 - morning
The hat came off today.....she feels great with the hat off....I am a little nervous because I am afraid something will get on her incision. Apparently I am just an over-anxious mother (which I am sure is a big surprise to none of you ) because the doctors say it's better to leave the incision open to air most of the day, it will help it heal faster. Plus they told us it is "Water-proof" after 48 hours.
As of right now, if nothing else changes, she is going home tomorrow. SHE IS VERY HAPPY ABOUT THAT....SHE WANTED TO GO HOME YESTERDAY!
She is acting a little more energetic today and eating a shade better than yesterday...she still gets tired very easily but that is to be expected and will probably be the norm for some time yet.
More later..................
As of right now, if nothing else changes, she is going home tomorrow. SHE IS VERY HAPPY ABOUT THAT....SHE WANTED TO GO HOME YESTERDAY!
She is acting a little more energetic today and eating a shade better than yesterday...she still gets tired very easily but that is to be expected and will probably be the norm for some time yet.
More later..................
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