Happy Halloween!
Charlie Claire will be admitted to the Epilepsy Monitoring Unit tomorrow at VCU to check out her seizure activity. We recently started seeing some new seizures and are anxious to find out if this is coming from the same "left over" area or not. Please keep our sweet girl in your thoughts and prayers...I can assure you that if you are in a 50 mile radius of VCU tomorrow morning when they go to put her EEG leads on you will be able to hear CC SCREAMING. Wish us luck!
Hope everyone has fun trick or treating tonight!
Monday, October 31, 2011
Saturday, October 29, 2011
Birthday Party!
Jackson and Charlie Claire's 1st birthday party was a BLAST! I really want to thank my sister in law, Jen, for helping me put everything together! Jen helped me with EVERYTHING from creating the invitations to setting up for the party! Thank you so much for your help, it was greatly appreciated!!
We also want to thank our family and friends for coming and celebrating J Monster and Charlie Claire Bear with us! It was such an amazing feeling to see other people love your little ones!
These pictures were taken courtesy of Jen and our dear family friend, Beth Friske! Thanks so much ladies! Hope you all enjoy them!
We also want to thank our family and friends for coming and celebrating J Monster and Charlie Claire Bear with us! It was such an amazing feeling to see other people love your little ones!
These pictures were taken courtesy of Jen and our dear family friend, Beth Friske! Thanks so much ladies! Hope you all enjoy them!
Friday, October 28, 2011
MEGA
Sorry for the lack of posts - it's been a busy couple of weeks! This post is a tad long...consider yourself warned! :)
We do have some pictures from Jackson and Charlie Claire's birthday party and I promise we will share them with you, hopefully this weekend.
This past weekend Jason's cousin got married in Charlotte, NC. We had a fantastic time getting out of town for a couple of days and getting together with all of Jason's family - especially getting all the little cousins together! They will for sure be causing all types of mayhem in the next few years! Congratulations Tara and Dwight!
Jackson and C had their 1 year check ups on Monday...
J-Monster: 23lbs 12oz and 30.75in
Charlie Cakes: 20lbs 1oz and 30.25in
Dr. Cotton is the nicest lady ever and she was super duper pleased with how Jackson and Charlie are doing.
Charlie Claire also went for blood work on Monday to get a lamictal level. I just got off the phone with the nurse from Dr. M's office - C's level is still NOT at a therapeutic level. It's at 3.3 and it still needs to be between 4-12. They are trying to get her into the Epilepsy Monitoring Unit next week to see if they can figure out what is going on and why C's level isn't increasing more.
Charlie Claire's Early Intervention team met Tuesday. We LOVE C's team so, so much! Those ladies are the BEST! We met to discuss Charlie Claire's short term goals because she has reached 4 out of the 6 we set for her in May. In December CC will have her annual assessment so we only added 2 new goals. We are also having an Occupational Therapist come out for an assessment and hopefully will soon be adding an OT once a week.
Hope everyone is having a great Friday...be on the look out for birthday pics and for some exciting info on Epilepsy Awareness Month - which is November!!
We do have some pictures from Jackson and Charlie Claire's birthday party and I promise we will share them with you, hopefully this weekend.
This past weekend Jason's cousin got married in Charlotte, NC. We had a fantastic time getting out of town for a couple of days and getting together with all of Jason's family - especially getting all the little cousins together! They will for sure be causing all types of mayhem in the next few years! Congratulations Tara and Dwight!
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| Jackson and Bubba! |
Jackson and C had their 1 year check ups on Monday...
J-Monster: 23lbs 12oz and 30.75in
Charlie Cakes: 20lbs 1oz and 30.25in
Dr. Cotton is the nicest lady ever and she was super duper pleased with how Jackson and Charlie are doing.
Charlie Claire also went for blood work on Monday to get a lamictal level. I just got off the phone with the nurse from Dr. M's office - C's level is still NOT at a therapeutic level. It's at 3.3 and it still needs to be between 4-12. They are trying to get her into the Epilepsy Monitoring Unit next week to see if they can figure out what is going on and why C's level isn't increasing more.
Charlie Claire's Early Intervention team met Tuesday. We LOVE C's team so, so much! Those ladies are the BEST! We met to discuss Charlie Claire's short term goals because she has reached 4 out of the 6 we set for her in May. In December CC will have her annual assessment so we only added 2 new goals. We are also having an Occupational Therapist come out for an assessment and hopefully will soon be adding an OT once a week.
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| Charlie Claire's team! |
Hope everyone is having a great Friday...be on the look out for birthday pics and for some exciting info on Epilepsy Awareness Month - which is November!!
Monday, October 17, 2011
L.O.V.E.
We are in LOVE with the latest set of photos from Jessie!!!
To see some more pictures head to Jessie's website, Jessica Smith Photography. It would be awesome if you left a comment on her blog!!!
Jackson and Charlie Claire's birthday party was AWESOME! We can't wait to share those pictures with you as well!
Happy Monday!
To see some more pictures head to Jessie's website, Jessica Smith Photography. It would be awesome if you left a comment on her blog!!!
Jackson and Charlie Claire's birthday party was AWESOME! We can't wait to share those pictures with you as well!
Happy Monday!
Friday, October 14, 2011
October 14
We come full circle today...
Last year on October 14, our sweet 3 day old daughter had her first seizure and instead of being discharged from the hospital with me and Jackson she was admitted to the NICU. She had multiple "dusky" episodes during the day and that evening they determined she was having seizures. Shortly after this realization Charlie Claire was given her first dose of phenobarb.
Exactly one year later Charlie Claire will take her last dose of phenobarb. We only knew our little girl for 3 days before starting her whirlwind of seizure medications. It will be such an amazing moment when we measure out her meds for Saturday morning to have one less we have to give her. Thank you phenobarb for being one of the only seizure medications that Charlie Claire ever responded to...I can't say that we will miss you but we sure do appreciate you and what you have done for C!
This day is a hard day to think back on. Our world came crashing down on us in a matter of minutes. We went from getting the hospital discharge papers to Charlie being taken away from us and admitted to the NICU. We did not know what was going on with Charlie Claire except that she was experiencing apnea. Her getting admitted to the NICU was just the beginning of all the blood draws, IVs, MRIs, EEGs, medications, hospital stays, surgeries, etc. that our sweet little girl would have to endure during the first year of her life. It is safe to say that this girl has gone through more in her short little life than most grown adults have their entire lives.
We are constantly amazed by Charlie Claire and that despite all that she has gone through she has the sweetest disposition, best laugh and continues to keep truckin' along!
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)
Last year on October 14, our sweet 3 day old daughter had her first seizure and instead of being discharged from the hospital with me and Jackson she was admitted to the NICU. She had multiple "dusky" episodes during the day and that evening they determined she was having seizures. Shortly after this realization Charlie Claire was given her first dose of phenobarb.
Exactly one year later Charlie Claire will take her last dose of phenobarb. We only knew our little girl for 3 days before starting her whirlwind of seizure medications. It will be such an amazing moment when we measure out her meds for Saturday morning to have one less we have to give her. Thank you phenobarb for being one of the only seizure medications that Charlie Claire ever responded to...I can't say that we will miss you but we sure do appreciate you and what you have done for C!
This day is a hard day to think back on. Our world came crashing down on us in a matter of minutes. We went from getting the hospital discharge papers to Charlie being taken away from us and admitted to the NICU. We did not know what was going on with Charlie Claire except that she was experiencing apnea. Her getting admitted to the NICU was just the beginning of all the blood draws, IVs, MRIs, EEGs, medications, hospital stays, surgeries, etc. that our sweet little girl would have to endure during the first year of her life. It is safe to say that this girl has gone through more in her short little life than most grown adults have their entire lives.
We are constantly amazed by Charlie Claire and that despite all that she has gone through she has the sweetest disposition, best laugh and continues to keep truckin' along!
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)
Thursday, October 13, 2011
Happy Birthday!
We had an awesome day Tuesday...
We are super excited for Jackson and Charlie Claire's birthday party this weekend, we can't wait to celebrate them with our family and friends!
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| Hello Sweet Birthday Boy! |
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| Hello Sweet Birthday Girl! |
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| Lunch with Fairy God Mothers! |
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| Anxiously waiting for cake and presents! |
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| love his sweet face! |
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| Not so sure about eating the cake! |
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| Don't waste any time using your hands! |
We are super excited for Jackson and Charlie Claire's birthday party this weekend, we can't wait to celebrate them with our family and friends!
Tuesday, October 11, 2011
First Birthday!
One year ago at 8:07am and 8:08am we welcomed the two most amazing babies we ever could have asked for!
This year has thrown more at us then we ever imagined and while it wasn't the year we expected we wouldn't change it - it was our year.
We feel so blessed to be Jackson and Charlie Claire's parents and can not wait to see what the next year holds for our family!
Happy 1st Birthday Sweet Babies! We love you so much!
This year has thrown more at us then we ever imagined and while it wasn't the year we expected we wouldn't change it - it was our year.
We feel so blessed to be Jackson and Charlie Claire's parents and can not wait to see what the next year holds for our family!
Happy 1st Birthday Sweet Babies! We love you so much!
Monday, October 10, 2011
Game Plan
Super glad we heard from Dr. M at lunch time and didn't have to wait all day..after missing his call Friday evening and waiting all weekend!
Dr. M anticipates the Charlie Claire's lamictal level will increase just by her coming off the phenobarb. C will take her last dose of phenobarb on Friday and she will get a blood test about 10 days after that. Dr. M said her lamictal level may increase rapidly so we need to watch for signs of C being overly sleepy, out of it, etc. which would indicate a problem and we need to call immediately.
Hopefully the increase will stop these episodes. If the blood test shows the lamictal is at a good level and helping then we will work on getting Charlie Claire off Keppra followed by getting her off Klonopin. We all agree that we do not want Charlie on multiple seizure meds long term. Dr. M isn't sure if the Keppra is doing anything to help these episodes and really the only way of knowing is to take it away. If we taper her off of the Keppra and things are still looking good we will then start tapering the Klonopin. The Klonopin probably isn't helping C's episodes since she has been on it at the same dose for a long time. Klonopin is one of the medications that your body becomes dependent on and in order to continue experiencing the positive effects you would need to continue to increase your dose - which we have not done. The Klonopin taper will take a while since C's body is dependent on it she could experience withdrawal (which could include withdrawal seizures) if they drop it to quickly.
If the lamictal is in the therapeutic range but is on the low end and not helping then they will try and get her level to 12 as quickly as possible. If we hit the 12 mark and have seen no improvement we will be heading up to VCU to meet with the team and discuss our next steps.
One thing I discussed with Dr. M. is if these episodes Charlie Claire is having could turn into infantile spasms again. This is the form of catastrophic epilepsy C was having before her surgery and it severely impacts development. We have not seen a spasm since the morning of March 30. It is a fear of mine for them to return. Dr. M reassured me that the infantile spasms should remain in our past and that it isn't a concern of his. He also reminded me that if these episodes were having any type of negative impact on C's development they would be much more aggressive in their approach with this.
We are grateful we got to speak with Dr. M today and go over all of our questions/concerns/etc. It is a huge help for us to be able to go over everything with Dr. M and for us all to be on the same page.
Tomorrow our sweet little ones turn ONE! Not only will we be celebrating them but we will be celebrating how far we've come in this year...
Dr. M anticipates the Charlie Claire's lamictal level will increase just by her coming off the phenobarb. C will take her last dose of phenobarb on Friday and she will get a blood test about 10 days after that. Dr. M said her lamictal level may increase rapidly so we need to watch for signs of C being overly sleepy, out of it, etc. which would indicate a problem and we need to call immediately.
Hopefully the increase will stop these episodes. If the blood test shows the lamictal is at a good level and helping then we will work on getting Charlie Claire off Keppra followed by getting her off Klonopin. We all agree that we do not want Charlie on multiple seizure meds long term. Dr. M isn't sure if the Keppra is doing anything to help these episodes and really the only way of knowing is to take it away. If we taper her off of the Keppra and things are still looking good we will then start tapering the Klonopin. The Klonopin probably isn't helping C's episodes since she has been on it at the same dose for a long time. Klonopin is one of the medications that your body becomes dependent on and in order to continue experiencing the positive effects you would need to continue to increase your dose - which we have not done. The Klonopin taper will take a while since C's body is dependent on it she could experience withdrawal (which could include withdrawal seizures) if they drop it to quickly.
If the lamictal is in the therapeutic range but is on the low end and not helping then they will try and get her level to 12 as quickly as possible. If we hit the 12 mark and have seen no improvement we will be heading up to VCU to meet with the team and discuss our next steps.
One thing I discussed with Dr. M. is if these episodes Charlie Claire is having could turn into infantile spasms again. This is the form of catastrophic epilepsy C was having before her surgery and it severely impacts development. We have not seen a spasm since the morning of March 30. It is a fear of mine for them to return. Dr. M reassured me that the infantile spasms should remain in our past and that it isn't a concern of his. He also reminded me that if these episodes were having any type of negative impact on C's development they would be much more aggressive in their approach with this.
We are grateful we got to speak with Dr. M today and go over all of our questions/concerns/etc. It is a huge help for us to be able to go over everything with Dr. M and for us all to be on the same page.
Tomorrow our sweet little ones turn ONE! Not only will we be celebrating them but we will be celebrating how far we've come in this year...
Sunday, October 9, 2011
Jackson and Charlie Claire
Sneak peak of Jackson and Charlie Claire's ONE YEAR photo session with the rock star photographer, Jessie Smith!
Aren't these amazing?! We can not believe they are almost 1! We can not wait to see the rest of the pictures of our precious little ones!
We put a call in late last week to the neuro just to discuss our game plan, we asked to actually speak to Dr. M and not to him through his nurse. Sometimes it is nice to get all the info and ask all your questions directly to the Dr. I missed his call back Friday evening so hopefully we will get to talk to him tomorrow so that we will get our questions answered and we all be on the same page.
Aren't these amazing?! We can not believe they are almost 1! We can not wait to see the rest of the pictures of our precious little ones!
We put a call in late last week to the neuro just to discuss our game plan, we asked to actually speak to Dr. M and not to him through his nurse. Sometimes it is nice to get all the info and ask all your questions directly to the Dr. I missed his call back Friday evening so hopefully we will get to talk to him tomorrow so that we will get our questions answered and we all be on the same page.
Monday, October 3, 2011
2.5
2.5: the level of lamictal in Charlie Claire's blood
4-12: the level that is considered therapeutic
On one hand it is nice to know the medicine isn't at a therapeutic level because we haven't seen much of an improvement with her episodes and that means we have some room to play around with the dose. On the other hand, living our life in 2 week increments is kind of crappy.
Dr. M isn't 100% sure why C's level isn't higher than what it currently is. In August she was taking 5mg twice a day and her level was 0.9. She is now up to 25mg twice a day. Dr. M is not upping the lamictal just yet. He wants Charlie to come off the phenobarb first to see if that in itself causes the lamictal level to increase.
Charlie Claire's last dose of phenobarb will be on October 14th and we will touching base with VCU at that time to get further medication instructions.
4-12: the level that is considered therapeutic
On one hand it is nice to know the medicine isn't at a therapeutic level because we haven't seen much of an improvement with her episodes and that means we have some room to play around with the dose. On the other hand, living our life in 2 week increments is kind of crappy.
Dr. M isn't 100% sure why C's level isn't higher than what it currently is. In August she was taking 5mg twice a day and her level was 0.9. She is now up to 25mg twice a day. Dr. M is not upping the lamictal just yet. He wants Charlie to come off the phenobarb first to see if that in itself causes the lamictal level to increase.
Charlie Claire's last dose of phenobarb will be on October 14th and we will touching base with VCU at that time to get further medication instructions.
Learn the art of patience. Apply discipline to your
thoughts when they become anxious over the outcome of a goal. Impatience breeds
anxiety, fear, discouragement and failure. Patience creates confidence,
decisiveness, and a rational outlook, which eventually leads to success.
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