Friday, December 10, 2010
Wednesday, December 8, 2010
An Overwhelming Too Long Day
I am going to keep this one as short as I can. I am so tired and I vowed to stay off of the computer tomorrow, so I want to get this posted tonight.
Last night was a very long night. It was the second night that Vada was kept from sleep because of her seizures and I was right there with her. Needless to say, I am t-i-r-e-d. So tired that I feel sick! Sleep couldn't come soon enough for me..., i'm just waiting on Vada. She however, feel asleep on the way home from Peoria, so, it may be awhile.
Vada and I left the house this morning at 9:45 A.M and didnt return home until 7 P.M. Our first stop in Peoria was the cardiologists office. She had an ECHO and an EKG done today. Dr. Bramlett said that the structure of Vada's heart has been "changed" because of the stenosis and that it is making it difficult to determine if the holes in her heart are actually larger, or if they just look that way. Either way, the holes look larger than they once were. If that's the case then we do need to do surgery and soon. He said to be for sure we need to do a sedated ECHO on Vada heart and he wants to do that as soon as possible. That way nothing is missed, hopefully. I should be receiving a call with the set appointment tomorrow and its suppose to be scheduled before Christmas.
Vada is not showing any signs of heart failure, so he is pretty confident that she is doing "just fine". He did mention that he wants to meet with the whole "team" of cardiologist after the sedated ECHO is finished and get everyone's opinion.
Over the past couple of months we have been told one thing or another from each and every cardiologist that we have seen. Each cardiologist seems to have a different opinion on how Vada's heart condition should be treated. Hopefully once they are all together they'll be able to agree on whats right for Vada.
After finishing up with the Cardiologist we hopped into the elevators and went up one floor to the neurologists office. We waited in the waiting room fir two hours, which is what happens when your "worked into the schedule", so I am not complaining. Once Vada and I were put into a room and Dr. Jennings came in we had his full attention and I am grateful for that too.
Dr. Jennings and I corresponded throughout all of yesterday through emails. I sent him the newest videos of what I thought was Vada having more seizures and we discussed what our plan was. So when we met today we were already on the same page.
Vada's seizures look different than they once did for several reasons. The main being she has gained a lot of weight from the ACTH and her weight is actually weighing her body down, making the movements seem "different". Also, she is on a anticonvulsant (Keppra) and that may change the way the seizures effect her body reacts to whats going on in her brain. So the seizures may present themselves differently.
As of this moment I am giving Vada full dose injections of ACTH. It should only be a couple of days until we recieve the new medication Vigabatrin (Sabril). It will be delivered directly to our house, just like the ACTH was. Dr. Jennings seems to think that it should be here by Friday. Monday at the latest. So, for now, to control Vada's seizures we'll use the ACTH. Luckily, I have enough on hand. Were using the starting dose because I have already gave her one injection at half of the original starting dose and it didn't seem to do any damage against this round of seizures. The ACTH defiantly give our little cashew a boost! Either it gives her energy and strength or it wipes out those seizures and lets her function... probably both! Either way she was in a good mood. Rolling around and in the army crawl position again. Its nice to see. I hope that this new drug does the job. Well be going back to see Dr. Jennings next Thursday for a check up to see how shes doing on this new prescription.
So..., I think that I have basically covered everything. I am too tired to go back through and check... so, hopefully its all here. :P
I am also too tired to check my spelling, so, sorry.
Night everyone!
Last night was a very long night. It was the second night that Vada was kept from sleep because of her seizures and I was right there with her. Needless to say, I am t-i-r-e-d. So tired that I feel sick! Sleep couldn't come soon enough for me..., i'm just waiting on Vada. She however, feel asleep on the way home from Peoria, so, it may be awhile.
Vada and I left the house this morning at 9:45 A.M and didnt return home until 7 P.M. Our first stop in Peoria was the cardiologists office. She had an ECHO and an EKG done today. Dr. Bramlett said that the structure of Vada's heart has been "changed" because of the stenosis and that it is making it difficult to determine if the holes in her heart are actually larger, or if they just look that way. Either way, the holes look larger than they once were. If that's the case then we do need to do surgery and soon. He said to be for sure we need to do a sedated ECHO on Vada heart and he wants to do that as soon as possible. That way nothing is missed, hopefully. I should be receiving a call with the set appointment tomorrow and its suppose to be scheduled before Christmas.
Vada is not showing any signs of heart failure, so he is pretty confident that she is doing "just fine". He did mention that he wants to meet with the whole "team" of cardiologist after the sedated ECHO is finished and get everyone's opinion.
Over the past couple of months we have been told one thing or another from each and every cardiologist that we have seen. Each cardiologist seems to have a different opinion on how Vada's heart condition should be treated. Hopefully once they are all together they'll be able to agree on whats right for Vada.
After finishing up with the Cardiologist we hopped into the elevators and went up one floor to the neurologists office. We waited in the waiting room fir two hours, which is what happens when your "worked into the schedule", so I am not complaining. Once Vada and I were put into a room and Dr. Jennings came in we had his full attention and I am grateful for that too.
Dr. Jennings and I corresponded throughout all of yesterday through emails. I sent him the newest videos of what I thought was Vada having more seizures and we discussed what our plan was. So when we met today we were already on the same page.
Vada's seizures look different than they once did for several reasons. The main being she has gained a lot of weight from the ACTH and her weight is actually weighing her body down, making the movements seem "different". Also, she is on a anticonvulsant (Keppra) and that may change the way the seizures effect her body reacts to whats going on in her brain. So the seizures may present themselves differently.
As of this moment I am giving Vada full dose injections of ACTH. It should only be a couple of days until we recieve the new medication Vigabatrin (Sabril). It will be delivered directly to our house, just like the ACTH was. Dr. Jennings seems to think that it should be here by Friday. Monday at the latest. So, for now, to control Vada's seizures we'll use the ACTH. Luckily, I have enough on hand. Were using the starting dose because I have already gave her one injection at half of the original starting dose and it didn't seem to do any damage against this round of seizures. The ACTH defiantly give our little cashew a boost! Either it gives her energy and strength or it wipes out those seizures and lets her function... probably both! Either way she was in a good mood. Rolling around and in the army crawl position again. Its nice to see. I hope that this new drug does the job. Well be going back to see Dr. Jennings next Thursday for a check up to see how shes doing on this new prescription.
So..., I think that I have basically covered everything. I am too tired to go back through and check... so, hopefully its all here. :P
I am also too tired to check my spelling, so, sorry.
Night everyone!
Tuesday, December 7, 2010
The Rules of the Game
While Jasmine and I were playing cards Vada rolled over and asked to be included. We try to inclued her in everything that we do so I scooped her up and we started to explains the rules of Phase 10.
Needless to say..., she didn't care about the rules. She had already decided that she knew how to play the game and she was going to do it her way.
Truthfully, she was quite good. She decided that I shouldn't have any green cards..., so she removed them all.
There was only one, but that's a minor detail. She is still a genius in my eyes!
Needless to say..., she didn't care about the rules. She had already decided that she knew how to play the game and she was going to do it her way.
Truthfully, she was quite good. She decided that I shouldn't have any green cards..., so she removed them all.
There was only one, but that's a minor detail. She is still a genius in my eyes!
Off the Fence
Its been around three weeks since Vada has been off of ACTH.
On the second day of not having an injections I saw "something". Luckily, Justin was right there next to me.
It was a very surreal moment for us both. I cant speak for Justin but I immediately tasted bile in my mouth. I knew what we saw the moment I saw it, but I didn't want to admit it. Facing fears, let alone one of my biggest fears was not something that I wanted to do that day.
I wasn't ready to say the word "seizures" let alone admit that my beautiful baby girl was having them again.
I wasn't ready to face the seizures. So, I began grasping for anything and everything that it could be besides seizures.
The type of seizures that Vada has (West syndrome also known as Infantile Spasms) can be difficult to diagnose because the movements from the seizures tend to look like the movements caused by Acid reflux or GERD. Even though the chance that it was Acid Reflux or GERD for Vada was slim to none, I had to rule it out before I was willing to start yet another risky medication.
Besides, if I hadnt ruled out all of the other possibilities then I would always wonder if I had made the right choice in starting this new medication. I guess, really that I just needed to hear that it wasn't GERD, even though in my heart I knew. I guess, it was just hopeful thinking.
About a week ago, I told Justin that I thought that originally we had seen Vada having seizures but that I thought that they were presenting themselves because she had a fever at the time.
More wishful thinking on my part.
These last couple of days have been full of odd movements and Vada's "suffering" has finally become apparent to me. I am no longer ""on the fence", I wont deny the seizures any longer.
They are back, they are stronger than before (in ways) and they are causing Vada to regress in areas that she was excelling in before.
Seizures are scary. Its something no one will fully understand until they themselves go through it, or have watched a loved one suffer from them. The damage caused by one single seizure can be devastatingly irreversible. Which makes them that much more frightening to deal with.
Treatment to stop the kind of seizures that Vada has is next to none. I am just as overwhelmed by the possible side effects from these medications as I am knowing that she is having seizures but allowing her to continue on having seizures is not an option I am willing to take.
Last night I spoke with Vada's neurologist and asked him if I could give her another injection of ACTH. The last time I gave her a single dose injection what we thought to be seizures, were stopped. Unfortunately, this injection did not do the same. At least not that I can tell.
I also emailed him some video's that I recorded of what I thought was Vada having seizures. He agreed that she was having cluster seizures again.
Tomorrow Vada had an appointment with her cardiologist. Which is still scheduled. After wards however, she will be seeing her neurologist and we will be filling out all of the paper work to get the approval for the new medication. I should have a good idea of what is to be expected by the end of tomorrow.
She is a strong girl. I cant believe how strong! Please continue to keep her in your prayers and I will continue to update as I find out what we will be doing.
Thank you.
On the second day of not having an injections I saw "something". Luckily, Justin was right there next to me.
It was a very surreal moment for us both. I cant speak for Justin but I immediately tasted bile in my mouth. I knew what we saw the moment I saw it, but I didn't want to admit it. Facing fears, let alone one of my biggest fears was not something that I wanted to do that day.
I wasn't ready to say the word "seizures" let alone admit that my beautiful baby girl was having them again.
I wasn't ready to face the seizures. So, I began grasping for anything and everything that it could be besides seizures.
The type of seizures that Vada has (West syndrome also known as Infantile Spasms) can be difficult to diagnose because the movements from the seizures tend to look like the movements caused by Acid reflux or GERD. Even though the chance that it was Acid Reflux or GERD for Vada was slim to none, I had to rule it out before I was willing to start yet another risky medication.
Besides, if I hadnt ruled out all of the other possibilities then I would always wonder if I had made the right choice in starting this new medication. I guess, really that I just needed to hear that it wasn't GERD, even though in my heart I knew. I guess, it was just hopeful thinking.
About a week ago, I told Justin that I thought that originally we had seen Vada having seizures but that I thought that they were presenting themselves because she had a fever at the time.
More wishful thinking on my part.
These last couple of days have been full of odd movements and Vada's "suffering" has finally become apparent to me. I am no longer ""on the fence", I wont deny the seizures any longer.
They are back, they are stronger than before (in ways) and they are causing Vada to regress in areas that she was excelling in before.
Seizures are scary. Its something no one will fully understand until they themselves go through it, or have watched a loved one suffer from them. The damage caused by one single seizure can be devastatingly irreversible. Which makes them that much more frightening to deal with.
Treatment to stop the kind of seizures that Vada has is next to none. I am just as overwhelmed by the possible side effects from these medications as I am knowing that she is having seizures but allowing her to continue on having seizures is not an option I am willing to take.
Last night I spoke with Vada's neurologist and asked him if I could give her another injection of ACTH. The last time I gave her a single dose injection what we thought to be seizures, were stopped. Unfortunately, this injection did not do the same. At least not that I can tell.
I also emailed him some video's that I recorded of what I thought was Vada having seizures. He agreed that she was having cluster seizures again.
Tomorrow Vada had an appointment with her cardiologist. Which is still scheduled. After wards however, she will be seeing her neurologist and we will be filling out all of the paper work to get the approval for the new medication. I should have a good idea of what is to be expected by the end of tomorrow.
She is a strong girl. I cant believe how strong! Please continue to keep her in your prayers and I will continue to update as I find out what we will be doing.
Thank you.
Friday, December 3, 2010
Promoted
Tonight Jasmine earned her orange belt in Karate. This was her second promotion since beginning Karate. I unfortunately missed her first promotion. However, I was here tonight and I was so proud of her determination and the skills that she has already acquired.
Jasmine and her peers were worked pretty hard for about forty minutes. They had to demonstrate everything that they had been taught so far and they had to keep up with each other (for the most part). It was very impressive to see all of the kids doing the steps in a pretty close form of unison.
Jasmine goes to Karate twice a week. Her next promotion will be from an orange belt to a yellow one. She has worn her orange belt once (tonight) and she is already talking about not being able to wait until she has her yellow one.
I am so happy that she is in an activity that she enjoys and something that teaches about self respect, control and respect for others. I really, really like that she choose Karate and I am really proud of her accomplishments already. I cant wait to see what she accomplishes and learns with each new level.
Jasmine and her peers were worked pretty hard for about forty minutes. They had to demonstrate everything that they had been taught so far and they had to keep up with each other (for the most part). It was very impressive to see all of the kids doing the steps in a pretty close form of unison.
Jasmine goes to Karate twice a week. Her next promotion will be from an orange belt to a yellow one. She has worn her orange belt once (tonight) and she is already talking about not being able to wait until she has her yellow one.
I am so happy that she is in an activity that she enjoys and something that teaches about self respect, control and respect for others. I really, really like that she choose Karate and I am really proud of her accomplishments already. I cant wait to see what she accomplishes and learns with each new level.
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