Well, not much new going on around here. Dawson continues to be in better spirits with a few short outbursts here and there. It is great to have him unlatch from me and play with his sister or by himself. It has been a nice weekend with sunny skies so the kiddos have been outdoors. Madison will go out all by herself to play with the dogs or whatever. Becoming Miss Independent! Today they rode around in the jeep while I washed the dogs...fun task for me!! Our golden retriever, Zoe, was in need of a good bath, brush and clipping. She is looking good now, if I do say so myself!!
So, thats about it. Not much to report. Oh, we did go up on the Zonegran this past Tuesday to 100mg. We will drop the Keppra this Tuesday to 100mg am & pm. With every decrease of the Keppra it seems we see more and more of Dawson's personality emerge...we love it!!!
Allison & Jeff
Sunday, February 28, 2010
Monday, February 15, 2010
Dinner with Dawson
Snapped a few pics and video during dinner tonight. He was being such a ham and a very very messy eater!! It was so funny though and we really enjoyed watching him just be.... well, just being him..
Things have really changed for the better the last few days.. Not really seizure wise, but he has just been..... I guess the best way to put it is "normal" if there is such a thing.
He has been so very happy and it seems as though for now the worst part of the storm is over.
He has been in such a great mood all weekend long and continued today. This kid has been jabberin up a storm too. Its hard to know what hes talking about but HE knows exactly what hes saying.. New words started coming on his own over the weekend too. I was changing him and he looked up the the light in his room, pointed to it and said " ight" It seems as though with the little unprovoked speaking hes doing this weekend, and all the jabbering, he is right on the threshold of actually putting a few words together... Were getting there anyway so keep praying... Progress is good and a good mood to go along with it is just absolutely heaven!!
We actually got to go outdoors Saturday and play. The weather here in North Alabama warmed up to a balmy 43 degrees but that felt like Spring compared to what its been like around here. We had some fun finally.. It was short lived because last night, more snow, and icy roads this morning and were back in the deep freeze again.... BLAH!! Oh well ,we will just be thankful for the one day outdoors we got.
Wow how fast things change right?? I mean just days and weeks ago things around here were completely chaotic and horrible and now were feeling on top of the world and other than the seizures during the day hes just normal as can be. I think the trick to this is recognizing the great days for what they are... GREAT and giving thanks to God for that day.. And in the darkest of days..... well, we really have to lean on him to make it through...
Today has been a great day!!
Sorry for the poor quality of pics and video. They were snapped with a cell phone but I think you will get the point of how much fun he was providing.
Love to all
Jeff and Allison
Wednesday, February 10, 2010
Cabin fever
Winter in the south is not supposed to be like this... A freak snowstorm a couple of days ago that dumped 4 inches in a matter of a couple of hours, and cold ( ok, cold for north Alabama) The weather here since December has been awful. Lows in the 20's every single night this week, Highs only in the mid 30's for the next seven days... I am sick and tired of being stuck indoors!!
I used to scoff at people who claim to have " seasonal depression" but now I'm kinda thinking there might be something to it.. I know its way to early but I am so ready for Spring... or at least more seasonal February temps.
Dawson has had a kind of back and forth week. The weekend was pretty miserable. Both Saturday and Sunday he only wanted to do this... The look says it all and its almost as if hes trying to hide from the seizure monster
Anything other than this would not work at all. Allison, bless her, was pretty much confined to having what I affectionately named " the leech" attached to her all weekend. If she tried to leave him........ well lets just say it was a long weekend indeed.
After the weekend things began to improve. and today?? Grampy says he had a super day today and this evening it has continued. He and Madison are watching Diego and riding the scooter through the house. They play this game where she is the mommy and Dawson is the baby.. He calls her mama and wants her to pick him up and carry him everywhere... hilarious!! Especially since Dawson almost outweighs her now. Its nice to see things kind of level off a little bit and take a breather. My parents came by the other night so that Allison and I could sneak off to the movies. We don't get to do much " dating" anymore but I think I found a girl who babysits and has been sitting for a little boy in our area that has Lennox Gastaut. If everybody is comfortable, Allison and I are going to do more "dating" Even if I have to DRAG her along!!!
We increased his Zonegran a couple of days ago for the third time and it seems to be doing OK. Still having single spasms peppered throughout the day but if I overheard correctly... None today!! Thank you Lord for this seizure free day. We will take everyone we can get and we continue to pray we can start to string some seizure free days together again.
I have found myself overwhelmed the past few weeks. Ive been kind of moping to myself and even feeling a little sorry for myself in this seizure/med saturated situation. Nothing breaks my heart more than to see my son sensing a seizure coming. Or to watch him have seizures, or to see him completely frustrated because he cant tell us what he wants or needs. I haven't cared lately how much better he has it compared to other people out there... He has seizures everyday and its heartbreaking and I hate them!! Yeah, Ive been in a little bit of a funk lately to say the least. BUT, I saw this sign today on a church billboard. When you live in the Bible belt, signs on church billboards are a pretty common thing but there was something different about this one. God used it to speak directly to me.. Its amazing the ways and the people and the things God will use to speak to and direct you if you will allow him to do so..
The sign was simple... " Don't pray for an easier life................. Pray for more strength instead."
Just exactly what I needed to hear today
Jeff and Allison
Friday, February 5, 2010
Early Intervention Eval
We had our friends from Early Intervention come out today for a visit.
The speech therapist who sees Dawson once a month ( she does this out of the goodness of her own heart just to make sure he is doing ok) mentioned to the E.I people that maybe Dawson needed to pick back up on his occupational therapy. At one time he was getting this once a week but as of his last two evals... Well he scores to high on his evals to receive services.
So they came out today to have a look see. I told them over the phone before arriving that our main concerns right now were speech and behavioral issues. Well, they show up and they sit in the floor with Dawson and hes going through their little " challenges" one after another at lightning speed. Then I start talking about seizures and meds and the mood swings, and the fits of rage, and Dawson is just sitting there playing and being the SWEETEST thing you have ever seen. Oh he was flirting, giving hugs, giving kisses, jabbering up a storm, smiling, laughing, clapping for himself... Just being a big ham.
I know when those two ladies got in the car to leave ( after Dawson blew them sugar all the way to the door) they must have talked about how absolutely crazy I must be to even mention behavior problems with such a sweet little boy like Dawson........... Gimme a break!! Dawson your a little stinker is what you are!!
The miracle of the thing is this.... There is no telling how many hundreds of seizures Dawson has had over the last two years and yet his fine motor skills are fine, his gross motor skills are fine, his social skills are fine ( usually) cognitive skills are fine... Everything is still fine with the exception of speech. Absolutely mind blowing!! Allison and I were talking the other night about his terrible day at the doctors office and how he must have known before hand that we were going there.. I have said all along that he understands everything we say. To test this, I asked Dawson to go to the kitchen and bring me a bag of chips. He waltzed into the kitchen, I then hear him rummaging around in the pantry, after a few seconds, here he comes with a bag of Doritos... Smart as a whip this kid is!!
With that being said, they did get to see that he is definitely behind in his speech. They are going to start occupational therapy with him regularly as a precaution and we will be amping up the speech therapy full blast now. We only have 7 months before he turns three and then he will be dropped from the E.I program.
Through them, we are also going to meet with the school system and get him started in the special needs preschool. We are very excited about this and know that it will give Dawson a whole new perspective on things. We are so glad to finally be able to get him around some other kids ( because he really is very social) and to know he is in a safe environment with medical supervision gives me a great sense of peace about him going... This will be the first time since he has been born that he has ever been in somebody elses care other than an immediate family member... Exciting , but still frightening.
So pray for us as we get ready to transition into some new stuff in the upcoming months..
Praise to God who shows us daily just how awesome he really is!!
Jeff and Allison
The speech therapist who sees Dawson once a month ( she does this out of the goodness of her own heart just to make sure he is doing ok) mentioned to the E.I people that maybe Dawson needed to pick back up on his occupational therapy. At one time he was getting this once a week but as of his last two evals... Well he scores to high on his evals to receive services.
So they came out today to have a look see. I told them over the phone before arriving that our main concerns right now were speech and behavioral issues. Well, they show up and they sit in the floor with Dawson and hes going through their little " challenges" one after another at lightning speed. Then I start talking about seizures and meds and the mood swings, and the fits of rage, and Dawson is just sitting there playing and being the SWEETEST thing you have ever seen. Oh he was flirting, giving hugs, giving kisses, jabbering up a storm, smiling, laughing, clapping for himself... Just being a big ham.
I know when those two ladies got in the car to leave ( after Dawson blew them sugar all the way to the door) they must have talked about how absolutely crazy I must be to even mention behavior problems with such a sweet little boy like Dawson........... Gimme a break!! Dawson your a little stinker is what you are!!
The miracle of the thing is this.... There is no telling how many hundreds of seizures Dawson has had over the last two years and yet his fine motor skills are fine, his gross motor skills are fine, his social skills are fine ( usually) cognitive skills are fine... Everything is still fine with the exception of speech. Absolutely mind blowing!! Allison and I were talking the other night about his terrible day at the doctors office and how he must have known before hand that we were going there.. I have said all along that he understands everything we say. To test this, I asked Dawson to go to the kitchen and bring me a bag of chips. He waltzed into the kitchen, I then hear him rummaging around in the pantry, after a few seconds, here he comes with a bag of Doritos... Smart as a whip this kid is!!
With that being said, they did get to see that he is definitely behind in his speech. They are going to start occupational therapy with him regularly as a precaution and we will be amping up the speech therapy full blast now. We only have 7 months before he turns three and then he will be dropped from the E.I program.
Through them, we are also going to meet with the school system and get him started in the special needs preschool. We are very excited about this and know that it will give Dawson a whole new perspective on things. We are so glad to finally be able to get him around some other kids ( because he really is very social) and to know he is in a safe environment with medical supervision gives me a great sense of peace about him going... This will be the first time since he has been born that he has ever been in somebody elses care other than an immediate family member... Exciting , but still frightening.
So pray for us as we get ready to transition into some new stuff in the upcoming months..
Praise to God who shows us daily just how awesome he really is!!
Jeff and Allison
Tuesday, February 2, 2010
A not so good day
The day started pretty rough...
We knew the waters would be a little choppy with all the Dr visits and travelling and such. We were hoping that Dawson would be in a good mood and maybe the come apart he would inevitably have at the Doctors office wouldn't be all that bad.
So much for that plan A
Dawson woke up screaming and crying ( which isn't unusual) and we were waiting for the
" Ok, Im good and awake now and in a better mood; sorry Mom and Dad for being grumpy yet again" but that never came. He was all sideways and not doing well at all while we were all trying to get ready for the 1 1/2 hour drive.
We figured once in the car, with the Backyardigans DVD going, all would be well....
Wrong again!!
He pretty much screamed and cried all the way to Huntsville, screamed and cried and threw fits while in the waiting room ( oh how fun) and things didn't get any better when we went back to be hooked up to the EEG. Once hooked up he did manage to cry himself to sleep for about 10 minutes. So we got 10 min sleeping and 20 min screaming and crying. Not a good ratio.
Now on to the good stuff...
His EEG looks a lot like it did while at UAB a couple of months ago. While awake, it looks good but when he falls asleep........ CHAOS
We were supposed to find out about what all was said about his case that was recently conferenced and guess what?? It wasn't conferenced on the date we were told it was going to be. She is not sure when that will take place but will let us know..... Ok that is a little frustrating. A simple phone call to let us know that the conference didn't go down would have been pretty beneficial to me.
We were also supposed see the Speech Therapist for a full evaluation and she called in sick today. That's strike two!! But to be honest, the way Dawson was acting, I am so glad she wasn't there. There was no way that was going to be productive today.
We asked Dr Bebin " Ok, outside of his case being presented at conference, what is YOUR opinion about surgery based on what you know and have seen?" to sum up her words in a nutshell because there was a LONG conversation about this.. At his age, if your going to do brain surgery you gotta KNOW exactly what your dealing with and she just doesn't feel we are there yet. She gave example after example of some of her patients that were in uncertain waters as children but as they got older, and the testing became more sophisticated, and the dust settled a little bit, and the brain matured, it was then that a very clear picture emerged and surgery became a very viable and successful option. She thinks that at this point in time,there is just too much unknown and would not recommend him for surgery.
Then there was a long conversation about the Vagus Nerve Stimulator. http://en.wikipedia.org/wiki/Vagus_nerve_stimulation
She feels that his seizure type makes him a good candidate for this surgical procedure to gain better control of seizurs.
The plan for now?? We are going to continue on the med road we are on for right now. We are very very slowly going to continue to reduce Keppra. She feels that he is very sensitive to the side effects of this drug and is a major contributing factor to his behavior problems. BUT...
She also feels that Keppra is playing a considerate role in controlling those big seizures ( Grand mal and tonic) that we saw several months ago... So as much as we would love to kick this drug to the curb, we kinda never want to see another one of those seizures ever again. So were balancing a fine line between nasty drug side effects and controlling seizures.. BLAH!!
We also talked about starting Depakote. She is going to talk to a metabolic specialist tomorrow and get a second opinion. She said the reason for the caution is she doesn't want this drug to unmask some metabolic issue that hasn't been discovered..... Not real sure what shes talking about here but the possibility of us using the drug is down the road a piece.
The ride home wasn't quite as bad as the ride there but geeze, we were glad to be back home. I think he knew where we were going to begin with. He understands everything we say. He heard us talking about it this week and I think he just didn't want to go, and he sure didnt want to be there once we got there either.
So kinda mixed emotions about the day. Didn't get everything accomplished that we wanted to but hey when is that ever not the case right??
This evening little buddy has been in a better mood, managed a trip to the pet store and drive thru at Mcdonalds, and is contently snuggled up next to mommy. I'm going to go ask him if he minds if I cut in..
Thanks to all that were praying for us today. Feel free to weigh in on Vagus Nerve Stimulator, Depakote, or anything else for that matter.
Love to you all
Jeff and Allison
We knew the waters would be a little choppy with all the Dr visits and travelling and such. We were hoping that Dawson would be in a good mood and maybe the come apart he would inevitably have at the Doctors office wouldn't be all that bad.
So much for that plan A
Dawson woke up screaming and crying ( which isn't unusual) and we were waiting for the
" Ok, Im good and awake now and in a better mood; sorry Mom and Dad for being grumpy yet again" but that never came. He was all sideways and not doing well at all while we were all trying to get ready for the 1 1/2 hour drive.
We figured once in the car, with the Backyardigans DVD going, all would be well....
Wrong again!!
He pretty much screamed and cried all the way to Huntsville, screamed and cried and threw fits while in the waiting room ( oh how fun) and things didn't get any better when we went back to be hooked up to the EEG. Once hooked up he did manage to cry himself to sleep for about 10 minutes. So we got 10 min sleeping and 20 min screaming and crying. Not a good ratio.
Now on to the good stuff...
His EEG looks a lot like it did while at UAB a couple of months ago. While awake, it looks good but when he falls asleep........ CHAOS
We were supposed to find out about what all was said about his case that was recently conferenced and guess what?? It wasn't conferenced on the date we were told it was going to be. She is not sure when that will take place but will let us know..... Ok that is a little frustrating. A simple phone call to let us know that the conference didn't go down would have been pretty beneficial to me.
We were also supposed see the Speech Therapist for a full evaluation and she called in sick today. That's strike two!! But to be honest, the way Dawson was acting, I am so glad she wasn't there. There was no way that was going to be productive today.
We asked Dr Bebin " Ok, outside of his case being presented at conference, what is YOUR opinion about surgery based on what you know and have seen?" to sum up her words in a nutshell because there was a LONG conversation about this.. At his age, if your going to do brain surgery you gotta KNOW exactly what your dealing with and she just doesn't feel we are there yet. She gave example after example of some of her patients that were in uncertain waters as children but as they got older, and the testing became more sophisticated, and the dust settled a little bit, and the brain matured, it was then that a very clear picture emerged and surgery became a very viable and successful option. She thinks that at this point in time,there is just too much unknown and would not recommend him for surgery.
Then there was a long conversation about the Vagus Nerve Stimulator. http://en.wikipedia.org/wiki/Vagus_nerve_stimulation
She feels that his seizure type makes him a good candidate for this surgical procedure to gain better control of seizurs.
The plan for now?? We are going to continue on the med road we are on for right now. We are very very slowly going to continue to reduce Keppra. She feels that he is very sensitive to the side effects of this drug and is a major contributing factor to his behavior problems. BUT...
She also feels that Keppra is playing a considerate role in controlling those big seizures ( Grand mal and tonic) that we saw several months ago... So as much as we would love to kick this drug to the curb, we kinda never want to see another one of those seizures ever again. So were balancing a fine line between nasty drug side effects and controlling seizures.. BLAH!!
We also talked about starting Depakote. She is going to talk to a metabolic specialist tomorrow and get a second opinion. She said the reason for the caution is she doesn't want this drug to unmask some metabolic issue that hasn't been discovered..... Not real sure what shes talking about here but the possibility of us using the drug is down the road a piece.
The ride home wasn't quite as bad as the ride there but geeze, we were glad to be back home. I think he knew where we were going to begin with. He understands everything we say. He heard us talking about it this week and I think he just didn't want to go, and he sure didnt want to be there once we got there either.
So kinda mixed emotions about the day. Didn't get everything accomplished that we wanted to but hey when is that ever not the case right??
This evening little buddy has been in a better mood, managed a trip to the pet store and drive thru at Mcdonalds, and is contently snuggled up next to mommy. I'm going to go ask him if he minds if I cut in..
Thanks to all that were praying for us today. Feel free to weigh in on Vagus Nerve Stimulator, Depakote, or anything else for that matter.
Love to you all
Jeff and Allison
Subscribe to:
Posts (Atom)
