Good day for Dawson today. We have titrated back on his Keppra as of this morning and so far he has only had two clusters of seizures as opposed to having seizures after waking from every nap. It is too early to tell if the change in dosage is what has made the difference. We are currently at .5ml which is almost the smallest amount of Keppra you can give. This is also the same dose he was on when he went 7 days without any seizures at all.
We are going to go all weekend at this dosage and then call we are to call his Neurologist and let her know what the results are. If at that time he is still having seizures, we are going to start the Topamax again.
I always dread changing his dosage on Keppra because it really seems to effect his mood for about 3 days until he gets adjusted. So far so good today as he has been in a really good mood.
He had been rubbing his eyes and really sneezy for that past few days so we decided to give him a small dose of Benadryl at bedtime. Well...... we found out the next morning that there is a list of about 1000 drugs that you are not to give children with epilepsy. Benadryl is one of them. He had some seizures during the night that night ( which he never does) and we were both just sick that we had given him some.
That list of drugs not to give him would have been VERY beneficial to have oh say....
3 MONTHS AGO.
Anyway.. We are supposed to have some beautiful weather here in North Alabama this weekend and we are so looking forward to some warm sunshine around the Wade household. We are planning on taking advantage of a warmer weekend and hope to get the kids outdoors for a while.
We love you guys and thanks for all the prayers!!
Jeff and Allison
BTW be on the lookout for some new pictures and videos to be posted this weekend.
Friday, February 29, 2008
Thursday, February 28, 2008
Thursday Feb 28th Update
Lots of Big news tonight. first of all Dawson is now sitting up all by himself!! What a big boy. Allison and I were at Wal Mart tonight ( GRRRRRRRR) and we had left the kids at Granny's and Grampy's so that the trip would be a little easier, then we get a call from Granny and get the news that he was sitting all by himself. We are very excited. We will get some video of him sitting and post it in the next day or so.
We also found out today that our Birmingham trip will be March 10th. It will be an overnight deal and he will be having multiple test done. VEEG, draw spinal fluid, blood work and a PET scan. The PET scan is the one were dreading most as he has to be put to sleep to do that.
Kudos to Allison for getting on the phone today and seeing that somebody give her a date when we will be there. Squeaky wheel gets the grease right?? I am good at griping about things and she is good at making things happen. Perfect match right.
He was in a much better mood today. Slept a little better too. Still about the same on the seizures. We would give anything to see these seizures leave his little body alone. But we praise God for his progress.
Madison said for me to tell everybody " Thank you!!" And we thank you too.
Love you all!
Jeff and Allison
We also found out today that our Birmingham trip will be March 10th. It will be an overnight deal and he will be having multiple test done. VEEG, draw spinal fluid, blood work and a PET scan. The PET scan is the one were dreading most as he has to be put to sleep to do that.
Kudos to Allison for getting on the phone today and seeing that somebody give her a date when we will be there. Squeaky wheel gets the grease right?? I am good at griping about things and she is good at making things happen. Perfect match right.
He was in a much better mood today. Slept a little better too. Still about the same on the seizures. We would give anything to see these seizures leave his little body alone. But we praise God for his progress.
Madison said for me to tell everybody " Thank you!!" And we thank you too.
Love you all!
Jeff and Allison
Wednesday, February 27, 2008
Wednesday February 27th Update
Hello everyone. Typical seizure day again for Dawson. No large numbers of seizures but he has had a few after most naps. He has been a little fussier than usual. I credit that to changing the dose of his Keppra. It seems that when we change doses, or start something new, it effects his mood.
He has not slept well today ( which is probably another reason he is fussy) but hopefully he will settle down here and get some sleep tonight.
Still no word yet on when we go to UAB for the next round of testing...... UGGGG I hate waiting.
It's possible that this testing will give us some answers as to why he is having seizures which means its possible that that information will tell us what meds he needs to stop them. But I am finding it IMPOSSIBLE to have to wait on other people to arrange and coordinate everything that needs to be done.
Anyway he is still doing great. He has really been practicing his " BA BA BA" sounds along with pursing his little lips together and spitting... Yes spitting. Its a little messy but a lot of fun to watch.
Thanks again for taking the time to read up on whats going on with him and for taking part in our journey. We love you
Jeff and Allison
He has not slept well today ( which is probably another reason he is fussy) but hopefully he will settle down here and get some sleep tonight.
Still no word yet on when we go to UAB for the next round of testing...... UGGGG I hate waiting.
It's possible that this testing will give us some answers as to why he is having seizures which means its possible that that information will tell us what meds he needs to stop them. But I am finding it IMPOSSIBLE to have to wait on other people to arrange and coordinate everything that needs to be done.
Anyway he is still doing great. He has really been practicing his " BA BA BA" sounds along with pursing his little lips together and spitting... Yes spitting. Its a little messy but a lot of fun to watch.
Thanks again for taking the time to read up on whats going on with him and for taking part in our journey. We love you
Jeff and Allison
Tuesday, February 26, 2008
Tuesday February 26th update
We just had a visit from on of the Evaluators with Early Intervention. She did a lot of tests and asked a lot of questions. Her main job is to evaluate Dawson and see where he is developmentally and what services he might need.
As most of you know, if you do any research on Infantile Spasms, you will repeatedly see the words " Catastrophic Illness" " Mental Retardation" and " Severe Developmental Delays" associated with this disease. Problem is...
Nobody told Dawson. It appears that he passed all the test with flying colors. He is no different than any other 5 month old baby. ISN'T GOD GOOD!!!!!
We are so thankful that he continues to develope normally. Our Faith, and our God, and Your prayers make all that possible. THANK YOU
Please continue to pray that we will find an answer for his seizures and that he will continue to develope normally.
Also for those of you who know Madison. She was tickled to death to have sombody ( the evaluator) she could show her room and all her stuff to.
As most of you know, if you do any research on Infantile Spasms, you will repeatedly see the words " Catastrophic Illness" " Mental Retardation" and " Severe Developmental Delays" associated with this disease. Problem is...
Nobody told Dawson. It appears that he passed all the test with flying colors. He is no different than any other 5 month old baby. ISN'T GOD GOOD!!!!!
We are so thankful that he continues to develope normally. Our Faith, and our God, and Your prayers make all that possible. THANK YOU
Please continue to pray that we will find an answer for his seizures and that he will continue to develope normally.
Also for those of you who know Madison. She was tickled to death to have sombody ( the evaluator) she could show her room and all her stuff to.
Monday, February 25, 2008
Monday February 25th Update
We are back from our Neurologist visit. Not much happened during the visit other than us waiting an unusual long tome to see the Doctor. We were hoping to at least get a date locked in for our Birmingham trip but that didn't happen. Soooooooo..... we are going to dose down on the Keppra for right now and see what that does and possibly re-introduce the Topomax later next week.
Seizures continue to be a little better. He did have one large cluster on the way to Huntsville today ( 21) but other than that the past three days we have seen a large reduction in the number of seizures per cluster.
Right now we both kind of feel like were running on a treadmill. Were doing something.... but not really going anywhere. We are still prayerful and hopeful we will soon see these seizures disappear.
We love you all!!
Jeff and Allison
Seizures continue to be a little better. He did have one large cluster on the way to Huntsville today ( 21) but other than that the past three days we have seen a large reduction in the number of seizures per cluster.
Right now we both kind of feel like were running on a treadmill. Were doing something.... but not really going anywhere. We are still prayerful and hopeful we will soon see these seizures disappear.
We love you all!!
Jeff and Allison
Sunday, February 24, 2008
Sunday night February 24th Update
A much better day today concerning seizure activity. He did have some but they were very low in numbers. He didnt have his usual 20 something clusters. Not sure what the difference was today but it was nice none the less.
We have a visit with his Neuro tomorrow in Huntsville. We hope to get more details on his next trip to Birmingham and I am sure we will be starting a new drug. Sleep has been Ok today. He did take a couple of longer naps but is somewhat fussy this evening.
We have noticed that the vast majority of his baby babbling has been making Vowel sounds with hardly any consonant sounds. So tonight I got right over him and started making "B" sounds by saying " BA BA BA BA". About thirty minutes later during dinner Dawson started chiming in with his rendition of " BA BA BA BA" It was great!! I think tomorrow we will start on " DA DA" sounds. Then after that's mastered maybe we can work on "MA MA" sounds. HA HA
He has also found his toes. When hes sitting he sees them and really makes a good effort to get a hold of them.
The fussing is starting to get a little louder so I'll wrap this one up. Thanks for checking in and thanks for all the great comments!!! It is so wonderful to hear from all of our family, friends, and new I.S. friends. It is a blessing to know all of you!
We love you all.
Jeff and Allison
We have a visit with his Neuro tomorrow in Huntsville. We hope to get more details on his next trip to Birmingham and I am sure we will be starting a new drug. Sleep has been Ok today. He did take a couple of longer naps but is somewhat fussy this evening.
We have noticed that the vast majority of his baby babbling has been making Vowel sounds with hardly any consonant sounds. So tonight I got right over him and started making "B" sounds by saying " BA BA BA BA". About thirty minutes later during dinner Dawson started chiming in with his rendition of " BA BA BA BA" It was great!! I think tomorrow we will start on " DA DA" sounds. Then after that's mastered maybe we can work on "MA MA" sounds. HA HA
He has also found his toes. When hes sitting he sees them and really makes a good effort to get a hold of them.
The fussing is starting to get a little louder so I'll wrap this one up. Thanks for checking in and thanks for all the great comments!!! It is so wonderful to hear from all of our family, friends, and new I.S. friends. It is a blessing to know all of you!
We love you all.
Jeff and Allison
Saturday, February 23, 2008
Saturday Morning Feb 23
Good Morning!!! It is a great morning because Dawson slept 6 hours last night!!!! He went to sleep a little before 8:oo pm and sort of woke to eat a little after 2:oo am. He may have slept longer, but he was stirring and I needed a little relief if you know what I mean. We gave him some ibuprofen again and he slept on his tummy. I really think that it is the tummy sleeping part that has helped him to sleep better. Tonight we may try it without any medication.
He also rolled over from his back to his stomach this morning. He was laying slightly propped on a pillow when he rolled to his side and then made it over to his tummy!!!!! God is good. We are blessed that he is able to have these little milestones. What a special little boy!!
I would like to take a moment and say "Happy Birthday!!!!" to my mom, Pam, and my cousin, Nate, who have had birthdays this week. Happy Birthday and we love you!!!!
Thanks again to everyone for your support and prayers. We love you all!!
Allison & Jeff
He also rolled over from his back to his stomach this morning. He was laying slightly propped on a pillow when he rolled to his side and then made it over to his tummy!!!!! God is good. We are blessed that he is able to have these little milestones. What a special little boy!!
I would like to take a moment and say "Happy Birthday!!!!" to my mom, Pam, and my cousin, Nate, who have had birthdays this week. Happy Birthday and we love you!!!!
Thanks again to everyone for your support and prayers. We love you all!!
Allison & Jeff
Friday, February 22, 2008
Friday February 22nd Update
Good evening everybody. We just ended our meeting with the Early Intervention program. I have to tell you, I am impressed already with this. They have top people who address any developmental issues, It is absolutely free of charge, and they come to your house to do it. Does it get any better??
We are so used to either having to travel to Huntsville or Birmingham to seek services, so this is a real treat for us. We will receive a call sometime soon and a first visit will be set up. During that visit a specialist will spend an hour with him, and will evaluate him to see if he has any developmental issues at all. Even if he has none, we are still able to use the program because of his diagnosis. So somebody will come once a week ( PT,OT, Speech) and do treatment on him. Once again what a great program.
We will be going back to Huntsville this coming Monday. There, we will get another game plan together as far as when we will be going to Birmingham and what drug we will try next. UGGGGGGG!!!!
Last night we decided to give him some Tylenol before bedtime and he slept much better than he has the past few nights. Also we got him to sleep on his stomach. I think that helped him a little too.
We have Ashlyn and Katelin this weekend and the house sure gets a lot smaller when you have 4 kids around. Madison LOVES it when they come for the weekend ( And so do we )
We hope everybody has a great weekend, thank you so much for taking time to see what is going on with our little man. We love you and pray that God will pour blessings on you for being so supportive of us during this time.
Jeff and Allison
We are so used to either having to travel to Huntsville or Birmingham to seek services, so this is a real treat for us. We will receive a call sometime soon and a first visit will be set up. During that visit a specialist will spend an hour with him, and will evaluate him to see if he has any developmental issues at all. Even if he has none, we are still able to use the program because of his diagnosis. So somebody will come once a week ( PT,OT, Speech) and do treatment on him. Once again what a great program.
We will be going back to Huntsville this coming Monday. There, we will get another game plan together as far as when we will be going to Birmingham and what drug we will try next. UGGGGGGG!!!!
Last night we decided to give him some Tylenol before bedtime and he slept much better than he has the past few nights. Also we got him to sleep on his stomach. I think that helped him a little too.
We have Ashlyn and Katelin this weekend and the house sure gets a lot smaller when you have 4 kids around. Madison LOVES it when they come for the weekend ( And so do we )
We hope everybody has a great weekend, thank you so much for taking time to see what is going on with our little man. We love you and pray that God will pour blessings on you for being so supportive of us during this time.
Jeff and Allison
Thursday, February 21, 2008
Thursday February 21st Update
Hello everbody. Today has been a pretty good day for Dawson. He has only had one cluster of seizures today. Hopefully it will stay that way!!
Last night was a Horrible night. Shortly after going to sleep he woke up just screaming. It was like he was in a lot of pain. We would hold him and get him settled but as soon as you moved or heaven forbid try to lay him down he would just start screaming again. This went on for what seemed like forever but finally he settled and stayed asleep for a little while.
As we start to hear from some other parents whos children have I.S., that seems to be one common denomonator that everybody has. None of us are sleeping anymore because our kids cant sleep. Sleeping all night is nothing more than just a fantasy now.
We did hear from the Early Intervention people today and sombody will be coming out tomorrow to do all the paperwork. After that sombody else will be coming out to do an evaluation to see what ( if any) are his developmental delays. I honestly hope and pray we don't need their services.
Also just to let our family and friends know some of the videos posted here have also been put on Youtube. When you go to Youtube type in " Dawson Infantile Spasms" in the search bar and you will see the videos we have posted so far. Most of the videos will be happy baby videos and we will put some of Madison as well. I know its been a while since a lot of the family has seen her and this is a great way to catch up.
I also find it important to remind everybody who reads this that Dawson is doing so well because of the hundreds of people who have lifted him up to the Lord in prayer. Keep on praying because God is answering.
We love you and thank you for taking the time to check in on him.
Jeff and Allison
Last night was a Horrible night. Shortly after going to sleep he woke up just screaming. It was like he was in a lot of pain. We would hold him and get him settled but as soon as you moved or heaven forbid try to lay him down he would just start screaming again. This went on for what seemed like forever but finally he settled and stayed asleep for a little while.
As we start to hear from some other parents whos children have I.S., that seems to be one common denomonator that everybody has. None of us are sleeping anymore because our kids cant sleep. Sleeping all night is nothing more than just a fantasy now.
We did hear from the Early Intervention people today and sombody will be coming out tomorrow to do all the paperwork. After that sombody else will be coming out to do an evaluation to see what ( if any) are his developmental delays. I honestly hope and pray we don't need their services.
Also just to let our family and friends know some of the videos posted here have also been put on Youtube. When you go to Youtube type in " Dawson Infantile Spasms" in the search bar and you will see the videos we have posted so far. Most of the videos will be happy baby videos and we will put some of Madison as well. I know its been a while since a lot of the family has seen her and this is a great way to catch up.
I also find it important to remind everybody who reads this that Dawson is doing so well because of the hundreds of people who have lifted him up to the Lord in prayer. Keep on praying because God is answering.
We love you and thank you for taking the time to check in on him.
Jeff and Allison
Wednesday, February 20, 2008
Wednesday February 20th Update
Good evening from the Wade's. He had two episodes of seizures today. 23 seizures in one cluster and 18 in the other, so no change yet since coming off the Vigabatrin. Looks like we will be heading to Birmingham to do some " Phase II " testing. I was thinking today that I wish I had a nickel for everytime I have typed or said the word " Seizure" in the past three months. I would have quite a stack of money.
We are so blessed despite the seizures. He is sitting in his high chair right now playing with his toys. Every now and then he decides to give one a sling. We are still mastering the art of sitting up and hopefully by the time he turns 6 months he will be sitting unassisted.
We have yet to hear from the people at Early Intervention and so we will be making some phone calls to find out what the deal is with that.
Thanks for taking the time to check in on Dawson, and we hope to see everybody back here tomorrow.
Jeff and Allison
We are so blessed despite the seizures. He is sitting in his high chair right now playing with his toys. Every now and then he decides to give one a sling. We are still mastering the art of sitting up and hopefully by the time he turns 6 months he will be sitting unassisted.
We have yet to hear from the people at Early Intervention and so we will be making some phone calls to find out what the deal is with that.
Thanks for taking the time to check in on Dawson, and we hope to see everybody back here tomorrow.
Jeff and Allison
Tuesday, February 19, 2008
Tuesday February 19th Video update
Hey this is some video of Dawson and Grampy having some fun making noise. No seizures in this video YEAH!!!! The video is kinda dark ( sorry about that) but its funny to listen to anyway
He is completly off the Vigabatrin now but somehow managed to have a couple of clusters of seizures. 12 in one and 24 in the other. We have been thinking the Vigabatrin was causing more seizures and I guess it will take a little time to get it completly out of his system. Please continue to pray with us that these seizures will stop. We just cant wait for the day that he can go at least 24 hours without any.
It's hard as parents to sit and watch all this unfold and know there is nothing we can do. Ive prayed many times that it would be me instead of him but our faith tells us there is a reason for this and we WILL finish the race. Your prayers and support help us Everyday. More than you could possible know. Thank you and we love you all!!
Jeff and Allison
Monday, February 18, 2008
Monday February 18th Update
Hi everybody. Thanks for checking in. Dawson is doing really well. He has had a few clusters of seizures as usual today. Allison called his Neurologist and asked if we could go ahead and take him off the Vigabatrin. Thankfully she said yes. I know that Vigabatrin has worked very well for alot of kids, but for us all it seemed to do was make his seizures worse. Or at least make him have a higher number of seizures per cluster.
So hopefully we will see a change for the better in his seizure activity. Other than that he has been his usual happy self. Mom said he had a fussy morning, which is unuasul,but he had a good afternoon and has also had a good evening tonight.
He is almost sitting up on his own now. He can most of the way balance himself when he is leaning front to back. If he ever starts moving to one side he loses it pretty quickly. He is getting the hang of it though and its fun to watch him progress and do all these new things.
Thanks for the prayers. We love and appreciate you all!!
Jeff and Allison
So hopefully we will see a change for the better in his seizure activity. Other than that he has been his usual happy self. Mom said he had a fussy morning, which is unuasul,but he had a good afternoon and has also had a good evening tonight.
He is almost sitting up on his own now. He can most of the way balance himself when he is leaning front to back. If he ever starts moving to one side he loses it pretty quickly. He is getting the hang of it though and its fun to watch him progress and do all these new things.
Thanks for the prayers. We love and appreciate you all!!
Jeff and Allison
Sunday, February 17, 2008
Recent Seizure Video
Hi Everybody. This video was taken last week. If you have already seen the 2 previous videos posted you will see a noticable difference in the seizures. He has fought hard and come a long way during the past three months. The medications have worked well but as you all know we are still trying to get control of these seizures. He has had two naps so far today, and has not had any seizures after waking from either of them. VERY UNUASUAL. Everyday we hope and pray that today will be the day the seizures stop for good. Maybe today will be that day.
The seizures in this video are at 1 sec, 25 sec, and 37 seconds.
We will keep you posted as always, and we hope you guys enjoy the videos.
Jeff and Allison
Saturday, February 16, 2008
Dawson Original Infantile Spasms video
Hello everybody. This is the very first video taken of Dawson and his seizures. He was 2 months old at the time. You will see two very distinct spasms. This video along with the EEG showing Hypsarethmia activity in the brain were what his doctors used to diagnose his condition.
The next video coming out tomorrow will be of some spasms from a couple of days ago. You will see a huge difference between the seizure type in this video and the next ones coming tomorrow.
He is doing pretty good by the way. He still continues to have clusters of seizurs, but has been his usual happy baby self today. Ive never seen someone smile so much!! He is a such a blessing.
Thanks for taking the time to check in on him. BTW sorry for the lines in the video. Its a long story
We love you
Jeff and Allison
Friday, February 15, 2008
Seizure video
When you first start the video you will see that Dawson has just had a " tonic" seizure. What you are looking at is the aftermath of the seizure. He is just coming out of it and looks very dazed and confused. The confusion lasts for a few seconds and then he has another seizure. The second seizure is a true " infantile spasm" It only last a second or two but none the less is equally disturbing to watch. This video was taken when he was 2 months old. Over the coures of the next couple days we are going to be posting some videos of his seizure activity. Tomorrow we will post the actual video that was used by his Doctors to diagnose his seizure type. Then after that we will be posting what his seizures look like as of today. BIG difference!! We hope the videos will give you a " clinical" look into what were dealing with. It makes alot more sense to see it as to read about it. We love you all and thanks for your thoughts and prayers.
Jeff and Allison
Thursday, February 14, 2008
Valentines Day Update
Happy Valentines Day everybody.
We saw Dawson's Neurologist today in Huntsville and let me start by saying she was very very very impressed with his progress. Even though he is continuing to have seizures, his progress developmentally, continues to amaze her. We feel blessed to have been led to such a wonderful Doctor. She spent the entire visit watching him and studying him. We are glad she not only is paying attention to the seizures, but his development as well.
This is what we learned today. There is a small window of opportunity to get the correct dosage in each child in order for the meds to work their best. Too much can cause harm ( as we have seen with the Vigabatrin) and too little will do nothing. Under the pretense that he is getting too much we are cutting his dosage of Vigabatrin in half. Also if you will remember, when we first got on the Keppra, we were dosing him at 1.5 ml. During that first week on that dosage he was seizure free. As we increased the Keppra his seizures increased. So we are going back to the original dosage of Keppra as well to see what that will do for him.
We will stay with this plan for a week,and then we are to call the Neuro to discuss with her what is happening. If at that time he is continuing to have seizures we will be heading down to Childrens Hospital in Birmingham to do what she calls " phase two testing"
This will consist of taking spinal fluid from him as well as blood. They will then use the fluid to take a very indepth lool at enzymes, DNA, ect, ect. It is way too complicated for me to explain what all they will be looking at, but she feels that it will give us a more clearer picture of why this is happening, and it will also help detail what meds he needs to stop the seizures.
Also she is setting up " Early Intervention" to contact us. This program will evaluate him and help with any developmental delays he might have in the future. To my knowledge this is standard procedure for any kid who has suffered from I.S. or other seizure disorder. The only thing Dr. Bebin saw today that bothered her was the fact that he doesn't use his left hand as much as he does his right hand. He can use his left hand, and does when he wants to, but alot of times he keeps his left fist clenched and the range of motion in his left arm is not near as good as it is in his right. Early Intervention will use physical and occupational therapy to address this we are told.
During our office visit today he had a small cluster of seizures and while he was having them he was smiling at the nurse the entire time!!! What a special little man!!
Also, I promised to post some video footage of the type of seizures he was having in the very beginning. I could not get mine to work but Dad had some footage that he gave us and we will post that tomorrow. Then we will post some of the video of seizures he is having now so you can see how much he has progressed.
Thanks for checking in and keep praying
Jeff and Allison
We saw Dawson's Neurologist today in Huntsville and let me start by saying she was very very very impressed with his progress. Even though he is continuing to have seizures, his progress developmentally, continues to amaze her. We feel blessed to have been led to such a wonderful Doctor. She spent the entire visit watching him and studying him. We are glad she not only is paying attention to the seizures, but his development as well.
This is what we learned today. There is a small window of opportunity to get the correct dosage in each child in order for the meds to work their best. Too much can cause harm ( as we have seen with the Vigabatrin) and too little will do nothing. Under the pretense that he is getting too much we are cutting his dosage of Vigabatrin in half. Also if you will remember, when we first got on the Keppra, we were dosing him at 1.5 ml. During that first week on that dosage he was seizure free. As we increased the Keppra his seizures increased. So we are going back to the original dosage of Keppra as well to see what that will do for him.
We will stay with this plan for a week,and then we are to call the Neuro to discuss with her what is happening. If at that time he is continuing to have seizures we will be heading down to Childrens Hospital in Birmingham to do what she calls " phase two testing"
This will consist of taking spinal fluid from him as well as blood. They will then use the fluid to take a very indepth lool at enzymes, DNA, ect, ect. It is way too complicated for me to explain what all they will be looking at, but she feels that it will give us a more clearer picture of why this is happening, and it will also help detail what meds he needs to stop the seizures.
Also she is setting up " Early Intervention" to contact us. This program will evaluate him and help with any developmental delays he might have in the future. To my knowledge this is standard procedure for any kid who has suffered from I.S. or other seizure disorder. The only thing Dr. Bebin saw today that bothered her was the fact that he doesn't use his left hand as much as he does his right hand. He can use his left hand, and does when he wants to, but alot of times he keeps his left fist clenched and the range of motion in his left arm is not near as good as it is in his right. Early Intervention will use physical and occupational therapy to address this we are told.
During our office visit today he had a small cluster of seizures and while he was having them he was smiling at the nurse the entire time!!! What a special little man!!
Also, I promised to post some video footage of the type of seizures he was having in the very beginning. I could not get mine to work but Dad had some footage that he gave us and we will post that tomorrow. Then we will post some of the video of seizures he is having now so you can see how much he has progressed.
Thanks for checking in and keep praying
Jeff and Allison
Wednesday, February 13, 2008
Wednesday February 13th
Hello everybody. Dawson is doing good today. He has had a few clusters with some higher than normal seizures. He had 25 seizures in one episode and 22 in the other. He is waking from a nap as i am typing and Allison is telling me he is having some now..
Tonights update has to be quick as the kids need baths and we hope to get to bed early.
Say a prayer for us tomorrow while we are at the Neurologist
We love you
Jeff aned Allison
Tonights update has to be quick as the kids need baths and we hope to get to bed early.
Say a prayer for us tomorrow while we are at the Neurologist
We love you
Jeff aned Allison
Tuesday, February 12, 2008
Tuesday Feb 12th
Hello Everybody!! Dawson has had a pretty good day. Two small clusters of about a dozen seizures each. During the second set of spasms, he did about 4 of them a little differently than we are use to seeing. He did like two quick jerks in a row, then second one almost in a backwards motion. Of course by the time I got back with a camera to record it, he stoped doing them and just continued with his usual spasms.
He is still in really great humor and sleeping better at night. He sleeps okay during the day, he really sleeps better next to someone if possible. We go Thursday to his Neuro and I am very nervous about this visit. We have so many questions to ask and I am worried she will want to send us to Birmingham for further testing. I would rather not put him through a bunch of testing if we can avoid it. He has already been through so much.
We ask that everybody continue to pray for him and for us. Sometimes I find it hard to stay positive, especially after Jeff gets me reading all kinds of things on the internet. Sometimes maybe ignorance is bliss. There are so many other stories out there, most of which talk about the child having some sort of developmental delays. It makes me sad to think that it could happen to Dawson. We have been Blessed that he is doing great so far. Everyday it seems that he is doing something new. He said "D" Sat morning, a new sound for him. He is such a joy!!!
Thanks for checking in on Dawson. We love you all and God Bless!!!!
Allison & Jeff
He is still in really great humor and sleeping better at night. He sleeps okay during the day, he really sleeps better next to someone if possible. We go Thursday to his Neuro and I am very nervous about this visit. We have so many questions to ask and I am worried she will want to send us to Birmingham for further testing. I would rather not put him through a bunch of testing if we can avoid it. He has already been through so much.
We ask that everybody continue to pray for him and for us. Sometimes I find it hard to stay positive, especially after Jeff gets me reading all kinds of things on the internet. Sometimes maybe ignorance is bliss. There are so many other stories out there, most of which talk about the child having some sort of developmental delays. It makes me sad to think that it could happen to Dawson. We have been Blessed that he is doing great so far. Everyday it seems that he is doing something new. He said "D" Sat morning, a new sound for him. He is such a joy!!!
Thanks for checking in on Dawson. We love you all and God Bless!!!!
Allison & Jeff
Monday, February 11, 2008
Monday night February 11th
Hey everybody. We hope you guys enjoyed the video of Dawson. We will definately put more of those up more often.
He is doing good today. The past two days have been very few seizures. He did have some today but its still been a couple of days since hes had a large cluster ( 20 or more.) Hopefully we have seen the last of those but just like everything else its a wait and see what happens game.
Thanks for checking on him and keep on praying for him
We love you
Jeff and Allison
He is doing good today. The past two days have been very few seizures. He did have some today but its still been a couple of days since hes had a large cluster ( 20 or more.) Hopefully we have seen the last of those but just like everything else its a wait and see what happens game.
Thanks for checking on him and keep on praying for him
We love you
Jeff and Allison
Sunday, February 10, 2008
Some Video of Dawson tonight
Hey everybody. We are still working on his seizure video that we have from a couple of months ago but we wanted to go ahead and post this because there are so many people who read this blog who are " out of towners" and have not had the opportunity to see Dawson. This video was taken tonight at Granny and Grampy's house. He has just turned 5 months old and you can see why we have nicknamed him " Big-D "
He has only had a few seizures today and has yet to have his big number that he usually has during the evening. Maybe we get to skip that today. God bless and we hope you enjoy this little snipett of him.
By the way, the first little bit of the video looks dark but we eventually cut on some lights so after a few seconds you will be able to see better.
We love you
Jeff and Allison
Sunday February 10th update
So far Dawson is having a really great day. He had a few seizures upon waking this morning and thats all we have seen so far today. He slept good again last night and I think now that he is sleeping better, it must have something to do with the fact that there has been no change in his meds over the last week. As a matter of fact this may have been the longest he has been since this started that there hasn't been a change in meds or at least change in dosage.
I think when we see his Neuro Thurdsay that will all change and we will be trying something new to stop the seizures.
Today was the first day we all got to go to church as a family since he was on ACTH injections. We had purposely been keeping him away from large crowds because the ACTH lowers the immune system even up to 6 weeks after the last shot. We have Ashlyn and Katelin with us this weekend and it was great for all six of us to be able to go worship as a family again. I will say it was a bit of a handle trying to get us and 4 kids to the 8:15 service but we made it!!
Still working on the video so you will have to check back and see if I was able to get that going.
Thanks for checking in and we love you
Jeff and Allison
I think when we see his Neuro Thurdsay that will all change and we will be trying something new to stop the seizures.
Today was the first day we all got to go to church as a family since he was on ACTH injections. We had purposely been keeping him away from large crowds because the ACTH lowers the immune system even up to 6 weeks after the last shot. We have Ashlyn and Katelin with us this weekend and it was great for all six of us to be able to go worship as a family again. I will say it was a bit of a handle trying to get us and 4 kids to the 8:15 service but we made it!!
Still working on the video so you will have to check back and see if I was able to get that going.
Thanks for checking in and we love you
Jeff and Allison
Saturday, February 9, 2008
Saturday Update
Hey everybody. I know I said I hoped to have some video posted but due to technical difficulties I am unable to do that tonight. I will work on it and maybe we can get it up and running tomorrow.
He had a cluster of 28 a while ago but other than that its been a good day
Jeff and Allison
He had a cluster of 28 a while ago but other than that its been a good day
Jeff and Allison
Saturday February 9th Update
Thanks for checking in on Dawson. He is still doing really well. Yesterday was a typical seizure day for him. A couple of seizures here and there and yesterday evening one large cluster of about 28 spasms.
We are anxious to get to Huntsville Thursday and see what we are going to be doing next.
Sleep is MUCH better now a days. All of us are sleeping better at night and the past few mornings its been nice to wake up feeling like we actually had some sleep.
We have had some request for updated pictures and we will post some soon. I am also going to post a video of the seizures he was having when this all started. They are much harder seizures than the ones he is having now and its not easy to watch but for educational purposes we want those who are interested to be able to see what we are dealing with.
Hopefully the video will be posted by tonight so check back soon. Thanks again for taking time to see what is going on with him. It means the world to us and your support during this has been awesome. We are thankful everyday that God has placed every one of you in our lives to help us deal with this.
We love you
Jeff and Allison
We are anxious to get to Huntsville Thursday and see what we are going to be doing next.
Sleep is MUCH better now a days. All of us are sleeping better at night and the past few mornings its been nice to wake up feeling like we actually had some sleep.
We have had some request for updated pictures and we will post some soon. I am also going to post a video of the seizures he was having when this all started. They are much harder seizures than the ones he is having now and its not easy to watch but for educational purposes we want those who are interested to be able to see what we are dealing with.
Hopefully the video will be posted by tonight so check back soon. Thanks again for taking time to see what is going on with him. It means the world to us and your support during this has been awesome. We are thankful everyday that God has placed every one of you in our lives to help us deal with this.
We love you
Jeff and Allison
Friday, February 8, 2008
Friday February 8th Update
Just got off the phone with the neurologist and she wants us to continue with what we are doing until we see her on Thursday. I hate holding patterns
His sleep was better again last night. He woke several times but went back to sleep very easily.
Last set of seizures was yesterday evening and I can't remember if we had mentioned in a previous blog,but he has learned how to put his lips together and blow spit.... Allison calls it blowing raspberries. He woke up the other morning doing it, and thats how he greets the day now. Its funny to watch ( from a distance )
No word yet on a reschedule date for making the video. We really felt called to do that so I have no doubt that it will materialize.
Thanks for taking time to check on Dawson and we love you
Jeff and Allison
His sleep was better again last night. He woke several times but went back to sleep very easily.
Last set of seizures was yesterday evening and I can't remember if we had mentioned in a previous blog,but he has learned how to put his lips together and blow spit.... Allison calls it blowing raspberries. He woke up the other morning doing it, and thats how he greets the day now. Its funny to watch ( from a distance )
No word yet on a reschedule date for making the video. We really felt called to do that so I have no doubt that it will materialize.
Thanks for taking time to check on Dawson and we love you
Jeff and Allison
Thursday, February 7, 2008
Thursday Feb 7
Hey everybody, sorry for such a late update today but it has been a CRAZY day. Work, kids, errands, dog in heat, chores to do, ect, ect.
He had a good day today. The only seizures we have seen so far was this evening. We were at the place I hate more than any place in this world ( Wal*Mart) and he woke from a nap and had somewhere around 20 I think. It is hard to count seizures and steer a buggy at the same time,so I had to give an estimated guess.
Last night and again this morning while at Moms house he had a sudden outburst of screaming and crying. It wasn't a fussy cry but more of "Hey I am in immense pain here" cry. We don't know if he is having some tummy troubles or maybe he is starting to cut some teeth. At any rate it took a while to calm him but once he got calm he was fine again.
He slept better last night ( or at least we did) and it felt good to have a decent stretch of sleep for once. I plan on talking to his neurologist sometime tomorrow about the Vigabatrin, him still having seizures, and what we will do next.
Thanks for checking in, and for your prayers!!!!!!
We love you
Jeff and Allison
He had a good day today. The only seizures we have seen so far was this evening. We were at the place I hate more than any place in this world ( Wal*Mart) and he woke from a nap and had somewhere around 20 I think. It is hard to count seizures and steer a buggy at the same time,so I had to give an estimated guess.
Last night and again this morning while at Moms house he had a sudden outburst of screaming and crying. It wasn't a fussy cry but more of "Hey I am in immense pain here" cry. We don't know if he is having some tummy troubles or maybe he is starting to cut some teeth. At any rate it took a while to calm him but once he got calm he was fine again.
He slept better last night ( or at least we did) and it felt good to have a decent stretch of sleep for once. I plan on talking to his neurologist sometime tomorrow about the Vigabatrin, him still having seizures, and what we will do next.
Thanks for checking in, and for your prayers!!!!!!
We love you
Jeff and Allison
Wednesday, February 6, 2008
Wednesday February 6th
We talked to Dr Bebin yesterday and she said to go back to his original dosage of Vigabatrin. So he is back to one half tablet in the morning, and one half tablet in the evening. We will have to wait and see what happens.
Yesterday afternoon he had over 30 seizures in one episode and a few of them were pretty hard. Last night and this morning he had some but they were few in number,and were back to the very mild ones we are used to seeing.
Hopefully cutting back on the dosage will bring down the seizures. But now theres the question ..... Whats next?? Where do we go from here?? What new drug will we be trying next??
Our next appointment isn't until the 14th but I have no intentions of waiting that long to get answers.
Other than the seizures, he is doing really well. He is getting better at rolling front to back and is SOOOO happy. He is such a blessing.
Thank you and please continue to lift him up in prayer to the one who heals. We have placed him in God's hands and theres no better place to be than that.
We love you all
Jeff and Allison
Yesterday afternoon he had over 30 seizures in one episode and a few of them were pretty hard. Last night and this morning he had some but they were few in number,and were back to the very mild ones we are used to seeing.
Hopefully cutting back on the dosage will bring down the seizures. But now theres the question ..... Whats next?? Where do we go from here?? What new drug will we be trying next??
Our next appointment isn't until the 14th but I have no intentions of waiting that long to get answers.
Other than the seizures, he is doing really well. He is getting better at rolling front to back and is SOOOO happy. He is such a blessing.
Thank you and please continue to lift him up in prayer to the one who heals. We have placed him in God's hands and theres no better place to be than that.
We love you all
Jeff and Allison
Tuesday, February 5, 2008
Tuesday Feb 5th Update
We got a call this morning as we were getting ready to go and the people who were doing the filming and interviewing were stuck in bad weather in Chicago.......
I can't even begin to express my disappointment.
They are supposed to reschedule sometime soon so we are still hoepful that it will happen.
Since increasing the dosage of Viagabatrin, we have seen a definate Increase of seizeure activity. I have called in this information to his Neurologist and we will probably go back to his original starting dosage for the time being. Who knows where we go after that. He is having seizures after almost every nap and they are averaging 25- 35 seizeures per episode.
We will let you know what the neurologist says about his increase in seizures after we hear from her.
Jeff and Allison
I can't even begin to express my disappointment.
They are supposed to reschedule sometime soon so we are still hoepful that it will happen.
Since increasing the dosage of Viagabatrin, we have seen a definate Increase of seizeure activity. I have called in this information to his Neurologist and we will probably go back to his original starting dosage for the time being. Who knows where we go after that. He is having seizures after almost every nap and they are averaging 25- 35 seizeures per episode.
We will let you know what the neurologist says about his increase in seizures after we hear from her.
Jeff and Allison
Monday, February 4, 2008
Monday January 4th Update
There has been a slight increase of seizure activity over the last 24 hours. He seemed to have a few after most of his naps yesterday. I wish there was some type of pattern to them but they seem to be so random.
We are gearing up for out Birmingham trip tomorrow. We are so excited about this opportunity and hope everything goes well.
Dawson was really practicing his rolling over yesterday. He can roll from stomach to back pretty easily now which is encouraging for us to see.
Say a prayer for us tomorrow as we travel and thank you for taking time to look in on Dawson.
Jeff and Allison
We are gearing up for out Birmingham trip tomorrow. We are so excited about this opportunity and hope everything goes well.
Dawson was really practicing his rolling over yesterday. He can roll from stomach to back pretty easily now which is encouraging for us to see.
Say a prayer for us tomorrow as we travel and thank you for taking time to look in on Dawson.
Jeff and Allison
Sunday, February 3, 2008
Sunday February 3rd update
Thanks for checking in on Dawson. He is still doing good. We did have some seizure activity yesterday evening and some this morning as well. They are still very mild and he does not seem bothered by them at all.
The sleep battle wages on as he can only manage to sleep 2 hours at the most during one stretch.
Allison has caught the " Rhino Virus" as Madison is now calling it, and the lack of sleep plus having this cold has been tough on her.
We appreciate your thoughts and prayers and we love you all very much
Jeff and Allison
The sleep battle wages on as he can only manage to sleep 2 hours at the most during one stretch.
Allison has caught the " Rhino Virus" as Madison is now calling it, and the lack of sleep plus having this cold has been tough on her.
We appreciate your thoughts and prayers and we love you all very much
Jeff and Allison
Saturday, February 2, 2008
Saturday Feb 2nd update
Happy Saturday everybody.
I am happy to report this morning that seizure activity is on the decline. His last seizure was yesterday afternoon and it was only 3 small spasms. Nothing yesterday morning, nothing yesterday evening, and nothing so far this morning. We live for moments like this around here now a days. His dosage of Vigabatrin increased last night and that might have something to do with it. He now gets half a tablet (crushed and mixed with cereal) in the morning, and one whole tablet in the evening. Next week he will get one whole tablet both morning and evening.
We have no way of knowing if and when his next seizure will come but we celebrate ALL victories.
We heard from his neurologist and we are to be in Birmingham this coming Tuesday to shoot the training video that we have been talking about. This is a huge opportunity for us and we are very excited about doing it. The video will be used for two things..
1. We will be talking about our experiences with I.S. and how it has effected out lives. This video will be sent to congress to help raise awareness for the disease. More research needs to be done and we pray that this will aid in doing that.
2. The filming and interviews will also enable them to put a training video on the internet so that parents who find themselves where we were 2 months ago will have a tool to help them understand and cope with the news they have just received. It will be used for educational purposes and will be available to download.
I can't tell you how great a feeling it is for us to be able to help other families whose children suffer from this. I love the fact that through tragedy we are able to see doors open, and have the opportunity to do things that we would never have been able to do had this not happened.
Say a prayer for us Tuesday that God will use us as tools to affect the lives of others.
BTW the spell checking device that I use is not functional at the moment so if you see spelling mistakes please overlook them. I am the worlds worst speller and I feel very exposed not having something there to correct my mistakes. HA
We love you and thanks for your thoughts and prayers.
Jeff and Allison
I am happy to report this morning that seizure activity is on the decline. His last seizure was yesterday afternoon and it was only 3 small spasms. Nothing yesterday morning, nothing yesterday evening, and nothing so far this morning. We live for moments like this around here now a days. His dosage of Vigabatrin increased last night and that might have something to do with it. He now gets half a tablet (crushed and mixed with cereal) in the morning, and one whole tablet in the evening. Next week he will get one whole tablet both morning and evening.
We have no way of knowing if and when his next seizure will come but we celebrate ALL victories.
We heard from his neurologist and we are to be in Birmingham this coming Tuesday to shoot the training video that we have been talking about. This is a huge opportunity for us and we are very excited about doing it. The video will be used for two things..
1. We will be talking about our experiences with I.S. and how it has effected out lives. This video will be sent to congress to help raise awareness for the disease. More research needs to be done and we pray that this will aid in doing that.
2. The filming and interviews will also enable them to put a training video on the internet so that parents who find themselves where we were 2 months ago will have a tool to help them understand and cope with the news they have just received. It will be used for educational purposes and will be available to download.
I can't tell you how great a feeling it is for us to be able to help other families whose children suffer from this. I love the fact that through tragedy we are able to see doors open, and have the opportunity to do things that we would never have been able to do had this not happened.
Say a prayer for us Tuesday that God will use us as tools to affect the lives of others.
BTW the spell checking device that I use is not functional at the moment so if you see spelling mistakes please overlook them. I am the worlds worst speller and I feel very exposed not having something there to correct my mistakes. HA
We love you and thanks for your thoughts and prayers.
Jeff and Allison
Friday, February 1, 2008
Friday February 1st update
Hello. Dawson is doing really well. Still a few seizures here and there but they seem to be most concentrated following his afternoon nap. If he has any other than that ,they are small and low in numbers ( 3-5 spasms). It is certainly alot better than it was.
I was reminded today of how far he has actually come. When we look back at what was happening to him 2 months ago compared to today.. Well it is nothing short of a miracle. I can't help but feel that he will continue to get better and better with each passing day.
God is certainly good!!!
Tonight we will increase his dosage of the Vigabatrin. We hope that this will take care of the rest of the seizures.
He is really getting good with his hands lately as well. He is interested in whatever is in his hands, and he is really studying the objects hes holding. It is a blessing to see him continue to progress despite still having seizure activity.
I'll say it again.. God is certainly good!!!
We love you all
Jeff and Allison
I was reminded today of how far he has actually come. When we look back at what was happening to him 2 months ago compared to today.. Well it is nothing short of a miracle. I can't help but feel that he will continue to get better and better with each passing day.
God is certainly good!!!
Tonight we will increase his dosage of the Vigabatrin. We hope that this will take care of the rest of the seizures.
He is really getting good with his hands lately as well. He is interested in whatever is in his hands, and he is really studying the objects hes holding. It is a blessing to see him continue to progress despite still having seizure activity.
I'll say it again.. God is certainly good!!!
We love you all
Jeff and Allison
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