Today was another good day for Dawson today. I think he only had a few seizures after some naps but I haven't seen anything since this afternoon. We have started him on some fruits and so far he is really digging them ( as long as they don't have medicine on them) and he knows too. He will take a few "sample" bites before going at it full steam. He has tried applesauce and bananas with the bananas being the favorite so far.
He has mastered the art of sitting alone, unassisted and is sitting for longer periods as well. We are so proud to see him progressing so well. His speech is starting to develop too. some common sounds he is making now is DADA MAMA BABA. I don't think he associates me with DADA or Allison with MAMA but its neat to hear him repeat back sounds that we have been making for him.
We are STILL waiting on the results back for his test that he had a couple of weeks ago in Birmingham. We are hoping that in the next day or two we will find some answers for his seizures. Hopefully out of all of those test,we can find the most optimum way of treating him.
Thanks for taking the time to check in on him and for your prayers for our family.
We love you
Jeff and Allison
Monday, March 31, 2008
Sunday, March 30, 2008
Sunday March 30th Update
I cant believe March is almost gone! Where did it go?? The entire month is gone and I don't think I got anything accomplished.
Dawson's seizures have been much better the past couple of days. He only had a few yesterday and hes down for his second nap right now and so far none today ( keeping fingers crossed)
He has been in a great mood the past couple of days as well. We have been laying him down in our bed on his stomach and gently bouncing him and within a couple of minutes hes out. What a great thing to see him sleeping better. I remember not so long ago the horrible fighting it took to get him to sleep during the dreary ACTH days. I am so glad that part of his treatment behind us.
He still doesn't sleep very long periods but at least he is getting to sleep a little easier.
We have increased his Topamax dosage again as of last night. Maybe just maybe the increase will put the proper amount of medication in his body to stop his seizures.
On the left side of this page I have added a link that I want everybody to check out. Her name is Reagan and she has the same thing Dawson has. I am challenging our prayer warriors, those who have prayed so diligently for Dawson, to read her story, and when you pray for Dawson, please pray for her too. We have been drawn to her for a reason and I know that if the same people who have lifted Dawson up for healing, will do the same for Reagan, I know this family will see the same miracles that we have seen. Please read her story, pray for her, and then leave the family some supportive comments. They have had a much tougher time than we have had.Allison and I would appreciate it if you would do that. After all, isn't this what God's love is all about?? I have been shown first hand how powerful prayer is. We will be praying with you as you pray for her.
Thank you, and we love you all
Jeff and Allison
Dawson's seizures have been much better the past couple of days. He only had a few yesterday and hes down for his second nap right now and so far none today ( keeping fingers crossed)
He has been in a great mood the past couple of days as well. We have been laying him down in our bed on his stomach and gently bouncing him and within a couple of minutes hes out. What a great thing to see him sleeping better. I remember not so long ago the horrible fighting it took to get him to sleep during the dreary ACTH days. I am so glad that part of his treatment behind us.
He still doesn't sleep very long periods but at least he is getting to sleep a little easier.
We have increased his Topamax dosage again as of last night. Maybe just maybe the increase will put the proper amount of medication in his body to stop his seizures.
On the left side of this page I have added a link that I want everybody to check out. Her name is Reagan and she has the same thing Dawson has. I am challenging our prayer warriors, those who have prayed so diligently for Dawson, to read her story, and when you pray for Dawson, please pray for her too. We have been drawn to her for a reason and I know that if the same people who have lifted Dawson up for healing, will do the same for Reagan, I know this family will see the same miracles that we have seen. Please read her story, pray for her, and then leave the family some supportive comments. They have had a much tougher time than we have had.Allison and I would appreciate it if you would do that. After all, isn't this what God's love is all about?? I have been shown first hand how powerful prayer is. We will be praying with you as you pray for her.
Thank you, and we love you all
Jeff and Allison
Friday, March 28, 2008
Friday March 28
Today has been a good day for Big D so far. He has only had one cluster of 5 seizures and that was this morning. He is currently napping now so hopefully he will wake without any. He has been in a delightfully good mood. He also slept better last night--yeah!!
I found a really great compounding pharmacist who made a little suspension for the B6 for Dawson. We will give it a try tonight and see how well it goes down. He was such a helpful man. Come to find out, we attend the same church. Jeff says that I would recognize him if I saw him. Jeff took our tablets up to him to use, so he gave it to us free of charge---how nice!!!
We will be increasing his Topamax again tomorrow. He is currently on 30 mg every morning and evening, we will go up to 30 mg in the morning and 45 mg in the evening. It seems as though Dawson gets a little groggy and sluggish for a few days after we go up in dosage. I hate that!! We are to call the Neuro again on Monday and update them on his progress, if any. We will probably be having to make another trip soon. It will be 2 weeks Monday since we have been, so they will probably want us to make an appointment.
Thanks again to all for keeping Dawson in your prayers. It means so much to us to have so many people praying for our little guy.
We love you all!!
I found a really great compounding pharmacist who made a little suspension for the B6 for Dawson. We will give it a try tonight and see how well it goes down. He was such a helpful man. Come to find out, we attend the same church. Jeff says that I would recognize him if I saw him. Jeff took our tablets up to him to use, so he gave it to us free of charge---how nice!!!
We will be increasing his Topamax again tomorrow. He is currently on 30 mg every morning and evening, we will go up to 30 mg in the morning and 45 mg in the evening. It seems as though Dawson gets a little groggy and sluggish for a few days after we go up in dosage. I hate that!! We are to call the Neuro again on Monday and update them on his progress, if any. We will probably be having to make another trip soon. It will be 2 weeks Monday since we have been, so they will probably want us to make an appointment.
Thanks again to all for keeping Dawson in your prayers. It means so much to us to have so many people praying for our little guy.
We love you all!!
Thursday, March 27, 2008
Thursday March 27th update
I hope everybody had as nice weather as we had today. Man was it a beautiful day.
We thought we were going to have another good seizure day today. He had two small clusters after two of his naps this morning and then after his evening nap he had 28 seizures. It has been quite a few days since he has had that many. I wish I knew why he had so many this evening. I swear none of this makes sense. Just as soon as we look like we are making progress something like this happens to knock us back down again. Sometimes I wonder how much longer we will have to endure this horrible thing.
Me and Allison, and Dawson, and Madison, and Zoe ( golden retriever) all went out for a walk this evening. We went down to the lake to walk and let Zoe swim for a while. Everybody enjoyed it and it was good to walk off a little stress. Now that it looks like Spring is going to stay around I hope to be able to start doing more and more of that.
Madison has been sick since yesterday. Snotty nose, and running a fever. We hate to see her sick and its pretty easy to tell when she is. When she wants to lay down on her own...... Shes sick!!. Bless her you can look into her eyes and tell she does not feel well. So tonight we are pumping Keppra, Topamax, and B-6 into Dawson, and Motrin and Tylenol into Madison. Our kitchen counter looks like a pharmacy and we are starting to feel more like Doctors than parents.
Pray with us for a better seizure day tomorrow.
Jeff and Allison
We thought we were going to have another good seizure day today. He had two small clusters after two of his naps this morning and then after his evening nap he had 28 seizures. It has been quite a few days since he has had that many. I wish I knew why he had so many this evening. I swear none of this makes sense. Just as soon as we look like we are making progress something like this happens to knock us back down again. Sometimes I wonder how much longer we will have to endure this horrible thing.
Me and Allison, and Dawson, and Madison, and Zoe ( golden retriever) all went out for a walk this evening. We went down to the lake to walk and let Zoe swim for a while. Everybody enjoyed it and it was good to walk off a little stress. Now that it looks like Spring is going to stay around I hope to be able to start doing more and more of that.
Madison has been sick since yesterday. Snotty nose, and running a fever. We hate to see her sick and its pretty easy to tell when she is. When she wants to lay down on her own...... Shes sick!!. Bless her you can look into her eyes and tell she does not feel well. So tonight we are pumping Keppra, Topamax, and B-6 into Dawson, and Motrin and Tylenol into Madison. Our kitchen counter looks like a pharmacy and we are starting to feel more like Doctors than parents.
Pray with us for a better seizure day tomorrow.
Jeff and Allison
Wednesday, March 26, 2008
Wednesday March 26th update
Busy day today. We went this afternoon for his physical therapy evaluation. The lady that was doing his eval had no idea that he has I.S. We were sort of confused because of the nature of the questions she was asking. Finally I stopped her and asked if she was aware that he suffers from seizures. Of course she had no idea. So upon finding that out it opened the door for a whole line of different questions.
We went from there to see his pediatrician. This is the doctor who made the original I.S diagnosis and got the ball rolling on his treatment as well as hooking us up with this wonderful Neurologist that we have been seeing. He had not seen Dawson since his diagnosis and needless to say he was pleasantly surprised with what he saw today. I dont think he expected him to be doing so well. We are very grateful to this Doctor. I have read a lot of stories of parents who spent a lot of time trying to convince their Pediatrician that something was wrong with their child to no avail. Thankfully this Doctor took us seriously when we knew something wrong.
Seizures have been about the same today as they have the last few days. He is not having them after every nap but he is still having them and that of course that just will not do. We will not rest until they have completely stopped.
We are still very hopeful that the current meds he is on will be enough to stop them. We hate the thought of having to start something new but if thats what it takes, thats what we will do.
Thanks again for all of your support and prayers. We love you
Jeff and Allison
Tuesday, March 25, 2008
Tuesday March 25th update
So far so good as of this evening. He has had only one cluster after a nap that had 5 seizures in it. Up and down we go, where we stop nobody knows.
I want to say that we're starting to make progress but I have to remain grounded in the fact that tomorrow he is likely to have just as many as he was having 4 weeks ago. At least we are having days that are better than others when it comes to seizure activity. A few weeks ago we would have killed for a day like today so that seems like good progress right??
We remain cautiously optimistic.
We are still struggling with giving him the dosages of Topamax and B-6. I have been mixing the Topamax with coolwhip and putting it on my finger and giving it to him that way with pretty good success. The coolwhip helps with the B-6 too but its still a pretty good struggle to get it in his mouth. We will be posting some new video of him within the next day or two so be sure to check back so you all can see how much he has grown. We are so proud of him!!!!
We love you
Jeff and Allison
I want to say that we're starting to make progress but I have to remain grounded in the fact that tomorrow he is likely to have just as many as he was having 4 weeks ago. At least we are having days that are better than others when it comes to seizure activity. A few weeks ago we would have killed for a day like today so that seems like good progress right??
We remain cautiously optimistic.
We are still struggling with giving him the dosages of Topamax and B-6. I have been mixing the Topamax with coolwhip and putting it on my finger and giving it to him that way with pretty good success. The coolwhip helps with the B-6 too but its still a pretty good struggle to get it in his mouth. We will be posting some new video of him within the next day or two so be sure to check back so you all can see how much he has grown. We are so proud of him!!!!
We love you
Jeff and Allison
Monday, March 24, 2008
Monday March 24th Update
Dawson has had a pretty good day today. His seizures are still down in numbers. He had two or three clusters but only 2-5 per cluster. Much better than it has been. He still continues to look tired a lot and there seems something different about him to me. I mean he still continues to do well and is progressing..
I don't know how to explain it. Its just something different. I am pretty sure it has to do with his meds and how they affect the brain. On one hand, we are glad to see the seizures are better( although they are still here) but on the other hand, we hate to see him look like hes drugged up which in the only way I can describe it.
His sleep has not been good today and was pretty fussy for Grand mom and Grandad today which I know can make for a long day.
We spoke with his neuro's nurse ( because you can never talk to a neurologist directly without an appointment) and they have decided to leave him on the dose we are on of the Topamax. I am just not sure if I like this stuff or not. Between the Topamax and the B-6 he has learned to fight off anything that is coming at him with a spoon. His introduction to solid foods has been little white BB's, and B-6 ( which is the most bitter thing you can imagine putting in your mouth.)
Poor little guy, he will probably never trust us with a spoon EVER
We are asking that everybody pray that he will better tolerate the Medications he is currently on and that his seizures will continue to decrease at the same time. Prayer is so powerful and we have all seen what happens when we come together and pray. We have already seen some awesome things because of the prayers of many and we ask that we never become complacent, but to continue to pray diligently for Dawson. Our friends ( old and new) and family have just been awesome and we thank you for everything you have done.
We love you
Jeff and Allison
I don't know how to explain it. Its just something different. I am pretty sure it has to do with his meds and how they affect the brain. On one hand, we are glad to see the seizures are better( although they are still here) but on the other hand, we hate to see him look like hes drugged up which in the only way I can describe it.
His sleep has not been good today and was pretty fussy for Grand mom and Grandad today which I know can make for a long day.
We spoke with his neuro's nurse ( because you can never talk to a neurologist directly without an appointment) and they have decided to leave him on the dose we are on of the Topamax. I am just not sure if I like this stuff or not. Between the Topamax and the B-6 he has learned to fight off anything that is coming at him with a spoon. His introduction to solid foods has been little white BB's, and B-6 ( which is the most bitter thing you can imagine putting in your mouth.)
Poor little guy, he will probably never trust us with a spoon EVER
We are asking that everybody pray that he will better tolerate the Medications he is currently on and that his seizures will continue to decrease at the same time. Prayer is so powerful and we have all seen what happens when we come together and pray. We have already seen some awesome things because of the prayers of many and we ask that we never become complacent, but to continue to pray diligently for Dawson. Our friends ( old and new) and family have just been awesome and we thank you for everything you have done.
We love you
Jeff and Allison
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