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
Sunday, March 23, 2008
Easter Sunday
Happy Easter everybody. We have had a fabulous weekend so far. Yesterday our church had an Easter egg hunt for all the kids that we went to and it was wonderful. The weather coudn't have been better and all the kids had a great time. Next year Dawson will be in on the egg grabbing fiasco. This year was watch my three sisters and see how its done. There was a petting zoo there as well that the girls really enjoyed that.
The Easter bunny made his way over to our house sometime last night and left all kinds of goodies for the kids. Those of you who know Madison, you know her usual rate of speed is around 100 mph all day long. Well........ because of the extra gas ( sugar) its been around 180 mph. Way to go you stupid Easter Bunny!!!
Dawson went all day yesterday with no seizures and so far today he has only had one cluster that had 5 seizures in it and nothing else. This has been the best weekend we have had ( seizure wise) since this thing started. Maybe, just maybe, we are starting to gain the upper hand on seizure control.
Over the last couple of days, Since upping the dose of Topamax, Allison and I have noticed at times he seems to be a little more out of it than usual. He is still responsive but just a little slower to respond. I see a little different look in his eyes and I am wondering if its the Meds or the combination of all three. Has anybody else had that effect while on Topamax??
Oh and yes we changed the look of the blog a little. Everybody needs a change every now and again and the mountain lake reminds me of how badly I want to be able fish with Dawson some day soon. I know we will get our chance!!
Once again Happy Easter to all our friends and family. We love you all so much!!
Jeff and Allison
The Easter bunny made his way over to our house sometime last night and left all kinds of goodies for the kids. Those of you who know Madison, you know her usual rate of speed is around 100 mph all day long. Well........ because of the extra gas ( sugar) its been around 180 mph. Way to go you stupid Easter Bunny!!!
Dawson went all day yesterday with no seizures and so far today he has only had one cluster that had 5 seizures in it and nothing else. This has been the best weekend we have had ( seizure wise) since this thing started. Maybe, just maybe, we are starting to gain the upper hand on seizure control.
Over the last couple of days, Since upping the dose of Topamax, Allison and I have noticed at times he seems to be a little more out of it than usual. He is still responsive but just a little slower to respond. I see a little different look in his eyes and I am wondering if its the Meds or the combination of all three. Has anybody else had that effect while on Topamax??
Oh and yes we changed the look of the blog a little. Everybody needs a change every now and again and the mountain lake reminds me of how badly I want to be able fish with Dawson some day soon. I know we will get our chance!!
Once again Happy Easter to all our friends and family. We love you all so much!!
Jeff and Allison
Saturday, March 22, 2008
Saturday Night and no seizures
Just wanted to give a quick update. No seizures today!! we are so excited about that. We increased his dosage of Topamax this morning and maybe that has something to do with it. The journey of a million miles starts with one step. Hopefully this is our first one to becoming seizure free.
Will update again tomorrow afternoon. Hopefully the news will be the same
We love you all
Jeff and Allison
Will update again tomorrow afternoon. Hopefully the news will be the same
We love you all
Jeff and Allison
Saturday March 22nd update
We thought we were going to get another 24 hours with no seizures but yesterday afternoon he woke from a nap and had a couple. Then yesterday evening he had 16 in one cluster.
None so far this morning though so maybe today will be our day.
A couple of days ago one of the ladys from Early Intervention came back out to visit us. Even though technically Dawson has no developmental delays right now, we still qualify for the services based solely on his diagnosis of Infantile Spasms. We talked about what we wanted to work on with him and so next week we will begin physical/occupational therapy's.
We managed to survive the second try of getting the kids pictures done without any major meltdowns. The only close one was myself as I generally do not do well in those types of situations. I try hard, but I just wasn't designed for the long waiting, the trying to get a 3 year old and a 6 month old to both smile at the same time, and the extraordinary time it takes to pick out the ones you want to buy. We survived and got some great shots of the kids though. Allison said I was never allowed back at Sears Portrait ever again. HAHAHAHA
We would like to wish everyone a HAPPY EASTER from all of us. What an awesome time of year this is. We serve a God who is risen and alive. Take a close look outside today. The proof of that is all around us. We love you all and thanks for checking in on Dawson.
Jeff and Allison
None so far this morning though so maybe today will be our day.
A couple of days ago one of the ladys from Early Intervention came back out to visit us. Even though technically Dawson has no developmental delays right now, we still qualify for the services based solely on his diagnosis of Infantile Spasms. We talked about what we wanted to work on with him and so next week we will begin physical/occupational therapy's.
We managed to survive the second try of getting the kids pictures done without any major meltdowns. The only close one was myself as I generally do not do well in those types of situations. I try hard, but I just wasn't designed for the long waiting, the trying to get a 3 year old and a 6 month old to both smile at the same time, and the extraordinary time it takes to pick out the ones you want to buy. We survived and got some great shots of the kids though. Allison said I was never allowed back at Sears Portrait ever again. HAHAHAHA
We would like to wish everyone a HAPPY EASTER from all of us. What an awesome time of year this is. We serve a God who is risen and alive. Take a close look outside today. The proof of that is all around us. We love you all and thanks for checking in on Dawson.
Jeff and Allison
Thursday, March 20, 2008
Thursday March 20th Update
No changes in his seizures over the past two days. Still at about 4 clusters per day and seizures per cluster range anywhere from 4 to 23. Each time you try something new, or change doses, there is a little part of you that hopes that this will be the one. This is gonna fix it. And then each time it doesn't work you cant help but feel some disappointment. I was hoping the B-6 was going to work for us. You know, The range of emotions we have felt due to this over the past 4 months is Incredible.
Although we feel different emotions just about everyday, The one thing that we refuse to sway on is our faith. Grounded and firm, God is still working through Dawson to change our lives, and the lives of those around us and I couldn't be more proud. There is nothing more in this world that we want than for these seizures to go away. Personally, I am sick of watching my son have seizures, But I know that God isn't finished working yet and we are dedicated to seeing this through to its end. There is no way we could ever go through this if it weren't for our faith and the promises of God. Your prayers still give us the peace we need, and God is dishing out a heaping portion of grace that gets us through every day. Please continue to pray for us as we seek out God's will through this.
We tried to take Madison and Dawson to have some pictures done Wednesday evening. We really wanted some 6 month pictures of Dawson, and we were going to get some of Madison, and Madison and Dawson together. The only problem.... Dawson was having none of it. He was tired and sleepy and was not going to cooperate AT ALL!!
Madison stepped up her game and took some awesome pictures but because Dawson's didnt turn out we decided to come back and try again later. Round 2 will start tomorrow afternoon. Say a prayer for us.
I have just been informed that its bath time so ill have to go but thanks again for all the prayers.
We love you
Jeff and Allison
Although we feel different emotions just about everyday, The one thing that we refuse to sway on is our faith. Grounded and firm, God is still working through Dawson to change our lives, and the lives of those around us and I couldn't be more proud. There is nothing more in this world that we want than for these seizures to go away. Personally, I am sick of watching my son have seizures, But I know that God isn't finished working yet and we are dedicated to seeing this through to its end. There is no way we could ever go through this if it weren't for our faith and the promises of God. Your prayers still give us the peace we need, and God is dishing out a heaping portion of grace that gets us through every day. Please continue to pray for us as we seek out God's will through this.
We tried to take Madison and Dawson to have some pictures done Wednesday evening. We really wanted some 6 month pictures of Dawson, and we were going to get some of Madison, and Madison and Dawson together. The only problem.... Dawson was having none of it. He was tired and sleepy and was not going to cooperate AT ALL!!
Madison stepped up her game and took some awesome pictures but because Dawson's didnt turn out we decided to come back and try again later. Round 2 will start tomorrow afternoon. Say a prayer for us.
I have just been informed that its bath time so ill have to go but thanks again for all the prayers.
We love you
Jeff and Allison
Wednesday, March 19, 2008
Pictures from UAB Hospital
This is what you get when you spend 24 hours in a teeny tiny hospital room. By the way this picture is an original and nobody has the right to reproduce this photo without expressed written consent from its owner. ( which will never happen) Hey if you cant laugh at yourself........ Im serious about the reproduction of this pictureI would hate to have to sue. LOL
young kimoswabbie
Dawson getting EEG
mom and Dawson
Tuesday, March 18, 2008
Tuesday March 18th Update
Dawson's seizures were a little worse today than they have been. He had his usual 3 clusters but one of the clusters had twenty something seizures in it. YUK!!!!!!!!
He has still been in a great mood and sleep continues to be so so. Some days better than others but all in all we are pretty lucky. We are still looking into compounding his B-6 to make it a little easier to take although the pharmacist that we talked to today said whatever you compound it with will just make it taste bitter. He made it seem like there wasn't much a point in trying to do it. anybody reading this with info on compounding we would appreciate any added info.
Dawson's second bottom tooth had cut through. two teeth!! my how he is growing. Hopefully I can get some pics from his hospital put up tomorrow. Today has just been to hectic to try.
We love you all and please continue to pray for Dawson.
Jeff and Allison
He has still been in a great mood and sleep continues to be so so. Some days better than others but all in all we are pretty lucky. We are still looking into compounding his B-6 to make it a little easier to take although the pharmacist that we talked to today said whatever you compound it with will just make it taste bitter. He made it seem like there wasn't much a point in trying to do it. anybody reading this with info on compounding we would appreciate any added info.
Dawson's second bottom tooth had cut through. two teeth!! my how he is growing. Hopefully I can get some pics from his hospital put up tomorrow. Today has just been to hectic to try.
We love you all and please continue to pray for Dawson.
Jeff and Allison
Monday, March 17, 2008
Back from Bristol March 17th
Well I am finally back home from Bristol where I went to see the race Saturday and Sunday. Now I know that most people who are reading this could care less about NASCAR or racing but I will bet that some of your husbands do!! Go ahead and ask them if they would want to go to Bristol Tennessee......... It was a great weekend but I am sooooo glad to be back home. I missed Allison, Madison and Dawson way too much.
The visit with the Neurologist went very well. She continues to be very impressed with how well he is doing developmentally. He is into EVERYTHING now. Whatever he sees he wants to pick up. And if it's in arms reach he will go to whatever lengths necessary to get a hold of it. We dont have any results back yet from the spinal tap or blood work but she said he PET scan came back perfectly normal.
We are going up on the Topamax, staying the same on the Keppra, and continuing with the B-6 therapy for at least another week and see what happens. We are anxious now to get the results from his latest testing and as usual it's hard to just sit and wait.
Seizures have been about the same today unfortunately. We wish like crazy that these things would just GO AWAY. I know this blog seems like a huge ramble and I apologize. I usually try to be more organized in my thoughts but I am EXHAUSTED from the weekend and can't wait to sleep tonight. Thanks for your prayers and for taking the time to check on Dawson
We love you
Jeff and Allison
BTW we got pictures back from his last trip in the Hospital and We will post those tomorrow
The visit with the Neurologist went very well. She continues to be very impressed with how well he is doing developmentally. He is into EVERYTHING now. Whatever he sees he wants to pick up. And if it's in arms reach he will go to whatever lengths necessary to get a hold of it. We dont have any results back yet from the spinal tap or blood work but she said he PET scan came back perfectly normal.
We are going up on the Topamax, staying the same on the Keppra, and continuing with the B-6 therapy for at least another week and see what happens. We are anxious now to get the results from his latest testing and as usual it's hard to just sit and wait.
Seizures have been about the same today unfortunately. We wish like crazy that these things would just GO AWAY. I know this blog seems like a huge ramble and I apologize. I usually try to be more organized in my thoughts but I am EXHAUSTED from the weekend and can't wait to sleep tonight. Thanks for your prayers and for taking the time to check on Dawson
We love you
Jeff and Allison
BTW we got pictures back from his last trip in the Hospital and We will post those tomorrow
Sunday, March 16, 2008
Sunday March 16th
Well, I thought we were going to have a seizure free day, but after his late afternoon nap he had a cluster of about 15 spasms. Oh well, maybe tomorrow. That was all he has had today though. He has had another really good day, been in a great mood. Fighting sleep a little bit more than usual today, but nothing major.
He is cutting his first tooth now. I found it last night as we were getting ready for bed. He seems to be tolerating it well. Madison did really well with cutting teeth, so maybe he will do as well too.
I have been told by several people in the last few days that Dawson looks just like his daddy. I know Jeff is real proud of that. We can't wait for him to get home. They are going to wait until the morning to leave, so we will have to wait until tomorrow afternoon to see him. We miss him SOOOOOOOOOO much!!!!!
Dawson tolerated his medicine a little better tonight. We mix his B6 with some cereal and put it in a syringe and squirt it in his mouth. That is what we did with the vigabatrin and it worked out pretty well. Dawson is "helping" me right now. It is really great to see him reaching for things and trying to get into everything like a baby should. He is doing so great and I am so thankful for that. We give all credit to the Lord.
I hope everyone has had a great weekend and are ready for the week ahead. We will be going to the Neuro tomorrow, so maybe we will have some new info.
Thanks for checking in, we love you!
Saturday, March 15, 2008
Sat March 15th
Hello Everybody! We have had a good day today. Dawson has had a cluster of about 10 when he woke up this morning and then just one spasm after a nap. The rest of the day has been spasm free. He has been in a really good mood today as well.
Jeff is in Bristol watching the race this weekend. We really miss him and can't wait for him to return home.
I didn't get around to calling about compounding the B6 vitamin into a form that is easier for Dawson to take. He is still gagging but getting it down none the less. I can probably find something out Monday, maybe his Neuro will have an idea too.
Thanks for checking in and please continue to lift Dawson up in prayer. We appreciate all the support from our friends and family.
We love you
Allison & Jeff
Friday, March 14, 2008
Friday March 14th
This will have to be short and sweet because I am all alone with 2 kids and one of them always need something. Dawson had a high number of seizures today. We are very disappointed. He has had a really good day otherwise. He was in a great mood and napped pretty good today.
He is having a hard time taking his B6 and keeping it down. I guess it must be really bitter. I am going to call around to some compounding pharmacies and see if there is anything we can do so that he can take it more easily.
Well, Dawson is ready to go to bed so I must go. Thanks for checking in on our special little boy.
We love you
Allison & Jeff
He is having a hard time taking his B6 and keeping it down. I guess it must be really bitter. I am going to call around to some compounding pharmacies and see if there is anything we can do so that he can take it more easily.
Well, Dawson is ready to go to bed so I must go. Thanks for checking in on our special little boy.
We love you
Allison & Jeff
Thursday, March 13, 2008
Thursday March 13 seizures are back
Yep after almost two days of no seizures, and us actually thinking we were getting somewhere, they returned today right on schedule. He had about 12-15 after his naps. We try not to feel disappointed, but that's almost impossible. Why did they go for two days and return?? UGGGGGGGGGG!!!
We are dealing with it and will trudge forward with hopes that tomorrow they will disappear again.
A new game has started. Put all the toys on the highchair table top and he Purposely picks each one up ( one at a time mind you) and drops them on the floor until they are all gone. Then waits for somebody to give them all back again and the game starts over. Being the father of 4 kids, this is my 4th time watching a baby learn this game. But this one has a little more special meaning to it. Its neat to watch him do all this " normal" stuff that most parents take for granted.
I would also like to say a big congratulations to my younger brother Brian whos 2nd son was born today. David Bryce Wade was born today and we got to go visit him this evening. What a beautiful baby boy!!
Pray with us as we fight to get these seizures under control. He is currently on Keppra, Topamax, and B-6 therapy. We hope that soon these will stop his seizures.
We love you and thank you for checking in on Dawson
Jeff and Allison
We are dealing with it and will trudge forward with hopes that tomorrow they will disappear again.
A new game has started. Put all the toys on the highchair table top and he Purposely picks each one up ( one at a time mind you) and drops them on the floor until they are all gone. Then waits for somebody to give them all back again and the game starts over. Being the father of 4 kids, this is my 4th time watching a baby learn this game. But this one has a little more special meaning to it. Its neat to watch him do all this " normal" stuff that most parents take for granted.
I would also like to say a big congratulations to my younger brother Brian whos 2nd son was born today. David Bryce Wade was born today and we got to go visit him this evening. What a beautiful baby boy!!
Pray with us as we fight to get these seizures under control. He is currently on Keppra, Topamax, and B-6 therapy. We hope that soon these will stop his seizures.
We love you and thank you for checking in on Dawson
Jeff and Allison
Wednesday, March 12, 2008
Wednesday, March 12
What a GREAT day!! So far Dawson has not had any seizures! Isn't God Good!!!! He has been 24 hours without any spasms.
We have recuperated from our trip to Birmingham. Madison was happy to sleep in her "new house" again. Dawson slept most of the day yesterday, so he was in a much better mood today.
We are trying so hard not to get too excited about not having any seizures. We have been here before and then all of a sudden there they go again. Maybe the B-6 treatments are helping.
All i know is that we take one day at a time and this day has been AWESOME. We will deal with whatever tomorrow brings tomorrow.
We have an appt this coming Monday with Dawson's Neuro. I doubt she will have the test results back from the blood and spinal fluid test, But we can talk about his PET scan and EEG.
He is still doing great developmentally. He is right on track and i SWEAR he was repeating
" Hi DA DA" yesterday. I know he has no idea what he was saying but he was repeating it none the less. He is rolling over front to back now with ease.
We also have an appointment with his Pediatrician this month as well. He has not seen him since he was diagnosed at two months old. Wont he be surprised when he sees Dawson. He ordered the first EEG, read the results,and diagnosed Dawson with I.S all on the same day, and by that evening we were in Huntsville at the Neurologist. That afternoon before heading out to meet the Neurologist, he sat down with us in his office and prayed aloud for Dawson. Our world had just been turned upside down in a matter of about 8 hours and him praying for Dawson like that meant the world to me. I will never forget that.
Some people think that things like that happen just by chance. I KNOW that things happen like that by design. I look forward to him meeting Dawson again.
We love you and thank you to all of our friends and family who are making a difference in Dawson's life ( and ours)
Jeff and Allison
We have recuperated from our trip to Birmingham. Madison was happy to sleep in her "new house" again. Dawson slept most of the day yesterday, so he was in a much better mood today.
We are trying so hard not to get too excited about not having any seizures. We have been here before and then all of a sudden there they go again. Maybe the B-6 treatments are helping.
All i know is that we take one day at a time and this day has been AWESOME. We will deal with whatever tomorrow brings tomorrow.
We have an appt this coming Monday with Dawson's Neuro. I doubt she will have the test results back from the blood and spinal fluid test, But we can talk about his PET scan and EEG.
He is still doing great developmentally. He is right on track and i SWEAR he was repeating
" Hi DA DA" yesterday. I know he has no idea what he was saying but he was repeating it none the less. He is rolling over front to back now with ease.
We also have an appointment with his Pediatrician this month as well. He has not seen him since he was diagnosed at two months old. Wont he be surprised when he sees Dawson. He ordered the first EEG, read the results,and diagnosed Dawson with I.S all on the same day, and by that evening we were in Huntsville at the Neurologist. That afternoon before heading out to meet the Neurologist, he sat down with us in his office and prayed aloud for Dawson. Our world had just been turned upside down in a matter of about 8 hours and him praying for Dawson like that meant the world to me. I will never forget that.
Some people think that things like that happen just by chance. I KNOW that things happen like that by design. I look forward to him meeting Dawson again.
We love you and thank you to all of our friends and family who are making a difference in Dawson's life ( and ours)
Jeff and Allison
Tuesday, March 11, 2008
Home from UAB update
Wow, where do I start??
We are home from our visit at Childrens Hospital at UAB and we are soooooooooooooooo exhausted!!! First of all let me air out all my gripes about the last 36 hours and then I can move on to more positive stuff.
Our room was a 10 X 14 hole in the wall that was right next to the nurses station. And when I say " right next to" I mean Right Next To. There was no shower in the room and this morning when I turned on the hot water in the sink.... brown water came out. Yep brown water. I went and got the nurse to show her and she said " It must be rust from the tank or something"
What tank?? am I missing something here?? I told her that regardless of why the water is brown is irrelevant. Somebody needs to fix it. I mean i was mixing up some cereal for Dawson to take his medicine with. I almost made him eat brown water!!
Ok so we were a little frustrated with the living conditions. But I also need to say that Childrens Hospital has an awesome staff and they do awesome work. Last time we were there we were on a different floor and everything was magnificent. 4th floor.... not so much. Some fixing and updating really needs to be done to make it more comfortable for the kids and their family.
The test he had went well and as usual Dawson was a real trooper. The first thing they did was hook him up for his VEEG. ( I have to vent about this as well) This is our 4th EEG and until the other day (when I was informed by another I.S. parent on their blog) I had always thought this thought. With todays technology, it is absolutely insane that we are super gluing 20 leads to a childs head, and then wrapping and taping their head in hopes that all the leads stay where they need to be, Then pouring acetone on the childs head to to eat the super glue so that you can take the leads off when done. Well the technology is out there. It is a device that the kids wear and they are free to move around and its not so invasive to get on and off. I just wonder how many hospitals ( for the sake of the children) will be willing to purchase these new devices??? It will be interesting to see. It is my opinion that Every hospital should use this and get away from the 40 minute wrestling match that it takes to hook up babies for EEG's.
I feel better
After he got hooked up, he went down to have his PET scan done. He was given an injection of glucose through his IV, put to sleep, ( I still haven't found a way to watch that without tearing up) and then put through the scanner. After the scan was done he had his spinal tap. Everything went off without a hitch, and he was awake from the anesthesia in no time.
Our remaining time there was spent watching Dawson fight this " Bee hive" that was on his head. ( Pictures to come soon) Also he was given a high dose of Vitamin B6 to see if that would make any changes on his EEEG. From what we could understand,his EEG showed no change from giving him B6. We are going to stay on a dosage of B6 for two weeks then we will have another EEG done to see if there were any changes. ( cant wait for that)
None of us, including Dawson, slept much at all last night. He would fall asleep but then wake up screaming. This went on all night. He slept a little better while we were there today and then slept all the way home. So we are glad to be home and we are looking forward to the results from all the testing. We did find out that the PET scan didnt show much, The Doctor said there might have been a couple of areas suspect but it was nothing obvious. Im sure Dawson's neuro will cover all that with us and let us know in detail what all that meant.
That about sums up our trip. We knew it would be tiring and we thank you for your prayers while we were gone. Thanks again for the comments being left behind. They are so helpful and inspiring and how awesome it is to have such great family and friends during this.
We love you
We are home from our visit at Childrens Hospital at UAB and we are soooooooooooooooo exhausted!!! First of all let me air out all my gripes about the last 36 hours and then I can move on to more positive stuff.
Our room was a 10 X 14 hole in the wall that was right next to the nurses station. And when I say " right next to" I mean Right Next To. There was no shower in the room and this morning when I turned on the hot water in the sink.... brown water came out. Yep brown water. I went and got the nurse to show her and she said " It must be rust from the tank or something"
What tank?? am I missing something here?? I told her that regardless of why the water is brown is irrelevant. Somebody needs to fix it. I mean i was mixing up some cereal for Dawson to take his medicine with. I almost made him eat brown water!!
Ok so we were a little frustrated with the living conditions. But I also need to say that Childrens Hospital has an awesome staff and they do awesome work. Last time we were there we were on a different floor and everything was magnificent. 4th floor.... not so much. Some fixing and updating really needs to be done to make it more comfortable for the kids and their family.
The test he had went well and as usual Dawson was a real trooper. The first thing they did was hook him up for his VEEG. ( I have to vent about this as well) This is our 4th EEG and until the other day (when I was informed by another I.S. parent on their blog) I had always thought this thought. With todays technology, it is absolutely insane that we are super gluing 20 leads to a childs head, and then wrapping and taping their head in hopes that all the leads stay where they need to be, Then pouring acetone on the childs head to to eat the super glue so that you can take the leads off when done. Well the technology is out there. It is a device that the kids wear and they are free to move around and its not so invasive to get on and off. I just wonder how many hospitals ( for the sake of the children) will be willing to purchase these new devices??? It will be interesting to see. It is my opinion that Every hospital should use this and get away from the 40 minute wrestling match that it takes to hook up babies for EEG's.
I feel better
After he got hooked up, he went down to have his PET scan done. He was given an injection of glucose through his IV, put to sleep, ( I still haven't found a way to watch that without tearing up) and then put through the scanner. After the scan was done he had his spinal tap. Everything went off without a hitch, and he was awake from the anesthesia in no time.
Our remaining time there was spent watching Dawson fight this " Bee hive" that was on his head. ( Pictures to come soon) Also he was given a high dose of Vitamin B6 to see if that would make any changes on his EEEG. From what we could understand,his EEG showed no change from giving him B6. We are going to stay on a dosage of B6 for two weeks then we will have another EEG done to see if there were any changes. ( cant wait for that)
None of us, including Dawson, slept much at all last night. He would fall asleep but then wake up screaming. This went on all night. He slept a little better while we were there today and then slept all the way home. So we are glad to be home and we are looking forward to the results from all the testing. We did find out that the PET scan didnt show much, The Doctor said there might have been a couple of areas suspect but it was nothing obvious. Im sure Dawson's neuro will cover all that with us and let us know in detail what all that meant.
That about sums up our trip. We knew it would be tiring and we thank you for your prayers while we were gone. Thanks again for the comments being left behind. They are so helpful and inspiring and how awesome it is to have such great family and friends during this.
We love you
Sunday, March 9, 2008
Sunday March 9th Update
Today has been a great day for Dawson. We had thought we were starting to some changes in seizure activity and go figure as soon as I sit down to type this he started having some. UGGGGGG I wish I could figure this out. There is no rhyme or reason to these stupid things. Yesterday he only had one cluster, the day before only one, and today he had some but they were only a few per cluster and VERY mild. Then this evening he had some harder ones???? I just dont get it.
Hopefully our trip to Birmingham will answer some questions. We are leaving here at about 5:30 in the morning and tomorrow is going to be a long day for all of us. From what I can tell, most of the testing will be done late morning if all goes to plan. Then the rest of our time there will be another 24 hour VEEG. Pray for Dawson tomorrow as he is having these test done. We hope that putting him through it will provide some answers as to how to better treat his seizures. He has a fighters spirit and he will need it tomorrow Im sure.
We had to leave Madison at Granny's and Grampy's for tonight and tomorrow night while we are gone and we both hate having to do that. Theres no telling what she thinks and I miss her terribly already.
Well were going to try to get to bed early tonight to prepare for the day tomorrow.
Thanks for your prayers, and please say a prayer for Dawson in the morning.
We love you
Jeff and Allison
Hopefully our trip to Birmingham will answer some questions. We are leaving here at about 5:30 in the morning and tomorrow is going to be a long day for all of us. From what I can tell, most of the testing will be done late morning if all goes to plan. Then the rest of our time there will be another 24 hour VEEG. Pray for Dawson tomorrow as he is having these test done. We hope that putting him through it will provide some answers as to how to better treat his seizures. He has a fighters spirit and he will need it tomorrow Im sure.
We had to leave Madison at Granny's and Grampy's for tonight and tomorrow night while we are gone and we both hate having to do that. Theres no telling what she thinks and I miss her terribly already.
Well were going to try to get to bed early tonight to prepare for the day tomorrow.
Thanks for your prayers, and please say a prayer for Dawson in the morning.
We love you
Jeff and Allison
Saturday, March 8, 2008
Sat Evening March 8th
Good evening everybody! Did you all remember to set your clocks back tonight?? We just wanted to give a quick update on Big D. He has only had one cluster of 9 seizures today. Only one cluster, WOW! That is a pretty big difference from the norm. We watch him so closely after he wakes up and it is amazing to see nothing happening. Pray that this decrease continues. Thanks for checking in.
Love,
Allison & Jeff
P.S. Happy Birthday Sis!!
Love,
Allison & Jeff
P.S. Happy Birthday Sis!!
Video March 8th
Good morning everybody. Well, we woke up this morning expecting to see about 3 inches of snow and of course the weather gurus missed the mark again. We got just enough to cover the grass a little and that was about it. We were all kind of disappointed. I know there are some people from up north who read this thinking whats the big deal, but for us Alabamians 3 inches of snow is enough to send everybody into a complete panic.
Dawson slept pretty good again last night and so far no seizures this morning. The last seizures were yesterday afternoon. Wouldn't that be awesome if he could at least go 24 hours with no seizures!!! It is so hard for Allison and I to watch this beautiful little boy have seizures everyday. It seems so unfair but we know that there are bigger things going on here.
We hope you like the video, it was taken March 1st on the "Dawson Cam" and we will try to post a video every so often so the family can watch him grow with us.
The Topamax seems to be going well. He is tolerating it well and so far it has not caused any side effects. Pray with us that as we get ready to increase the dose that he will continue to tolerate it.
Thanks for all of your diligent prayers and for checking to see how he is doing.
BTW we have to give a birthday shoutout to Valerie in Montgomery ( Allison's older sister) who turns the BIG 30 today. Happy Birthday Valerie and welcome to the downhill slide. Enjoy the ride LOL
We love you all
Jeff and Allison
Friday, March 7, 2008
Friday March 7th
Good evening to all. Hope everybody has had a good week and ready for the weekend like we are. We will have Ashlyn & Katelin with us so Madison is super excited. According to the weather man we will be having some snow, so that will be lots of fun with everyone here!!!
Dawson has had another good day. Good naps with only 2 clusters of seizures so far. He typically has at least one more cluster, sometimes two. He is in good humor and is very interested in watching my hand as I type.
The lady from Early Intervention had to cancel her visit today. We were waiting on her to get here and I checked the answering machine...she had left a message earlier in the day stating she needed to reschedule, maybe for Tuesday. Good thing I checked the machine.
Thanks again for your thoughts and prayers.
We love you
Allison and Jeff
Dawson has had another good day. Good naps with only 2 clusters of seizures so far. He typically has at least one more cluster, sometimes two. He is in good humor and is very interested in watching my hand as I type.
The lady from Early Intervention had to cancel her visit today. We were waiting on her to get here and I checked the answering machine...she had left a message earlier in the day stating she needed to reschedule, maybe for Tuesday. Good thing I checked the machine.
Thanks again for your thoughts and prayers.
We love you
Allison and Jeff
Thursday, March 6, 2008
Thursday March 6th Update
Pretty good day for Dawson. Still no change in seizure activity but he did take another 2 hour + nap. His sleeping at night has gotten some better too thankfully. Hopefully we can continue with that trend.
His mood for the most part continues to be really good. It seems he has a spell or two during the day but what 6th month old doesn't.
We have sombody from Early Intervention coming out tomorrow afternoon. Even though he doesn't have any developmental delays as of yet, he still qualifies for the program based on his diagnosis. So if anything, we will get some help getting him ahead of the game and they will be there in case delays pop up along the way.
thanks for checking in and pray for us as we get ready to go to Childrens Hospital on Monday
Jeff and Allison
His mood for the most part continues to be really good. It seems he has a spell or two during the day but what 6th month old doesn't.
We have sombody from Early Intervention coming out tomorrow afternoon. Even though he doesn't have any developmental delays as of yet, he still qualifies for the program based on his diagnosis. So if anything, we will get some help getting him ahead of the game and they will be there in case delays pop up along the way.
thanks for checking in and pray for us as we get ready to go to Childrens Hospital on Monday
Jeff and Allison
Wednesday, March 5, 2008
Wednesday March 5th Update
OK so here's a funny story. I hope I can tell it where it will make sense. In order to do that I need to back up and tell you how we used to give Dawson his Vigabatrin. Vigabatrin is a pill that we used to cut in half and put in a pill crusher. After crushing the pill we would mix some infant cereal to mix it with. We would then take one of those very handy syringes that are used to give kids liquid medicines, pour some cereal in the syringe, pour the crushed up pill in the syringe, put a little more cereal on top of that, put the plunger in and squirt the stuff down him. Get the Picture???
The Topamax that we are giving him now is a capsule with little tiny sprinkles of medicine inside the capsule. We are to break the capsule open, take the sprinkles, mix it with cereal, and then give it to him. So why wouldn't it work in the same syringe that we used to give him his Vigabatrin in??? Ill tell you why.....
Those tiny little sprinkles are too big to fit through the tiny little hole at the end of the syringe. That's why. So for two days we have been thinking we are giving him Topamax when actually all we are doing is giving him cereal through a syringe. Yep, after giving him his dose tonight, I went to wash the syringe out and noticed all these teeny tiny little white sprinkles all gathered up at the tip of the syringe....
Sombody please nominate me for stupid father of the year OK??? HA HA
So tonight was his first actual dose of Topamax. ( Mixed with cereal, ON A SPOON DUH!!)
Dawson got some good sleep this morning. He always takes two 20 - 30 min naps in the morning, but this morning at Grampy's he slept for 2 hours and 40 min. WOW. Grampy called Allison at work, Allison called me at work and we all thought for min that something must be wrong with him. Turns out he was just really tired and wanted some sleep. Good for him for sleeping so long though.
Seizures have been about the same again today. 3 clusters with anywhere from 12-21 per cluster. We hope all this stops soon.
Thanks for your friendship and prayers. We love you
Jeff and Allison
The Topamax that we are giving him now is a capsule with little tiny sprinkles of medicine inside the capsule. We are to break the capsule open, take the sprinkles, mix it with cereal, and then give it to him. So why wouldn't it work in the same syringe that we used to give him his Vigabatrin in??? Ill tell you why.....
Those tiny little sprinkles are too big to fit through the tiny little hole at the end of the syringe. That's why. So for two days we have been thinking we are giving him Topamax when actually all we are doing is giving him cereal through a syringe. Yep, after giving him his dose tonight, I went to wash the syringe out and noticed all these teeny tiny little white sprinkles all gathered up at the tip of the syringe....
Sombody please nominate me for stupid father of the year OK??? HA HA
So tonight was his first actual dose of Topamax. ( Mixed with cereal, ON A SPOON DUH!!)
Dawson got some good sleep this morning. He always takes two 20 - 30 min naps in the morning, but this morning at Grampy's he slept for 2 hours and 40 min. WOW. Grampy called Allison at work, Allison called me at work and we all thought for min that something must be wrong with him. Turns out he was just really tired and wanted some sleep. Good for him for sleeping so long though.
Seizures have been about the same again today. 3 clusters with anywhere from 12-21 per cluster. We hope all this stops soon.
Thanks for your friendship and prayers. We love you
Jeff and Allison
Tuesday, March 4, 2008
Tuesday March 4th Update
We started on Topamax yesterday evening and it seems that his seizures were worse today than they have been in a while. We are at a very low dose and he is only getting it once a day right now. Over the next couple of weeks we will be titrating up in dose and in frequency. He seemed a little fussier than usual after giving him his first dose yesterday, so we are going to give it to him earlier in the evening and stick with his usual 7:00 Keppra dosage.
If you will remember a last week post, we had a lady from Early Intervention come out and spend about an hour with him evaluating his developmental condition. She submitted her official report and we got a call about that today. According to her evaluation, he has Zero developmental delays. I cant begin to tell you how elated we are to find out this great news.
The odds of Dawson having this condition are like 1 in 2000 to 6000 live births ( very rare) and the odds of him having I.S. and no developmental delays are astronomical. I am thinking right now would be a great time for us to play the Lotto!!
We are blessed, and we are lucky, and we are determined to find a way to stop these seizures in our son. God is continuing to answer your prayers and ours. The fact that he is doing so well developmentally is all the proof than anybody needs to see that God is still in the miracle business!!!
Thanks for the wonderful and helpful comments left for us. It is so awesome to know we are not going this alone and we have such wonderful friends and family to walk this journey with us.
We love you all
Jeff and Allison
If you will remember a last week post, we had a lady from Early Intervention come out and spend about an hour with him evaluating his developmental condition. She submitted her official report and we got a call about that today. According to her evaluation, he has Zero developmental delays. I cant begin to tell you how elated we are to find out this great news.
The odds of Dawson having this condition are like 1 in 2000 to 6000 live births ( very rare) and the odds of him having I.S. and no developmental delays are astronomical. I am thinking right now would be a great time for us to play the Lotto!!
We are blessed, and we are lucky, and we are determined to find a way to stop these seizures in our son. God is continuing to answer your prayers and ours. The fact that he is doing so well developmentally is all the proof than anybody needs to see that God is still in the miracle business!!!
Thanks for the wonderful and helpful comments left for us. It is so awesome to know we are not going this alone and we have such wonderful friends and family to walk this journey with us.
We love you all
Jeff and Allison
Monday, March 3, 2008
Monday March 3rd update
First of all let me wish my beautiful wife Allison a Happy Birthday today!!!. Unfortunately today she is sick. Talk about bad luck... to be sick on your birthday is the worst luck of all. We are doing our best to take care of her though.
Dawson has had a better day today. Only two clusters of seizures and we got word from his Neuro that she wants him to start the Topamax tonight. Wonder what that stuff will do to him??
He has been in a much better mood today though.
I want to say how much we appreciate the comments being left behind for us. They have been helpful and encouraging so thank you to our friends and family who are leaving comments for us. We LOVE hearing from you guys. God bless you all for all the prayers you have offered up for Dawson and us. Continue to pray as we seek God's will for our lives through this. He is using Dawson to accomplish some pretty awesome things.
We pray also that starting the Topamax will make a huge difference in stopping these seizures.
Thank you for checking in on him
We love yall
Jeff and Allison
Dawson has had a better day today. Only two clusters of seizures and we got word from his Neuro that she wants him to start the Topamax tonight. Wonder what that stuff will do to him??
He has been in a much better mood today though.
I want to say how much we appreciate the comments being left behind for us. They have been helpful and encouraging so thank you to our friends and family who are leaving comments for us. We LOVE hearing from you guys. God bless you all for all the prayers you have offered up for Dawson and us. Continue to pray as we seek God's will for our lives through this. He is using Dawson to accomplish some pretty awesome things.
We pray also that starting the Topamax will make a huge difference in stopping these seizures.
Thank you for checking in on him
We love yall
Jeff and Allison
Sunday, March 2, 2008
Sunday March 2nd Update
Today's headlines should read " Fussy baby in Killen Alabama refuses to sleep, parents lose their minds in the process"
He is in bad need of a nap today but bless his heart, he cant seem to sleep long enough to make a difference. He went to sleep on Allison not too long ago but as soon as she tried to get up he woke up too. An all to familiar story for some other parents who read this.
Seizures have been about the same. Not a real big difference since going down to .5ml on his Keppra. I assume we will go ahead and combine the Keppra with the Topamax on Monday.
I think there is a dart board somewhere with all the names of anti epileptic drugs on them. We stand back and throw a dart and wherever it lands... well there ya go.
So were getting anxious about this next trip to Children's Hospital. We are excited that it may provide some answers but we are nervous about the procedures. Its obvious God is keeping a close watch over this baby and we know everything will turn out for the best.
We hope everybody enjoyed the updated pics of our "Big" little man and we thank you for stopping in and checking on him.
We love you.
Jeff and Allison
He is in bad need of a nap today but bless his heart, he cant seem to sleep long enough to make a difference. He went to sleep on Allison not too long ago but as soon as she tried to get up he woke up too. An all to familiar story for some other parents who read this.
Seizures have been about the same. Not a real big difference since going down to .5ml on his Keppra. I assume we will go ahead and combine the Keppra with the Topamax on Monday.
I think there is a dart board somewhere with all the names of anti epileptic drugs on them. We stand back and throw a dart and wherever it lands... well there ya go.
So were getting anxious about this next trip to Children's Hospital. We are excited that it may provide some answers but we are nervous about the procedures. Its obvious God is keeping a close watch over this baby and we know everything will turn out for the best.
We hope everybody enjoyed the updated pics of our "Big" little man and we thank you for stopping in and checking on him.
We love you.
Jeff and Allison
Saturday, March 1, 2008
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