We are back on the horse again after seizures returning yesterday and He hasn't had any yet today so we start counting those days again. Today is day one.
He had a good day today. He seems to be cutting yet another tooth. He has been a little fussier that past couple of days and his sleep has been a lot more interrupted the past two or three nights. We are blaming this on the cutting of teeth as well. We are hoping tonight that he ( WE) will sleep a little better.
He had occupational therapy today and it went really well. He got fussy towards the end so we cut it a bit short. His occupational therapist says he is doing really really well. As a matter of fact she said we need to have him re-evaluated again because he has already met and surpassed the goals that were set for him when he was evaluated a few months ago. So he needs new goals to strive for.
That is such wonderful news to us. We spend so much time concentrating on seizures that sometimes we forget how blessed we are that developmentally he continues to thrive. So despite the seizures, he continues to develop and this in itself is just a miracle that we are so thankful for.
Something else we are thankful for is YOU. You guys have been so awesome to us. Your concern and your unrelenting prayers have left us speechless and we love each one of you very much. Thank you for checking in on Dawson
Our love to all
Jeff and Allison
Friday, May 30, 2008
Thursday, May 29, 2008
The return of the seizures
Sounds like the name of a bad movie doesn't it??
Anyway those horrible things made their return today. He woke from a nap and had twenty something. So tomorrow we start over again prayerful and hopeful that we can string together some more seizure free days.
We are very thankful for the past 6 days. It was so awesome not counting seizures. We got a sense of normalcy about us the past few days.
We look forward to some more of those days soon
Our love to all
Jeff and Allison
Anyway those horrible things made their return today. He woke from a nap and had twenty something. So tomorrow we start over again prayerful and hopeful that we can string together some more seizure free days.
We are very thankful for the past 6 days. It was so awesome not counting seizures. We got a sense of normalcy about us the past few days.
We look forward to some more of those days soon
Our love to all
Jeff and Allison
Wednesday, May 28, 2008
Day 5 seizure free
WOW......... 5 days and no seizures. We are so grateful for these past few days. What a blessing God's grace and healing power are. We are at this point literally speechless. I don't think there are words that can describe how we feel at this very moment. So tonight we are sitting quietly before God. Humbled, Awestruck, and Amazed.
We pray that tomorrow will be day 6
Thank you family and friends for your diligent prayers.
We love you
Jeff and Allison
We pray that tomorrow will be day 6
Thank you family and friends for your diligent prayers.
We love you
Jeff and Allison
Tuesday, May 27, 2008
Day 4 seizure free
That's right, we are working on Day 4 with no seizures. Our hearts are just about to leap out of our chests with joy. BUT..... There is that thing that lingers in the back of your mind that just wont let you celebrate. That thing lurking back there telling you that this wont last. We know all too well that there are no guarantees in this game. You have to find that balance between being excited that he is not having any VS. being prepared to deal with seizures should they return at any moment. It is so hard to stay in the middle of the road like that!!
We hope and pray that he gets through the day today without any, and tomorrow we can start Day 5 seizure free. Please pray that God will continue his great and wonderful healing works in Dawson.
As of now we are still preparing to go to Atlanta for more testing. Its only a few days away and I am not sure what we are supposed to do if he should go S.F between now and then???
Obviously we will have to speak to his Neuro and see what she says.
Thank you so much for your support, your prayers, and your supportive comments being left for us. Hopefully tomorrow can be Day 5 for Dawson
We love you all
Jeff and Allison
We hope and pray that he gets through the day today without any, and tomorrow we can start Day 5 seizure free. Please pray that God will continue his great and wonderful healing works in Dawson.
As of now we are still preparing to go to Atlanta for more testing. Its only a few days away and I am not sure what we are supposed to do if he should go S.F between now and then???
Obviously we will have to speak to his Neuro and see what she says.
Thank you so much for your support, your prayers, and your supportive comments being left for us. Hopefully tomorrow can be Day 5 for Dawson
We love you all
Jeff and Allison
Monday, May 26, 2008
Memorial Day Update
Yesterday was another seizure free day for Dawson. That's two days in a row!! We are once again thrilled. We have taken it upon ourselves to make some decisions about his current meds. We were supposed to completely be off of the Lamactil as of today per Dr's orders BUT.........
because he stopped having seizures Allison and I decided not to make any changes in his meds.
Its the old " If it ain't broke don't fix it" rule. We also by accident missed a nightly dose of his B-6 the other night and since he hasn't had any seizures since then we have stopped giving that to him as well. We do not claim to know more than a neurologist but in the past 7 months we have learned A LOT and I think in some situations ( like this one) parents actually know whats better for their child even more than a neurologist does. So with that being said, until we see any changes in him, we wont be making any changes in his meds.
New trick of the week........ ( drum roll please)............... he has learned to clap his hands. TADAAAAAAAA
We do it, and then he does it. He seems to like the the noise his little hands can make and we absolutely love seeing him do new things. We haven't spoke much about his eating habits lately so just a quick word about that. He LOVES to eat. There are a few things we have come across that he doesn't much care for but other than that he eats most of whats put in front of him. Its nice to see such a good appetite. I know a lot of the meds these kids have to be on to control seizures can drastically effect their appetite and we seem to have been spared that thank goodness.
Today, we are in a very good place and we wish we could just sorta freeze time but we realize that tomorrow is another day and we do not know what tomorrow is going to be like. Things could be just as they are today, or they can be drastically different. This is the life you have to live when you have a child with a seizure disorder.
Have a great day everybody and we love you
Jeff and Allison
because he stopped having seizures Allison and I decided not to make any changes in his meds.
Its the old " If it ain't broke don't fix it" rule. We also by accident missed a nightly dose of his B-6 the other night and since he hasn't had any seizures since then we have stopped giving that to him as well. We do not claim to know more than a neurologist but in the past 7 months we have learned A LOT and I think in some situations ( like this one) parents actually know whats better for their child even more than a neurologist does. So with that being said, until we see any changes in him, we wont be making any changes in his meds.
New trick of the week........ ( drum roll please)............... he has learned to clap his hands. TADAAAAAAAA
We do it, and then he does it. He seems to like the the noise his little hands can make and we absolutely love seeing him do new things. We haven't spoke much about his eating habits lately so just a quick word about that. He LOVES to eat. There are a few things we have come across that he doesn't much care for but other than that he eats most of whats put in front of him. Its nice to see such a good appetite. I know a lot of the meds these kids have to be on to control seizures can drastically effect their appetite and we seem to have been spared that thank goodness.
Today, we are in a very good place and we wish we could just sorta freeze time but we realize that tomorrow is another day and we do not know what tomorrow is going to be like. Things could be just as they are today, or they can be drastically different. This is the life you have to live when you have a child with a seizure disorder.
Have a great day everybody and we love you
Jeff and Allison
Sunday, May 25, 2008
Sunday May 25th
Just wanted to give a quick update as we are trying to get out the door to church this morning.
Yesterday was a seizure free day for Dawson. A one, and a two, and a Hip Hip Hooray, Hip Hip Hooray, Hip Hip Hooray for Dawson.
We love and cherish each and every one of those kind of days and we pray that more are on the horizon.
Our love to all
Jeff and Allison
Yesterday was a seizure free day for Dawson. A one, and a two, and a Hip Hip Hooray, Hip Hip Hooray, Hip Hip Hooray for Dawson.
We love and cherish each and every one of those kind of days and we pray that more are on the horizon.
Our love to all
Jeff and Allison
Saturday, May 24, 2008
Saturday May 24th Update
Yesterday Dawson had a cluster of 22 seizures then had about 5 just right before he was going to sleep last night. That is something new. When he has them, its ALWAYS when he is waking from a nap. So obviously when we see something new its concerning.
His Neurologist wants to take him off the Lamactil. She thinks its ineffective at this point. But she wants us to remain on the Topamax ( which I think has been ineffective) Actually, if he is still having seizures that would make both of them ineffective. We are not sure what we are going to try next. We are going to stop by on our way back from Atlanta and I guess we will see what she suggests.
I find myself pretty disappointed at all this. When he started going two and three days with no seizures, I had myself convinced that the Lamactil was going to be our " miracle drug" Now there is going to be something else we have to try with different side effects UGGGGG
With all that being said, God continues to bless us. He has given us a peace about all of this that can only be explained as supernatural. We continue to seek his will in all of this and we are so thankful for such a happy healthy baby boy.
We hope every one has a safe holiday weekend. Thank you for your prayers and support
Jeff and Allison
His Neurologist wants to take him off the Lamactil. She thinks its ineffective at this point. But she wants us to remain on the Topamax ( which I think has been ineffective) Actually, if he is still having seizures that would make both of them ineffective. We are not sure what we are going to try next. We are going to stop by on our way back from Atlanta and I guess we will see what she suggests.
I find myself pretty disappointed at all this. When he started going two and three days with no seizures, I had myself convinced that the Lamactil was going to be our " miracle drug" Now there is going to be something else we have to try with different side effects UGGGGG
With all that being said, God continues to bless us. He has given us a peace about all of this that can only be explained as supernatural. We continue to seek his will in all of this and we are so thankful for such a happy healthy baby boy.
We hope every one has a safe holiday weekend. Thank you for your prayers and support
Jeff and Allison
Thursday, May 22, 2008
Thursday May 22nd
We hope every one has had a wonderful day. Today was a better day seizure wise for Dawson. He only had a couple of episodes. Last night he woke up ( actually me and Madison woke him up by accident) and he had some large clusters 20+. It has been a long time since he has had a large cluster like that and we hope its a long time, preferably never, before he does that again.
We were able to go out for dinner tonight and it went remarkably well. Usually when you take an 8 month old and a three year old out to dinner things spiral downward upon being seated. But tonight everyone was well behaved and it was nice to get out and spend some time together. Dawson spent the entire time flirting with some ladies seated beside us. He may look just like me but he gets his flirtatiousness from his momma.
So we trudge on again, hoping and praying that tomorrow he has none. Hoping and praying for all of our friends who's children suffer from this same thing and that they may find the same answers and solutions that we ourselves seek. Praying and praying that these kids can one day very soon enjoy a life without seizures.
Our love to all
Jeff and Allison
We were able to go out for dinner tonight and it went remarkably well. Usually when you take an 8 month old and a three year old out to dinner things spiral downward upon being seated. But tonight everyone was well behaved and it was nice to get out and spend some time together. Dawson spent the entire time flirting with some ladies seated beside us. He may look just like me but he gets his flirtatiousness from his momma.
So we trudge on again, hoping and praying that tomorrow he has none. Hoping and praying for all of our friends who's children suffer from this same thing and that they may find the same answers and solutions that we ourselves seek. Praying and praying that these kids can one day very soon enjoy a life without seizures.
Our love to all
Jeff and Allison
Wednesday, May 21, 2008
Wednesday May 21st Update
Things are still about the same at the Wade household. Dawson's seizure patterns remains very unpredicatable. One day none, one day with, two days no seizures then the next day he will have some....... As if we wern't already confused enough. Regardless, we are thankful and look forward to the days he has none and hope to string some back to back again soon.
He is sleeping a little better again at night although its nothing compared to what we wish it would be. He wakes frequently throughout the entire night but on the good nights its easy to lull him back to sleep. I will give him this though..... For a kid who wakes up all night long every night he sure is a happy baby. Smiles, smiles, and more smiles.
We have found a new way to give his meds and it seems to help a lot and it is very simple to do....................
We hired a bubble blower ( Madison.) She gets her bubbles ready and when its time she will start blowing bubbles, Dawson gets distracted trying to pop them, and then we shove the stuff in his mouth. He is so distracted by the bubbles that he doesn't seem to realize that its " Medicine time." It is obvious that Madison enjoys it as well, and we make a big deal about what a great helper she is.
We are anxiously awaiting our Atlanta trip. We both keep wishing that something would happen and we wouldn't have to go but it appears that we will have to and we have the hope that this new round of testing will shed a lot of light on the subject.
Please continue to lift him up in prayer. God is awesome and he is listening.
Jeff and Allison
He is sleeping a little better again at night although its nothing compared to what we wish it would be. He wakes frequently throughout the entire night but on the good nights its easy to lull him back to sleep. I will give him this though..... For a kid who wakes up all night long every night he sure is a happy baby. Smiles, smiles, and more smiles.
We have found a new way to give his meds and it seems to help a lot and it is very simple to do....................
We hired a bubble blower ( Madison.) She gets her bubbles ready and when its time she will start blowing bubbles, Dawson gets distracted trying to pop them, and then we shove the stuff in his mouth. He is so distracted by the bubbles that he doesn't seem to realize that its " Medicine time." It is obvious that Madison enjoys it as well, and we make a big deal about what a great helper she is.
We are anxiously awaiting our Atlanta trip. We both keep wishing that something would happen and we wouldn't have to go but it appears that we will have to and we have the hope that this new round of testing will shed a lot of light on the subject.
Please continue to lift him up in prayer. God is awesome and he is listening.
Jeff and Allison
Monday, May 19, 2008
Monday May 19th Update
Last night was a better night for sleeping. He wasn't quite as restless as the prior two nights and we were very grateful for that. I think i must be getting too old because the nights that we don't really sleep at all, I really feel it the next day.
Most importantly, Dawson did not have any seizures today!! GO DAWSON GO!!!!!!
Your thoughts and prayers , as always, are so appreciated by us. We often pray that God will bless in a very special way each and every one of you!
We love you
Jeff and Allison
Most importantly, Dawson did not have any seizures today!! GO DAWSON GO!!!!!!
Your thoughts and prayers , as always, are so appreciated by us. We often pray that God will bless in a very special way each and every one of you!
We love you
Jeff and Allison
Sunday, May 18, 2008
Sunday May18th
The past two nights have been horrible sleeping nights for Dawson. Last night he was up at least every hour and quite a few times he was waking every 30 to 45 minutes. The night before last was almost the same. So from 9:00 last night to 6:30 this morning was kinda rough. Today Allison and I have been exhausted. It feels as though we haven't slept at all for two nights. Dawson has never been the best sleeper at night. He does sleep but he wakes many times during one nights sleep. But this is ridiculous. Poor kid just cant sleep at all right now. He is cutting another tooth and so maybe that has a lot to do with it. Hopefully tonight we will sleep better
As mentioned in yesterday's post we did have some seizures which was so devastating after going three days with none. But we have saddled back up again and so far he has had none today. Every day that he has none is just a miracle to us and we are so grateful for each one of those days.
Thanks for checking in on Dawson. Thank you for your constant prayers and support.
We love you
Jeff and Allison
As mentioned in yesterday's post we did have some seizures which was so devastating after going three days with none. But we have saddled back up again and so far he has had none today. Every day that he has none is just a miracle to us and we are so grateful for each one of those days.
Thanks for checking in on Dawson. Thank you for your constant prayers and support.
We love you
Jeff and Allison
Saturday, May 17, 2008
More Seizures
Well, the seizures returned again. He has some Friday afternoon and has had two clusters so far today. Oh well!! I am to call the Neuros office on Monday to let them know how the weekend goes and I guess we'll see about going back up on the Lamictal. He is doing fine otherwise. It seems we are on the right path, we add a day every time he goes without seizures. It is just SO frustrating!!
We did ask if teething lowered the seizure threshold and the nurse said that any stress, emotional or physical, can lower the threshold. So maybe it is because he is teething. Despite why, we just deal with it and move on.
Please continue to pray for our little hero. We love you all!!
Allison & Jeff
We did ask if teething lowered the seizure threshold and the nurse said that any stress, emotional or physical, can lower the threshold. So maybe it is because he is teething. Despite why, we just deal with it and move on.
Please continue to pray for our little hero. We love you all!!
Allison & Jeff
Thursday, May 15, 2008
Video of Dawson and No seizures
We wanted to share some video of Dawson with everybody. I think its been a little while since we have done one and he is growing SO FAST!! He is not quite big enough yet to play with his golf clubs and fishing poles so the dishes will have to do for now.
By the way.... today is the THIRD DAY IN A ROW WITH NO SEIZURES!!!! Can you believe it?? we are so excited for him. We are trying to keep ourselves grounded and realistic to the fact that we both know he could have some tomorrow or even tonight. But until then I think we will just let our hearts soar with excitement and pray that God will give us another day of no seizures tomorrow. I know I have said it before but it is worth saying again. This has nothing to do with Topamax or Lamactil, or B-6 therapies. This has everything to do with prayers being answered. Im not saying that God does not work through these medications to heal seizures, but when you get down to the nuts and bolts of it all, Prayer and faith in God is more powerful than any drug that we could ever think of giving him.
How can I say thank you for all of those who have lifted Dawson up in prayer?? I don't think there is a way that we could ever come close to putting down in words how we feel about you guys. So we stand here amazed and humbled by the fact that so many would pray for so long for our son. THANK YOU!! and we hope you enjoy this little video of him
Wednesday, May 14, 2008
Wednesday May 14th Update
Still doing good on seizures since going back down on the Lamactil. None yesterday and there was a possible 1 seizure today but I was told that it was so subtle that nobody was sure if it was one or not. I am going with the optimistic side and saying none today either.
Can you believe we have been battling this for over 6 months now?? There have been times that I wondered if we would ever be able to say " Dawson was seizure free today" And here we have been saying it more and more often over the last couple of weeks.
God is amazing and Dawson is such a fighter. I know it to be a fact that there is going to be a lot of awesome things accomplished between those two. So much already has and we find ourselves once again on our knees thanking God for another day with no seizures.
Dawson's physical and occupational therapy are going really well. He is picking up and eating little fruit puffs ( baby finger food) and so far seems to like everything that we offer in the way of food. He is cutting another tooth and is starting to seem more and more interested in trying to move to get things that are out of his reach. I feel like we will soon be crawling.
One of his favorite things now is taking a bath with Madison. Although I think she likes it more than him. I know we dont say a whole lot about Madison on here because this blog is dedicated to Dawson and his progress but I just have to tell you...... You have never seen a more proud " Big sister." The love she is able to show for him at the ripe old age of 3 is something we could all take lessons from. He is her " Baby Buddy" and she takes such good care of him. It is so neat to watch the bond between them grow.
We finally got a date locked down that we will be in Atlanta. We will arrive on June the 2nd, Have consultation visits with the Doctors on June 3rd, his testing ( spinal tap and muscle biopsy) will be on June 4th and we will probably return home that day as well. Since this is a clinic and not a hospital we will have to try and find a hotel room nearby and we hope that gas prices will go down a little between now and then although it does not look like that is going to happen.
Pray that Dawson will continue to be seizure free and pray for us as we get ready to do more testing on him.
We love you
Jeff and Allison
Can you believe we have been battling this for over 6 months now?? There have been times that I wondered if we would ever be able to say " Dawson was seizure free today" And here we have been saying it more and more often over the last couple of weeks.
God is amazing and Dawson is such a fighter. I know it to be a fact that there is going to be a lot of awesome things accomplished between those two. So much already has and we find ourselves once again on our knees thanking God for another day with no seizures.
Dawson's physical and occupational therapy are going really well. He is picking up and eating little fruit puffs ( baby finger food) and so far seems to like everything that we offer in the way of food. He is cutting another tooth and is starting to seem more and more interested in trying to move to get things that are out of his reach. I feel like we will soon be crawling.
One of his favorite things now is taking a bath with Madison. Although I think she likes it more than him. I know we dont say a whole lot about Madison on here because this blog is dedicated to Dawson and his progress but I just have to tell you...... You have never seen a more proud " Big sister." The love she is able to show for him at the ripe old age of 3 is something we could all take lessons from. He is her " Baby Buddy" and she takes such good care of him. It is so neat to watch the bond between them grow.
We finally got a date locked down that we will be in Atlanta. We will arrive on June the 2nd, Have consultation visits with the Doctors on June 3rd, his testing ( spinal tap and muscle biopsy) will be on June 4th and we will probably return home that day as well. Since this is a clinic and not a hospital we will have to try and find a hotel room nearby and we hope that gas prices will go down a little between now and then although it does not look like that is going to happen.
Pray that Dawson will continue to be seizure free and pray for us as we get ready to do more testing on him.
We love you
Jeff and Allison
Tuesday, May 13, 2008
Tuesday April 13th Update
Well we went back down to the last dose we were on and so far today no seizures. The game continues...........
I cant help but wonder if we have finally hit that " magical dose" of drugs that will stop these stupid things. We have been told all along that its about finding the right drugs (s) and the correct dose. A little too much of this can have little effect, a little too much of that can actually cause seizures to be worse ( which we have certainly seen) so MAYBE just maybe the dose that got him through the entire weekend with no seizures is right amount of the right drugs.
The only problem is, is that the only way to find out is to wait ( which I hate doing by the way) speaking of waiting.. still no word on an actual appointment date for Atlanta. We are starting to get a little frustrated with that wait. I will call again tomorrow and see what the hold up is.
Dawson has been in a great mood today. Little fussy around sleep time but this evening him and Madison are back playing in her room and I can hear him laughing at her all the way in here.
WHAT A WONDERFUL SOUND!!
Thanks for checking in on little guy. Thank you for your prayers. They mean more than you could ever know.
Jeff and Allison
I cant help but wonder if we have finally hit that " magical dose" of drugs that will stop these stupid things. We have been told all along that its about finding the right drugs (s) and the correct dose. A little too much of this can have little effect, a little too much of that can actually cause seizures to be worse ( which we have certainly seen) so MAYBE just maybe the dose that got him through the entire weekend with no seizures is right amount of the right drugs.
The only problem is, is that the only way to find out is to wait ( which I hate doing by the way) speaking of waiting.. still no word on an actual appointment date for Atlanta. We are starting to get a little frustrated with that wait. I will call again tomorrow and see what the hold up is.
Dawson has been in a great mood today. Little fussy around sleep time but this evening him and Madison are back playing in her room and I can hear him laughing at her all the way in here.
WHAT A WONDERFUL SOUND!!
Thanks for checking in on little guy. Thank you for your prayers. They mean more than you could ever know.
Jeff and Allison
Monday, May 12, 2008
Monday May 12
Well, the seizures returned again today. He has had 3 clusters so far today of 13, 6, and 22. Not too happy about that. I sent in an update to the neuros office including the return of the seizures and inquired about his dosage. The nurse called back and said to go back down to 4 mg of Lamictal morning and evening ( we had increased it this morning) and call them back on Friday. So we will see how the rest of the week goes. I placed a call to the place in Atlanta just to see where things stood, had to leave a message and probably won't hear anything until tomorrow.
I don't remember if it got mentioned, but Dawson rolled from back to front and then to back Sat night!!! That was the first time he has rolled from back to front. He still does not use his left side as much as his right. His use of his left has improved but is still noticeably less.
He continues to be a very happy baby boy. Always ready with a smile!!! He is such a joy!!
Hope all the mothers had a Happy Mother's Day!!! I sure did...Thank you Jeff, Madison and Dawson...I love you!!!
Please continue to lift Dawson up in prayer, that is his most effective medicine!
Love to all,
Allison & Jeff
I don't remember if it got mentioned, but Dawson rolled from back to front and then to back Sat night!!! That was the first time he has rolled from back to front. He still does not use his left side as much as his right. His use of his left has improved but is still noticeably less.
He continues to be a very happy baby boy. Always ready with a smile!!! He is such a joy!!
Hope all the mothers had a Happy Mother's Day!!! I sure did...Thank you Jeff, Madison and Dawson...I love you!!!
Please continue to lift Dawson up in prayer, that is his most effective medicine!
Love to all,
Allison & Jeff
Sunday, May 11, 2008
NO SEIZURES
we are excited to report that as of Friday morning Dawson has not had any seizures. He has gone 2 days now with no seizure activity. What a great mothers day present. Join us in thankfulness to the Lord for these two great days.
GO DAWSON GO!!!! we are SOOO PROUD of him!!
Jeff and Allison
Saturday, May 10, 2008
Saturday May 10th Update
Hope everybody is having a super weekend. We are busy doing our usual stuff this weekend. Cleaning house, feeding kids, shopping around, counting seizures, you know.. just the usual stuff.
Fortunately for Dawson, when it comes to counting seizures, we are not having to do a lot of counting right now. He is still having some daily but they seemed to be confined to just once a day and the numbers of seizures he will have remain very low. I know the goal is to get them stopped ( and we will not stop until they do) but compared to where we were, this is much much better. I am convinced beyond any shadow of doubt, that what we are seeing now is a direct result of our faith, mixed with the prayers of hundreds of people, who have been diligently and faithfully praying for Dawson for 6 months now. In my own mind, this has been, and continues to be spiritual warfare. The enemy was hoping that this would weaken my family, question our faith, and turn from what we know is right............
Today, because God is at our side, we can stand and laugh in the face of that same enemy.
YOU LOSE !!!! we will not be shaken!!!!
I would also like to wish a Happy Mother's Day to all the Mom's out there but I would also like to single out a few Mom's.
First of All my own mother. I love you more than you could know.
My mother in law , who is a very special woman
Too all the moms who have children who suffer from this horrible seizure disorder ( you are very very special and it is my belief that God only allows special moms like you to care and nurture these kids.)
And last but certainly not least. My beautiful wife Allison. The way I feel about the way she loves and cares for this family is beyond words. Watching her care for Dawson and Madison, doing all the things that she has to do, and at the end of the day still standing Strong often reminds me of how weak I truly am. Neither I, nor the kids would make it a day without her.
Happy Mothers Day Allison. We love you!!
Jeff
Fortunately for Dawson, when it comes to counting seizures, we are not having to do a lot of counting right now. He is still having some daily but they seemed to be confined to just once a day and the numbers of seizures he will have remain very low. I know the goal is to get them stopped ( and we will not stop until they do) but compared to where we were, this is much much better. I am convinced beyond any shadow of doubt, that what we are seeing now is a direct result of our faith, mixed with the prayers of hundreds of people, who have been diligently and faithfully praying for Dawson for 6 months now. In my own mind, this has been, and continues to be spiritual warfare. The enemy was hoping that this would weaken my family, question our faith, and turn from what we know is right............
Today, because God is at our side, we can stand and laugh in the face of that same enemy.
YOU LOSE !!!! we will not be shaken!!!!
I would also like to wish a Happy Mother's Day to all the Mom's out there but I would also like to single out a few Mom's.
First of All my own mother. I love you more than you could know.
My mother in law , who is a very special woman
Too all the moms who have children who suffer from this horrible seizure disorder ( you are very very special and it is my belief that God only allows special moms like you to care and nurture these kids.)
And last but certainly not least. My beautiful wife Allison. The way I feel about the way she loves and cares for this family is beyond words. Watching her care for Dawson and Madison, doing all the things that she has to do, and at the end of the day still standing Strong often reminds me of how weak I truly am. Neither I, nor the kids would make it a day without her.
Happy Mothers Day Allison. We love you!!
Jeff
Thursday, May 8, 2008
Thursday May 8th Update
Another great day today. Grandmom said that he "maybe" had only a couple. We say maybe because sometimes Dawson's seizures are so subtle that if you don't know what to look for you will miss it. Other times his seizures are unmistakable. And sometimes there is a mixture of both kinds during a cluster. At any rate, if he did have some today it was only a couple and there is a chance that he didn't have any at all!!!. We are back to being lulled into thinking we have a handle on these things. I am sure that once again, time will prove us wrong.
As any parent who's child is struggling with this disorder will tell you, days like this are what we long for more than anything. A day where these kids can be just kids and don't have to suffer through having seizures. We thank God for another great day and hope for one again tomorrow.
Our prayer today is that soon Dawson will be seizure free forever. As always, God has been faithful in hearing our prayers. Thank you once again for lifting Dawson up to him in prayer.
We love you
Jeff and Allison
As any parent who's child is struggling with this disorder will tell you, days like this are what we long for more than anything. A day where these kids can be just kids and don't have to suffer through having seizures. We thank God for another great day and hope for one again tomorrow.
Our prayer today is that soon Dawson will be seizure free forever. As always, God has been faithful in hearing our prayers. Thank you once again for lifting Dawson up to him in prayer.
We love you
Jeff and Allison
Wednesday, May 7, 2008
Wednesday May 7th Update
Today has been another good seizure day. Let me rephrase that.... Any day that your child has seizures pretty much sucks, but if you have a child that suffers with seizures, and they only have one cluster of 3 seizures.... well, in my book thats a pretty good day.
Hopefully we are working our way back down to none.
Got a call from the Doctors office in Atlanta. They received all of our stuff that we had to fill out but wouldn't you know it, they have not received any of the stuff our Neuro is supposed to send. So of course that prompted an immediate phone call and the nurse said she had just got through faxing all of his medical records over to them. Hopefully SOON we will have an actual appointment date. I think we have been saying that for a week now.
Pray for us as the time draws near. We are not only nervous about the testing ( spinal tap & muscle biopsy) but this is pretty much our last step in finding out what exactly the cause is. If we don't get answers here, then we are pretty much stuck with the seizures and trying different meds to see what helps him the most. I am so glad that God is in control of this and we are not left to our own devices to work out on our own. If that was the case, we would have cracked a long time ago.
Your prayers and support have been, and continue to be a driving force for us. We thank you and love you all.
Jeff and Allison
Hopefully we are working our way back down to none.
Got a call from the Doctors office in Atlanta. They received all of our stuff that we had to fill out but wouldn't you know it, they have not received any of the stuff our Neuro is supposed to send. So of course that prompted an immediate phone call and the nurse said she had just got through faxing all of his medical records over to them. Hopefully SOON we will have an actual appointment date. I think we have been saying that for a week now.
Pray for us as the time draws near. We are not only nervous about the testing ( spinal tap & muscle biopsy) but this is pretty much our last step in finding out what exactly the cause is. If we don't get answers here, then we are pretty much stuck with the seizures and trying different meds to see what helps him the most. I am so glad that God is in control of this and we are not left to our own devices to work out on our own. If that was the case, we would have cracked a long time ago.
Your prayers and support have been, and continue to be a driving force for us. We thank you and love you all.
Jeff and Allison
Tuesday, May 6, 2008
Tuesday May 6th
He had two small clusters so far today. I tell you, it is just so frustrating....you think you are getting somewhere, like maybe there is a pattern or something, then BOOM!! it all blows up in your face and he has 2 clusters with higher numbers (yesterday) in the daytime rather than at night. Today hasn't been so bad. So far he only had 3 spasms in each cluster. Sleep it still just okay, not to bad but not great either. Yesterday I sent a fax to the neuros office to update them on Dawson and I also asked about maybe using melatonin. I talked to his neuros nurse (after hearing about the increase in seizure activity I placed an immediate, frantic phone call) and they told us to give him his Lamictal as one dose in the morning instead of some in the morning and in the evening because it can cause insomnia. She said she didn't think that going up in the dosage played a role in his increase of seizures because we had just increased the dose that morning. She wants us to call back on Thurs. to let them know how he is doing.
He is making some new noises and putting some consonant sounds together. He likes to make noise by blowing through his lips, he sounds like a motorcycle...it is so funny!! He is such a happy, sweet little boy. He always has a smile ready for you!!! He is such a Blessing!!!
Thanks for checking in and please continue to lift Dawson up in prayer.
Love to all,
Allison & Jeff
He is making some new noises and putting some consonant sounds together. He likes to make noise by blowing through his lips, he sounds like a motorcycle...it is so funny!! He is such a happy, sweet little boy. He always has a smile ready for you!!! He is such a Blessing!!!
Thanks for checking in and please continue to lift Dawson up in prayer.
Love to all,
Allison & Jeff
Monday, May 5, 2008
Seizures Return
We had a great weekend and we hope that everyone else did as well. The seizures unfortunately did make a return. As a general rule, we are getting through the day without any but if he wakes during the first few hours of night time sleep he will have a few. ( Except for this morning and he had 14)
So even though he is having some again, the break we got from not having any was just awesome. I really feel like we are close to breaking the code that will stop these. It is so much better than it was,and we are really thankful for this. God must have known that Dawson needed a break and the decline in seizures ,and the day he had none, were answered prayers.
We are pushing forward and will hopefully have a date soon when we go to Atlanta. We have filled out all the paperwork and sent it in so now we wait. Thank you for your prayers and for celebrating with us the recent battles that Dawson has won. We look forward to more days of no seizures.
We love you all
Jeff and Allison
So even though he is having some again, the break we got from not having any was just awesome. I really feel like we are close to breaking the code that will stop these. It is so much better than it was,and we are really thankful for this. God must have known that Dawson needed a break and the decline in seizures ,and the day he had none, were answered prayers.
We are pushing forward and will hopefully have a date soon when we go to Atlanta. We have filled out all the paperwork and sent it in so now we wait. Thank you for your prayers and for celebrating with us the recent battles that Dawson has won. We look forward to more days of no seizures.
We love you all
Jeff and Allison
Saturday, May 3, 2008
Saturday May 3rd Update
NO SEIZURES YESTERDAY!!!!!!!!! and none so far today either. We give all the glory to the only one who has the power to heal............... Jesus!!!
We have finally arrived back down to the dosage of Topamax that worked the best for him previously and his Med list is as follows:
Topamax-- 30mg A.M and 45 mg P.M ( sprinkles)
Lamactil-- 2mg A.M and 2 MG P.M.
B-6-- 1ML in the P.M
Prayer-- Every hour of the day
When we started the Lamactil, His Neuro told us that the the drug had about a 30% success rate. Adding the Lamactil is the only thing we have done differently.
If indeed the Lamactil is making the difference, it wouldn't be the first time that Dawson has beaten the odds, for he has pretty much beaten them all
Thank you for your prayers and we thank God for this great change. Pray with us that today will be seizure free as well!!
Jeff and Allison
We have finally arrived back down to the dosage of Topamax that worked the best for him previously and his Med list is as follows:
Topamax-- 30mg A.M and 45 mg P.M ( sprinkles)
Lamactil-- 2mg A.M and 2 MG P.M.
B-6-- 1ML in the P.M
Prayer-- Every hour of the day
When we started the Lamactil, His Neuro told us that the the drug had about a 30% success rate. Adding the Lamactil is the only thing we have done differently.
If indeed the Lamactil is making the difference, it wouldn't be the first time that Dawson has beaten the odds, for he has pretty much beaten them all
Thank you for your prayers and we thank God for this great change. Pray with us that today will be seizure free as well!!
Jeff and Allison
Friday, May 2, 2008
Friday May 2nd Update
The latest news on the seizures is as follows... He had no seizures again yesterday. He had a cluster of 14 last night. And he has not had any seizures today. We are soooooo excited about the changes that have taken place over the last few days. We praise God for answered prayers and for these last few days. It has been just awesome watching him just be a baby without sitting and counting seizures after every nap.
We will have Ashlyn and Katelin joining us this weekend so it looks like another busy one for us.
We hope that all of you have a great weekend and we want to say thanks for every single person who has lifted Dawson up in the name of the Lord. We are watching prayers being answered at this very moment.
We love you all
Jeff and Allison
We will have Ashlyn and Katelin joining us this weekend so it looks like another busy one for us.
We hope that all of you have a great weekend and we want to say thanks for every single person who has lifted Dawson up in the name of the Lord. We are watching prayers being answered at this very moment.
We love you all
Jeff and Allison
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