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
Saturday, May 10, 2008
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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