Summer stuff

Hope everybody had a great 4th of July. Allison and Madison and I went to hang out and watch some fireworks. We wanted to take Dawson but he usually starts going downhill later in the evening. Since the fireworks started at 9:00 ( which it typically past his bedtime) we decided to leave him behind with Grampy so that Madison could really enjoy the show.. Maybe next year little buddy!!!

Our summer days seems to have been packed full the past couple of weeks. Working, kids, yard work, gardening so on and so forth.. just busy doing life stuff. Our favorite time has been late in the evening when it starts to cool off just a little. Every evening we all get outside, Madison and Dawson ride in their Jeep, we pick the garden, tool around in the yard, pick blueberries and whatever else yummy we can find. Dawson really really enjoys being outdoors. If only we could get a break from this awful heat!! Its been miserable hot and the rest of the week doesn't look any better... If you enjoy upper 90's and humidity... then this is a wonderful place HA

Overall, Dawson has been doing really good. Mood is off and on as usual but the good days are out weighing the bad days by a ton... He has "moments" during the day ( usually in the morning) where he just gets all out of sorts but as the day goes on he gets better and better until its sleepy time. Developmentally he continues to progress. Its a slow pace but as i have said before, as long as were progressing and not regressing we will take it. He talking continues to improve and is able to put words together more and more easily.. We have been stuck on one word at at time mode for so long and we are all very excited to see his vocabulary expand like it has been doing. We have always been so proud ( as most of you know) of Dawson and how he has fought tooth and nail to overcome all these nasty side effects of seizures and meds.. We are so very very proud of him!!

He is currently on 3 different seizure meds. Banzel, Keppra ( very low does) and Zonegran. I can't imagine having all three of those drugs in my body.. Talk about brain scrambling!!! and then throw in a bunch of seizures on top of that??? You can see why we are so proud of him that he is progressing developmentally.

Speaking of seizures... Dawson's seizure patterns have been very random. Single seizures scattered throughout the day. A concern that we have is the fact that over the past few weeks we have been seeing clusters of seizures again.. It just makes my heart sick!! Granted he hasn't been doing it a lot, but we were really really really hoping we were past the clusters of seizures days.. There is nothing harder on this earth to do than sit and count seizures during a cluster.. I think during his last cluster he had 20 something seizures. It's just heartbreaking and the seizure monster pulled a fast one on us.. I hate the seizure monster. If only I could meet this beast face to face........ Instead he plays like a coward and hides in the brains of these innocent little children. I hate seizures... and I hate what they do to children and their families.

BUT... I love God.. and he is so much mightier than a million seizure monsters. I don't know why Dawson has seizures. I DO know that its not because of lack of prayer.. Oh there has been prayer.. Days and days and hours and hours of prayers. I have never prayed harder for anything in my life.. So if we have been praying, and he continues to have seizures, then that leaves me to believe there is purpose in all this. As a matter of fact, Im convinced of it. If my son having seizures, can be used to glorify him, even in the tiniest way... then I am all for it.. All that is left for us to do is be obedient and search for his will in all of this.. The truth is, most days I find that very difficult to do. As a father, its almost impossible to watch your own child suffer like this.. But I have found that on the hardest days, if i be very still and quiet, I can hear his voice in all of this and it comforts me, it brings me peace. In those moments, all of this seems to make sense.. Its impossible for me to explain other than the fact there is peace and purpose. A story waiting to be told.. So we are along for the ride, trying to do the best for Dawson, trying to make the right decisions concerning his care and his future.... Yes God gave us the boat.... but were way over our heads here, so were letting him drive!

Thank you for your prayers for Dawson.. please continue to pray for our family

Jeff and Allison