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Tuesday, June 23, 2009 |
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Hello my friends! Not much to post about this morning, but since I'm still up, why not post something :)
Things are going great here. The Big Happy Tent project seems to be "taking flight". Were really excited about this project and hope it does as well, if not better than anyone expects. But even more, we hope that this project will be able to provide some well deserving families, a stress free, fun filled, adventure. If you want to check it out, visit the Big Happy Tent link, listed on our page, or go to www.bighappytent.org
As for things here, were still not sleeping. Brady is really partying these days. He is averaging about 2hrs of sleep, per day, no nighttime sleep. He slept about an hour during the night, so maybe we can squeeze at least one more hour of sleep out of him today.
He really is doing well, despite the not sleeping. We seem to have good seizure control at the moment, we are so thankful for this. I think that we might actually be getting back to some sort of normalcy in our lives. I know that putting the word "normal", next to "our life", may make some of you think that we have finally flipped,lol. But, we are just enjoying ourselves, so much, these days. When Brady was having seizures all the time, we were constantly on guard, it felt almost, as if the seizures were our jail cell. Everything about our lives revolved around, when or if Brady was going to have a major seizure. Now, we are feeling much more comfortable letting Brady stay with his Maw Maw over night, or just for an hour. Were even considering having a night of camping, just for mommy and daddy, but that remains to be seen. We now can go riding the boats up river, and not have to be stressing over whether or not Brady is going to have a seizure, this has happened to us before, not a pleasant experience. Now, when we roll into a new town, we don't immediately start looking for the nearest hospital, just in case Brady ends up in status. Don't get me wrong, we carry our magnet and diastat every where we go, but just as a precaution, not that were expecting to have to use it. So yeah, life for our family, has changed tremendously over this past year.
Brady continues to develop new skills, and abilities on a daily basis. He has gotten so good about answering yes or no questions. He will stand in front of me, fussing, obviously trying to tell me something. I can start asking him questions, like "do you want a cup", "are you hungry", "do you want to outside",etc. He will answer appropriately every time. If it isn't a yes or no question, he will take me by the hand, and lead me to whatever it is that he wants.
I have been letting the leash out more and more these days. For the last two days, we have let Brady, walk with his brother, up to Maw Maw's house (shes our neighbor). It is the cutest thing, seeing both boys trotting up the driveway, heading to Maw Maw's. I always call ahead and let her know to be watching for them. It just cracks her up, to see Brady toddling up the drive way, looking so independent, and feeling so accomplished :) I think that allowing him more Independence, has been a huge step for me, its so stinkin hard!! But I have always said, that you can make a typical child, have special needs, if you smother them, and don't allow them experience new things in life. We have to learn to let the leash out, and let them make mistakes, this is how they learn. We have to allow them to learn, that if they fall, to get back up, brush themselves off and keep going.
I am looking forward to, and am excited, to see what the future holds for Brady, the possibilities are endless. Life is just one big adventure :)
Well, Brady is finally sleeping here next to me, but not sure for how long. So I'm gonna head on over to sleep town with him. If your reading all the way to this point, you have suffered through my ramblings, so thanks! Will post more later. Have a great day! |
posted by angelwings
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5:37 AM
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WOW!! Being a mother of a newly diagnosed daughter with Angelman, I am completely touched my this family. Their love and generosity is overwhelming. I may not be able to make this camping trip this year because of distance, but I WILL make it!!! What a BLESSING!!
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WOW!! Being a mother of a newly diagnosed daughter with Angelman, I am completely touched my this family. Their love and generosity is overwhelming. I may not be able to make this camping trip this year because of distance, but I WILL make it!!! What a BLESSING!!