Tuesday, April 30, 2013
Monday, April 22, 2013
Results. Finally.
Lucy's mutation is a de novo mutation. Unfortunately, this may mean that her Dravet Spectrum disorder may be worse -- but on the bright side, we do know that other people in the family that plan on spawning have little to worry about.
Friday, April 12, 2013
Tuesday, April 9, 2013
Monday, April 8, 2013
WEIGHT GAIN, Y'ALL!
Lucy gained 1.4 pounds.
In three weeks.
I KNOW.
We'd like to thank the Academy, Larabars, whole milk, and an increase in her activity level which is in turn leading to an increase in her appetite. Not only does she eat three meals a day, but she also eats a snack.
In three weeks.
I KNOW.
We'd like to thank the Academy, Larabars, whole milk, and an increase in her activity level which is in turn leading to an increase in her appetite. Not only does she eat three meals a day, but she also eats a snack.
Sunday, April 7, 2013
Conspiracy theorists and nutjobs
Well, I have news, but it is not news.
I sent an email to the genetics counselor, and she let me know that the tests are done, and the report is being finalized, and they will be sending the results along next week.
So . . . to me it sounds like she knows something, and isn't telling. Or am I now the conspiracy theorist?
And, my husband's family came to visit last week. They were on the road longer than they actually visited. I will explain:
They are in ill health. Very. My sister-in-law doesn't walk (and yes, that is the correct word) and my mother-in-law has a lot of problems walking, and my father-in-law has mental health issues and no teeth and is in failing health. None of them can drive long distances, and we live 7.5 hours away.
In their town, there is a small town hospital. And 45 minutes away, there is a Baptist hospital, which is actually the first hospital we ever took Lucy to when she was seizing. The doctor there didn't even bother to examine her -- he listened to us and told us to put her in the car and take her 90 minutes by car to the University hospital, because there was nothing he or anything closer could do. And the ambulance was out on a call and would be too long to get us there. So we won't go to them, because we can't get Lucy to adequate medical care in adequate time. (To add it all together, Lucy is 2:15 from a decent hospital at their house.)
We offered to meet them halfway at a town with a decent emergency room.
And then, they said they wanted to come to us Easter weekend. Friday night to Sunday midday. So we said, "okay." And then they said they got rooms at a local motel which I won't name but rest assured I tried to tell my husband to get them to go elsewhere.
They would not. It is a sad, sad, place. Okay, it's a shithole.
So they arrive on Friday. (They make my 22-year-old nephew drive them. Poor guy.) We meet them at Cracker Barrel. We eat. They want us to come to their room. We discover that the manager has offered them a hell of a deal: You four pack yourself into one room with two double beds and it'll be the one room charge plus $10. They can't pass it up.
We convince them to come to our house, because Lucy will be much more comfortable. My SIL still says she cannot walk at all and therefore cannot navigate the stairs to the living room so she drives her Jazzy to the playroom. We all sit in Lucy's playroom. It's so fun.
The next morning, we have planned to go to the park so Lucy can enjoy the ducks, the Easter Bunny, have her face painted, and look at the kids.
Travis gets a text Saturday morning that they want to leave asap. The room is uncomfortable. Nobody slept.
So we go to the park (it's packed, natch) and they won't get out. I tell Travis that we'll try it next year, because I don't want to be rude to our guests but jeeeeez. So we come back to the house and we all sit in Lucy's playroom again. It's so fun. (This time, however, my sister-in-law WALKS into the house. It's an Easter miracle.)
Because it's also my mother-in-law's birthday, we do lunch. We can't go out, obviously, because they won't go anywhere, so we have to bring lunch to them. As options are now limited, we are left with Pizza Hut and Papa Johns. We ask if anyone has a preference and they all say they don't care. I opt for Pizza Hut because Lucy does have a preference.
The pizza shows up and my nephew begins mentioning how much better Papa Johns is. Lunch is just uncomfortable for everyone. Travis and I surprised my mother-in-law with a cake. My sister-in-law, the best and most awesome peach that ever lived, posted a picture to her FB page as though she bought the cake herself.
And then they left. Fortunately, Lucy is not yet old enough to understand, I hope, that they did something hurtful. But I am going to have to be a little more diligent about protecting her from this in the future.
And there you have your nutjobs. Also your assholes.
I sent an email to the genetics counselor, and she let me know that the tests are done, and the report is being finalized, and they will be sending the results along next week.
So . . . to me it sounds like she knows something, and isn't telling. Or am I now the conspiracy theorist?
And, my husband's family came to visit last week. They were on the road longer than they actually visited. I will explain:
They are in ill health. Very. My sister-in-law doesn't walk (and yes, that is the correct word) and my mother-in-law has a lot of problems walking, and my father-in-law has mental health issues and no teeth and is in failing health. None of them can drive long distances, and we live 7.5 hours away.
In their town, there is a small town hospital. And 45 minutes away, there is a Baptist hospital, which is actually the first hospital we ever took Lucy to when she was seizing. The doctor there didn't even bother to examine her -- he listened to us and told us to put her in the car and take her 90 minutes by car to the University hospital, because there was nothing he or anything closer could do. And the ambulance was out on a call and would be too long to get us there. So we won't go to them, because we can't get Lucy to adequate medical care in adequate time. (To add it all together, Lucy is 2:15 from a decent hospital at their house.)
We offered to meet them halfway at a town with a decent emergency room.
And then, they said they wanted to come to us Easter weekend. Friday night to Sunday midday. So we said, "okay." And then they said they got rooms at a local motel which I won't name but rest assured I tried to tell my husband to get them to go elsewhere.
They would not. It is a sad, sad, place. Okay, it's a shithole.
So they arrive on Friday. (They make my 22-year-old nephew drive them. Poor guy.) We meet them at Cracker Barrel. We eat. They want us to come to their room. We discover that the manager has offered them a hell of a deal: You four pack yourself into one room with two double beds and it'll be the one room charge plus $10. They can't pass it up.
We convince them to come to our house, because Lucy will be much more comfortable. My SIL still says she cannot walk at all and therefore cannot navigate the stairs to the living room so she drives her Jazzy to the playroom. We all sit in Lucy's playroom. It's so fun.
The next morning, we have planned to go to the park so Lucy can enjoy the ducks, the Easter Bunny, have her face painted, and look at the kids.
Travis gets a text Saturday morning that they want to leave asap. The room is uncomfortable. Nobody slept.
So we go to the park (it's packed, natch) and they won't get out. I tell Travis that we'll try it next year, because I don't want to be rude to our guests but jeeeeez. So we come back to the house and we all sit in Lucy's playroom again. It's so fun. (This time, however, my sister-in-law WALKS into the house. It's an Easter miracle.)
Because it's also my mother-in-law's birthday, we do lunch. We can't go out, obviously, because they won't go anywhere, so we have to bring lunch to them. As options are now limited, we are left with Pizza Hut and Papa Johns. We ask if anyone has a preference and they all say they don't care. I opt for Pizza Hut because Lucy does have a preference.
The pizza shows up and my nephew begins mentioning how much better Papa Johns is. Lunch is just uncomfortable for everyone. Travis and I surprised my mother-in-law with a cake. My sister-in-law, the best and most awesome peach that ever lived, posted a picture to her FB page as though she bought the cake herself.
And then they left. Fortunately, Lucy is not yet old enough to understand, I hope, that they did something hurtful. But I am going to have to be a little more diligent about protecting her from this in the future.
And there you have your nutjobs. Also your assholes.
Tuesday, April 2, 2013
This is my last nerve.
Still no results. Also, they are coming for our EDCD screening tomorrow, and so I am nervous, and also today I am having a root canal, so the title of this post is marvelously apropos.
This is a big pile of whine.
I hate having people in my house, and I hate paperwork, and I really hate root canals, I think -- except I've never had one.
This is a big pile of whine.
I hate having people in my house, and I hate paperwork, and I really hate root canals, I think -- except I've never had one.
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