Sunday, April 24, 2011

Update ...

So I talked to Madi's doctor, Dr Smyth, Friday evening and she helped me with a lot of my fears. She said our goal is to help Madi be the best that she can be and the early intervention will help with that. I did receive a letter from the developmental pediatrician and he's recommended that Madi get into that special program. So.


It would be so good for all of us. She'd get the help that she needs and I would be able to get caught up on my own things.

Now to Lily....

Lily took off this afternoon but I didn't know because I had told her to stay on the back deck. There was a knock on the back door and a young teenage girl asked if it was okay that Lily was at her house. *FACE* She's very nice and her name is Virginia. I let Lily go and hang out with her and her mom for a while. I peeked out every now and then and Lily seemed to be having a great time. Virginia gave her a barbie. Lucky Lily. *face* I swear we were out shopping last week and one of the cashiers gave Lily money because she was cute.


Anyway, so Virginia seems pretty responsible. She even shook my hand when I told her my name. I didn't know people under the age of 20 still did that. Anyway, I asked her if she was interested in baby sitting! ha!

Lily cannot stop talking about this girl. But she did have to be punished for taking off so... I ate some of her Easter Bunny. WHAT?

(the top pic is Claire, Madi didn't participate in the Easter Egg hunting)

Wednesday, April 20, 2011


Well, we went to the see the Developmental Pediatrician today. I'm not sure what I was expecting but I think I thought I'd get some answers. He seemed glad that Madilyn is going for genetic testing on Monday. He didn't have any ideas about why she is the way that she is.

I was hoping for a little more.

Madi did get evaluated by their educational coordinator. She seemed pretty concerned (she said she was) about Madi's inability to communicate. No, she doesn't talk, but she doesn't point or nod or whatever, either. She put Madi's communication at an 8 month level. Which is hard to take but it's realistic. She put her cognition at likely an 11 month old's level.

Sad? Yes.

But she used the standardized testing that the schools use so now Madi is very likely to get in with the preschool program in Fluvanna. It's all day and very intensive. They have a PT and an OT there two days a week. The class is small and they work on everything that Madi needs help with.

I'm so frustrated. I have probably tried 100 times to get Madi to point to her nose. She's done it a few times but, as the tester noticed, there's no consistency. The only things that Madi recognizes consistently are "no" and "high five".

That's enough to get by on, right?

So tomorrow she goes to be fitted for braces/inserts to help support her ankles. I think she's keen to get walking because she "walks" around on her knees yelling. That's a good sign.

So what does all of this mean? I don't know. The teacher/tester said that there seems to be some sort of block between what we're saying and what's getting through to Madi - hence a hearing test on the 12th of May. Is her brain damaged? Is there a learning disability? We don't know.

That is frustrating.

My biggest fear is that she'll be like this forever.

My silliest hope is that she's actually a super genius and doesn't feel like our conversations are interesting enough.

Wednesday, April 6, 2011

I've been...


I try really hard to lower the costs of living for my family. Really hard. I'm the light turner offer in my house. I get a twitchy when I see a light on and it not being used. I know I'm bad about leaving my computer on and so even though it has a sleep mode, I still try to turn it off if I'm not going to use it for an hour. I turn the water off when I'm washing my hands or brushing my teeth, etc.

Basically I do all the little things that they tell you to do. Which reminds me, I need to call US Cellular and get them to turn the internet off of my cellphone. I never use it. :/

So food. It costs A LOT. So I try to think of ways to get those costs down as well. But you know, the rules have changed. It used to be, when I was a kid, that you could make a meal for less than you could buy one. I remember apples used to be $.25. Now they cost $1. And I can get a box of mac n cheese for $.57. I mean, money-wise, what are you going to buy to save money? But what's healthier?

I don't like buying the crappy food anymore than anyone else but dang, healthy food is getting more and more expensive. Or so it seems.

When I project how much a dish will cost, it almost always seems cheaper to buy the manufactured item. When did that happen??? I know some crops in the states are heavily subsidized, like corn. I hate it. I mean the whole food system seems to be forcing people to buy the crappy processed food, or to grow their own. Well, I'm going out to buy pots and soil today and I'm going to try my hand at gardening. We've tried before, halfheartedly. But now, as they say, it's on.

Maybe I just have no idea what I'm doing. But I try to find cheap but healthy meals to make and when I go to get ingredients... whew! I feel like I'm competing against an industry with a Dollar Menu. Well, I can't compete. Even with vegetarian meals!

So, I don't know. Am I the only one with this problem? Sugar and flour and expensive so even baking my own treats costs more.

I find this all very frustrating. Aside from growing my own food, does anyone else have any ideas??


I did save almost $110 on our last shopping trip which makes you wonder how much they mark everything up....

Tuesday, April 5, 2011


I guess we'll take whatever good news we can get, right? Madi's started falling asleep by herself. I did give her some benedryl because it was after midnight and I needed her to sleep but she did it without me holding her. YAY! Oh and don't get me wrong - she still wakes me up at night but for briefer periods of time and she doesn't always need me to get back to sleep. She usually wakes up for a drink.

So progress. Slow progress but progress nonetheless. She's also started kissing us. She grabs Pedro's face and plants one on him. She grabs my hair, laughs while I scream and then kisses me. I've tried to just treat her like a kid her age who has met their milestones. When she hits me, I tell her no, and she actually stops. We may have coddled her more than Lily, I don't know.

I'm getting kind of tired. I had a lovely turkey sandwich but I'd like about 4 more of them. Sigh. And guess when I had a heart attack today? I left madi on the sofa and when I came back. Little fart. Oh and also in good news, I've been running a mile and a half at the gym. Not all at once mind you but I'm getting there. I never thought I could run. Glad that I had a trainer show me!

Friday, April 1, 2011

Pity: Party of 1

So I'm having a crappy day. Madi kept me up from 5:30 til 7:30 and then blissfully fell asleep and stayed asleep right before the alarm went off. *eyes* It's frustrating because she can't tell me what's wrong, because she doesn't talk. I don't know why she can't sleep and it just gets everyone irritated (Pedro came in the room to see if he could help).

We see a lot of people this month: developmental pediatrician, genetics guy, physical therapist.

There's a general consensus that Madi is delayed and not just a little. It's so hard as a parent because for the longest time I could think that maybe she was on her own schedule but it's getting to the point where I have to think that I might be caring for her a lot longer than I anticipated.

Which is depressing as hell.

I did have shingles during my 3rd month of pregnancy and I've researched a bit and that is considered a cause of microcephaly. And boy does she have a small head. It IS growing on a curve and hopefully it stays that way.

You know, I keep on hoping that one day she'll just start talking or start walking or doing anything, something. But she just shows no interest and if I try and engage her in something she gets angry and slaps at me.

I'm just not sure what to think.

I love her but she's a burden. I can't leave her alone for 2 seconds without her crying. So I have to pick her up and carry her everywhere. Sometimes I just have to leave her crying because mommies have to use the bathroom too.

Obviously there are things we can rule out. She doesn't have Down's or autism. She is social and likes to smile at me and her sister. At this point all I can say is: boy am I glad for that. I'm grateful that she's not severely retarded or is missing limbs or something. Hopefully with intensive intervention she will learn to do some basic things. I'd just like to know why this is happening and what I can do about.

I also hope in six months I can read this and think - man, I had nothing to worry about.

But right now I feel like I'm even losing hope for that. :/