Week from....

Wow. It has been an interesting week. It's been crazy! I don't even know how I made it to Friday!

Okay, Madi hasn't been sleeping well. I think last night was the best sleep I've had in a week.

I'm on some medication that makes me nauseous. Sleep deprived and nauseous? Yay!

Both girls have/had field trips this week.

Madi was bit by a zebra on hers. She's okay. Now she has a war story.... once she starts talking.

Oh and Madi is now sick too so she's on antibiotics. wheeee!

Both girls threw up last night but both of them are hungry this morning so, yay!

There's a trunk or treat tonight. I hope Madi can go but I don't want to expose her to the cold when she's sick. :/

And I have to take Madi with me to Lily's field trip, since she's too sick to go to school. I figure we only have to stay an hour, if need be. Geez Louise.

ummm

It might be Day 47? I guess no one really cares anymore. *snort*

I am so tired. This new medication for Madi has been one big debacle. And it's the week before Hallowe'en and I have STUFF TO DO. I am sitting here, two blinks away from sleep, trying to figure out what needs to be done for tomorrow. argh

Tomorrow, is Madi's first field trip. :) I think she's beating Lily, in that respect. Lily goes on her field trip Friday. wheeee doggies!

And I signed up for Trunk or Treat at Madi's school, Friday evening. I have to decorate the back of my car and hand out candy. Sweet mercy. I wanted to do stuff. Carpe diem. You never know what you'll be able to do next year. Do it while you can. :)

Did that make sense? I'm exhausted. But after this week, things should calm down. Should. *eyes*

Geez

So we've been trying the new medication and it's just not doing us any favors. Madi doesn't sleep so much as dozes all night and wakes me up frequently. It's awful. Using no medication was better, at least she'd sleep four or five hours at a time before waking up. This napping is awful.

I'm going to try and get in contact with the specialist. I'm pretty sure this isn't what he had in mind.

It's so funny because Madi had one really great day last week and that was it. I'm not sure if her body has to get used to it....?

Anyway, we managed to have some fun this weekend. If I find my phone I'll put up pics. :)

Day 45

So Madi did NOT sleep through the night. We saw the pediatrician today and her blood pressure is great so we're going to up her dosage. I guess that was the game plan all along. We'll have to go back in another week and make sure her blood pressure is still okay.

So I'm surviving this week. It's been Lily's birthday, new doctor's, new medication, gearing up for Halloween and field trips. It's been... something. :) Friday, as far as I know, I have nothing planned so. wheeee! I might get groceries. :P

This weekend I want to take Lily for a pony ride. And I think that's about it. Although, we might have to think about getting birthday presents for all the birthday parties coming up. Oi vey.

Oh and Madilyn took matters in her own hands today. And by matters, I mean poo. Pedro said she took her diaper off. Flung some poo in one direction and used the rest to play with in the toy corner. I was at an appointment. I asked him why he didn't stop her and he blamed Lily for not telling him.... *eyes*

Day 44

Well, I was having a little nap but someone decided to stomp around in the bathroom... Pedro's at work so that eliminates the usual suspect. ha!

We think Madi slept through the night. I didn't hear her and Pedro didn't come in to wake me up so... Her teacher said she had a fabulous day. She came to the "circle" on her own. Sat down on her own and actually tried to participate.

This is HUGE.

Yesterday, I thought someone was standing outside of my car. It was Madi, almost sounding like she was talking. :) She's getting so close! It might be why she had a few bad nights - making that next developmental leap.

Here's hoping.

Day... 42? 43?

Oops. Had a sick day and then skipped one so I'm not sure. I'll go with 43 and if anyone else is better at counting then you can correct me.

So Madi kept me up from 3:15 til almost 6. Pedro said she'd already kept him up for an hour before I got in there. Thank heavens for ear plugs, huh? This was with her medication. Poor thing. I was holding her and she'd fall asleep and then her body would spasm and she'd wake up again. We see the doc on Thursday and I'll let her know. I guess it could be seizures. She's done this since she was an infant. Her pediatrician figured that her nervous system was immature and it seemed like a decent explanation at the time. But now she's well over 2 years old...

However, in the good news department, she was playing with her toys and brought me a toy cup. This is huge because it's the start of independent play. They said that the PT was amazed at what Madi was doing today. She said Madi was doing stuff she wasn't doing 2 weeks ago. I don't know what those things are because I didn't get to talk to her.

And yes, today was Lily's birthday. It mostly came off without a hitch. I brought her cupcakes, juice, candles, plates, etc. Another mom brought pizza! How nice was that? I don't know why. Anyway, in true Sonia fashion, I showed up early and it was lucky. There are two teachers but they bounce around and help other rooms. So I was helping hand out the juice and pizza and just trying to keep up with everyone. Some of the kids have allergy issues so the other teacher was on the phone checking with parents and the other one had to help in another classroom.

It was just a good thing that I was there. :) ( Not that they can't do it without me, I'm sure)

I'll put pics up tomorrow. I have a busy morning in town. I'll be dropping the girls off and then racing around. wheeee! Thursday is also busy, so I'm holding out for Friday. :) I don't want to go anywhere this weekend. Oh and Lily has two birthday party invitations on the fridge so I guess things are just going to keep on being busy. :)

I'm trying to think.... I had a pretty set up in the dining room for when Lily got home. Fancy balloons held down by a little pile of presents. Hey, I tried. I didn't give her a big fancy party but she got a little party at school - WHICH SHE LOVED and then got the loot once she got home. And we took her out for Chinese food. whew I think she had a good day. :)

More pics (DER)

Alright, we'll see how this goes. I hate trying to write around photos in blogger... Oh yeah, I said it! Oh the little boy was trying to teach Lily how to fish.. in a rain barrel. :) Too cute. He was a little pistol. There were a few of us posted around the kettle keeping him from getting burned. whew













It was the most beautiful day. And I tried to capture that. I really, really did. Except for the wild creature in the lower corner. He kind of fits after all. :) He's related to Stacy and after a few years and a lot of medical treatments, his cancer is finally in remission. Seems wrong to be saying that about a 6 year old. I mean, I'm glad he's better! But he shouldn't have been so sick in the first place. Not fair.












The kettle! Where the magic happens. The guys had to keep it stirred constantly, for HOURS. And that, whatever it is, looks heavy. I declined my chance to stir. I honestly could picture myself knocking the whole thing over.















So Lily had her last ice skating class and complained the whole time that I was taking her boots off and getting her changed that she was starving hungry and needed food. She dragged me to the farmer's market and what did she eat? NOTHING She got her face painted instead. I swear. Did she ask me? Oh no, she just sat right down and told the girl what she wanted. She was VERY clear. It was hilarious. Little stinker.











Ahhh the finished product. I think we had almost 20 gallons of apple butter? mmmm I had some for breakfast. Haven't found a penny yet. I'm not sure why, but you have to throw pennies in it to keep it from sticking to the pot? Copper pot. It was fun. It was a beautiful day with a lot of fun people. :)

Pics (I mean, OBVIOUSLY)

argh

I know I dropped the ball for a few days. Sorry! It's been a crazy week. It's Lily's 5th birthday next week, so I've been practicing making her cupcakes for school. The teachers are going to let me bring in cupcakes to share with her classmates. I waited too late to plan a party. Again. Sigh. Did I mention this already? I'm so tired.

Anyway, we tried out the new medication for Madi. It worked the first night. She did sleep through the night. The second night, I had trouble splitting the pill and then I mixed it at the bottom of the bowl of yogurt instead of the top and I'm not sure she got it all. She did NOT sleep through the night last night. Oi vey.

So I think I got my act together for tonight. Here's hoping, or my butt will be dealing with her. Sigh.

Lily had her last skating class today. She is getting better but she's not quite ready for the next class. We'll put her in the same class level again and if she gets better she'll be bumped up. Sounds good. :) I really need to skate with her. I wonder if I should take the painkillers before or afterwards? Her teacher assured me it would all come back to me. Color me skeptical. I used to skate a lot! Every Sunday for a couple of hours and then rush home to watch Tarzan. How many of you remember those days??? :)

What else... Lily and I went to Stacy's house to help make apple butter. It's quite a production! Fire pit, huge copper kettle. I know it was a lot to do but I hope they do it again! Soonish. I'm definitely having biscuits and apple butter for breakfast. :) Pedro was kind of a sour puss and said that I'd have to deal with Lily when she got bored. Psha, I say. I knew Stacy's cousins' kids were going to be there. I had to drag her out of a mud puddle/pond so we could go home if that's any indication of how her day went. :) Huge property, lots of kids... She had a great day. :)

I, however, am about to drop. I had to prepare for today, last night. Got a chili in the slow cooker at 8am. That kind of stuff. omgosh. I hope I have a good sleep tonight. :)

Next week: Lily's birthday, and Madi's first field trip to a farm. (If it's not rained out) Whee doggies!

Day 40

I think. Another holiday messed us up. It looks like Madi had a good day. She was Feisty McAdams when I picked her up today. Lily had a good day but she's considering Carson boyfriend material now so that's a concern.... I mean, I chased the boys when I was 5. I didn't even think about boyfriends until I was 11? 12? She's 4@!

I haven't heard back from our pediatrician yet but I really want to get started on that sleeping medication. Madi had a good sleep last night, Pedro had to help her out a little bit. What if she got a good night's sleep every night? Would it help her development??? I hope so.

Well, I'm enjoying my moscato and my rotini with alfredo sauce and baked chicken. And snow peas! I read an article that vitamins aren't as helpful as previously thought so I made sure we all got our veggies and fruit today. And yes, I'm sure in 10 years time, vitamins will be amazing again. Remember when people used to tan with butter? ummm I guess we haven't gone back to that yet. hmmm Well, I had a point, dammit. Even if it was a tipsy bad one.

Finally

Madi and I (and Lily) went to KCRC. Fortunately, there was a playroom with an attendant so I left Lily there while Madi and I saw the doctor. I guess this guy was new because he was actually helpful. hahahaahh No, I mean, he really was. He said that he's seen a total of 3 Cris du Chat kids in his time practicing and he ain't no spring chicken. He said those kids are rare but rarer still are kids like Madi who have a partial deletion. He said it's only been in the last few years that the genetics tests have been good enough to detect anomalies like Madi's.

So he knows his stuff. Hurrah!

He encouraged me to go back to the genetics doctor and get more of an explanation. And also to go online and find parent support groups related to Madi's issues. He said because it's "new" sometimes parents have more info than docs because they've already tried so many things. There's no framework in place to treat someone like her. I've basically got all bases covered.

And I adored him because he said there's nothing that I can do to make Madi sleep. Yes, a routine is important but her sleep issues are neurological. He wants me to be more aggressive in treating her sleep issues because sleepy time is when kids develop and grow. Not to mention, we're all one step away from being zombies. He recommended a drug to help keep Madi asleep. I'll use the melatonin to get her to sleep (if needed - usually it's not) and then the other stuff to help her stay asleep. I can't remember the name of it. lol

I was up til 2:30 coughing. I have my own prescriptions to pick up. *eyes*

So yeah, I'm not disheartened that there's no way of officially treating her because I already had a sense of that. We'll keep up with school and hopefully take whatever comes. :)

Skating

So, yes, Lily still goes to skating lessons but since she wears the same thing every time, it seems useless to take pictures. She's doing better. She doesn't fall down but she doesn't move very fast either. I'll need to bite the bullet and skate with her. Am I the only one who sees this as a huge mistake? It's been decades since I last skated and there are no cute analogies about never forgetting how to skate. I'm pretty sure I have no idea and I'm also sure I might crack the ice with my big butt. There I said it.

Lily and I did a lot of shopping today too. Oh and I had my car fixed. There was a recall thing and I noticed that my gas mileage improved dramatically today. *eyes* Then we went to Target and I spent way too much money. But I needed another winter comforter. It gets very tense at my house in the winter time. :[

Then we got groceries and poor Lily was crying the whole time. Not sobbing but just so tired and sore. Poor thing. I got her some gum for being a good sport. Hey that's a big deal to a 4 year old! Daddy and Madi were already home by then so we kind of dragged ourselves back.

I guess that's it. Lily is hovering over me waiting for me to play with her. Pedro is asleep. Madi is watching tv. Yeah, I'm a great mom. :)

Day 39?

I wonder if I should even keep on counting...

So life is crazy. I guess I don't mean that in a bad way. I mean, it's mostly good stuff. Car recall, Madi school field trip, Madi doctor's appointment, Lily's birthday. my doctor appointments. I'm glad that we can all get the care we need. I'm not really making much sense. Of course, as sleep deprived as I am, I rarely do.

Life is just so busy with two little kids and I'm getting the sense that it will become busier. I talked with another mom yesterday who told me that there this is still room in a ballet class at a local gym. I know Lily wants to do ballet but holy smokes, I already feel like we're on the run all the time.

I'm debating whether or not to put her into a second skating session just because I'm so darn tired! I guess I need to such it up and be a mom but... I think I need to book myself a two hour massage.

And Madi has not been sleeping well. We're not sure what's going on this time. I'm glad that we take her to the specialist on Monday but as I've learned, just because you see a specialist it doesn't mean you're actually going to get any answers or help. But I go through the motions because I figure this is laying the ground work for whatever services she might need in the future. *exhale*


******

hahahahaha I meant suck it up. I am tired.

Day 38

Fortunately, no one was killed with carpentry tools. I found my book.

Ugh. One of the kids in Madi's class has started talking. Last week he said "mama" this week he said, with difficulty, "bye bye Madi". It was more like, "bye bye Dee". But still. I'm like, COME ON MADI!

ARgh

She is understanding more and more and copying our laughs so... argh

She's a great kid and good at problem solving. I don't know why speech is an issue. Okay, I know the OTs have said that if a kid is low tone it's a lot of effort to talk. But she runs around kicking a soccer ball now! She's not all that weak!

I think Lily had a good day at school. She's being kind of coy about it which means she probably got in trouble. If it's something big then the teachers let us know. I'm working with her teachers to have a very small birthday celebration for her. I left it too late to plan anything (again) so I thought if I bring in cupcakes, and they sing her a little happy birthday song, she'll be thrilled! She said all she wants for her birthday is cake so.... :)

Day 37

I think. Still not a lot happening. Madi goes to school. Does her thing. Comes home. Does her thing. Still no talking. It's kind of frustrating. And she's not sleeping well right now.

OMG I'm having a rough time with my pedometer. It has a really small screw to put in the battery so that took a while for me to take care of. Now I have the battery in and the freaking instruction book is gone. Do you ever just want to take a hammer to everyone's head? GAH

Day 35, sick sick sick

Pedro is still sick. He has an infection that I won't go into but he's been very ill and is now on antibiotics.

Madi was screaming and pulling at her ears so I had to go and pick her up from school. No fever, no ear infection. Just a little sore throat. I think she found a way to get mommy to school...

I have the same sore throat and I ran today so it's not THAT bad. Lily is the only one of us that is healthy so I was working her like a dog today. Just kidding. She has been really helpful. She did get to play outside with the neighbors' kids for a while. I think they're in middle school or highschool but they have fun.

Anyhoo, I have to sleep with both girls again. Pedro sweated through his sheets last night and expects to do the same tonight... I know it's not his fault that he's sick but my workload is maxed. argh And we don't know what or how he got his infection so he needs to be apart from the girls for another day at least. :p

Yay us!

In the good news department, I did enjoy sweeping off the back deck today and I managed to pick up some dead branches. I have some free time and I still do work. bah!