Monday, September 21, 2009

Thankful for every morning

I love mornings.

Don't get me wrong; I'd like to sleep until noon every day, if I could. Instead, I wake up between 5:30 and 6 a.m. and spend 15-20 minutes getting myself ready for the day. Then, I get to wake up our household, one beautiful face at a time. Jay, then Katie, then Maggie & Lainie, and Natalie is usually last. And with each child, I say a little prayer of thanks to God that we get another day with these exquisite creatures.

I will never forget that drive to Kansas City, while Lainie was being flown there. We had no idea if she'd survive the flight or, if she did survive, what we'd find when we got there. I spent a good part of the drive praying, begging, pleading God to save my baby, to please not take her away from us. I promised that we'd take her however we could get her, knowing, expecting that she would have severe brain damage. (After all, her oxygen stats were in the 70s for a long long time.) I think, every 3rd or 4th beg, I would add "thy will be done but please oh please let thy will be to keep her on earth."

I remember arriving at Children's Mercy, meeting my uncle in the PICU, waiting to get back to see her, shaking with fear and exhaustion, gowning up as we entered the strange room, and THANK GOD, seeing Lainie start fighting the machines as soon as we started to talk. It gave us hope that she was still okay in there, that she recognized our voices, even in her coma.

And we've been thanking God ever since. For every word spoken, sign learned, progress made, step taken...and for every morning we've been gifted.

I still get scared, worried about what health curveball Natalie's going to throw us, worried about how Lainie will manage this flu season. I've talked with another mom, whose daughter is equally fragile. And I've adopted her words:
We can't know what the future will hold; we can only enjoy each and every day we've been given.

Thursday, September 17, 2009

Not so neurotic

So, I guess there was something up with Lainie. Last night, we put her to bed at 9 and she was fine. At 10, I heard a strange, strained cough on the monitor. I ran upstairs and she was doing this weak, tight cough and not breathing well. She'd cough twice, wheeze in an inhale, cry, and repeat. It took me all of 2 minutes to say that it wasn't normal and wasn't something we could treat at home. So, off the ER we went.

I'm glad we did. Her oxygen stats weren't great when we got there. After two breathing treatments, some cough syrup, and an x-ray to rule out pneumonia, we went home. Officially, it's something viral, resulting in croup. She feels better once she gets the breathing treatments, but is still needing them every 4 hours or so. And no seizures...that's the good news!

I can't imagine how scary croup must have been in the pioneer days, when they didn't have medicine to treat it, when croup meant a night in a steam tent with boiled onions. Thank goodness we don't have to experience that.

And again, no seizures!

Wednesday, September 16, 2009

What's normal?

I kept hedging on posting this, but finally decided my own personal blog is the perfect place to be neurotic.

Lainie had a headache this morning...I think. She was crying, sobbing with a little scream in it, starting at 5 a.m. I thought she was just having a bad dream, so I brought her to bed with me. But, she kept crying every 15 minutes or so, and when I got up at 5:45 to feed N, she started just schreeching-sobbing, even though Jay was with her. Finally, at 6, I got her to respond to my questions, and she signalled that her head hurt. 20 minutes after some motrin and she was up and about.

For normal kids, this would just be a headache and a bad morning. For us, it means I'm on edge all day, waiting for that call that she's had a seizure. It means Jay teaches today with his cellphone in his pocket, because he's half the distance to L that I am. It means I called the school to let them know she wasn't feeling great this morning. It means I start wondering if the different generic medicine is causing problems.

It's just a headache!

But, normal for us has been different for a long time. A normal cough in someone else's child meant two weeks of nebulizer treatments for Katie. A normal earache in someone else's meant a blown eardrum for Maggie. And now, a normal illness in someone else's means to be on guard for a seizure. And even Lainie's seizures aren't normal. A tonic-clonic aka grand mal seizure lasts a minute, on average. Her shortest was 5 minutes, longest was 90.


Sometimes being abnormal is a great thing. Katie is abnormally kind and respectful. Maggie is abnormally smart. Lainie is abnormally capable. (Considering how long she was in a state of status epilepticus, she should have much more brain damage than she does. Thank you, God.) And Natalie, just so she's not left out, is abnormally smile-y and social.

We'll take our abnormalities and relish them!

Wednesday, September 9, 2009

Tough love

Being a mom is hard. Being a mom disciplining your kids is harder. Being a disciplining mom of a child with a severe speech delay, well, it just sucks more than average.

I don't know if I'm being too hard on Lainie. I don't think I'm expecting too much out of her. I am expecting just a little less from her at this age, than I expected from Katie and Maggie at this age. I am trying to give her a little leeway, knowing she's really getting frustrated with the speech problem, lack of intelligible words, stuttering, comments from strangers (PEOPLE, she is mute, NOT DEAF. Stop breaking my little girl's spirit!)


...when she looks me in the eye, bats her little eyelashes, smiles a little smile, and completely ignores my directions...well, she needs to be disciplined some way. I think. Or not. I don't know.

I don't know if this is the terrible threes or manifestation of her frustration or a result of changing manufacturers of her anti-seizure medication or exhaustion from the preschool/speech/preschool/speech/daycare schedule. I do know we do not allow our kids to run in the parking lot, no matter how much you scream. I do know we do not allow tantrums, especially not in the aisle of a store because I said no to a purchase. I do know we do not allow you to screech at your sister until she gives you what rightfully does NOT belong to you. I do know we expect you to, at minimum, learn to STOP when we say STOP. And don't close your eyes when I'm signing to you.

And I know we need this to be a short-lived stage.

Because, the secret is, I hate being the mean mommy.

Saturday, September 5, 2009

Weekly menu

This week I'm trying out a few money-savers but not necessarily time-savers. I'm going to see how hard it is to make rice that isn't minute rice, and baked beans that aren't from a can. Beans and rice in a bag are really cheap, so if we can substitute some of the canned stuff with the bagged stuff, that should save some moola. I'll let you know how it goes.


Ham and cheesy potatoes
Fried rice

Monday (Labor Day)
Scrambled eggs
Ham sandwiches, chips
Grilled steaks, potatoes, corn on the cob

Blueberry muffins
Beef stroganoff

Grilled cheese with ham

Cheesy quesadillas
Baked corndogs

Breakfast burritos
Out (I'm required; it's a work lunch!)
Hamburgers and fries

PBJ toast

Friday, September 4, 2009

No fork allowed

Ah, my secret tool, the trick to get kids to eat anything you want...make it crazy. For us, "crazy" can be as easy as no forks allowed. They get a kick out of it when I tell them, "whatever you do, do NOT use a fork. NO, NO FORKS! You MUST eat with your hands! You MUST, I say!"

Our No-Fork-Fridays usually consist of cherry tomatoes, cut up broccoli and cauliflower, sliced apples or peaches, grapes, crackers, cubed cheese, homemade fries and oven-baked chicken nuggets. I put it all on fancy serving trays in the middle of the table and let the kids make their own plates, with the requirement that they take at least one of each item. Then add salad dressing, ketchup, and barbecue sauce for dipping.

The other part of this secret: I like it as much as they do!

Beef Stew

I feel like a slacker, or out of the loop, either one. This week was the first time I made beef stew that wasn't in a crockpot...and it was delicious! Give it a try; it's perfect for a cool fall day. I think mine was even better because I used our home-raised beef, our homegrown potatoes, carrots, and onions, and Jay's mom's homemade ketchup.

1-2 tablespoon oil
1 pound beef stew meat, chopped (or get a cheap cut of beef and cut into pieces)
3/4 cup flour
salt, pepper to taste
2 cups water
1/2 cup chopped onion
1 tsp minced garlic
2 beef bouillon cubes
5 medium potatoes, diced
3 carrots, chopped
1 tablespoon A1 sauce
1/4 cup ketchup
2 tablespoons flour
1/2 cup water

Heat the oil in a large pot. Meanwhile, mix flour, salt, and pepper in a bowl. Roll the beef in the flour mixture. Add the onions, garlic, and beef to the pot and cook until the beef is just browned, stirring often. Add the water, bouillon cubes, A1 sauce, and ketchup. Bring to a boil. Boil for 2 minutes, then reduce heat to simmer.

Simmer, stirring occasionally, for 1 1/2 hours. Add the potatoes and carrots. Simmer for another 30 minutes, or until potatoes and carrots are tender.

Increase heat to boiling. Mix 2 tablespoons flour in cold water. Stir flour mixture into the boiling stew, and boil for 2 minutes.

Serve and enjoy. (Makes FABULOUS leftovers!)

Wednesday, September 2, 2009

More Firsts

Today is Lainie's first day of school for this year, and she is excited. She came down the stairs this morning, proclaiming, "I wake up! I wake up! Go to school!" She looked adorable in her Dora the Explorer shirt and Dora backpack. Right now, I'm guessing she's listening to a story or making a craft. I'm confidant she's having fun and getting that fabulous interaction.

I have so much faith in our school district! At her daycare, there are 3 kids who need transportation to school, and one of them is in a wheelchair. So, the district sends a van just for that one stop. Then, they had another guy come from the bus barn to help get the wheelchair in the van and make sure it all worked well. AND, because of Lainie's history of seizures, they require a paraprofessional ride in the van, too, in case she would have a seizure on the way to school. So, for three kids, this morning, there were 3 adults to help. How's THAT for a ratio!

And the other first? Natalie's started rocking on all fours. She was getting in the plank position last week, but last night she continually got on all fours and rocked back and forth. This is extra exciting to us because it shows her Gumby foot doesn't hurt her mobility and it's months earlier than her sisters did it. Way to go, Natalie!

Tuesday, September 1, 2009

Nightly ritual

Yesterday was Lainie's follow-up appointment at Children's Mercy, and our first chance to talk to the neurologist about her diagnosis. He explained that the abnormal activity on the EEG was in the frontal lobe, and that she has generalized epilepsy. (I guess there are different kinds.) Optimistically, he said that she has all the check marks to hope that she'll outgrow this. We'll continue as-is for three years, as long as she doesn't have any seizures. After three seizure-free years, she'll get a repeat EEG and maybe start weaning off the medicine. That was good news to us!

A lot of people ask how we get her take those pills every night. She's so fabulous, it's no work at all: