Tuesday, July 14, 2009

Busy Day

Today was the first week day I haven't had a nurse in a very long while. Brandy usually works four days a week and Jennifer works the day that Brandy has off. They've coordinated those days so that for the past few months or so, I've had their help Monday through Friday. Aren't they great?

Well, today Brandy needed the day off and Jennifer couldn't work. Which was fine. Really! I've kind of been looking forward to it. It's days like today - that while they completely wear me out - make me feel more "normal." Of course, I still needed help. Thank you very much Nancy, Kelly and Charlie! So, here's what our day was like:

6:15am - Cooper wakes up. Tom's at the gym. I get up and feed him and start to pack the bags for the day.

7:30am - Start Harlie's breathing treatments. I will be SO glad when I don't have to give her anymore breathing treatments! I've been giving her two breathing treatment meds, twice a day (sometimes every four hours) for 2+ years! But I digress...I take a shower and get ready.

8:00am - Cooper wakes Harlie up by crawling into her room, standing up next to the crib and yelling at her. She wakes up with a smile (definitely NOT the reaction we get when we wake her up).

8:00am - 8:30am - do "normal" routine for Harlie, while stopping constantly to tend to Cooper. Harlie uses the potty twice. Potty training is going great! Murphy gets dressed in his swimsuit for swimming lessons.

8:30am - 9:10am - I feed Harlie the first half of her feeding plus her meds. Huge pooping fiasco (Harlie). And boy is Cooper FAST! It is a miracle that he did not get "dirty" if you know what I mean. Potty training sucks! Especially for a girl that doesn't look like she can control her bowels.

9:15am - I make three trips to the car - then go and get the kids. Throw three kids in the car, get them buckled in and drive to Murphy's swimming lessons.

9:30am - Drop Murphy off at swimming lessons. Finish Harlie's feeding. Then leave to go to Nancy's house (my brother's wife, who, luckily, lives just a mile down the road from Murphy's lessons).

9:45am - Run Cooper into Nancy's. Give her his bottle, bed, portable high chair seat, diaper bag, and him. Run back to pick up Murphy from his lessons.

10:00am - Pick Murphy up, then put the kids back in the car and go back to Nancy's house. Drop Murphy off to hang out with his cousins.

10:15am - Take Harlie to speech therapy.

10:30am - 11:30am - Sit in speech therapy with Harlie. Give Harlie her water flush (goes in the g-tube). Harlie goes to the potty - twice! Potty training is going great!

11:45am - Go to Nancy's to pick up the boys. Then re-load the car with all the gear and all the kids.

12:30pm - Come home. Feed Cooper and put him in crib for a nap. He doesn't sleep and cries off and on for 45 minutes. While he's crying - but perfectly safe - I feed Harlie and myself. Harlie has more pooping issues. Potty training sucks!

1:15pm - Feed Cooper - again (he must be going through a growing spurt). And put him back in bed. This time he goes to sleep. Ahhh.

1:30pm - Put Harlie down for her nap. I finally get Murphy to eat his lunch.

2:00pm - 3:00pm - I give Harlie her water flush (2pm). Vacuum downstairs and straighten up. Then give Harlie her 3pm meds and first half of her feeding.

3:00pm - 4:00pm - Cooper wakes up, I feed him again. He eats a big piece of chicken and a whole bunch of other stuff. Definitely going through a growth spurt! I also work with Murphy on an activity book. He tells me he would rather watch tv. Dr. Phil is on answering all our parenting questions. None of them are my questions. Shucks. I give Harlie the rest of her feeding, and get her up from her nap. She goes potty. She's got the peeing thing down pat. If only the rest of it could be that easy.

4:00pm - 5:30pm - Murphy goes outside to play. Ahhhh...

5:00pm - Give Harlie her water flush. And do a feeding trial (with Cooper crawling all around my legs). She eats 19 grams and overall, does great.

5:45pm - Tom comes home and we get dinner on the table.

I can't write any more detail. And I'm sure you don't want to read anymore. I bet that was torture! Sorry about that. But, I'm not deleting it now that I've spend the last 15 minutes typing it.

But, we did manage to take Harlie's front panel of her crib off so she can crawl in and out like a big girl. I've tossed this back and forth in my mind for a while. Heck, Murphy had just turned two when we put him in a big bed - and he went straight from the crib to a twin bed - with no problems. I would have rather done the same for Harlie. But with her being connected to stuff, I just haven't been comfortable. But now that she's off the night feedings, she's only on her trach collar and pulse ox monitor, so I think it will be okay. She knows she's wearing the trach collar and that she can't walk around like that. So, I don't think it will be a major problem. We'll just have to see. And with us having night nursing, I thought now was as good of a time as any. So, here it is:

If you click on the picture, it should get larger. She's getting her hair cut tomorrow! It is too long and it's getting in the way when we change her trach ties. I just hope we don't lose her curls!

Tomorrow will be worse busy-wise - but I'll have Jennifer's help. Harlie has her "testing" with the County for her transition into the school system. From birth to age three, her services are through Early Intervention. Then the child goes into the school system to receive services. I haven't even begun to learn what I need to. I'll do that soon, though. All I know is that we go to an elementary school for "testing" tomorrow. I have no idea what to expect. I'm thinking that it's more of an evaluation than actual testing. I mean, it's not like a pass or fail - at least I don't think it is. I think they just need to assess where she is so they know where she needs to go and what services she needs, etc. Either way, I'm still nervous. I just don't like new people coming in and studying her - it just feels weird. And I've heard some horror stories, that's for sure. It seems that most moms really have to fight to get their children what they need in the school system. I'm trying to keep an open mind, but sometimes that's hard. I just hope that she shows them what she knows. Kids don't always cooperate under pressure. Most people can relate to the "say bye-bye" and the kid says "bye-bye" the second the person is out of ear shot. Now multiply that times a thousand and have that moment be the key to her future! Okay, so maybe not her entire future. But, still.

Well, it's late. More later!


Susan said...

Good luck tomorrow. Luckily I think you don't want her to do "well". They need to be enough delayed in enough areas to qualify for the special pre-school. We'll be going through the evaluation process soon. We had our transition meeting last month. Scary. But it'll be okay.

BTW. Ainsley has the very same bed skirt and her "room" looks similar. Although it's really an alcove in our bedroom. Which is ideal since we don't have a night nurse anymore.

Jennifer and Elizabeth said...

Wow Christy....u had a busy day and that is putting it lightly!! You are much braver then I am. I didn't take the side off Elizabeth's bed until her trach came out. Of course she gets night feeds and is in a regualr bed now, but she is almost 5 and knows how to shut off her feeding pump and unhook her extension. However with the trach I was always afraid of her getting up and out of bed on her own. I'll be interested to know how things go.