naughty Eve

I'm sorry I haven't posted in a while. I've been really lazy about it. I think partially because I've been so busy, but partially because I've been in a funk. This kind of thing hits peaks and valleys for me. Lately, I've been pretty sad about what Eve misses out on and what she ought to be able to do at her age. But....just as I get down about her atypicality, she does something very typical of her age. Eve got in trouble at school. Apparently she was touching a classmate during circle time. When the teacher redirected her ("Ah-ah. Keep your hands to yourself. J. is listening and learning."), Eve stuck out her bottom lip and started to cry. She had a little fit because she got in trouble. I love it! What a little princess. She's so darn bossy. She can dish it but she can't take it. Mostly I am happy that her teacher treats her like any other student and removed her from circle time until she could get herself together. Jim and I had a great laugh over her being naughty.

Let's see....other news. I heard from Dr. Shoffner's office. It should take another week or two until her DNA sequencing is finished and sent to his desk to be written up. So.....maybe I'll hear something by the middle of March. Ug. This is taking forever.

Here are two snapshots from this weekend. Enjoy!

GI update

Eve and I went for her postop with the GI doc yesterday. He thinks she looks good. I have to call his nurse and set up an appointment for getting her tube changed to a button - maybe around late April. He said they'll just give her a sedative, cut the tube, pop it out and put in the button. Done. No overnights, no general anesthesia. In the meantime, we talked about the feeding pump that we run overnight with her. I asked about bolus feeds (larger quantity all at once as opposed to drip feeds - 8 oz over 10 hours) and he said that is fine to do. So now, if we think she needs more liquids, we can give her a couple of ounces of pedialyte over the course of 20 minutes (or whatever time if would take a kid to drink it). Or, we can give her a few ounces of formula through the tube if she didn't eat well at meals. I like this idea for 2 reasons:
1. The pump is a PIA
2. I worry that if we drip feed her formula overnight, she won't be hungry in the morning to eat a good breakfast, and then will be hungry until lunch.
But mostly because of #1. So, we're going to try bolus feeds for a few days, and then if it all works smoothly, we'll give back the pump and IV pole.

Eve has been sleeping GREAT, btw. Being on her stomach has made all the difference in the world. Oh, and there is a new little girl in her class. Cute as a button. Apparently Eve doesn't think so. The teachers say she's jealous! Totally not surprising from my little diva.

January pictures

I know I've been bad about posting pictures. We get Eve to bed and it's just about all we can do to put the dishes away (and sometimes we don't!) and collapse on the couch. Anyhow, I'm sure you'll forgive me. Here's a great shot of Papa playing with Eve after her tube surgery. Grammie and Papa came for a late Christmas visit. We took several pictures of Grammie, but wouldn't you know it - they all came out blurry. Jim wasn't using the flash so Eve wouldn't blink, but that means that any movement turns into a blur. You'll just have to trust me that she was here, too.

For a while there, Eve's tube site was not looking too good. She started getting granulation tissue (tissue from the inside of the hole grows up and out in an effort to close up the hole) and even had some sort of spotty rash on her tummy.

The GI nurse called in a Rx for the granulation tissue and as you can see, it really helped!
Her stoma looks so much better now. We used to have to clean lots and lots of crusty gunk from it, but now it is so easy to keep clean. We go back to see the GI doc on Wednesday, so we'll see what he has to say.

Oh, and here's my snuggle buddy. Honestly, she slept that way!! Josie just loves to have her face buried.

Jim took this picture of Eve yesterday. I love it!!

Eve's doing pretty well. She actually took her nap on her stomach today (and slept nearly 2 hours). We also put her to bed tonight on her stomach and she went down with out a peep (probably for the second time in the last 4 weeks). I am hoping tonight is a good night. We've been up with her every night and it's getting old. Although we are almost positive that when she cries now it is because she wants us in there, not because she needs us. So, we've been much more strict about it and have basically begun sleep training all over again. I'm keeping my fingers crossed for tonight though. I hope sleeping on her stomach will help her to stay asleep because she is more comfortable. She's always felt more secure on her tummy.

The other thing that Eve has been doing that is good but mildly annoying is insisting on feeding herself. That would be fine if she were successful at it. We've taken to compromising. We let her dip her spoon in her applesauce after Jim gives her the portion with her medicine. The he lets her work a kid spoon for a while (it takes forever, but she loves it) while he occasionally slips his own spoonful in her mouth. She's so stubborn, that she pitches a fit if she doesn't get her way. That's my 3 year old!!

Oh, and I officially made the switch to cloth diapers this week. School and daycare are on board, and I am so grateful for that. Hope you are having a great weekend!

zzzz

First of all, Eve hasn't been sleeping as well as I thought she would. We had that one awesome night and that was it. I think she's coming down with a cold. She sneezed directly into my eyes yesterday, so if it's a new virus, I'm sure I'll get it. Let me just tell you about last night. OMG. Between Eve and Josie, we were dealing with getting our "kids" to bed for 1.5 hours. Around 10pm Eve woke up crying. She had a little poop. So we changed her, but she had a hard time getting back to sleep. We managed to calm her down and then get into bed ourselves. All is quiet for a minute and then we hear the tick tick tick tick tick of Josie walking in the hall to our bed room. Pause...hold breath.....what's she doing?......Oooof!!! She jumps up on the bed and tries to snuggle between us. Sigh. I get up and take her to the couch (where she sleeps). As I am doing that Eve wakes up and starts crying. Sigh. I go into Eve's room to calm her. As I am doing so, tick tick tick tick...Josie comes to investigate. She leaves and I calm Eve. I go to check on Josie and she's no where to be found. I finally spot her on the floor next to my bed. Ug. I pick her up and take her back to the living room (We won't leave her on the floor in our room because we have the fan on and it's cold. It would be just a matter of time before she tried to join us in bed again.). Cue Eve. Calm. Tick tick tick tick tick....jump! snuggle snuggle. Jim ejects her but doesn't get out of bed. pause......jump! snuggle snuggle. Jim ejects her. Cue Eve. Ug. We give Eve motrin in case she has a sore throat from postnasal drip. Finally get her calm. Go to bed. Tick tick tick tick....jump! ARE YOU KIDDING??????????? This cycle lasted an hour and a half. I finally ended up putting Josie on the dog bed in her crate for the night. It was unreal!! If we weren't so friggin' tired it would have been hilarious. Of course, I was crying instead from worry about Eve (I had had a "down" day). Jim was wonderful and was very comforting to me. I'm so glad for him. Wish us a better night tonight!!!

What a week!

So, it's been a crazy week. Eve is doing well. A little better each day. That first night of sleep was just a tease. She spent the next several nights waking up about at least every hour and crying for us. As soon as we came in she would stop and as soon as we tried to leave she would start again. Now, the problem with that (other than the obvious) is that all that crying increased leakage around the tube site. Yuck. Well, Tuesday night she actually slept for a 4 hour stretch. Wednesday night it was 6 hours. And......last night is was all night!!!!! She only cried when we first put her to bed, and I had to go in once (right after I put her down). Consequently, her tube site was pretty clean this morning (no crusties to speak of). So, I am guessing that she is getting used to sleeping on her back now. She is using a pillow, and we have another pillow wedged next to her. We keep telling her she is a big kid in a big kid bed just like her cousin Alex (whom she idolizes).

Imagine the lack of sleep we have (all) had and then let's add this to the mix: I got a nasty cold. The usual - coughing, bloody boogs, stuffy. Fine. I can deal with that. Tuesday I planned to spend all day at work catching up from last week since I didn't have to teach. That morning we get Eve on the bus and Jim is complaining of a sore neck. He sits down to eat a bagel and starts screaming in pain. His neck seized on him. He could literally not move. He said it felt like his muscles were ripping (or he was being stabbed in the neck) and that he had never in his life felt pain as bad as that. He basically sat in the chair for 2 hours (while I had to go to Athens for a dentist appt) and I had to help him try to adjust himself in the chair when I got home. There went that day of work for me. We were able to get him to the Dr. and she gave him 2 shots and some Rx for pain, a muscle relaxer and a steroid. He stayed home again on Wednesday, but was much better. Back to work yesterday and today. Crazy life, right? I'm hoping we had a really boring week pretty soon!!
I'll post pictures soon from Grammie and Papa's visit.

Home sweet home

We got home yesterday afternoon from the hospital. Eve slept almost the whole way home. she is doing very well. She still cries if you touch the tube, and is very very sensitive there, but she is doing great. She had a good day today with Jim, Grammie, and PaPa. Played by herself (and with her g'parents) and really did well I was told. I had to go to work because it was my first day of classes. I am so behind! I literally didn't have all three syllabi written or copied as of this morning. But I got it done, along with some other work stuff I'd been putting on the back burner.
Last nigh Eve did well. She cried going to bed (for about 20 minutes) and twice during the night, but it wasn't very strong crying. More wimper/whining. As for me - I felt like I was sleeping in a great big marshmallow bed. Such an improvement over half of a hospital bed! I was so snuggly comfortable, it was pure heaven! Ah....home sweet home.

Day 3

Although yesterday started out good, we had a rough patch that evening. Eve had a major meltdown around 9:30 or so. I think the pain meds totally wore off (and she was likely very hungry and tired). The nurse ended up giving her morphine and she finally fell asleep and actually had an okay night. The nurse also backed off Eve's feeds since it was possible she wasn't tolerating them. That put us behind schedule for leaving. So we are staying another night. Eve had a great day today and did really well with the feeds. We even were able to give her dinner which she loved. We had a nice talk with the GI doc and he will stop in in the morning. Hopefully he will discharge us then. whoops. Just got a call from Jim. Eve won't settle down and go to sleep. She's been so clingy to me lately, and this hospital stay has exacerbated that. Oh well. I'd want my mommy too. Anyhow, we hope to be home tomorrow. Here are some more pics...

We were even able to get Eve out for a walk around the fourth floor.

Yummm! Ice cream!