Nothing New!

Everything is on a positive upswing, here at Casa De Kagan. M continues to be a bratty little girl who occasionally eats but generally not. Her sleep has deteriorated somewhat, as she's waking up a few times a night. I don't know if her Zantac dose needs to be higher based on weight - she's gained a ton of weight! According to the last home visit, she weighed exactlly 19 pounds. What a blessing! I am soooo happy that my skinny chicken now has legs that slightly resember turkey thighs!





Robby is a maniac. He's developed three very nasty habits that Hubby and I are trying - desperately - to break him of without beating him into submission.





1 ) He wiggles his tongue back and forth in his mouth constantly. It makes him look like he is very low function mentally. He does it unconciously, but its driving us crazy. It looks TERRIBLE and there is NO reason for it. I've checked his teeth and tongue and there is no irritation there, so he shouldn't be doing this. Our treatment : fingerbop on the cheek and a stern " DON"T DO THAT!!! " We've explained how silly it looks, but he says he doesn't mind looking silly.





2 ) Pointing frantically to what he wants rather than using his words. Despite REPEATEDLY telling him " I don't understand that! ", he continues to mime his wants out to us rather than actually open his mouth to speak. Odd, considering that usually we cannot get him to shut up for two seconds at a time! Our treatment : Ignoring his " requests " until they become verbal.





3 ) Bargaining & Backtalk : I won't even go into this, other than NO YOU CANNOT HAVE FIVE MORE MINUTES!!!!!!!!!!!





I'm trying to get back on the Flylady wagong ( http://www.flylady.net/ ) and using my lists to keep up with the house. Last night, I even set up the coffee pot so it could just have a quick switch on - easy to do with a screaming child. ( I am also a little tired of coffee grounds on the counter... )





I've continued on the Salad EAting Quest and I am definetely doing well. I think I have had salad every single day since the 14th. Thats 8 days of salad, baby! Sometimes TWO salads a DAY! I am on a roooooooollllllllllll and I'm going to be at least 5 pounds lighter by shorts weather. In August. Becuase IT WON"T BE WARM TILL THEN!





Happy first day of spring!

In order to satisfy the picture peekers........

Nothing Cuter

I think there is nothing, nothing cuter than the sight of my two children snuggling. I wish I could capture it more often on film, but alas, it is nearly always followed by screams and struggling. If only I could duct tape them there.

The salad quest is going well. I had a big salad friday, TWO salads saturday, and lots of salad last night - both caesar salad and a coleslaw type salad that my MIL makes that was delicious. Along with a bowl of cereal at night, I'm doing really really well. Oh, and judicious amounts of coffee to get me through the rough spots.

M threw up her tube today - she also threw up on my inlaws carpeting last night - sorry! The puking is getting to me a bit... I do NOT WANT her throwing up so much! I hate it! its driving me CRAAAAAAAZZZY.

Hopefully today, I get my new diaper bag. A new diaper bag? What? I thought the days of needed an extra outfit, extra diapers, and lots of supplies were gone along with that panicky new mother feeling. I was wrong! When you have a tube feeder, the amount of supplies you need is nearly endless! Why, you need the normal, requisite number of diapers, except you really need twice that because the baby is on Lasix and will randomly soak her entire diaper in 5 minutes... And then you need wipes cause the super digestible formula, how shall we put it... runs right through her.... And then you need a bottle that has a flat cap, and a 60 CC syringe, and a 10ml syringe, and a can of formula. Oh, and a bottle of water for flushing. And duoderm, tegaderm, cavalon wipes, all kare wipes, tender grip circles, and extra NG tube, a roll of cloth tape, and several little zip top baggies. And an extra outfit. And extra socks. For both kids in case of puddles. And soon it will be summer which means a hat for each kid, sunblock, and bug spray. And bandaids. Add all that to the requisite mommy & big brother items - a snack, juice box, sunglasses for both of us, my wallet & planner, cell phone, keys, and hopefully a makeup tote, and all of a sudden, I am looking at six bags instead of one. Oh yeah, and god forbid we want to go out for a few hours, and then I need the pump, and a feeding bag, and tape to tape the bag up..........

So I am getting a Skip Hop Duo bag...Oh how I long for this bag. http://www.skiphop.com/mm5/merchant.mvc?Screen=PROD&Store_Code=SH&Category_Code=DB&&Product_Code=20000

Room to put everything. Maybe even room for the pump in its carry case. OOOOHHH how I WANT THIS BAG. Alex is supposedly out buying it for me, right now.

Alex is also going to the bank, the post office, getting an oil change, AND taking Robby to see Horton Hears A Who. Hopefully, by the time he gets back, I will have cleaned up the house, finished this blog entry, had the nurse come and weigh M and put her tube in, called and made an appointment with the dietician & feeding team, AND made an appointment to pick up our new pump :-) Since the stupid thing HATES being even 1* off!

A few quick pictures...

Since M threw up her tube last night, I took the opportunity to give her a real good, soaking in the tub bath. I hestitate to do that while she has the tube taped to her cheek because I don't want the tape loosening, and I think it would be irritating to the skin to have a damp mound of tape there for a few hours... and if water gets under the duoderm, she could possibly grow an infection there too... I think... I don't really have any idea.

M took well over an hour to fall asleep for nap - and when she finally did, it was with her arms totally outstretched on her pillow, like she was trying to give it a hug... It was soooooo cute. And yes... After an HOUR, I was STILL willing to risk her waking up for this picture. It was that cute.

And I had another salad for lunch. I'm trying to make my lunches pretty - I'd love to get bento boxes, but until I can, I'll make do with artfully arranged salads.

And for something totally different..

More vomit!

Oh wait, no, that's pretty normal these days. Oh... what I wouldn't give for a totally vomit free day! A day with no retching, no gagging, no crap-she-puked-the-tube-out-again!

Luckily last night, I noticed the retching and color turning before she managed to puke directly ON me and aimed her vaguely toward the sink. And yes, of course, she puked up the tube at 5:45pm on a Friday night, in the middle of a late winter snow storm. Because there could NOT be a more convenient time to have to call the nurses.. you know... because they have no lives and they realllllly want to drive out in the dark, on a Friday night, in a FOOT OF SNOW.

But they did, like always, assuring us that it wasn't a problem. It took two tries to get her tube in, and several more tries before the tape held it well enough that it wasn't in danger of being merely cried out. Poor hubby despises holding her down for tape changes, and last night, he even had to hold her arms while the nurse shoved a plastic tube in her nose.

Then we had some super delicious Indian chicken, complete with peppers, onions, potatoes, carrots, and served over rice. It was yummy, despite having not cooked terribly evenly. Different, eh?

Pictures

THe Cardiology Disappointment

Its been a very long road to me. I felt such disappointment at M's last cardiology visit. Her echo and her ECG still show lots of heart damage - we don't know if it will be permanent or not. The cardiologist was unspecific about whether or not there SHOULD have been improvement, instead saying only that he was not terribly concerned about the lack of improvement, and that he didn't expect any at this visit. I wonder though, if he expects improvement at future visits?

We've cut M's feeds from 170 X 5 to just 140 x 5. She's missing a few calories but its better than the daily vomits she's been giving us. Nothing is better than a lapful of warm vanilla vomit first thing in the morning, or as a nightcap on the way to bed. Her weight gain has been stellar and so I am not concerned. The cardiologist did write us a referral to GI because of her non eating. I am also going to put a call into the feeding team.. In fact, I am going to do that as soon as I'm done blogging!

HOpefully later today, I will gt off my butt and post new pictures.

Robby is still the super amazing boy he always is. He's a handful - thats for sure - but he's also very sweet and kind the majority of the time. Mila delights in playing with him or stealing his toys. Most of the time, he takes them back. Right now, they are playing together while we wait for the timer.

The timer is my secret weapon for getting through hard days. There is a multitude of cleaning that has to be done, and I am trying - desperately - to get everyone eating healthier. Even if its not technically healthier, at least homecooked will suffice. So basically, I'm attempting to be betty crocker and have homebaked muffins for breakfast for daddy, waffles and fruit / pancakes and fruit for robby... and I'm trying to stick with just a powerbar for breakfast for me... That is sooo much better than a whole stack of pancakes covered in butter and syrup, no?

Starting today, I am going to give myself a sticker for everytime I eat salad for lunch. Salad is healthy, I cover it in veggies and sliced meat / tuna... I will get back on track.

If I get 10 stickers by the end of the month, I am going to treat myself to something nice! Again!