M drinking water. She prefers it over juice any day. She does choke really badly on it, so I will mention it to the SLP tomorrow and see if we can arrange for another swallow study to see if she's aspirating it - if its not safe, its not safe.
Mila really enjoys this cabinet. Even though it backs into the chemical cabinet, its safe enough since its right where the computer is. I couldn'te believe it when I found her IN the cabinet!!
Its cold. I do not like being cold, and being cold makes me cranky, whiny, and unmotivated. Thankfully, my routines have rubbed off on others and the house is NOT a disaster. Even after a rather messy spaghetti dinner last night, we were able to have a guest over for a few hours to play video games. That made me feel really good. I also really really appreciated the few days that Alex loaded the coffee pot for me, and even used the sign to let me know he had done it. I was so, so proud of him. I was doubly proud of Robby when he came downstairs the other day and announced " I made my bed! "... Thank you, little man, you are the best.
M has had a few bottles over the last few days, but very very little oral intake beyond that. She gagged on a muffin, and gagged at the SIGHT of a grape. The pediatrician reallly does feel that she has a food aversion and will be needing some long term care in this area. We've got a referral to a GI who the ped thinks is great - very helpful - and we've also started her on Lactulose for the constipation she's been having lately. I actually had to give her a suppository Friday because she hadn't gone in SIX DAYS. The ped was NOT happy about that.
Robby is just so wonderful, and he's been listening AND eating better. That makes me happy. He's also getting really good at tracing his letters. He hasn't painted in a few days, but he is enjoying his playdough every day. Its so hard for me to believe my first baby is going to be four very very soon .
Nothing much else is going on, so the next post will likely be pictures. Tomorrow, we have the feeding team visit and Alex is coming. Should be interesting!
I have the most adorable video of Mila farting the couch, but you'll just have to wait till tomorrow for that one.
I have big news.
Mila ate today for the first time since months before the surgery. She had all but a single bit of babyfood today. I am so excited that *I* would like to pee in my pants! She ATE! Right in time for a ped visit tomorrow, but what the heck, I'll take it! She also had a bite of broccoli ( ever see the shoeshiners? Try that on a tongue! ) and two bites of egg. As soon as I'm sure that the egg hasn't bothered her, I'll be giving her scrambled eggs or bits of omelet. She swallowed it. ( I think. I didn't find it yet on the floor, but I haven't swept tonight since early this afternoon ).
Robby is such a camera ham. He growls and grumps and I have to bribe him for a smile. Often enough, I have pictures of his hands before I have pictures of his face. My new camera is faster, but it won't focus on his hand :-(
Alex continues to have a terribly slow month at work, and missed any bonus. I'm sure he's very very disappointed, so I hope the trip in may is EXTREMELY worth while. We are doing OK, but I would hate to have to go look for a job and actually go back to work. Before I would consider doing that, I'd see if I could take one child in for daycare. I just really, really really dn't want M in daycare at this point.
Despite the weather having been lovely for the whole week, we had flurries and expect snow tonight. I will be so sad if the world is white tomorrow when I wake up. We have places to go and people to see, so I really, really, REALLY don't want to have to drive in the snow and put on snow suits and such.
M has learned to get into the cabinets, to turn the TV and the new XBox 360 on and off.
And I sucked at my routines today. :-( HOpefully I will be more motivated tomorrow.
Robby had his little buddy Cian and baby Relena over today while his mum worked and his dad saw the dentist. It was a blast. Its very interesting how the dynamic plays out between the babies. Mila is very determined.
Relena picks up a toy. Mila picks up a toy.
Mila takes Relena's toy and has both.
Relena picks up a new toy.
Mila steals the new toy.
Relena scoots away, and picks up one lonely boring block.
Mila immeaditely snatches the block away.
Very interesting indeed! When I have permission from R & C's parental units, I will post the pictures of the playdate.
We had " bone " sandwiches for lunch - Cookie cutters are such cool things! Cian chose a " bone " cookie cutter and each piece of bread turned into two identical dog bones. A slice of cheese turned into a bone. Suddenly, it was bone sandwiches and two very happy boy puppies.
Robby also had dinosaurs for breakfast! Yummyyyyyy chocolate chip pancake dinosaurs. He even was allowed to cut them using his new Ikea plasticware set. He was so, so proud of himself. Hopefully later tonight I can post those pictures.
Isn't M's dress cute? I could eat her all up!!! I had to bribe Robby for this smile. He can be such a little ham when he wants to, but the minute the camera comes out, he is Mr. Grumpypants!
Routines are so desperately important when you have kids, and even more so when you have children who must remain on schedules. Things have been much less hectic in our house since I went back to the adopted FlyLady routines. I have always done well when I do the flylady thing, but I " fall off the wagon " too often to have adopted them in earnest.
I adore having my sink clean and shiny, and my stove certainly belongs in that category as well. A dirty stove collects dirty dishes, as does the dirty sink. Having it extra sparkly means that I hesitate to put a dirty dish into the clean sink. That means I WASH the dish... And then I don't have a sinkful of dirty dishes! I have a dishwasher full of dirty dishes - and part of my routine is running the dishwasher.
Except that I run the dishwasher waaaaaaaayyyy late at night - usually around midnight when M's last feed is running. No one is eating at midnight - so the sink stays clean till morning. And it gets unloaded during breakfast ( Robby helps ). And so on goes the cycle that leaves me clean dishes!
And all the routines work like this in our house. This morning, I had clothes laid out for myself, and went from the bed into said clothes.... and I was ready for my day. I grabbed M's clothes ( folded! in her drawer! ) when I grabbed her, and she was ready for her day. I will work on Robby!! Today he used his stool to pick his clothes out of the closet - he even ALMOST matches! So proud! These are where my routines live. They are color coded index cards - one per routine, and the index card on the side is the diaper bag checklist. The top routine is the morning routine, and if you'd like to know what I do in the morning, feel free to zoom in by clicking on the picture.
After the morning routine, I have a " naptime tackle " - this I do only while Mila is asleep. Mopping, Vacuuming, and cleaning her highchair is part of this. If she doesn't nap, I try to do them later, but for the most part, skipping a day on these is not the end of the world.
The afternoon routines - loading the dishwasher, pulling out dinner, etc, are very important, and often the hardest to accomplish. Its also one of the longer routines. However, it keeps me on track throughout the day and I'm not left trying to do it all at night.
Obviously, the night time routine is the one I enjoy the most. Its hard to tell from the photo, but the entire list is enclosed in plastic, and the small plastic bag to the side holds a dry erase marker. As I finish a task, I cross it off of the list. This keeps me motivated - I love seeing the entire list crossed off, because I know I've DONE it. I was able to do it!
Its really been wonderful for me to feel so accomplished. Mila is getting all her meds, on time, everytime. The diaper bag is fully stocked - I am never at a loss for wipes. Dinner is not a rushed, ohshitnothingsdefrostedmaybeweshouldorderapizza.
Robby cleaned up his room today after a playdate. I've worked really hard to get his room put together in a way that he can keep it clean and clean it up by himself if it is not kept clean. I went to Ikea yesterday and bought him a second hanging shelf organizer. He is sooo happy that he has a spot for everything! When he is happy, I am happy!!!
Today is day 11 of 12 eating salad. I missed a day. But my sink was still shined!
Mila's Meds - Lasix ( heart ), Zantac ( Acid ), Captopril ( Heart ), Losec ( Acid ), and a water flush to clear the tube. She gets all of these twice a day, and the Captopril three times. You can see my syringe collection in the background, next to the chopping block.
The beginnings of one of Alex's favorite Meals - Indian Chicken. I switch it up between Chicken Tikka, Butter Chicken, and Chicken Korma. And yes, thats an ENTIRE potato, 10 baby carrots, an ENTIRE bell pepper, 1 cup of broccolli, and 1/2 of a purple onion. I chop up two chicken breasts and add a jar of Indian Marinade. Delicious!
It is sunny and warm outside. The house is all clean, minus a few dishes from lunch that I will handwash. The dishwasher is finished running and will be unloaded before my inlaws are here this evening for dinner. Mila is napping, Robby is out shopping with Sophia, and Alex is at work.
My sink has been shiny, I am on Day 10, (thats right DAY TEN!) of eating a healthy salad, and all the beds in the house are made. There is no damp laundry in the washer getting moldy, my bathroom is neat and put together, my toilet is clean, and my floors are freshly mopped.
I am awaiting the arrival of vomit on the freshly mopped floors, mind you.
I am back on the Flylady wagon. I am feeling very calm and collected these days without my house in Chaos. Its amazing how fast the house would go back to being a trainwreck ( hello, dirty socks on the floor - they breed into underwear and shirts! ), but I am working very very hard on getting everything into alignment. I want, very very much, to be better and keeping everything organized, and I want to instill that in Robby. I want the desire - and the ability - to keep things from exploding into pigpenness to be something I can give my children.
I am the worst housekeeper. I find it easier to ignore a mess than to spend the five minutes cleaning it up. And it is LITERALLY five minutes most of the time! I mean, how hard is it to pick up the toys instead of complaining about them? Why does it take so much effort to move my dishes from the table into the dishwasher, without letting them collect in the sink? Why, why oh god, have I not learned to do this before?
Every night, I am spending fifteen minutes getting ready for the next day. Just 15 minutes and my mornings are so much calmer. Gone are the days of spilling coffee grounds into the water resevoir, juggling a squirmy almost toddler in my half sleep. Gone are the days of transversing the neck breakingly steep stairs in the dark, mindless of toys cluttering the way, awaiting a soft foot on a hard corner. GONE! Gone I tell you!
My nighttime routine - the most important one - is also among the shortest. Here it is, in its entitery :
Load & Run Diswasher Pick up Toys Give Mila 11 oclock feeding & meds Wipe Counters & tables Clean Feeding Pump Set Load Coffee Pot Shine Sink Take Pills
Its wonderful. I cannot tell you how wonderful. I wish the world would know - my house is CLEAN.
Its so nice to come downstairs and not trip over a toy, step on a lego, or spill coffee grounds while trying to hold Mila and make coffee. My sink is clean and shiny, I do not smell dirty dishes, and the counter is free and clear.
The lack of crap is practically orgasmic. Who knew one could derive so much pleasure from not falling over discarded toys while walking down a flight of neck breakingly steep stairs? 15 minutes in the morning, around an hour later in the day, and some very very tiring 15 minutes just before bed. That last pickup is the hardest - I don't actually WANT to put all the crap away, but if I don't, it WILL be there in the morning. And thats when I really, really don't want to see crap.
Robby had a blast at the Purim party Thursday night. We'd had a playdate earlier in the day - I forgot my camera. Mila was bopping around in the ball pit, shrieking with laughter, and I had no camera to record it. Of course. Because I cannot ever have the camera at the right moment. ( Disclaimer for credibility : I had the camera. But it had no memory card and no battery. ) Anyway, we went home for a few hours for nap before the purim party started, and then got to try out our new Kangaroo PET pump walking around. Not one single flow error! Today, I'mma try it in the CAR!
Robby had his face painted like spiderman at the party. OMG you would have thought the world was ENDING when it was time to wash it off. After playing at galaxyland, then running around like, well, spiderman at the party, Robby was just exhausted at 11:30pm when we headed home. But his skin is very delicate and I didn't really want spiderman on his pillowcase, so it had to come off. I explained to him that he'd get pimples ( and he would ) if he didn't take it off. And wouldn't you know it, he DID have some irritation under the paint. He FREAKED OUT when he saw the red spots because THE PIMPLES WERE GOING TO GROW AND EAT HIS FACE AND THEY'LL NEVER GO AWAY AND HIS HEAD WILL JUST EXPLODE WAAAAAAAHHHHHHHHHHHHHHHHH!!!!
Needless to say, he was asleep before I got to kiss him goodnight. He was THAT tired.
Yesterday, I washed my floor. Again. Actually, I washed my floor three times in two days. No, I'm not turning into a germaphobe. I am trying to keep the floor washed well to avoid M putting stuffin her mouth ( Melba Toast Crumbs, Anyone? ) that isn't really food worthy anymore. The moment I finished mopping the floor - it was still damp, for crying out loud - she puked on it.
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!
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..........
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!
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.
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?
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!