Hey, hey, hey potty!

So, I've potty trained 3 kids already. I consider myself, not an expert by any stretch of the imagination, but all 3 kids were very different and had different things that worked for them, or didn't, so I've seen quite a bit. But as has been apparent since Kate's birth, she's like a first child ALL OVER AGAIN. I let the entire winter go by (even though the signs were there occasionally) without even attempting it with her. But May 1, I took her to pre school orientation and felt like I was hit by a truck when they announced, "all kids must be trained before they can start school". YIKES. Clearly we needed to get down to the business of peeing and pooping on the potty - fast. I got videos and books and talked incessantly about it to her. She had pretty much no interest until she saw Prudence and her potty on tv. Things started clicking and she's forging ahead to parts unknown now -- the public toilet. Tuesday night, she told me she had to pee at her brother's baseball game. What's a mom to do? I had to take her to the toilet and pray it wasn't a bacteria convention. It was suprisingly ok, I held her on the pot and guess what? She peed!!! It's been pretty consistent since then. She's wearing Pull Ups (which I franky don't believe in - just a diaper in the guise of underwear) but the Pull Up is dry and she's yanking it down to sit on her potty when she needs to. Now we just need to progress to wearing underwear, all day.

Movin' on up

This is video of Kate's first time in the pool. She's only ever been in the bathtub and only with inches of water. She had never been submerged in water, never had water over her head, never mind swimming. Because of that, she only lasts seconds in the pool but it's still a milestone nonetheless! Two days after this, we went to my husband's brother's house and she spent 4 HOURS in their hot tub. She was positively prunish but so so happy. I think the combination of warm water and being able to feel the bottom of the tub helped.

Stoma closure - part 3

Post op 2 weeks.

Stoma closure - part 2

So her stoma is finally closed. She no longer has a hole visible in her neck, that shows where that tiny piece of silicone kept her alive all those months. It's a new dawn, a new day, a new life. She can wear a "bathing soup" and actually go in the pool, instead of watching from the side with me frantically making sure no water goes anywhere near her neck. The pic on the left shows her stoma (and Kate) as it looked the morning of the procedure. The pic on the right shows Kate, matter of factly, coloring the morning after the procedure.

Honestly, this was the easiest trip to CHOP for a surgery, that we've even had - even with a few hiccups along the way. We arrived in plenty of time and while they took Kate into the peri op area almost immediately, we stayed there waiting for over 2 hours. It was definitely torturous -- Kate had been n.p.o since 11p the night before and was starving. This was her first procedure without a feeding tube and she talked incessantly, while in the tiny cubicle, about the chicken nuggets, french fries and ice cream she was getting once it was over. Poor girl, just like her mom -- all about the food. Anyway, the finally took her back at 1:40 and by 3 sent out a nurse to tell us they were closing her up for good. Yippeeeee!!! By 3:30 another nurse brought us to a private meeting room to wait for Dr. Jacobs to speak with us. Now, this was Kate's 7th time in the CHOP OR and in those 7 times we've NEVER been brought to a private room. In fact, the day of Kate's trach placement, Dr. Jacobs came out to show me the pics from her bronch and explain that he needed to trach her.....in front of at least 30 people in a tiny crowded little room. The next parent was literally sitting 6 inches from me. So to be brought to a different room certainly upped the ante of our mild anxiety. B. and I sat in that room barely speaking until Dr. Jacobs finally came in, beaming and saying how great Kate had done. Whew! I breathed an audible sigh of relief and said, "you're killing us having us put in this room, we thought something had happened!". No, no she was fine he said. Her stoma was practically invisible inside her and the whole thing ended up being mainly a cosmetic procedure. Whew - again. Ultimately, she was sent to the regular floor, after a miscommunication sent B and I up to the PICU (where we both exchanged looks and decided through mental telepathy that we were keeping her door closed the entire time because the kids up there are SICK). She was pretty grogged out by the time we got to her room, but not groggy enough. She overheard B and I discussing our dinner plans (CHOP has room service for patients and parents) and shouted out, "I want my chicken nuggets!". Ok then. She ate them all, plus the fries, and a huge cup of apple juice -- all that 3 hours after surgery. Overnight, she required NO pain meds and slept from 12 -5. Needless to say, she was sent home early the next morning without incident.

Oh, and just as a point of reference, CHOP has remodeled their parent waiting area and you are no longer in that tiny room, with a parent 6 inches from you. It's quite nice now, with a little kitchen, vending machines, tvs and computers...and lots of space.

Stoma closure

Kate's stoma was closed today. Dr. Jacobs said he could barely see it on the inside. Her incision is covered with a small bandaid and she's eating like a champ. More later.

Chatty Kate

I'll do a more complete post about Kate's speech, but for now, here's a video of her talking from a week ago:

Intubation

At the end of March, we went CHOP for a pre op visit with Dr. Jacobs. We assumed this was a formality and that we'd sign the consent forms for Kate's stoma closure procedure. During the visit, after the staff complimented us up and down about how great Kate was doing (immaculate stoma, on target speech with no evidence of a delay of any kind, typical 29mos old behavior) Dr. J tells us he will do a bronchoscopy on 4/24. If her airway has grown, THEN he will close the stoma. If it hasn't, well then he may want to leave it open a bit longer. HUH??? We were sideswiped, but recovered enough to agree with him. Still, the thought of him leaving her with an open hole in her neck for a long brutal summer horrifies us both, so we're chosing to just go with it and hope for the best. Her sleep study was normal, her breathing at home normal. She used a pulse ox while sleeping for close to 6 mos post decann with it alarming maybe 3 times total. She's fine -- but still. One never knows what he'll find in the OR.

Another thing...Kate hasn't been intubated for sedation since November of 2006. Intubation (or being on a ventilator post op) is what caused the stenosis in her airway that kept her trached so long. We were nervous to have a tube shoved down her airway again, so we asked for it to be noted on her surgical file. Not only did they note it, they had an anesthesiologist call us to discuss our concerns. He was nice, slightly patronizing, but nice. He assured us they'd do their best, blah, blah, blah. I also emailed Dr. Jacobs to let him know we'd spoken to anesthesiology, etc. His response was an email to me that simply stated:

"she was intubated for scope in July and did fine. I have routinely intubated her for scopes, and she hasn't had issues. She'll be fine."

Ok then.