Updates...part 2

I've been remiss in posting lately. Some of it has to do with just life getting in the way, but mostly I wonder if people want to read about Kate anymore. Her life is really that of a typical 3 yr old. There is hardly anything of note to comment about. That's good - it's what we've been working towards since she was born and I'm really glad she's come so far.

She started preschool last month. There were tears at first, but she's muddled through and loves her school now. She's my 4th kid to go to this school. I trust the program and have never looked back once I put them in it. I'm not at all the mom who is hovering at the closed door, peering through the window getting all teary about their baby. No, I dump and run. But with Kate, I did linger more - especially when I saw them plop her right in the middle of the line and she has no idea what "a line" is for. They treat her as any kid, and I'm not even sure if the teacher knows her full medical history - but I do and just watching them treat her regular made me cringe a bit. I got over it fast but I couldn't help but want to shout out "don't you kow what she went through!!". It's fine, I maintained my dignity and Kate has found her place in the class so it's all good.

Potty training took longer than I wanted it to, but it's pretty much done. Who ever says girls are easier - lies.

Kate turned 3 in September and had her well check a few weeks ago. This was her first full year trach free and her first full year without a feeding tube. She did great, gained 5 lbs over the year and jumped from the 5% to the 20% in weight. Her appetite is typical for a toddler and she clearly is able to monitor her intake appropriately. Whew!

Next Thursday she has her first appointment with the Cleft Palate Clinic at CHOP. It's an all day affair which I'm not sure how I feel about. On the one hand, I'm looking forward to showing her off. On the other, it's a perfectly annoying to have an ALL DAY appointment at a hospital 2 hours away on a day my sons do not have school. I guess we'll deal.

And I'll post about that later on.

Updates...

Coming soon - Kate started preschool and it's a tough lesson to learn you aren't the center of everyone's universe!

"That's what we do for PRS kids..."

I saw that on a message board last night and it got me wondering - just what was your care plan for your PRS child? It became clear to me during the first year that what happens varies a great deal regionally and what is the typical course for one area, is vastly different from the typical course somewhere else. It also became clear that sometimes, a hospital will offer you choices based on their own protocol, and not tell you that there are other options available - so lots of parents are making decisions without knowing all there is to know. Seems like there should be a database, or at the very least, a website where you can see the choices available in different areas of the country, or world.

So I'm curious --- what were the options presented to you??

A picture is worth a thousand words

Kate's 3rd birthday and her 1st anniversary of decannulation are both rapidly approaching. In honor of that, I'm posting these pics of her, for all the "silently reading" parents out there so you will all know that you CAN hope that things will end up well for your baby. Things are ending up fantastically typical for Kate, and they sure didn't start that way!!




Here is Kate still in utero. This was taken the day of her birth and she was born a few hours later. Now that I know what I'm looking at, it's glaringly apparent that she has PRS.



Here she is a few hours later, the night of her birth. She's already in the NICU and NOT HAPPY about it. The nurse took the pic so I could see her. She's been whisked away immediately and I"d not seen or held her yet. I remember looking at this pic and saying, "good I'm glad she's crying that means she's pissed".




And here is Kate now. This was taken at the end of May this year. Clearly, Kate is completely typical looking and I can assure you, completely typical developmentally as well. Just at the bottom of her extended neck, you can see where her stoma scar is. Other than that, there is absolutely nothing to indicate that she ever "had anything wrong with her".

Post op checkup

Yesterday we took Kate for her post op checkup with Dr. Jacobs. Since she's no longer an "airway patient", we no longer have to be see in Airway Clinic at the main hospital. We took Kate to the annex facility in Princeton, which was only 50 minutes from our house as opposed to 2 + hours. Needless to say, we were pleased before we even stepped foot in the place. The appointment was fast: her site looks great, keep it covered with sunscreen and come back in 6 mos. Great doc, see ya then. But he did ask about her hearing and when it was revealed she hasn't had hearing test at CHOP in over a year, he decided to do one right then. Thank God the audiologist was available and it was a relatively quick and painfree 30 min. She did 3 tests: the first one Kate wasn't interested in doing at all, the second one she failed. They put probes in her ears and measured her ears response to sounds. It showed no response. YIKES! But the 3rd test was behavioral (put the block in the bucket when you hear the beep) and she passed. Left ear tested completely normal, right ear showed mild loss. So we'll continue to test her hearing every 6 mos until she's 6, then yearly after that. Remember, Kate has Sticklers Syndrome, and progressive hearing loss is a symptom of Sticklers.

Otherwise, Kate's perfectly fine.

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.