Just a girl

Yea, I'm not the best blogger around, but honestly -- does anyone want anything but the twice a year update. Kate is completely and utterly typical and the days of me obsessing about her medical issues are over. Things crop up occasionally -- one of her ear tubes lodged behind her ear canal and needed to be surgically removed, a speech therapist evaluated her at preschool and had A LOT to say, most of which I discounted because, let's face it CHOP said she was better than good, so I'm believing them --- but really that's it. She's a healthy (no sick visits to the doc since decannulation - NONE), developmentally fine kid.

She likes to swim, she takes ballet, she loves princesses and pink and she drives me absolutely mad some days.

Cleft Palate Clinic

When Kate was discharged from CHOP in Dec of 2006, her plastic surgeon told us he'd like her to be seen by the Cleft Palate Clinic when she was 2 1/2. I made that appointment, but ended up having to postpone because of the stoma closure surgery this past April. They fit us in in November and we went 2 weeks ago having really no idea what to expect. It was fine, but I'm not sure we'll be doing this every year as they would like us to be. It's certainly not that we are not taking Kate's diagnosis seriously - it's just that she is SOOO typical now. Plus the issues she does have remaining (she does have a Sticklers dx, hearing and vision issues) are being handled through her pediatrician, opthalmologist and ENT). I'm not 100% certain we need to do the all day appointment thing, because it really seemed like it was as much for their research purposes as it was for her.

Speech
The first person to see Kate was a speech therapist. She asked Kate to repeat several words and phrases to her, held a mirror under Kate's nose and told us Kate was doing well. (Really? well golly we had NO idea - insert eye roll emoticon here). She said it was important that no air escape through Kate's nose during speech --- but didn't say why. Ok then.

Plastics
Plastics was next. I have no ill will towards the CHOP plastics department (except for that one Fellow who really ticked me off after the palate repair but I'm not holding a grudge). They did a beautiful job on Kate's palate and her tongue and lip are no worse off for having a failed TLA way back in 2006. What irritated me about this day was their need to take a full medical history including asking about my pregnancy. Seriously guys? Kate's a got a chart there and all her procedures were done there -- why go through all this again?? Ok, I'll get over it. We saw Dr. Kirschner again and that was nice. He hadn't seen Kate since Dec. 07 when he repaired her palate. He came into the room, looked at her and said, "it's nice to see her without all the other acoutrements she used to carry around". Yes doc, it is isn't it? He asked her a bunch of questions, asked her to repeat certain words and phrases (during which she suffered performance anxiety and some words sounded very baby, and Kate doesn't sound baby at all) and held a mirror to her nose. He said her repair looked great and was working well. Apparently the palate is used as a "valve" during speech and hers was working perfectly - no air was escaping from her nose when she talked. He also told us there was a small chance she would need another repair at about age 13 - but since her repaire still looked good, that may not happen, just have to watch it.

ENT
Some kids with PRS don't have an ENT or maybe they only have one for ear tubes. That's not the case with us but we didn't see our regular ENT during clinic. I knew we wouldn't because he was doing a bronchoscopy on a Facebook friend's son that day. Anyway, we saw a Nurse Practitioner who we didn't know and who could NOT stop talking about how great Kate's speech was. She told us not only does she have no nasality at all to her voice (can be a very common side effect of formerly having a cleft palate) she verbalized and articulated more like a typical 4 or even 5 year old - not a 3 yr old with a repaired palate. That was nice to hear! She didn't keep us long (could see on her computer that we had history with Dr. Jacobs and continue to see him regularly) which was even nicer.

Audiology
A long wait to hear the same results we heard in June when Dr. Jacobs office did the exact same tests -- mild hearing loss, keep an eye on it. Will do. We know she has some loss based only on the tests. Her speech is impeccable (see above) and she can clearly hear most things just fine. The loss occurs with some tonal things. We'll keep checking it, and I let her preschool know just to be proactive.

Dental
This was the real reason we trekked to this appt. While Kate's baby teeth have come in fine (and all are present), some are crooked and we have some concerns about there being enough room in her mouth for her adult teeth. Overall, the dentist said her teeth look good, keep brushing and see a regular dentist who you've made aware of her medical history and who will keep them aprised as well -- when they do get xrays of Kate's mouth, CHOP wants a copy. The orthodontist said she will almost definitely need work but within the same time frame as any typical child. The final determination will be after she has lost her front top and bottom baby teeth and the adult teeth come it. Likely about 11 she will get a set of braces or the like. Fine by us.

Social Work
This one cracked me up. They didn't require us to see genetics (even though she has a known genetic syndrome) and they didn't require us to see nutrition (even though she had a rough time with that) -- but they made us see social work. I guess it was so they could give us resources for support if we need, just seemed silly to me. But the social worker was lovely and I could have sat there and talked with her for hours.

Developmental Pediatrician
The pediatrician said she was doing fine, but took measurements of her entire face. Fine.

That was pretty much it. We'll definitely keep in touch with the dental people and of course ENT - still out to lunch on the rest.

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.