Tuesday, August 7, 2012

Wednesday, September 14, 2011


Someone started Kindergarten this week. She will be 5 on the 28th of this month. She's younger and tinier than almost every kid in her class. But spunk she isn't lacking. I fear for her teacher. Really.

Friday, June 24, 2011

Monday, December 20, 2010

Worst Blogger Ever

...that's the title I'm bestowing on myself since I cannot get myself together to write a proper post. I've realized that I'm much more of an instant gratification type and Facebook is my friend. Most of my loved ones get info about Kate and the boys through the social media site. And since Kate is not even close to being medically fragile or even medically interesting anymore, I hesitate to write. Then again, I do like the idea of parents who are in the thick of the medical issues surrounding kids with PRS or trachs, to be able to see that there is light at the end of a very long and sometimes very dark tunnel.

It's been 2 1/2 years since Kate's decann and 18 mos since her stoma was closed. Airway wise, she is doing great. We are down to check ups every 6mos or so but at this stage, it's mainly because she still has ear tubes and probably will for a long time to come. Kids with clefts can take much much longer to grow out of needing a little assistance in the ears. Kate is halfway there. At a check up in May with Dr. Jacobs he noted that the tube in her right ear had fallen behind the ear drum and gotten lodged there. He surgically removed it and opted to let it heal rather than put another tube in. She went until October with no issues - tube in left ear, none in right. I thought maybe, maybe she was starting to grow out of it. She's extremely healthy (which never ceases to amaze me) so no sick visits and if she does have fluid in her ear, she's generally asymptomatic for a long long time. Only if a fever pops up do I have any idea things are awry.

Anyway, I digress.... this November, she developed a hacking cough. No other symptoms - no fever, no runny nose to speak of, appetite fine. The only thing that we noticed was an increase in her snoring. Her lungs sound clear and she's acting fine. We went to see Dr. Jacobs earlier this month. I'm thinking he's going to want to bronch her to check out her tonsils and adenoids. Instead he notes her nose being very congested, puts her on Nasonex once a day and says to come back in 2 months. Alrighty doc.

Cleft palate clinic this year was only notable because the team's collective opinion was that Kate could go to check ups with them every 2 years, instead of every year. I was thrilled, if only because the day is so long and the traffic is ridiculous. I don't miss the trips to CHOP every other month. At all.

Otherwise, Kate is great. She was 4 in Sept, goes to preschool 4 afternoons a week and dance 1 morning. She's loud and opinionated and definitely a force to be reckoned with. And today it is 4 years since her discharge from CHOP. She was 11 weeks old and finally home.

Sunday, July 4, 2010

Two years

That's right -- 2 years since the piece of silicone in her neck was removed. A tiny piece of equipment that kept her alive, and created more drama in 2 years than I'd seen in my 40 years.

The sense of relief didn't kick in til much much later. Shock was a more accurate description for B. and I since it wasn't where we'd thought we'd be, nor how we'd expected her decannulation to take place.

Two years ago, we expected Kate would be in the PICU recovering from the long awaited, heavily anticipated LTP (surgical reconstruction of airway with rib graft). Two years and 1 day ago, we hugged and kissed our heavily sedated daughter good bye and let her be wheeled into surgery with a doctor we trusted implicitely, whose intent it was to cut her neck open, and replace scarred tracheal tissue with part of her rib to open her airway and allow her to breathe without that tiny piece of plastic. Two years and 1 day and 1 hour ago, that same doctor came to us in the OR waiting room to tell us that our daughter's body had essentially healed itself - that the LTP he first mentioned when she was a mere 5 months old, need not take place now on her 22 month old body. Two years and 1 day ago and 22 hrs ago, we waited in the PICU for her to be wheeled into her room, with an even tinier piece of plastic in her neck (a downsized trach to prep for decannulation). Two years and 1 day and 18 hrs ago, we watched as an RT placed an even tinier piece of bright red plastic over Kate's trach and absolutely nothing out of the ordinary happened. Two years and 6 hours ago, we arrived in our daughter's room, not having any idea if she'd done ok with the cap and saw a smiley girl who looked just fine. Two years and 5 hours ago, a resident in pediatric otolaryngology removed her trach for the last time and we all held our breath to see what would happen. Two years and 4 hours ago, we exhaled and began the path toward realization that Kate was now "typical" -- with the exception that most 22 mos olds don't have an open hole in their necks.

Two years seems like yesterday.

Two years seems like a lifetime ago.

Wednesday, June 30, 2010

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.

Monday, November 16, 2009

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.

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 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.

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.

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.

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.