sienna’s egg challenge: round 2

Posted by kyden on Tuesday Aug 26, 2014 Under sienna

a couple of  months ago, sienna did another skin prick test and tested negative for an egg allergy.  hooray!  but before we celebrated too much, sienna had to do another oral challenge to make sure she had really outgrown her egg allergy.

so she went in for the oral egg challenge today.  just like last time, mommy made some tamago, and she and sienna went in to the doctor’s office prepared to spend most of the day there. when sienna arrived, she was greeted by three different nurses/doctors as the “singing baby”.  i guess they remembered her performance from her last visit. 😛

20140826-IMG_4264the first “serving” that sienna got to eat was 1/8 tsp.  she happily announced that she liked it and that it tasted like tofu!  after she ate it, the nurse checked to make sure she didn’t have any sort of allergic reaction.  she was fine.  so 15 minutes later, sienna got to eat 2x the previous serving — 1/4 tsp.  again, the nurse checked her and she was fine.  so she waited another 15 minutes.  the nurse set up a portable DVD player so that sienna could watch a movie in between her tiny bites of egg.  the third serving was 2x the previous amount — 1/2 tsp.  that bite did her in.  within a couple of minutes, she started getting hives around her eye and mouth.  the doctor came in, and he called off the challenge.  sienna: 0, egg: 1.  (actually, that’s 2 points for egg since this is the second time that sienna has failed an egg challenge.)

20140826-IMG_4268the nurse gave sienna some benadryl, and the little hives went away within a few minutes.  but just to be safe, they made sienna stay for two more hours for observation.  luckily, mommy brought a big container full of fruit for sienna to eat.  she was starving because she wasn’t allowed to eat anything in the morning before the oral challenge.  mommy was hungry too, so she ate the rest of sienna’s tamago. 🙂

well, the bad news is that sienna failed another egg challenge — she’s still allergic to egg.  the good news is that mommy and sienna were outta there in plenty of time to go eat a real lunch!

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time for a check up! time for a check up!

Posted by kyden on Tuesday Aug 19, 2014 Under sienna

sienna turned 3 almost a month ago, but she just had her 3 year check up today.  sienna is such a trooper with all the doctors that she has to see on a regular basis, and she usually doesn’t complain.  but today, she really didn’t want to go to the doctor because she didn’t want to any more tests.  i guess she remembered the skin prick test that she had done in june which made her really itchy and uncomfortable. mommy promised her that there would be no tests — just a check up, like doc mcstuffins!

20140819-IMG_4174time for a check up!  time for a check up! i’m gonna check your ears check your eyes find out how much you’ve grown… then i listen to your heartbeat, fix you up ready to go… it’s okay if you giggle. this will only tickle a little… 

the nurse weighed and measured her, and i helped.  she is 36.7 inches tall (38 %ile) and weighs 28 pounds (20 %ile).  the doctor said that she has gone from really really thin to just really thin.  i dunno what she’s talking about.  have you seen sienna’s belly? there’s nothing thin about that.

the doctor asked sienna a bunch of questions that i was quick to answer.  mommy told me to let sienna respond, but when she was asked if she eats her vegetables, i couldn’t keep quiet.  i had to point out that she always eats them last!  the doctor also asked sienna to draw some shapes and walk across the exam room.  i guess she passed all those tests.

20140819-IMG_4178sienna’s check up went exactly like the doc mcstuffins song.  she even giggled a little (actually, a lot) when the doctor checked her tummy. 🙂

the doctor gave mommy the option of having sienna’s hearing tested today or waiting until next year.  sienna is only 3!  i was tested when i was 4, and i failed miserably.  mommy opted to wait until next year.  the doctor agreed and said that sienna’s hearing is probably fine because she is very advanced verbally.  actually, she said that both of us are.

the best news of the day was that sienna didn’t need any shots.  yahoo!

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diagnosis (almost) confirmed

Posted by kyden on Friday May 2, 2014 Under sienna

at sienna’s last appointment at UCSF, her doctor came up with a diagnosis for her skin condition: pityriasis rubra pilaris (PRP), type IV.  sienna goes back every 4 months so that she can be monitored.

20140502-IMG_2698she went in today, and she was pretty good while sitting patiently in the waiting room for her name to be called.  and then in the exam room, she waited patiently for her doctors to come see her.  but then as soon as her doctors arrived, sienna became very uncooperative.  she didn’t want to show her doctor her hands or her feet and wasn’t really in the mood to be photographed.  i guess i don’t blame her.  the doctors are so nice, but still, sienna must feel like a lab specimen.

20140502-IMG_2705after today’s visit, the doctor feels even more confident about the PRP diagnosis.  that’s cool.  but i guess that means sienna won’t get a new disease named after her.  some day, mommy might let the lab do a biopsy to confirm the diagnosis, but probably not any time soon.

the bad news is that sienna’s condition is progressing.  while her hands and feet aren’t peeling as much as they used to, the skin on her ankles appears thicker, and her knees appear to be more red than they were in previous visits.  and the good news?  well, there’s not really any good news.  her condition could continue to worsen until it’s as bad as those scary photos on the internet that you really should never look at.  but i guess it could spontaneously resolve, too.  and most importantly sienna is otherwise healthy.  i guess that the good news right there.

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dolphin x 2

Posted by kyden on Sunday Feb 23, 2014 Under sienna

20140223-IMG_1455last week, sienna started swimming by herself in the yellow starfish class.  and guess what.  she passed the level today!  we were all so surprised because she only got 2 circles marked off last week.  so that means she must have completed the other 5-6 skills today.

20140223-IMG_1457at our swim school, you get to ring the bell whenever you pass a level, so sienna got to do that today.  it was her first time.  it took her a couple of tries, but she finally made the bell ring, and everyone cheered for her.

now she’s a green dolphin just like me.  mommy has always said that sienna would catch up with me and my swimming skills soon, but nobody thought it would actually happen.  (i’m a pretty good swimmer, you know.)  but it looks like it might happen sooner than later.  i was so excited because i thought that sienna was going to be joining my class, but it turns out that she will stay in her current class because it spans yellow and green levels.  it’s probably for the best, because sienna seems to be pretty fond of her instructor, mr. jacob.  (yup, she kissed his hand again, today.)

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swimming solo

Posted by kyden on Sunday Feb 16, 2014 Under sienna

guess what.  sienna swam by herself today!  she’s such a big girl!

20140216-IMG_1366the independent swim classes usually start when you turn 3 years old, but sienna’s teacher thought she was ready.  she even recommended that sienna skip the first two levels and go straight into the yellow starfish class.  that’s only one level below me!

when mommy dropped sienna off for her class, she explained to the teacher that this was sienna’s first independent swim class.  she hoped he would be a little more understanding of  anxiety or tears if he knew the situation.  but there were no tears.  sienna barely even glanced back when mommy left the pool deck.

20140216-IMG_1373sienna did such a good job swimming by herself.  she even got 2 of the circles (skills) on her starfish card marked off already.  when the teacher put out his hand to give her a high-five, she kissed his palm.  yes, she kissed him.  repeatedly.

you know, now that i think about it…  sienna hasn’t had a lot of male teachers, but the ones that she’s had, she’s been very fond of.  remember the gym teacher (mr. dennis) that she had a crush on?  i think sienna is so silly. mommy and daddy think that she is going to be trouble.

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dibs on mommy’s lap

Posted by kyden on Wednesday Nov 20, 2013 Under sienna

20131120-IMG_0112sienna doesn’t like it when mommy holds other babies.  she even tells mommy, almost daily, “i don’t want you to hold other babies.”  but still, she insists that she wants a baby sister.  mommy asked her who would hold baby sister.  “kyden.”  sienna seems to have it all figured out.

well, we went to uncle henry’s house today to meet his newest foster puppy.  sienna loved the puppy.  that is, until mommy held him.  it appears that according to sienna, mommy’s lap is off-limits to everyone.  no babies.  no puppies.  no nothing.  sienna has permanent dibs on mommy’s lap.

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pimple or MRSA?

Posted by kyden on Thursday Oct 17, 2013 Under sienna

20131017-IMG_1968sienna has been getting zits for the past few weeks.  the current one is right in the middle of her forehead.  see it?  she got her first one right after my birthday party, and we didn’t know what it was.  we thought it might be some irritation caused by the new sunscreen that we used that weekend.  (it was all organic and had no chemical sunblocks, but it made me and mommy itchy.)  her school even wrote up an incident report about it because they thought it might be some sort of injury.  well, that bump was on her right cheek, and it was still there last week for our school photos.  i wonder if they photoshop school pictures for preschoolers.

as soon as that cheek zit went away, a new one appeared on her forehead.  that’s when we became convinced that they were zits.  so mommy googled “pimple on 2 year old” and guess what.  almost all of the results were about other parents who thought their kids had pimples but it ended up being MRSA.  MRSA???  aaack!  where’s my cleanroom suit?!

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hello, wheat. goodbye, wheat.

Posted by kyden on Wednesday Oct 2, 2013 Under sienna

sienna is definitely allergic to peanuts and eggs.  but what about wheat?  in her two skin prick tests (a year ago and 4 months ago), she tested negative for a wheat allergy.  and she used to eat things with wheat in them all the time — they never made her itchy or caused any breathing difficulties.  so it was confusing that her blood tests came back moderately positive for a wheat allergy.  mommy’s theory was that it aggravated her eczema.

when sienna went to see the dermatologists at UCSF, she was prescribed some steroid ointments for her eczema.  she used it for a few days, and her eczema disappeared.   her skin has been looking fantastic for weeks.  so mommy thought it was time to reintroduce wheat into sienna’s diet, then see if the eczema flared up.

20130930-IMG_1753so monday morning, we said hello to wheat.  mommy made us muffins for breakfast.  she made them with real whole wheat flour — not the almond/arrowroot/aramath/whatever flour blend that she usually uses.  and she packed a sandwich in sienna’s lunch.  the sandwich was made with a pita — not the gluten-free wraps that sienna usually gets.

the muffins were so yummy.  i ate 3 of them.  sienna liked them too.  she liked them so much that she kept eating them even though they were making her itchy.  and sure enough, there were hives all around sienna’s chin and mouth too.  no more muffin for sienna.  and mommy had to re-make sienna’s lunch, too.

mommy was perplexed.  sienna had never reacted to wheat before.  maybe sienna was reacting to the coconut oil in the muffin?  everything else in there was stuff that she’d had before — bananas, blueberries, coconut, and fake egg.

so today, mommy did an experiment on sienna.  on one arm, mommy rubbed some coconut oil.  on the other arm, she rubbed a paste that she made out of wheat flour and water.  within seconds, sienna started complaining that the wheat paste arm was itchy.  and then it turned red and hivey.  the coconut arm looked shiny and well-moisturized.

mommy was wiping sienna’s arm with a towel and apologizing to her just as daddy came home.

daddy:  what are y20131002-IMG_1785ou doing to our daughter?

mommy:  it’s the wheat.  she’s allergic to wheat.

daddy:  uh, yeah.  we knew that.

poor sienna.

bad mommy.

goodbye, wheat.

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role-reversal at bedtime

Posted by kyden on Saturday Sep 21, 2013 Under sienna

usually at bedtime, mommy reads to sienna.    tonight, sienna read to mommy.

remember when i was sienna’s age and i used to read to her? what do you think?

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Posted by kyden on Wednesday Sep 18, 2013 Under sienna

20130918-IMG_1621a few weeks ago, sienna went to see some doctors at UCSF about her peely hands and feet, and they invited her to attend a clinic for disorders of cornification.  when mommy called to schedule sienna’s appointment, she found out that the clinic happens only once a quarter.  apparently, the world’s leading specialists in the field go to UCSF every few months, and they schedule patients in two time slots.  two.  i guess that’s all they need because the conditions are so rare?  i dunno.

well, the september clinic was full, and so was the january one.  the next one hadn’t been scheduled yet, so sienna was put on a wait list.  not 10 minutes later, the scheduler called and told mommy that there was a cancellation, so sienna got into today’s clinic.

20130918-IMG_1628after being weighed and measured, sienna had to wait a really long time (maybe an hour?) before the specialists came to see her.  while she waited, she played with the stickers that she got in the waiting room (she charmed the women at the front desk and got stickers before her appointment, even though they are generally handed out afterward).  and when she got bored with the stickers, she started playing with her nipples.  she has a newfound fascination with her nipples.  i guess that was bound to happen after spending so much time naked, in front of a mirror.

well, the two specialists finally came to see sienna, and they were accompanied by about 6 other people in white coats.  the specialists asked all the questions — the others (maybe fellows and residents?) just observed and didn’t say much.  the specialists didn’t really have any answers.  there are about 4 different possible diagnoses for sienna’s condition, but it doesn’t really matter.  whatever it is, there is no cure for it, and the treatment would be the same.  that said, they are very interested in sienna and her “extremely rare condition”.  they asked her to participate in a research study that is being conducted by a professor at yale.  he is looking for new genetic mutations that cause skin conditions like sienna’s.  (does that mean that sienna is a mutant?  like the x-men?  so cool!)  the downside to research testing is that it can take a long time to get results.  the upside is that it is free (to us).  since there is no urgency to land on a diagnosis, mommy agreed to it.  i feel bad for sienna, but it’s pretty cool that she has the opportunity to contribute to medical science and to society.

i was kidding before when i said that she might get written up in a medical journal, but now i think that it’s a very real possibility.  i bet that’ll make a good story for her personal statement in her med school application.

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