Be a Better Listener!

So, when Miles said "I have a scrape on my throat", I should have heard what he meant, which was "I have strep throat"! Oops, what a bad mother. It took him waking up at 3am today and not going back to sleep for me to take him to the doctor. During the day he has seemed totally fine - but add tiredness to the mix and the grouchies come out. Am I talking about him or me? Not sure.

Anyway, hopefully he will be on the road to recovery after he starts his 10 days of antibiotics. At the moment, he is taking a nap. He has been awake since 3am after all.

Verbal Gems

Lately, since Elizabeth has been on her steroids, she has been very chatty and hyper. She also had a couple of melt downs in the evening but that's a whole nother story. Fortunately she only has 1 more day of medicine left. Not that I'm drawing big Xs through the days or anything. She has never been much for describing what is wrong with her - in fact most of the time she's "fine", "I'm fine - I said I was fine!"

Miles, on the other hand, has had a runny nose for a couple of days, but today woke up and said "I have a fever and my lungs have a scrape on them" These were his exact words. He in fact did not have a fever and was offered Tylenol but forgot about it before we even got the kitchen. Hopefully he'll be over it in a couple of days.

Gingerbread House

Miles has been dying to make a gingerbread house. We keep seeing those fabulous kits with all the pieces and the frosting ready made. This of course won't work for him due to his nut and egg allergies so we improvised and made our own house out of graham crackers, frosting and candy. It ended up being little, but cute, and most importantly yummy. The evidence has been eaten already, but for the 3 seconds that the house was standing I took a quick photo.

I Love Face Paint

As a result of Elizabeth's CT in November and seeing her doctor earlier in the week, she has started on a 10 day course of oral steroids. It has been a long time since she had taken this medication - I hope it doesn't give her any adverse side effects. All I remember from before was that it made her so hungry that she ate 4 bowls of Cheerios and 2 bananas for breakfast. We were at National Jewish in Denver (she was 2 1/2 years old!) So, I have been packing her a bigger lunch than normal. We'll see how she does.

The steroids will hopefully reduce swelling and allergic response in her sinuses, shrink her polyps, and if she does have allergic fungal sinusitis it should help that. Of course, don't ever hope for a diagnostic test to give you a definite answer because it probably won't. The CT showed stuff in her sinuses, but whether it was allergic fungal sinusitis or just inspissated mucus (I think this is doctor speak for thick old snot) couldn't be seen.

So, we are trying the meds for 10 days and will follow her closely and check back in 3 weeks. At least it might help shrink up her polyps. In spite of all this as usual, she seems remarkably fine and full of energy!

Og's Letter Pail

Wednesday was Miles's turn to bring home Og's letter pail from school and fill it with things that started with I. He choose:

Ice cream (plastic of course)

Ice pack

Incredibles DVD

Icicle (Elizabeth drew this for him)

Injector (for squirting cream into pancake puffs)

Hopefully this will start his wheels turning so that he can start to work on recognizing beginning sounds - if only so that he can be better at playing I Spy! At the moment he says, "I spy with my little eye, something beginning with Tree!" He'll get the hang of it soon.

Rudolph the Red Nosed Reindeer

Now, I know the holidays get stressful - there is so much to do, ornaments to hang, lights to put up, gingerbread houses to make and cards to mail. Oh yeah, we haven't done any of that stuff yet. But we did feel the spirit of the season last night at Miles's Christmas show at his pre-school. His class sang Rudolph and did lots of actions and everything. It was adorable and hilarious all at the same time. Miles is the one with the green antlers. Note the great spot I had for filming before the teacher came and sat in front of me!

Merry Christmas to all!

CT Photos

Here is Elizabeth with her weird headgear on - the CT computer uses the headgear to somehow make a 3-D image of her sinuses. It kind of pinched her ears a little, but she said it was no big deal.

We were at the hospital for so long (for all the usual reasons) that it was getting dark when we came out! It was crazy windy so the kids ran around near the flags for a minute. Then we headed out to the giftshop and then we went to Old McDonald's for dinner. Big Time!

Allergic Fungal Sinusitis

Elizabeth had a Sinus CT late Friday afternoon to rule out allergic fungal sinusitis. Since we have recently discovered she is allergic to "mold" which is in the air year round here - her ENT wanted to make sure that she doesn't have this specific type of sinus problem - as well as the whole junky sinus ciliary issue.

Here's a link to a mildly scary article about the issue with some gross pictures.
http://www.muschealth.com/nose/fungals.htm

Hopefully her ENT will call today and let us know the scoop.

But the great part is that she ROCKED the CT. She was brave, calm, no big whoop, and very entertaining for the radiology techs. They did show the kids some cool "magic" tricks like floating scissors next to the MRI machine. Miles didn't like the look of the CT machine but sat nicely in the control room showing the techs how to play "his" Nintendo DS. It only cost us two Webkinz. A snake and a white fluffy snowman. Yes, Elizabeth chose the snake. weird.

Will post CT picture later.

Another Sculpture Pose

I just love the way the sculpture photos turned out. This one is called Walking to the Sky, 2004 by Jonathan Borofsky. According to Borofsky, the sculpture is a compelling tribute to the power of our aspirations and the resilience of the human spirit. And to think I just thought it was really cool looking.

Wash Your Hands!

http://www.msnbc.msn.com/id/27633551

Mark just forwarded me this article that talk about how horrible the new super-bug C-diff is and how prevalent it is, especially in hospitals. The take home message is that if you have to go in the hospital, you should demand that all of the people who touch you or your stuff WASH THEIR HANDS! Nice.

Sculpture Garden

The children enjoyed visiting the Nasher Sculpture Center in the middle of downtown this weekend with the Grandparents. Their favorite part was posing like the sculptures and having us take their pictures. This sculpture is Untitled, 1996-99 by Joel Shapiro. The weather was fantastic.

10pm Bedtime!

Miles didn't go to bed last night until 10pm. That is of course, because he crawled under the dining room table at 2pm and took a little cat nap for 2 hours. No more naps for Miles.

WWE Imitations

Perhaps the other Best Thing from last weekend with The Cousins was when David and JJ did their Pro-Wrestler imitations. The pictures do not do it justice - I was cracking up. Their imitations were good enough for Liam and Callum to guess who they were - I didn't know any better - so boys - let me know the names and I'll update this post with the names.

Hulk Hogan

The Brian Kendrick

Umaga

Jeff Hardy

The Cousins

The children and I were lucky enough to join Mum & Dad and James & Sharon and The Cousins in the greater San Antonio area last weekend. We stayed next to the river in the countryside and went to Sea World and Six Flags (More Flags - More Fun!). We had a great time and are still tired. But the best part was hanging out and drinking "green ones" on the patio after the kids were in bed. Or it might have been James convincing my Mum that the Roaring Rapids river ride wouldn't get her wet - she'd be okay. We all got soaked to the bone - but she went under the waterfall.

Ironman Pumpkin

Miles also had to create a pumpkin for the contest - just for fun. He of course chose the superhero - Iron Man. I'm not sure how marketing for a PG-13 rated movie trickles down to the 3 year old set - but that's a whole nother story.

Just in case you are wondering, he is of course covered with fudgsicle because "my popsicle is leaking and making a mess!"

Pumpkin Contest

Today is the big Pumpkin Decorating Contest at school. Elizabeth is very pleased with "Lisa the Cat". Note to self, buy stock in crafting supplies.

Fire Prevention

So, this week is Fire Prevention week at Miles's school and they are talking about fire fighters and fire trucks all fantastic information for a 3 year old who says he wants to be a Fire Fighter when he grows up. He also came home with other great information about fire safety!

"If there is fire on your clothes or hands - drop and rooooolllllll." Demonstrated very nicely with dropping and rolling actions.

"If there is a fire - call 911!"

Such a genius.

Sleeping In (Not)

Why is it that my children are physically unable to sleep in on the weekend? Take for example this Saturday morning. Elizabeth came in our bed at 2:00am. Miles must've come in around 2:15am. 98% of the time, Elizabeth goes straight back to sleep, she flops around, hogs the bed, buries her toes under your ribs - but goes back to sleep. (Later, she said Miles was shouting and woke her up.)


Miles was completely unable to go back to sleep - so I snatched him up quick, before he woke up Elizabeth and took him back to his bed. He was wide awake, coughing, and had a snuffly nose. He laid down, flopped around, but was wide awake. At 4:30am I got him some milk and by 5:00am he was back asleep. Now this is where things get blurry because I remember wiping his bum at 5:30am - now was that Saturday or Sunday? I remember thinking - what the hell kind of day is this going to be if I am "doing the paperwork" at 5:30am.


So, needless to say, we restarted his Zyrtec allergy meds because even though his allergy tests didn't show that he is allergic to any pollens or weeds or trees - he evidently is (!) and not taking Zyrtec makes him cough, snuffle, and not sleep worth a darn. Maybe we'll try and stop it again in another month.

Allergy Testing

Elizabeth & Miles both had allergy testing recently - Miles for follow up on his peanut and egg allergy and Elizabeth to follow up on her nasal polyp issue.

Miles's previous allergy test was a year ago. Since then, he has become more allergic to peanuts and less allergic to egg - significantly less. Hopefully if we don't give him any egg for another year or two - he will no longer be allergic to egg and he can go back to having cake and cookies (that don't have nuts or nut dust in them). woo hoo!

Elizabeth doesn't seem to be allergic to dust anymore. That must be because we have eliminated dust from her environment for the past 3 years - ok go ahead and laugh now. She is however, allergic to some molds - don't really know what that means yet - we'll see the ENT in October and see what he thinks about that. Before that I must google mold allergy so I can ask him lots of probing, paranoid, intelligent questions.

No Nose Culture/ To Do List

Well the good news is:
1. no "nose culture", because there didn't seem to be any "pus" (nice) in her nose.

But the bad news is:
1. her nasal polyps are bigger
2. one ear tube is out
3. the other ear tube is coming out.

So, therefore we should
1. add a nose inhaled steroid for a month to shrink the polyps and then follow up
2. make an appointment for allergy testing - since her last tests were done so long ago, because unresolved allergies can cause inflammation which causes polyps
3. continue everything else

In addition we should,
1. do a hearing test at our visit next month for a baseline (due to TOBI potential side effects)
2. call Jane from St. Louis for a heads up and ask her how removed "polyp material" is handled, shipped, stained, tested in the event that Elizabeth does have them removed in the future. Polyps are full of ciliated material that would be very useful to examine and then we would potentially have a definitive diagnosis.
3. hope she doesn't get an ear infection.

Other Unrelated To Do Items
1. order a genie girl costume for Halloween.
2. stop procrastinating by blogging and clean the office - nobody reads this anyway.

Sinus Infection

Well, the story of Elizabeth continues today with another missed activity due to a doctor's appointment. The appointment was made 8 weeks ago, way before I signed her up for MadScience after school. But since I'm pretty sure she has a sinus infection I decided not to reschedule which would push it out another month. We'll see what Mr. ENT says. It will probably involve a "nose culture".

Big Boy Bed

Well, we have been talking about it for a while, working on it for even longer and now ta da! Here it is! Miles is so excited he keeps saying he is tired. The bed has made his room a destination! "I'm going to go to my room now".

It appears that the key components to sleeping in this house are a blankie and a catalog and of course, wrinkled Batman sheets.

Wedding Anniversary

Today is my Mum and Dad's wedding anniversary and I forgot. I am such a bad daughter. I have 10,000 excuses, two of which are, I got a new planner, and I got wrapped up in the drama of getting new wood flooring. Neither of which are remotely acceptable. So, this'll take you back to a lovely summer day in 1970... I love this photo...

Sorry for the belated greetings.

Karate

Look at this excellent push up form. I don't have a before picture - but this is a significant improvement. Elizabeth has been working hard on the forms and techniques for her purple belt this summer and at the end of camp a couple of weeks ago, it just started to click for her. She is almost ready for her test. She needs to remember to have good form on her blocks, no rainbow arms, to chamber the arm that is not doing a block, and turn her foot on the forward bow punch. Simple...

Board breaking class was yesterday - so much fun, all the kids were so excited and there was some serious energy in the room. Elizabeth was so surprised when the board actually broke in half - she was very proud of herself. She did break boards with her hands and feet - Super Girl! As usual, apologies for the terrible video.

Birthday Boy!

The Hats Make It a Party!

Miles was 3 this weekend. I just can't believe it. We reminisced about waking up in the middle of the night when my water broke and saying to Mark "I need a towel" and him bringing me a washcloth. Funny now, but at the time I think my head spun around and I shouted "I said A TOWEL!"

Miles is such a talkative boy, and he was so glad to see everyone and he get jumping up and down and saying "it's my birfday! We had "the best party ever" according to Elizabeth - she does say that after most parties - she really knows how to enjoy the moment. But what's not to love? We had Grandma here as well as Nanny and Grandad, we cooked out, whacked a pinata, opened presents, played pass the parcel and had cake. Does it get any better?

As you might of noticed from my previous posts, Miles loved the Wall-E movie so much that he wanted the Wall-E cake that we saw at Target. Since my Mom is such a genius she suggested we just try to buy the little figures and then we could make our own nut-free, egg-free cake at home. The Target people said absolutely and the result was delicious (if I do say so myself) and adored by Miles (especially since this Eve had a shooter!)

Miles loved the pinata - Elizabeth was quite proud of helping make it and paint it - she suggested we find out how to make a pinata at how to make a pinata dot com (this is not actually a real website) - but it was funny.

We have lots of exciting things for Miles coming up - a new big boy bed with Batman sheets and starting at "my big school" in August. It is great to be 3.

Eeeeevaaaaaah

Miles went all day today in his Mater underpants. We went to Target, we went to swimming lessons and he was dry all day. This is indeed a momentous day. He still wore a diaper for a nap (our swimming class is very late in the day - he would be a wreck without a nap) and to go to bed.


The really momentous part - was a teeny tiny poo poo he did in the potty right before bed. I had said on Friday, if he did a poo poo in the potty I would give him a surprise. The surprise was a little stuffed Eve from the movie Wall-E .


The rookie mistake was not getting one for Elizabeth as well. I was scolded by my husband and mother for such an erroneous decision. So, I have just been on the phone to the mall where I bought the dang thing (I sound like Mater) to see if they have any left and they are holding one for me until end of business on Wednesday.


Tomorrow is another day - we'll see what happens.

Ciliary Biopsy Results

So, it has been just over 4 months since we took Elizabeth to Washington University in St. Louis to participate in a Primary Ciliary Dyskinesia study and the results are in!

We officially had "not enough cells on the sample to look at", which isn't surprising because she wasn't an eager participant in the "nasal scrape".

She technically wasn't diagnosed with PCD before we got there nor when we left, and not even now that the final test result has come back. We left with a Probable PCD diagnosis - which is more than what we had when we went to WashU.

All in all, we are still doing the same thing - treating her as if she has PCD. Breathing treatments and meds are all the same. Even if she was technically diagnosed, we would still be doing the same thing. We feel good about where we are, with the doctors we have and the plan we are following. If she has to have another some nasal polyps removed or another bronchoscopy or something else fun like that - we will try again while she is sedated.

Going Down the Slide

If this goes by a bit quick - this is Elizabeth going down the slide at the end of her swimming lesson yesterday. Can I go again?!

Swim Lessons

The children are taking swimming lessons this week and next - Miles is not so thrilled, he doesn't even like getting his hair washed in the tub. Elizabeth is totally excited. She was however concerned that the teacher would not know any "advanced ideas" because she was also teaching Miles's (baby) class right before her (advanced beginner) class. Elizabeth is just starting to get the hang of swimming without help. Miles didn't even want to sit on the edge of the pool with his feet in the water. Hopefully today he won't be quite as clingy and he won't require quite as many skittles as bribes!

Kung Fu Panda

Today Miles and Elizabeth and I went to see Kung Fu Panda - we loved it! Elizabeth is hitting him where it hurts in this picture - but doesn't even realize it!

Before Elizabeth was born, Mark and I went to the movies almost every weekend! Now, we only go when a new kids movie comes out. Saves money though - today the popcorn cost more than the tickets!

We can highly recommend the movie for grown ups (especially if you're a fan of The Jack Black) and kids (Miles didn't want to leave until the credits were over!) However, there was an unusual amount of kicking each other and the walls in the restroom after the show - hopefully this will pass.

Float or Sink

Isn't summer vacation great - it's 10am and the kids are still in the pajamas (even though we've been up for hours) and we are playing Float and Sink. The best game/science experiment ever. Nanny taught us how to play - David Letterman is a fan also. I can highly recommend it!

Ain't It Great to be a Rat!

Ain't it great to be a rat

Ain't it great to be the big cheese

Cause a rat is where it's at

We can do just as we please!

This evening was Elizabeth's big show for Way South of Broadway music camp - they performed RATS! a musical version of the Pied Piper and Elizabeth was a rat!

This video is terrible - but at least you can hear the singing!

At least she took a nice picture with Grandma and you can see her face paint!

Oh Yeah! Oh Yeah!

Miles did a wee wee - oh yeah! oh yeah!
He did a wee wee in the potty - oh yeah! oh yeah!

Fire Hat and No Pants - quite the look. Miles is doing super well with the potty training situation - yesterday and today, we have stayed home ALL DAY and he has been using the potty! The only trouble, is that he seems to only get it when he's not wearing pants. So he has been naked ALL DAY - what will the neighbors think?! But today, he did a big stinky poo in the potty and I think that is probably going to cement the understanding of the potty situation for him. So, now all we have to do is to get him to wear pants...

Fort Worth Photos

Big Jake

We had a great (hot) day in Fort Worth over Memorial Day. We had visitors from England and Houston - we had a houseful! The kids had a great time watching the cattle drive, getting balloon hats, seeing the Grapevine train on the turntable and of course getting to sit on Big Jake.

No Nap Situation

Miles as a Texas longhorn

Back in the day - on the rare occasion when Miles or Elizabeth wouldn't take a nap - Mark would call to ask how our day was going and I would say "we have a no nap situation". This just about summed it all up - everyone was tired, no one had a break (me) and bedtime was going to be at about 6:30pm.

As of today, officially, every day is going to be a no nap situation. Miles has given up the nap. He says he is not tired and just shouts when I put him in his crib. I've even started waiting until 1pm and even that doesn't work. So, he is officially done and I am officially cranky. But as of today, I am accepting the situation instead of fighting it (which is what I have been doing for the past month!)

Is it 6:30pm yet?

Spring Show for Miles

Miles had his big end of school spring show last night. He did fabulously of course, as only a parent could say. He showed the audience his belly, put his hands in his pants, didn't sing, but did a GREAT job with the actions for the songs. Especially the song about God being big and mighty, he showed everyone his muscles! Of course, I didn't catch that on film...

I don't quite know how to make these pictures display how I want them too... but here ya go - excuse me if they are spaced a little weird.

Here he is after it was finished hooray!

Hope you are all well!

Sinus Infection

Well, shocker, Elizabeth has a sinus infection. She has become more boogery and has had more drainage over the past couple of weeks, until this past weekend, when she kept clearing her throat and her voice sounded like her nose was congested. So, after a call to our wonderful ENT (who got us in the next day - I love them) and her appointment on Tuesday, she is on Bactrim 3 x a day. I have to say that I think she is improving already. He did take a "nose culture" much to Elizabeth's chagrin - it made her eyes water but she did an excellent job and begged for a Webkinz - but I am such a mean mom, I said no, how about a snack and a drink from the gift shop instead. So, we'll see if the culture suggests she should have a different antibiotic or if in fact she is on the right one - which he chose because of her culture result in February (when she wasn't sick so we didn't treat it). So, we are hanging in there.

Miles is still coughing but his runny nose is clear and it has only been a couple of days this go 'round - we'll just keep an eye on him to make sure he doesn't get Croup again.

Just the same old stuff around here! More storms tonight - hopefully not as bad as last time. But, time to unplug the computer in anticipation of loads of lightening.

Dentist Too!

Well, it was Elizabeth's turn to be a Rockstar at the dentist yesterday! She came out saying - "I Love the Dentist!" Wait until she gets a cavity.... She keeps the entire office in stitches. I surprised that they can get her to stop talking long enough to do the exam! (She was a bit nervous.) They are recommending that she gets her back molars sealed and that she has nitrous oxide - we'll never get her to stop talking after that! When she was in the hospital back in September and she had to have her PICC line moved, after that anesthetic - she was VERY chatty and very funny too. She definitely brought some comic relief to a stressful situation.

This weekend was big - she has lost her first tooth ever and the tooth fairy came. Look at that smile! It came out while she was brushing her teeth and didn't seem to be a big deal. I remember having wobbly teeth as a kid and being so anxious about it coming out, they would get to be dangling on a thread and it just makes my skin crawl to think about it.

Mrs. Beauregarde

Well we were proud parents last night when Elizabeth had her big stage debut as Mrs. Beauregarde in Mr. Wonka and the Chocolate Factory. This is her big scene with her daughter Violet (in matching outfit). Violet takes the experimental chewing gum meal and turns into a blueberry (off stage of course) and Mrs. Beauregarde reacts accordingly...

Crazy Texas Weather!

Wow, it was windy last night! This is my neighbor's trampoline that flew up and over their fence (at the left hand side of the picture) and landed on my other neighbor's garage. Luckily, we only have a bit of a wobbly fence and nothing more serious than Miles waking up at 4am and not going back to sleep.

So, we went about our routine as normal, but it took longer to get everywhere since since there were lots of detours due to power lines being down in the roads and lots of traffic lights that weren't working.

Crazy Texas weather!

Dentist

Miles had his first visit to the dentist today and he was a rock star! He ran into the office, climbed on the climbing frame and slide, talked to the other patients waiting for appointments like they were his best friends, then when his name was called, ran back to the dentist's chair.

Miss Ginny the hygenist cleaned his teeth (while he watch the Bee Movie with headphones) with the metal poker thing and then the buzzing brush thing and he just hung out and watched the movie.

Dr. Marianne the dentist said he should start flossing since his back molars are touching and that we should start working on holding water in his mouth and then spitting it out so that he can move up to flouride toothpaste. That's all we need, practice spitting water... hmm...

The attached picture is what happens to toothpaste when Miles is left unattended.

Duh

Well it's official, Elizabeth is now a smartbutt just like her father. She told me DUH twice yesterday. I don't even remember what the first one was about becuase I was so shocked. The second one was something silly like -

Me: Do you want a blah blah? (I don't even remember what I was asking her about)
Her: (said in a very quiet voice) Yup
Me: Yes? (because I really didn't hear her very well)
Her: (in a very loud voice) DUH! Yup is the same as Yes!

So, after I sent her to bed which in our house isn't very effective or immediate because she still has to do her Singulair, nasal wash, brush teeth, nose spray and then bed.

But after I got Miles in bed, we had a big talk about how Duh is the same as calling someone Stupid and I knew that's not really what she meant to do - right? So, since my fall back plan is always to read a book about it - whatever 'it' may be - fortunately, the book she has from the library this week is Kitty Princess and the Newspaper Dress which is about a very rude and demanding Kitty Princess and another recent favorite is called Feelings. Both books really made the point, I hope, that talking like that isn't really something she wants to do - is it? And quite frankly even if it is - it is not acceptable in this house. But, my friends say it... well that doesn't make it okay for you to say it. Yikes.

Camera

I can't believe that I have misplaced our little pocket digital camera AGAIN. I can't find it at least once a week. It is so small. I leave it in the car - I leave it in a pocket - I tuck it in a bag when I am bringing stuff in the house from the car and that is when I really can't find it.

So, I was going to post cute pictures of the children at the park yesterday. But you'll have to wait until I find the camera. I am on a new kick about being more active with Elizabeth since exercise is the best lung clearance there is - so we have been going to the park lots, especially since the weather has turned nice.

So, I will hopefully update with pictures this weekend.

Spring Break next week - woo hoo!!

St. Louis

At the end of February, we took Elizabeth to St. Louis to see a doctor at Washington University to be evaluated for Primary Ciliary Dyskinesia (PCD). My Mom and I took Miles too and braved the Missouri winter to see if we could get any definite answers about Elizabeth's "lung issues" as we seem to call them. We were gone for 3 days, 2 days travelling and one day at the hospital. She had multiple tests and at the end of it all, she Probably has PCD but we are waiting for a biopsy result that will probably take 4 months, to come back and even then it might not have contained enough nose cilia and might not show anything.

So, where does that leave us?

We are still doing the same thing - which is fine - really! We have been treating Elizabeth as if she has PCD since January of 2004 when we started The Vest! So, we know she has asthma (diagnosed in April 2004) and we really think that she has PCD. So, we treat her for both and watch her closely.

So, what will a definite diagnosis get us?

Well, access to the latest and greatest treatments and care - oh yeah - we have this already, Wash U let her in the study since her Nasal NO was so low (a primary indicator for PCD). Maybe a sense that we are not looney for thinking that she is sick all the time and there is something wrong with us for being paranoid parents (oh yeah we know we are looney anyway).

Hope you're all doing well!