The Great Big Medical Round-Up

Last week, KayTar saw a new geneticist. Our old one has moved away, following a job offer. This is the first specialist we've been forced into switching, though we've switched a couple (neurology/ophthalmology) for our own reasons. I was a bit nervous about the switch, but the appointment went very well. He had read KayTar's mammoth chart and was QUITE surprised to meet our bubbly, intelligent little girl after first seeing her on paper. Her last genetics appointment was over a year ago and her development has really taken off since then. It IS surprising! He ordered another chromosome microarray (the test has improved by leaps and bounds since her first one two years ago), and an acylcarnitine panel (for disorders where the body cannot properly breakdown fats). He fully expects the latter to be negative, but wants to rule it out definitively because her episodes seem to have a nutritional component. Unfortunately, this meant that KayTar had to have a needle stick, which she had been worrying about since she woke up. It went BADLY, poor kid, but we got the blood we needed and then got a special treat.

He also suggested, in a sidestepping not-exactly-my-area kind of way, that we bring her in for her next episode and attempt to get an MRI and EEG while she is in the throes of it. He said that some of these migraine variants cause observable changes in the brain that can be picked up on MRI, and the reason behind the EEG is self-explanatory. The pediatrician agreed, but said getting the MRI portion might be impossible, though we can try. The neurologist said that he doubts the MRI will show anything of value, but thinks the EEG is a good idea. So if her next episode falls between 8 and 5, Mon-Fri, I will take her in to the ER and see what we can get done. I hate the thought of it so much! I love the emergency department as a volunteer, but as a parent? IT SUCKS. The thought of bringing my writhing, vomiting, screaming, light-sensitive kid into a busy, bustling ER with insane wait times just fills me with dread. However, it has been nearly THREE YEARS since she has been evaluated for one of these, and they have evolved a lot since then. I think, in the long run, this will be worthwhile. I'm just not looking forward to it. The good news is that I'm making friends in the ER, so we might be able to get what we need a bit easier. Tonight I'm going to mention that we might be in as patients on Monday, so they will recognize me without my bright red vest, with any luck they can pull a few strings for their favorite volunteer.

Also, just in case this episode is NOT cooperative and falls outside of the 8-5, M-F hours, I spoke to her doctors about abortive medications (those that STOP migraine activity, rather than prevent it) so we can attempt to treat it. The last one was just so horrible, not even the Lortab could touch the pain...if they aren't going to stop happening on their own, I'd like to at least attempt to cut them short. 17.5 hours is too long, I don't want to know if they are going to get any longer. He's prescribing Imitrex 5mg nasal spray, if the first dose doesn't work, we can give a second in 20-30 minutes. I don't know how much luck we'll have giving her a nasal spray, but the other choice was a dissolving tablet and we have ZERO chance of giving her medications orally, so nasal spray seemed the way to go. The hope is that she tolerates the administration well and it is effective against these episodes. Either way, we're trying something new with this next episode, either testing in the hospital or testing out a new medication. Wish us luck!

Yesterday I received a call from the allergy clinic to remind us about KayTar's appointment next week (involving more needle sticks AND skin testing, she is going to be SO upset...my stomach is already flip-flopping over it) and to tell us NO MORE ANTIHISTAMINES until she is seen next week. I relayed the message to Josh, since we shift parent more than team parent these days. When I got home from math class last night (which I have a 101 in!) KayTar was coughing up a lung. OF COURSE. She hasn't had a cough or runny nose in weeks, MONTHS even. Now, as soon as we can't give her Benadryl, she is sick. We always treat her cough with Albuterol and Benadryl, to open the airways and dry up the drainage, now we can't! It is a throwback to the olden days, pre-tube, before we could medicate her properly. We'll survive, we did back then (though we treated her coughs/cold with cyproheptadine suppositories, a less effective antihistamine, back then). Hopefully, this summer cold is short-lived and doesn't escalate to the nightly vomiting-from-drainage level, and we won't miss our antihistamines too much.

She has some nonspecific inflammation around her g-button site, too. A couple of weeks ago, she had of folliculitis (staph) on her tushie again and it developed around her tube as well. We treated with mupirocin, both areas. Her tushie issue was resolved, but the g-button site never quite got all the way there. Last night it was noticeably more inflamed, but didn't have the little pustular areas associated with folliculitis this time. I sent photos to the pediatrician who recommended treating for yeast and watching it closely, so we'll see if this does the trick! If the red area grows or pustular areas develop, we will have to reevaluate. We have a vacation planned for this weekend, so I'm hoping that it won't be interrupted by episodes, illness, or skin-infection issues!

She can swim!

This is the first physical milestone KayTar has achieved on anything remotely resembling a normal developmental schedule, and I think it is even a little bit sooner than the average! We are pretty proud of her!

Stuff in my car.

My bookbag (textbook, notebook, calculator, pencils, protein bar)
Grey zippered sweatshirt
KayTar's backpack (diapers, wipes, emergency medicine bag)
EpiPen Jr
My red volunteer vest
My hospital lanyard and ID badge
A bottle of water that is 3/4 empty
Bumblebee Transformer
Pink feather boa
Hot pink safari hat
Magic wand
Headband with attached flower petals
Hello Kitty necklace
Books: Hospital, Planning a Life in Medicine, and Jack Sparrow #1
My purse (wallet, cell, Epipen Jr, bandages, pen, Sen. Gillibrand's card)
Portable DVD player
Max and Ruby DVD
Blue stuffed duck
Hedge trimmer
Umbrella stroller
Two CD cases
Miniature cooler
Point and shoot/video camera
Garage door opener

I think it might be time to clean.

What's in your car?

A tale of two near misses.

Saturday morning, KayTar woke up with slightly puffy lips and was wheezing a bit.

Her lips were not nearly as swollen as they were for her previous reactions, but they were noticeably puffier than her usual little pout.

She said her lips felt funny and wanted some Chapstick, so I gave that to her, with a side of Benadryl to prevent the swelling from getting worse, and Albuterol for the wheezing.

I asked her if she had anything to eat at the YMCA the previous night and she said she had, even though they've been instructed not to feed the KayTar due to allergies. She said it was "pop chicken" and she spit it out because it was "so gross it made her THROW UP." (I still haven't been able to reach anyone who knows what she was given on Friday. I think it is unrelated because of the time that had passed, but I still want to know.)

The swelling did not progress any further and she fell asleep for a while. I watched her closely, but she was fine for the remainder of the day.

I don't know if it was an allergic reaction or not. I feel certain it wasn't a reaction to whatever she has reacted to previously, as reactions get worse in intensity, they do not lessen. I will mention it to her new allergist in a few weeks and let her decide what to do with the information.

****

Yesterday afternoon, KayTar said that her head was hurting, so I gave her Tylenol.

Then she said her eyes were hurting, so I held my breath, hoping it wasn't an episode.

Then she said that her eyes were spinny and she couldn't make them stop, so I turned out the light, darkened the windows, got the emesis basin, put down towels and waterproof sheets under her, and laid down with her in the silent, dark room.

She said she felt better. Then she said she felt spinny. She gagged a bit. Then again, she said she felt better.

I suggested that we lay together and rest for a while, she muttered her agreement and fell fast asleep.

A couple of hours later she woke up and was totally fine. She was fine for the rest of the day.

It never turned into an episode, though it sure danced close to the edges.

A bit of everything.

BubTar is healing up nicely, thanks to our good friend Amoxicillin. I love that stuff, such delicious childhood memories. I was sick a lot as a kid and me and Amoxicillin had loads of good times together. BubTar still has the rash. Though it has faded, his skin is still sandpapery. His fever and sore throat were gone by the second dose of antibiotics. Truth be told, I'm a bit thankful for the rash. We had planned to wait the sore throat and fever out until Monday before seeing the doctor, until he got the rash that clearly pointed to strep rather than a viral illness. If we had waited, we wouldn't have been able to see OUR pediatrician because she is on a medical mission in Honduras this week. How cool is that?! I can't wait to hear about it. I'm glad we were able to get BubTar treated before she was out of the country, though.

****

We have a new pseudo-theory on KayTar's episodes. It is a loooong shot, but there might be something to it. The only difference in the episode-free 6 months and the episode-riddled last few months, is the TYPE of Pediatric Drink she has been taking. For the episode-free 6 months, she was on name brand Pediasure, thanks to insurance. Once the insurance stopped and the stockpile was gone, we switched to the generic kind. We bought a lot of it and even after she was re-insured, we continued to use the generic kind until it was gone. She recently has started taking Pediasure brand again. Although the formulas are meant to be comparable, if she has a metabolic disorder that is not characterized yet, something as simple as a cheaper type of protein or carbohydrate (or other component) might not be properly utilized by her body. Now that she is back on the Pediasure brand, we'll see what happens with the episodes. The complication of this would be, of course, if she needs such a specific type of nutrient, even if she eats enough table food to equal a Pediasure in calories or proteins, it might not have exactly what she needs. We need to make sure she still gets 3 Pediasures per day, in addition to her table foods. We don't want her table food eating to suffer, so it would be GREAT if we could ever get her feeding pump approved to do a slow overnight feed to keep her balanced. Like I said, it is a long shot, but it is the only change we can pinpoint between the two time periods.

****

My first math course of the summer is halfway over and I'm pulling a 100 so far. Even better than that, I'm ENJOYING it. Math. Who would've thought!? When I was a kid I would get grounded for getting B's in my classes, except in math. B's in math were allowed. It wasn't my subject. That attitude stuck with me and I have a long history of hating math, but after spending the last two summers in math courses, I've discovered that I don't hate it. I actually understand it well and enjoy working through the problems. It is predictable and even a bit comforting. The amount of math involved in premed course work was definitely a concern for me originally, but I think I'll do just fine with it. I do plan on continuing to take my math courses as minis, though, it all seems much more cohesive when condensed into a shorter time period. Four hours of math, three nights a week doesn't leave much time to get rusty.

****

Summer is fun.

Sick kids.

Yesterday, I worked an extra day shift in the emergency center, and I have to report that I'm still thoroughly enjoying myself. I would volunteer every day if I could shoehorn it into my schedule, though, between the kids and school, that would be impossible. As it stands, I had to rope my mom into watching the kids for me yesterday so I could take that shift. I set it up earlier in the week when I thought both kids would be at summer activities on that day, KayTar at camp and BubTar at VBS. Well, there was an incident at KayTar's camp and she wouldn't go back all week. Then, BubTar developed a temperature during the night on Wednesday, so he was home sick from VBS yesterday. Luckily, my mom could watch my sick kid, so I could go take care of other people's sick kids. I didn't want to call in at the last minute.

On Wednesday my shift was so busy that I didn't even get a chance to check in on all the patients a single time! I spent most of the shift doing transport, which I also enjoy, but I wish I could have popped in at least once and checked on the patients. It is hard being trapped in an ER room for hours on end, and I think that just having someone check on you, even if you don't need anything, is helpful. Thursday during the day shift, things were much quieter and though I did quite a bit of transport, I also had enough time to check in on all of the families a few times each. I am only able to do small things, but I think when you are stuck in the emergency center for hours, often all day or all night, those little things can make it a lot easier.

I've seen tiny babies in for rule-out meningitis, and sometimes it hasn't just been a rule out. I've taken kids who seemed hilarious and healthy to the hem-onc floor. I saw a 15 year old come in with chest pain, but the true, underlying story was that she has a three year old at home and was stressed to her breaking point. I've seen lots of children be discharged and taken lots of children to their new inpatient rooms. I've taken many kids for x-rays and CTs. I've delivered toys and books and movies. I've sat with kids so parents can run to the bathroom or to get food. I've answered questions and pointed people in the right direction. I've cleaned used exam rooms and brought patients and families food and drink and blankets. I've realized I need to learn some applicable Spanish to be more effective in my position. I've spent hours on my feet, constantly in motion, and I've loved every minute of it.

Yesterday one of the nurses said, "You are wonderful, who can I tell about you?" I jokingly replied, "Everyone! Tell everyone about me." She smiled and said, "You'll work here one day, I think." I said, "You know, I am a premed." She said, "See! I knew it. You'll definitely work here one day." I think she might be right.

PS: It looks like BubTar little fever and sore throat is probably scarlet fever, OH JOY! He developed the rash while I was in math last night. We're heading to the pediatrician's in a bit for a strep test and antibiotics. He has to stay in the hall while I register him, because he's too infectious for the waiting area. DOUBLE JOY!

(click for larger version)
Poor rashy guy!

A Little Off the Top

BubTar got his hair cut for summer yesterday. He was getting so frustrated with his long hair getting in his eyes during swim team that we decided to shave most of it off. As soon as she shaved off the bulk of the length, I thought, "Oh my goodness, there's my baby!" He looked so like his baby/toddler self without all that hair, I may have even gasped aloud when he looked over at me to give me a thunbs up, his seal of approval. After he was done, he stood up and unfolded himself from underneath the barber's cape, I was shocked to see how tall and mature he is. Every time I've looked at him since, I've had the same experience. "Oh my baby! Oh my big kid!" I'll adjust to his new look soon, but for now each and every time I see him, I see both the past and present etched on his face simultaneously, my baby who is now such a big kid.



I started the blog the month this photo was taken, I can't believe he's grown so much in that time!

Not all work and no play...

First Week of Summer

We've completed half of the first week of Busiest Summer Ever, and so far, so good!

Josh started his summer classes on Monday. He is taking Composition II and a criminal justice course this summer. Since he decided to hop on the school bandwagon after me and because I have 3 million more years of school ahead of me, my class schedules are the priority, but he's found a way to fit a couple in, too. His boss is allowing him to come in later in the morning in exchange of his lunch break, so he can squeeze classes in. When I get home at night, the kiddos are in bed and he's busily studying. It is nice not to be the only person around here with my nose in a book!

I started the first of my two summer classes on Monday, as well. The teacher is roughly my age and a little green, but most of what we are covering is review for me so I think it will be just fine. I'm a little worried for some of my classmates, though, we've just started and a handful of them are overwhelmed and confused already. We have a test next week, as well as every other week, because it is only a 5 week course, after tonight there are only 4 weeks left! Then I start the next one...

BubTar started swim team on Tuesday night. He had a great time. He knows one of the other boys from school and I know his coach because I used to teach her! He's already trying new things in the water and practicing his laps when we go to my mom's house for swimming, and I think he'll really enjoy swim team!

Last night, I had my first volunteer shift in the emergency center at the Children's Hospital. I loved it! I got there early and stayed late, even. It was fun just to be in the ER, but it was even better because we've personally been in that ER several times and having the chance to walk around and try to make it easier on the parents and patients was extremely satisfying. I just did little things; checking in on the families to see if they needed anything, bringing movies, toys, and books to the kids, transporting patients, sitting with the kids if the parents needed to leave the room, checking in at the various nursing desks to see if they needed anything, that sort of thing...but it was really wonderful. The nurses were great and seemed to really appreciate it. When I left one of the nurses said, "My patients were better cared for because you were here tonight." I'm already looking forward to my shift next week, though my feet were really beat up last night (I didn't know you could get blisters this size!) and I need to fix the footwear situation first.

Tonight it is back to math and swim team, tomorrow night it is my turn to take BubTar to swim team, and Saturday is that endangered creature known as a Free Day! Whatever will we DO? We should probably rest a bit, because next week we add in KayTar's day camp and BubTar's VBS to this crazy schedule!

Wordless Wednesday: Yum.

First Day/Last Day

This is what I planned to post last Friday, before my blogging plans were precluded by that rather nasty episode. Friday was KayTar's last day of the first year of KayTar's school life. She had such a wonderful year and when I said goodbye to her teachers I had to pretend that it wasn't the end of the year to prevent myself from crying. They've been so wonderful with her and we will really miss them all, her teachers, her aides, and all the other teachers in the PPCD department. They've all taken a shine to KayTar, and she to them. I'm looking forward to her new program next year, but I hope the staff is as wonderful as the one at her current campus.

I was so nervous when she started school, my sickly, quite delayed, partially deaf, odd-duck of a little darling going off on her own for the first time. It has been wonderful, though, we've watched our quirky little caterpillar bloom into a social butterfly. So many of her developmental gaps have closed and she met most of her IEP goals for the year.

Medically speaking, her hearing loss progressed from moderate-severe to profound, rendering the cute little purple hearing aid useless. She had surgery to have her tonsils and adenoids removed and to have a g-button placed, which markedly improved her health and overall development. She missed over half of her first semester due to illness, but post-op, her attendance really improved. She has gained both height and weight this year, since having her tube placed (you might notice how much shorter her jumper is in the second set of photos, it is about 2 inches shorter on her in spite of lengthening it a bit). Her episodes stopped...and then restarted. She acquired a scary food allergy, which we suspect to be peanuts. We did more testing and still received no answers.

Developmentally speaking, her speech has normalized. The tendency she had to speak in direct quotes and parrot questions back to us is gone. She's fully conversational now and she uses this skill nearly non-stop. She can now walk across uneven ground, such as grass or mulch at the playground most of the time. She can walk up stairs in an upright position, relying on her stronger leg to do the work, sometimes without the handrail if I am scaffolding her. She can jump with two feet off the floor. She learned to write her own name.

It has been a big year for our little girl and we could not be more proud of everything she has accomplished!


First Day


Last Day




Coincidentally, today is MY first day of school for the summer semester. Too much math, here I come! Today starts the craziness that is school on Monday, Tuesday, Thursday nights and volunteering on Wednesday nights, not to mention BubTar's swim team practice on Tuesday, Thursday, and Friday nights. Let's not discuss VBS and KayTar's camps or the fact that Josh is also taking summer courses. Isn't summer relaxing?

Record Breaker

KayTar had an episode yesterday.

It didn't end until today.

Yesterday, around 1 in the afternoon, she called out, "Mom, my eyes are sick!" and quickly followed that with "I feel spinny!" She was leaning her face against the sofa in an effort to stabilize herself. I took her to lay down and gave her transdermal Zofran, just in case. She was completely lucid for an hour, only complaining of the dizziness. She couldn't sit up or stand, which she thought was hilarious at the time. She was acting a little goofy, too. During this time I noticed her eyeballs making tiny back and forth circular movement, like nystagmus, but rotational rather than side to side or up and down. They were very small scale movements, unlike the larger rolling eye movements we've seen in the past with these.

About an hour into the episode, she started vomiting, and that was quickly followed by the onset of the lethargy and pain. It was extremely painful for her. She would let out scream after scream when the pain hit her, then it would subside...then reemerge. I gave her Lortab, but it didn't seem to touch it. She continued to vomit in spite of the Zofran, too. She was incredibly light sensitive, too. We blacked out the windows and turned out the lights and she still kept a blanket on her face. It went on for hours. Seventeen and a half hours.

I went to bed, next to her, around midnight. I wanted to get a little nap because I was sure it would be over soon and she would be wide awake, but that didn't happen. She woke several times in the night, but was still unbearably light sensitive and sick. This morning she woke up around 6:30, back to her old self, all the symptoms were gone.

To my recollection, this is the worst episode she has ever had. The previous record for length was only 11 hours. The last time she had one that involved pain, it was April 2007. They are coming regularly again, it has been 38 days since the previous episode, which was 38 days after the one before that. We don't know why the episodes stopped for six months, but it is obvious that these are now back, following a schedule just like they used to.

I felt useless yesterday. I gave her medications, made the room dark and quiet for her, wiped vomit from her face and body repeatedly, but I couldn't do anything to help her. The medications weren't effective against this. As dark as the room was, it didn't relieve any of her agony. As soon as I wiped away the vomit, more spilled out of her. I could do nothing except wait for it to end, wait for her to feel better, wait for her to come back to me, and this time it took much too long.

25, going on 16.

A few of months ago, I had dinner with our pediatrician to discuss medical school, residency, and balancing a medical career with having children at home. The waiter took my drink order and promptly asked for my ID. No big deal, I always get carded. Always. I pulled out my wallet and reached for my ID and only find my college ID. No birth date. I dug through my purse, but still couldn't find my driver's license.

He didn't serve me.

In the car, after dinner, I found my ID. In my wallet. Hiding behind another card.

****

A few weeks ago, I went to a Babysitter Mixer with Julie. If you haven't been to one of these, it is like speed dating for childcare options. Helpful if you don't know any sitters, and are uncomfortable approaching random people on the street and asking, "Hey! Would you like to tube feed my child?" Instead, it went something like this:

"Hi! My name is Kyla, I have a 7 year old and 4 year old. My 4 year old has special medical needs; feeding tube, various medications, asthma, food allergy, epipen. Are you comfortable with that sort of thing? We have a cat and a dog, are you okay with animals? Do you have CPR certification? Is transportation an issue for you? How much do you charge?"

Shockingly, I found quite a few takers and not a single person ran away screaming from my little introduction. One of the sitters is even going to college for a degree in Special Education. SCORE!

However, I was mistaken for a sitter THREE times. The last one takes the cake, though. This conversation was between, me, Julie, and Julie's friend.

Julie's friend: I didn't get a chance to meet you, what's your name?

Me: Kyla, I'm here with Julie.

Julie's friend: Oh! How did you meet?

Me and Julie: Online.

Julie's friend: Did you find any good job prospects (thinking I'm a sitter)?

Me: Oh! No. I'm a mom looking for a sitter.

Julie's friend: Oh my gosh! I'm so sorry, but I was thinking GOOD LORD, WHY IS JULIE PICKING UP TEENAGERS ONLINE?!

****

Last night I had training for volunteering in the pediatric ER. Most of us were there early, but we had to wait until 15 after to start, in case any stragglers showed at the last minute.

As we were waiting, the other volunteers, who happened to all be junior volunteers, started discussing what HIGH SCHOOLS they attended. Everyone named the school they attended, while I sat there quietly, and then they all looked at me and waited, expecting me to name my high school, too.

The girl next to me said, "Well, where do you go to school? Wait--do you go to school? You do, right?"

I said, "Well, not to high school, but I'm a college student, a premed."

Everyone looked surprised and a few people said, "You don't LOOK like you are in college already."

I said, "Yeah, I'm married and have two kids, too."

Their jaws collectively hit the conference table.

My child, every child.

I have a medically needy child.

Every day, she needs Qvar, Miralax, and specially compounded Prevacid.

Most days, she also needs Albuterol and Benadryl.

Some days, she needs Zofran for vomiting, Triamcinalone for granulation tissue, Vusion for her g-button site, too.

We never leave the house without her EpiPens, Benadryl, Zofran, Albuterol and spacer mask, in case of allergic reaction, asthma attack, or neurological episode.

She has a feeding tube and receives 3-4 daily feeds on average. This requires shipments of Pediasure and tube attachments on a regular basis.

She sees 9 physicians for a variety of issues that are without overall diagnosis; our pediatrician for regular medical issues, a neurologist for her episodes and underlying neurological problems, a geneticist, an ENT for her profound unilateral hearing loss, a GI/feeding disorders specialist for her constipation and feeding problems, an ophthalmologist for her minor sight impairment, a pediatric surgeon for her g-button placement and subsequent checks, an orthopedist for her joint ad muscle problems, and an allergist for her curious food allergy.

She needs weekly therapies, occupational to help her overcome her food aversions and physical to help her strengthen her muscles and improve her balance.

She is also uninsurable according to the for-profit insurance sector.

She has been uninsured twice in the past year, through no fault of ours, and while we are incredibly thankful for the CHIP plan she is currently covered by, to get her enrolled my husband has had to take a pay cut and we've had to pay for unnecessary childcare to lower our income sufficiently for qualification. There are currently no other options for her and without insurance, we could not provide for her basic medical needs.

This year I've worked with some wonderful people and organizations attempting to rectify this situation in our state by creating a CHIP buy-in program for children who have no other insurance options, but are above the 200% FPL cut-off guideline. I've shared our story several times, at the Texas Capitol, at the United States Capitol, in a magazine, in newspapers across our state, on television, and at a few other speaking engagements. I've done what small part I could to raise awareness on this issue, because before it happened to our family, we simply did not know it happened. We did not know that there were good, hardworking men and women who wanted and needed insurance for themselves or for their kids and it simply was not available to them. The bill that was created to cover these kids was a solid, bipartisan supported bill and we felt that it had a great chance of being passed. Unfortunately for the children in our state, the legislative body allowed another issue, namely Voter ID, to crowd out this CHIP bill and last night the House of Representatives closed session without ever voting on it.

We, as a family, were counting on this. 80,000 other Texas families were counting on this. The uninsured children in our state were counting on this. And in the end, despite rallying over 1,000 calls to the Speaker's office, the issue was treated as if it were unimportant, left to die without even a vote. In spite of the Voter ID clogging, this bill could have survived if action was taken. Our state Senate passed it out THREE times, but the House dropped the ball repeatedly. Though, even if the House had voted it through, our governor had already expressed his disapproval and likely would have vetoed it. This is why Texas is the national leader in number of uninsured children, because they simply are not a priority when it comes time for action, and I find that inexcusable.

Instead of breathing that long awaited sigh of relief, last night my husband and I discussed what to do next. In a few months, he's due to receive another raise and the following month we will have an income check. He's going to have to request that he not receive a raise this year, to prevent our children from being dropped from the program. And next year? And the next? We will continue to do this for as long as necessary to provide KayTar access to the medical care she needs, but it should not be this way. Every child deserves access to affordable comprehensive medical care, regardless of their health status or income. Healthy or sick. Rich or poor. Yours or mine. Every child.

Even this child.

Cross posted at Hopeful Parents.

Things KayTar says...

While looking through my anatomy textbook with me :
"Oh! Its like a computer that you can turn the pages!"

After being told that I need some quiet time to make business calls:
"FIRST get me Pediasure and cartoons, THEN make your business calls."

When getting creative with song lyrics:
"I like to poop it, poop it!"

And the hit sequel...
"P-p-p-poopoo face, p-p-poopoo face!"

On familial relationships:
"Daddy is my favorite! Mommy, you can have BubTar."

"Daddy is the prettiest! Mommy, you can be the awesomest."

After incorporating "ain't" into her vocabulary, I asked her where she learned that word:
"I ain't gonna tell you."

When having her blood pressure taken:
"It is hugging me because it is full with loooove."

As I'm buckling her into her carseat:
"Hey baby, wanna go for a ride?"

On wardrobe:
"You're a farmer and I'm a princess." (what?) "You wear (with disdain in her voice) JEANS. And I wear (with a soft and dreamy voice) dresses! That's why I'm a princess and you're a farmer."

On medical ethics, namely "First do no harm.":
"Well, when the nurse poked me with that needle? That hurt. She HARMED me."

At random times:
"Mom, you're an ol' coot!"

Texas CHIP Bill is in peril!

Governor Rick Perry has stated he is not in support of the CHIP expansion (buy-in) bill that would provide insurance for 80,000 uninsured Texas children, including those like our KayTar who are considered uninsurable and fall through the cracks of the for-profit insurance industry. If the bill makes it to his desk, there are major concerns that it will be vetoed based on what he has said. This bill has had strong bipartisan support, as well as strong support from the business community in Texas, and should not be facing a veto at the hands of the governor.

If you live in Texas and want to help, here is what you can do:

-Contact Rick Perry's office by email and/or by telephone (800) 252-9600 and say "I and the majority of Texans DO support CHIP"

-Contact Speaker Straus by email and/or telephone (888)327-2086

-Contact your local representative (you can find out who your representative is here)

***There has been a change, the amendment I mentioned was voted off, so when you call your Rep and the Speaker, say, "Pass CHIP buy-in. A clear vehicle already exists in SB 841 and HB 2962."****

All kids in Texas deserve access to affordable, comprehensive healthcare, regardless of their health status or income, let's remind our legislators of this.

Please feel free to pass this along!

Like drawers of a filing cabinet, so are the days of our lives.

Medical:
This morning KayTar had an allergist visit. We love allergist visits. Seriously, we do! In addition to the fact that KayTar has decided that "specialist visits" are actually code for the KayTar Variety Hour (complete with a captive audience), our allergist has really warmed to KayTar and seems to genuinely look forward to seeing her. Turns out her latest labs didn't register any allergic reaction at all, so we're still avoiding nuts, but really unsure about the whole nut allergy. Because some people are reactive even though the immunoCAP is negative, the next step is a nut challenge, which they only do in the hospital. She's referring us to her husband, who is an allergy/immunology fellow at our children's hospital, at least in part because she said she wants him to meet KayTar, because she's such a hoot. I called about scheduling today and should hear back in the next couple of days. On a sad note, this was the last time we'll see her! They are moving to another state once his fellowship ends. We've only been seeing her for a few months, but she and KayTar click so well, we're sad to see her go. Strangely enough, when I called to schedule her genetics follow-up this afternoon, I discovered we were losing TWO doctors! Her geneticist is also moving out of state at the end of the month. We'll be seeing a new doctor for our follow-up visit, we're hoping he can look at the case with fresh eyes and see something someone else overlooked, since we've hit a bit of a dead end.

School:
I spoke with KayTar's new school and BubTar's transfer is a go! Unfortunately, they do not have a full time GT class, though, they do tend to group the high achievers together. There is a pull out program for GT and the teacher will be able to give him enrichment activities to keep him engaged in the regular classroom. While I'm a little bummed that it isn't a dedicated GT classroom, it sounds like he'll manage just fine. We could pursue grade level testing to move him upwards and I don't doubt that he could move onto third, but we think it is best that he stays with his same aged peers. He's just excited that there is bus he might get to ride and that there is no weekly chapel to sit through, such are the priorities of seven year old boys.

Other:
The CHIP buy-in bill might not make it through state legislation if they don't get to it tonight, so everyone PLEASE (pleasepleaseplease), cross your fingers, say your prayers, or whatever else you can offer up that this one makes it through.


*I have a 3-drawer filing cabinet on my desk, labeled Medical, School, and Other...as I finished these paragraphs I sat back in my chair and caught sight of the drawers, the recurring themes of my life.

Clusterduck.

BubTar has been attending a private Christian school since he started PreK. Josh grew up in Christian school and I attended as a high school student. When we started our family, we thought that Christian school would be a given for our kids. Over the years, we've sacrificed a lot to keep BubTar enrolled there, possibly more than we should have, and this year we didn't have the greatest experience. His teacher was nice, but for a multitude of reasons, we were never comfortable with her. We decided to keep our heads down and just get through the year, because the situation wasn't terrible...it just wasn't ideal. It turns out, his school is going through major changes in the administration and his current teacher will be the elementary principal, starting next year. This was the catalyst for many, many discussion between Josh and I, as well as discussions with friends who are teachers or have children in public or private schools. After weighing all the pros and cons, we decided to transfer BubTar to public school next year.

We've had a phenomenal experience with KayTar's school this year, both with her teachers and the administration, and after that experience there just aren't enough reasons to keep BubTar in an environment we are less than happy with and pay quite a bit for. The benefits are clear; two children on one local campus, volunteering at one campus, drop off and pick up consolidation, one set of rules and one calendar for both kids, uniforms that don't cost a small fortune, the absence of tuition, and so forth. Our biggest concern was that BubTar will be significantly ahead of his peers in academics. I've spoken to the principal at KayTar's school and she said he would be placed in a dedicated GT classroom to keep him challenged, which we prefer to having him move up a grade level. For our family, right now, this seems to be the best decision.

However, at KayTar's ARD (Admission/Review/Dismissal meeting, for those of you who don't speak the SPED lingo) they told us that she might be transferring to a new elementary next year, for the advanced PPCD program. Last week, I spoke with the director of PPCD and she said that it is a certainty, not merely a possibility. KayTar will be attending the new program in the fall. It sounds wonderful, 6 special education students, 11 general education students, and full time general education and special education teachers, as well as an aide. The classroom is a partnership with Head Start and KayTar might be able to attend the second half of the school day there, too. It sounds like the perfect environment for her and I'm thrilled that she is one of the six students they selected. However, she will be at a new campus with new teachers and administrators and I am a little sad to be leaving her current campus behind. They have been wonderful! Because she will no longer be at our local campus, this means that unless we can get a transfer waiver for BubTar, they will still be on two separate campuses next year. If we can get a transfer worked out, then we still have to worry about proper placement with his advanced academic status. I'm waiting to head back from the principal about all of this.

The majority of my time lately has been consumed by trying to get a rather large number of ducks into their respective rows. My summer classes, financial aid, and scheduling row (this has been a hot mess, but seems to be almost taken care of). The kids' daytime summer schedule row (VBS, K's art camp, summer curriculum). Our family's evening schedule row, combining my schedule (out of the house 4 nights a week), the kids' activities (swim team 3 nights per week), and Josh's availability (he wishes he could say he was unavailable more often, I'm sure). My volunteer commitment row (orientation, interview, health screening, training, THEN volunteering weekly). Summer vacation row (how to squeeze a vacation into all of this). My fall term schedule row (much easier than summer, so far). The kids' school placement row (see above). Ducks and rows, ducks and rows. In less than two weeks, school will be out for the kids, summer activities will have started, I'll be in classes 3 nights each week and my volunteer commitment will have begun...I hope these ducks are in their rows by then, because I'm not going to have any time left to organize them!

The winners are...

Comment #25: JessicaOI

and

Comment # 29: Sarah at Trenches of Mommyhood!

A big thanks to Ridemakerz (and our fabulous pediatrician) for providing the gift cards for this giveaway and to Random.org for its works as my lovely number-selecting assistant.

Wordless Wednesday: Name

She wrote it for the first time yesterday! I had to help her squeeze the I in, because she forgot it.

Now I just have to teach her to write her pseudonym! ;)

Eight years ago today...

This kid...



married this kid...



who happened to be wearing sneakers.



They kissed...



and cut the cake.



She might have been a little too generous with his bite of cake.



Then they shared a cakey kiss...



and made a toast to the rest of their lives.



Eight years later, I still love sneakers, cake, and YOU, Josh. Happy anniversary! Here's to many more wild and wonderful years.

Special Sunday: Ridemakerz

Special Sundays are usually chosen by one of the kids and uninfluenced by Josh or I, but when I was invited to a Ridemakerz promotional party, I offered it up as a suggestion for BubTar's day yesterday. He accepted, though, he did try to talk me into control of next Sunday, just to see if it might work.(it didn't work.) The kids have been looking forward to it all week, but unfortunately, KayTar got sick Saturday and she and Josh had to miss out on the fun! I invited our pediatrician and her kids along, but due to scheduling, they were only at partial capacity, too. It ended up just being she and I and our oldest boys. We still had a great time and we were able to make cars for the missing members of our party! We were assigned a crew member who walked us through the store, directing us to chose our parts and then showed up how to assemble them.

On KayTar's behalf, I chose (we had looked it up online beforehand):

Pink car body
Street chassis with R/C
Yellow tattoo wheels
Daisy rims
Heart-shaped grill
Silver spoiler
Purple neon lights (underneath)
Flower, butterfly, and turtle decals


BubTar chose:

Red fire truck body
Monster truck chassis with R/C
Flame wheels
Cyclone rims
Emergency vehicle lights
Dump truck kit
Exhaust pipes
Side pipes



We encountered one minor problem, although KayTar's lights and music worked at the store, we didn't test the R/C capability until we got home and it turns out her chassis was defective! Taking the brand new toy away from a sick kid who already had missed out on all of the fun went over about as well as you might imagine, but the guys in the store fixed us right up and I was able to deliver the car back to its owner in working condition. All of the kids are LOVING their cars and although there IS an available online counterpart to race their cars, mine strongly prefer the real thing, which is increasingly rare these days!

I'm thrilled we had the chance to create these custom cars and Ridemakerz gave me the chance to pass along the same opportunity to not one, but TWO lucky readers. Actually, Ridemakerz gave me the first $100 gift card and our fabulous pediatrician donated her $100 gift card to be given away here, too. To enter, all you need to do is leave a comment on this post now through 11:59PM Friday, May 22nd, with a valid email address in your comment. One entry per valid email address, please! Open to residents of US and Canada. You also need to be willing to send me your mailing address if you are selected as a winner. I'll contact the two winners via email and announce them here on Saturday.

If you do not have a Ridemakerz store nearby, never fear, you are still able to build a car online and have it shipped to your home (they do ship to Canada, as well, for an additional cost). KayTar and I utilized this feature to build her virtual car beforehand, so I knew which parts she wanted once I got to the store. It was very user-friendly and set up much like the store itself. Of course, you don't get the hands-on, build it yourself satisfaction, but you'll still get a really cool car.

The ARD

It was lovely! Who wouldn't love to sit in a meeting and hear teachers and administrators gush about your child? Of course I think she is brilliant, adorable, and hilarious, but it is nice to know everyone else does, too!

She has made excellent progress with her goals for this year, though, she hasn't quite mastered all of them (hello, potty training!). I can hardly believe this too-smart-for-her-own-good chatterbox was only speaking in exact quotes, unable to answer questions at this time last year. It doesn't even seem possible! We discussed her new goals, which I can give in more detail once I get my copies of the meeting, and set up her accommodations for next year.

She may be changing campuses next year, which makes me a little sad as I have LOVED everyone we've encountered at her current campus, but the opportunity sounds like a good one. They are setting up an advanced PPCD classroom for the district, so the kids who naturally excel, but also need special education services can meet their IEP goals while being challenged beyond the scope of those goals. There will be a special education teacher and a general education teacher present at all times and the class will be a mixture of high functioning special education students and general education peers. KayTar was nominated for being such a little smarty-pants. This will be the first year for the program and they aren't certain it will get off the ground in time, in which case she will stay at her current campus with her current teachers.

I know many parents have trouble with their children getting appropriate service and placement, but (with the exception of that little attendance issue earlier this year) we have had a WONDERFUL experience with KayTar's school and our district. The administration and staff have been friendly and helpful, and everyone knows and loves KayTar. You just can't resist that kid!


This is her school picture. As we waited to go into her ARD, the front office worker asked her, "KayTar, did you show your mom your picture yesterday? I saw it when it came through the office and it was so beautiful!" KayTar made eyes at her and said, "And, did you think I looked just FABULOUS?!" The entire lobby erupted into laughter. She sure is something.

I'm outsmarted, daily.

KayTar has learned the "Here comes the bride, big, fat, and wide!" song from her brother and just looooves to sing it. We're not so fond of it and have been discouraging it. "It isn't a very nice song, KayTar." we say. A few days ago, she prefaced the song with, "Okay Mom, I'm not singing this to you or Daddy or BubTar or ANYONE. I'm singing it about the HOUSE, because this house is SO FAT!"

How do you argue with that?

****

KayTar: I have to pee.

Me: Want to sit on the potty?

KayTar (wearing butterfly wings): No, butterflies don't use a toilet, Mom.

They sure don't.

****

KayTar: Can you change me into my princess dress?

Me: KayTar, I really don't want to change your clothes a hundred times again today.

KayTar: Please? It would make me SO happy AND I will give you this penny--well, actually it is a FAKE penny--but I will still give it to yoooooou.

Somehow, that actually worked.

****

Me: KayTar, do you have a dirty diaper?

KayTar: Yeah. Are you happy I told you I pooped? (she has a habit of lying about it)

Me: Yes, but I would be happier if you just pooped in the potty.

KayTar: But, you are still happy. That's a COMPROMISE.

We are clearly in trouble.

Happy Mother's Day

Photo and video editing at www.OneTrueMedia.com

Two years ago she was just learning to sign and now she's reading poetry to me. I can't believe how far she's come!

Mrs. 'Tar goes to Washington

Wednesday night I flew into Baltimore at about 11pm. Weather and traffic were terrible (it was very nice to have a chauffered car waiting for me so I didn't have to hail a taxi) and it was about 1am before I got to my hotel room. The hotel reminded me a lot of the W in Chicago and I was a little sad to see the lobby wasn't filled with drunken bloggers when I arrived! (Suggestion to Swanky Hotels: You should keep drunken bloggers on staff to loiter in the lobby, they really brighten the mood.) Once I got to my room, I plugged in my laptop and much to my dismay couldn't connect to the Internet. As my hands began to shake from the early symptoms of withdrawl, I dialed the tech support line and whoever it was that answered the phone in the middle of the night was a lifesaver. He hooked me right in, free of charge! After briefly checking in online, I hopped in the shower and tried to go to sleep, but it takes me forever to fall asleep in a new place! This was actually the first time I've stayed in a hotel all by my lonesome, which was a little strange, but also nice and quiet.

My alarm went off at 7am and I started to get ready. I ordered breakfast as advised, but it did not sit well and I ended up getting pretty sick. I thought I had come down with KayTar's stomach virus, but thankfully that wasn't the case. I was fine the rest of the day, just suffered from low blood sugar symptoms once a few hours passed without food. After checking out, I walked over to the CDF office with a very nice man named Thomas and we met up with other participants and drove to the clinic. It took a while for the celebrities to arrive, so we all had a chance to chat a little. I spoke with Sharon Ladin who told me about this new website that was just recently launched Speak Now for Kids, which is advocating for children's healthcare reform and is looking for stories from all across the nation about uninsured and underinsured children. (if you have a story to share, please do!).

Once the celebrities arrived, we all took our seats in a big circle of chairs (surrounded by media, EEK!) and started the discussion. I was the first speaker! Two other mothers were present to share their stories, which dealt primarily with being underinsured, and several of the doctors from the clinic shared their own experiences with patients in varying situations. I think it went very well! From there, we went downstairs and a few of the celebrities read stories to the children in the clinic, after which we all hopped on a bus and drove to the Capitol. While on the bus, I sat next to Regina King and chatted a little while scarfing down some pasta and a delicious brownie (with nuts! it felt so rebellious!) and by that time we had arrived.

It had turned into a beautiful and was even a little warm on the long walk up to the building! I'm not used to running around in heels and my feet are paying for it today! On the way up, I had a chance to talk with Keri Russell and Jessica Alba. Everyone was very friendly and personable. It was a wonderful group of women! At varying times of the day I also had the pleasure of talking with Jurnee Smollett, Ali Wentworth, Malaak Compton-Rock, Michelle Fenty, Katie McGrath (JJ Abrams' wife, who was incredibly kind and passionate about children's health reform), as well as many people from the Children's Defense Fund, including Marian Edelman Wright, and women from related organizations. It was quite a day, that's for sure.

Once we arrived in the room, which was gorgeous, we were joined by four congresswomen from varying states and once again I was able to share our story. It was warmly received, as it usually is and I hope these women will be able to use it as a reference when explaining the crack in the system to those who cannot see the cracks for themselves. There are millions of children falling straight through the holes in our current system, just like mine did. We have say enough is enough and fix things and fix them the right way this time.

After that meeting, Susan Gates from the CDF walked me back to the office so I could catch my car back to the Baltimore airport. My driver totally hit on me, which is one of those sentences I never thought I'd write, probably because I don't have many drivers and also because I've been married for (a month shy of) 9 years and don't get hit on regularly. He was laying it on thick though, it was pretty entertaining, and he got me to the airport on time, too! The security gate was pretty backed up and I made it to my gate just in time for boarding. Once I got to the airport here in town, I still had another hour of driving ahead of me (this time I was driving myself and no one was complimenting me, what a pity), but Josh let the kids stay up to see me. KayTar was standing at the garage door and shouted "HI MOM!" and squeezed me to death when I walked in. BubTar was like, "What'd ya get me?!" And just like that life went right back to normal.

It was such a whirlwind trip, I was there for less than 24 hours, but we really managed to pack it in. I met so many wonderful people and heard so many different stories, it was a little overwhelming. It will probably take a few days to really process it all, but I'm so glad I had the opportunity to go and share our story once again in a forum that will allow our voices to be heard far and wide. Sometimes I really wonder how I ended up in the middle of all of this, but I think in the end it will pay off, not just for my children, but for all of the children of this great nation.

Today KayTar's story was featured in Marian Wright Edelman's Child Watch Column. You can follow that link to read all about it. If you are new to my blog and don't know about our insurance struggles, it is an excellent summary.


PS: Can you believe I don't have a SINGLE photo? It was raining when I left the hotel so I kept my camera in the suitcase so it wouldn't be damaged. I should have photos by next week, though, and I'll be sure to share them.

PPS: I didn't proofread this. Don't judge me. ;)

PPPS: I almost forgot, I made a 99 on that exam I has to take on the same afternoon that I flew to Baltimore!

If KayTar was a blogger...

Yesterday KayTar had a neurologist appointment and while we were at the hospital, we also had her labs run (a new RAST level for her nut allergy). At check-in, she asked me, "What are we doing here?" And I said, "I don't really want to tell you yet. I'll tell you in a little while, though." To which she replied, "Ooooh! Is it a SURPRISE! I love SURPRISES!" which made it clear that I would have to tell her, because a needle stick is a rather unpleasant surprise and I don't want to ruin the reputation of surprises altogether. "Well, KayTar...you have to get a little poke, but THEN YOU CAN HAVE A TREAT!" Alas, the cat was out of the bag and the laboratory waiting area was packed. We would have a long wait with a child who knew that she was about to get the needle.

In an effort to keep her mind off of the looming POKE, I pulled out her notepad and wrote a sentence in it, "KayTar is 4 years old and she likes flowers and butterflies." She loved reading about herself in her book and read the sentence several times. Then she pondered it for a minute and said, "You forgot something. Write this, 'She wears diapers.'" So I wrote it.

There was a very small baby sharing the bench seat with us and he was wearing a baby t-shirt with a blue, smiling whale on it. KayTar admired it and then said, "Write this in my book, 'KayTar likes whales.' Wait! Say THIS, 'KayTar likes HAPPY whales. And mermaids.' No, wait! 'KayTar likes happy whales and ARIEL.' Yeah, write that."

Then she said, "Oh! Start a new story! Say this, 'Dr. Neuro lost his clacker. His dog ate it or a kid broke it.' That's a GREAT story." (KayTar was looking forward to playing with his clacker, those plastic clapping hands that clack together, but sadly he no longer had a clacker. He first told her that his dog ate it, then he said maybe another kid broke it.)

The next time she got worked up about the threat of the needle, I suggested we write in the book some more, "What else can you think of that we should write?" And she said, while quietly sobbing, "You should write, 'Poke.'" I asked, "Anything about the poke? Should I write, 'KayTar doesn't like pokes'?" She said, "No, just write 'Poke.' and make it BIG." And that is how her story ended.

The author peers out from behind her laptop.

PS: It is NOT mitochondrial disease. Although she has more mitochondria than your average bear four year old, the rest of her tests checked out okay. The neurologist said he doesn't really know what else we can test for, so it looks like we've come to the end of another road without any answers.

To Do

I have a file open on my computer with a lovely little list on it, it looks something like this:

Saturday:
Haircut
Study chapters 18-20
Work on index cards for Pathology final

Sunday:
Study chapters 21-23
Work on assignment
Complete index cards for final
Shop for new shoes

Monday:
KayTar's neurology appointment
Assignment due
Study cards for final
Shop for new pants

Tuesday:
STUDY FOR PATHOLOGY EXAM
PREP SPEECH
Pack for DC
Pack for the kids
Write instruction sheets for my mom and Josh

Wednesday:
Take pathology exam
Fly to DC

Thursday:
Speaking engagement in DC
Fly home

Friday:
Study for pathology final
Review math concepts

Saturday:
Study for final
Review math concepts

Sunday:
Study for final
Review math concepts

Monday:
BubTar's well-check
Pathology final

Tuesday:
Turn in financial aid paperwork
Take math placement exam

Wednesday:
Register for summer/fall courses

Thursday:
Hospital volunteer orientation

The list had to be written because every time I would think of exam prep and speech prep my brain would start making this high pitched buzzing noise that made it impossible to concentrate. Lists are the cure for that high pitched buzzing sound (I think the Island on LOST finally got its hands on a cosmic notepad and was able to write down the infinite storylines it was attempting to follow and TA DA! No more buzzing!) and once it was all written down, it was instantly manageable again. Of course, there are a million little things not on the list, things that keep the house running and the children cared for that are more akin to breathing than they are Things to be Done.

This weekend I spent roughly eight hours each day reviewing pathology, which was interspersed between the oh-so-frequent cries of, "MooooooOOOOOoooooom!" and I thought, "Welcome to the next 8 years of your life, Kyla." Massive amounts of studying in the neediness trenches that is motherhood. Dad gets a lot of good press around here, as KayTar likes to say, "Daddy is my favorite! He's the prettiest!" but when push comes to shove, it is, of course, Mommy who is most needed. Daddy is better left for Plan B if Mommy denies a request, like if Mommy was to be unreasonable and tell a vomiting child that she CANNOT have some bacon RIGHT NOW, then Daddy is called in for an alternate verdict.

Earlier this week, Mommy went out for dinner and drinks with friends and within 5 minutes of being seated at the table, her cell phone rang and there was a hysterically sobbing four year old on the line, saying "I--(gasp)--WIWWY--(gag)--MISS--(gasp)--YOU!--(sobsobsob)" Mommy may not be the prettiest, but she is well-loved all the same. The phone call only made me feel only marginally guilty about going out for the evening, but exponentially more guilty about the decision to spend nearly every evening in the next year out of pocket. Guilt, the native language of motherhood. We'll all get through it fine, I know, but sometimes you can't sidestep the guilt entirely.

This list and the time frame it represents are a microcosm of my life, obviously; sick kids, lots of studying, a healthy helping of maternal guilt, doctor's appointments, exams, college, and various other time commitments. The good news is that by Sunday night, everything that should have been was neatly checked off and tucked away appropriately; children snug in their beds, notebooks and index cards filled with appropriate information and filed away for later review, assignments turned into professors, and I still had time to watch a bit of television with my husband. As I curled up under my covers last night, exhausted and content, I thought, "Yeah, we can do this."

This little sickie...

This little sickie has a fever,
This little sickie stayed home.
This little sickie did throw up,
This little sickie is dry.
And this little cried, "Germs! Germs! Germs!" all the way home.




This little sickie started running fever on Thursday morning. Early Thursday morning. Is-this-even-considered-morning Thursday morning. He's run a steady low grade since then. He missed two days of acheivement testing! We didn't take him in to the pediatrician because he didn't seem to be feeling too bad. Yesterday evening, his ears started bothering him. If he's still feverish on Monday, I'll take him in. He was supposed to go to my parent's house today to spend time with his cousins (and even go swimming!), but he'll be staying home instead. As you can imagine, he is less than thrilled. Poor little monkey.



This little sickie started vomiting out of the blue last night. It happened once, I cleaned her all up, put her in the sick seat and I stepped outside to talk to Josh about her meds (he was doing yard work). We were debating whether to give her Zofran, but didn't really come to a consensus. I came back inside and BubTar said, "Well, she just threw up EVERYWHERE." Zofran debate solved, instantly. And by the way, transdermal Zofran is a genius invention. If your kid can't keep anything down, are the liquid meds are going to make it through? Nope. Though, if you rub it on their skin, they can't yak it back up. Perfection! She continued to vomit last night, but with round-the-clock doses of Zofran (like say, setting an alarm for 3:30am so she doesn't miss a dose) it seems to be under control for now.

She's kept a small amount of water down this morning, though, we are playing a little Dry Diaper Roulette. As long as she holds down some clears this morning, it should work itself out. She also seems to be acquiring a bit of a germ phobia. I caught her swiping at her arms and shrieking "Get them off! Get them off!" the other day, which was a mildly disturbing sight, but it turns out she had touched something of her sick brother's and then thought his germs were attacking her. I said, "Well, let's just go wash your hands." But it didn't end the preoccupation. Every time stomach starts to hurt, she shouts, "Moooom! The germs won't leave me alone!" This morning she woke up and said, first thing, "The germs are still getting me! I need to wash with soap and water to get them out!" Poor kid.