Poke!

I briefly mentioned that we would be testing KayTar blood sugar periodically, though, I didn't post the details as I didn't have them yet. I know you've all been on the edge of your seat with anticipation, so wait no more! I have the answers you seek. And if you don't seek? Well, I'm telling you anyway.

There exists a theory in which KayTar's episodes are tied to drops in her glucose level, the pediatrician and neurologist both think there might be something to this theory, especially since her last episode was accompanied by a significant drop in her blood sugar and it wasn't the only occassion this happened. Now we are going to track her glucose for a while to see what it is like when she is healthy and her body is functioning properly, when she is sick and her intake is down, and during/after episodes. The bad news is that we're going to keep an eye on it at least through her next episode. The good news is that we are not going to have to do it a set number of times EVERY SINGLE DAY. We need a decent sampling of different types; first thing in the morning, 30 minutes after eating, 2 hours after eating, and then some general checks, too, but I don't have to test her at all of those times every day, which is such a relief.

If I had written this post yesterday morning, it likely would have been full of angst due to the dread I was feeling about poking my wee darling, about how much she HATES finger sticks and named them the WORST thing about the hospital trip (even worse than the cath!). If I had written this post yesterday afternoon, I would have written about what a FIGHT she put up in the doctor's office when we did a test run, about how it took the doctor, the nurse, and myself to get a proper finger stick and reading. I would have written about how her face crumpled when the doctor told her that we would have to be doing this at home for a while, too. (I really appreciate the pediatrician's willingness to explain it all to her and be the bad guy, so KayTar doesn't think we're just torturing her of our own accord.) If I had written this post last night, I would have written that our first finger stick at home wasn't too bad, except for the part where she cried a little and said, so very accusingly, "Mom! You are being LIKE A DOCTOR!" which is likely the very worst insult she could think up.

Though, I am not writing this post at any of those times, so instead I can say that I am very proud of my girl this morning. She agreed to her finger stick, sat still, held her brother's hand, and didn't flinch or cry when I poked her finger. She stayed still while the blood drop formed and while we placed it on the strip. She did a fantastic job! I knew she would eventually adjust, as she has adjusted to everything, but I really didn't imagine she would adjust SO quickly. Yesterday morning it was the worst thing IN THE WORLD, today it is just one more barely noticeable inconvenience in her life. I don't know how she does it, honestly, but it still impresses me. The girl is a trooper. I am bribing her, for the record, mostly because it makes me feel better. She gets a quarter every time she gets a finger stick, which goes into a special bank, that will be used for a shopping trip once she's racked up enough coin. It is a win-win really, I get to feel a tiny bit better about poking my poor kid and she'll get to buy a shiny new toy with the money she has earned with her own blood, sweat, and tears...well, minus, the sweat and tears part, I suppose.

KayTar and her new bank.

Games We Played

When we left for the hospital on Thursday, I was under the impression that the time spent there would largely consist of a semi/unconscious KayTar and a worried/slightly bored me. I packed accordingly. For myself, I packed a novel, sweatshirt, thermos of coffee, deodorant (never go to the hospital without this and a toothbrush, which I forgot and Josh had to deliver to me later), and protein bar. For KayTar, I packed a towel (vomiting on the car ride), her blanket, her medicine bag, and a few diapers. However, we arrived at the hospital, KayTar's episode ended and I was left without entertainment reinforcements.

Child Life came by and left us with a couple of books, crayons, and color sheets...the same ones I deliver to families every Wednesday night. These things are only entertaining for so long. We colored for a bit, I read Duck for President half a dozen times, and we found every item in the Look and Find book. After that, I was on my own, so I invented a few little games.

1. Guess That Color.

Materials: Cup, Variety of Crayons
Instructions: Place a random color underneath the cup and have child guess which crayon it is. Give clues, such as, "It starts with the letter O." or "It is the color of our cat." or "It has the same name as a fruit." Try providing different clues each time a color is repeated.

2. Who Am I?

Materials: None, though KayTar liked using my hospital name badge as it looked similar to a notepad
Instructions: Think of a person you both know, then allow the Guesser to ask questions to ascertain your identity, such as "Do you live in our home?" "What is your favorite color?" "Are you a boy or girl?" "What letter does your name start with?"
Variations: Try it with well-known cartoon characters or animals.

3. Gone Fishin'.

Materials: None, though KayTar liked pretending my lanyard was a fishing line and miming the big catch
Instructions: Child pretends to catch a fish. These are not just regular old fish, they have special traits only the fisherman can see, such as a distinct color. Clues are provided, when correct guess is made, fish is placed in a bucket and a new round begins.
Variations: Try having the fish exhibit characteristics of animals, too.

If you have an older child, you can kill tons of time playing Paper, Rock, Scissors and Thumb Wrestling. KayTar also enjoyed playing spelling games aloud, but I know a lot of kids her age aren't spelling quite yet. We also passed time by singing little songs, like the color songs she learned in PPCD last year, or by practicing our counting, first by ones, then by tens. We effectively passed 7 or 8 hours with these little games, without any boredom. There were brief respites on account of medical procedures or tears (poor thing broke down a couple of times because she missed her brother so much), but it made time pass much quicker for both of us.



PS: The curse of the Pig Pajamas continues...she didn't wear them to the hospital this time, but she was wearing them when the episode started. I had to change them because they were quite yucky from all that vomiting, as I changed them I thought, "Pig pajamas! Of course!" I should have known they would be keeping us overnight. I've really got to stop buying those adorable pig pajamas.

Adventures of KayTar: Episode #38

Thursday morning, shortly after waking, KayTar said, "I feel sick." which wasn't all that surprising as she is still sick, but then she said, "Take me back to bed." which was surprising because she never requests that, and as I carried her to bed she said the dreaded words, "Because I feel spinny. My eyes are sick." It was 9:15 on a Thursday morning, so I decided this was the time to take her in. After calling to notify our pediatrician, I took a bit of time to get ready and pack a few things for the hospital, assuming we would be there for the day. I scooped up KayTar and we dropped BubTar off with my parents and headed to the hospital. I called the neurologist on the way so he could send orders to the ER for us.

We arrived, I dropped the car at valet, and started to register KayTar. Then she woke up and said, "I think I feel better." No joke. The SINGLE time we expected and wanted the episode to run its looooong drawn out course, it shortchanges us. I'd like to see odds on this one. Regardless, we were there and the orders were there, so the nurses got us to a room lickety-split (after a bit of "Oh, did you miss us since last night?" teasing, since I volunteer there on Wednesday nights). In triage, I mentioned that she has been sick and her intake was down, so they might as well give her fluids while we were there. She had an IV placed, some labs drawn, and it was time to get her EEG done. They moved quickly for us and we were well taken care of. After the EEG, we found out that once again she was hypoglycemic and needed dextrose. They kept us for a while before informing me that they wanted to observe her overnight due to the poor glucose level. At some point in all that, they cathed her to get some urine, which was AWFUL. She's never had to go through that before and it would be fine with me if she never has to do that again. It was extremely unpleasant, worse than the IV and finger sticks put together. Overall, though, the hospital stay wasn't too terrible. I knew most of the nurses and the doctor who followed us in observation today from my time volunteering. KayTar and I played lots of games and watched The Little Mermaid and Beauty and the Beast. She, of course, charmed everyone we met. Even when she feels badly, her little personality is still firmly intact.

It was a long day and night, but she was released this afternoon after a successful tube feed and nice looking labs. The neurologist called me this afternoon to let me know that the EEG was normal, but he expressed interest in that fact her glucose was once again low in conjunction with an episode. He is recommending periodic glucose testing, during healthy, sick, and episodic times to follow it a bit further. He also said she might need a referral to endocrinology. Pretty soon they are going to run out of new specialties to refer her to! I also spoke with him about the light sensitivity and he gave me the contact information for a local ophthalmologist he has worked with who is having some success treated Gulf War veterans that experience similar light sensitivity (though for different reasons, clearly) with therapies and special lenses, so we'll definitely follow up on that.

Otherwise, KayTar is still under the weather, her lungs were a bit wheezy when she was checked out today, so we are continuing her Albuterol/Benadryl schedule and we may need to follow up with the pediatrician on Monday if it is still hanging on, though I'll let the pediatrician make that call. I don't know if we will take her in for the next episode or not, that remains to be decided, too. Whatever the case, for tonight we are definitely glad to be home.

One thing or another.

Remind me never to go on and on about normalcy without first knocking on wood.

Seriously.

Instead of having an episode yesterday, which we awaited with fearfully bated breath, KayTar came down with major respiratory congestion. Classic misdirection. We were prepared for an episode, we knew there would either be a trip to the emergency department or the administration of her new medication, and we watched and waited all day yesterday. Never happened, of course. Honestly, that is certainly fine by me, but while we were focused on that possibility, the illness snuck in just under the radar. She coughed a lot yesterday, so I started giving her Albuterol at regular intervals and left it at that, since we were still under a antihistamine ban to prepare for her allergist appointment tomorrow. I left for class and she seemed fine, outside of the mildly irritated airways. By the time I return from class, she was a snot-covered ball of mucus. She was snarfling and hacking, a sticky snot trail across her cheek from the incessant wiping. She had that glassy look to her eyes and she was TALKING SUPER LOUD, which seems to happen whenever she is very congested.

Josh volunteered to sleep on the couch, for the second night in a row (she had been vomiting the previous night), so KayTar could have his spot in our bed. We haven't slept in the same room since last Thursday and that doesn't look like it will be changing for a few more days, at least. We really did NOT want to give her antihistamines, though it was clearly indicated, so instead I propped her up in my bed with pillows and rubbed her down with Vicks, and gave her Albuterol. I put on a show for her to watch and when it was over, I laid with her while she fell asleep. It seemed like success! She was asleep, without vomiting no less, and I didn't have to give her any Benadryl! Josh went to sleep on the sofa and I stayed up, finishing my novel in the bedroom by closet light. Thirty minutes later, KayTar was crying, and struggling a bit to breathe, and coughing, and gagging. I called for Josh to bring The Pot, you know the one, the kids-can't-make-it-to-the-bathroom-before-getting-sick Pot. We discussed what to do, antihistamines or not? After a lot of back and forth, I decided to hold off again. I elevated her head a bit more, I talked with her, I cuddled with her, I gave her some more Vicks rub. I hoped that maybe we would make it through. Then she started vomiting up mucus and still she couldn't calm down or catch her breath. I caved. There was no way she was going to get through the night without the medicine.

After giving her the medicine, I told her that I REALLY needed her not to throw up for a while (like that is going to make any difference, right?) and I told her we could watch anything on TV that she wanted. She picked iCarly, so I cued it up from Video On Demand (so many sick nights I am thankful for VOD) and I physically held her limp, exhausted body in a upright position in bed for a couple of shows. After the medicine had had some time to work, I laid her back down and waited a bit before allowing myself to get geared up for sleep. It was 2am by now and I didn't want to relax prematurely, that always makes everything seem so much worse. It seemed like she had really settled down, so I turned off the lights and TV and settled in. I should have just made some coffee and resolved to stay up all night. Ten minutes later she was moaning and crying from her sleep. I would quiet her, start to doze, and she would start again. ALL NIGHT LONG. I finally paid attention to what was happening and it seemed like she her breathing would stall a little, then she would jerk to an almost-awake state where she cried and moaned, because she didn't know what was happening. It was a loooooooooong night. I can't remember the last time we had a night like this. Congestion, sure. Vomiting, sure. A couple hours of being wide awake in the night, sure. But this all night wakefulness? I can't remember the last time. It was exhausting. Every time I would start to doze off, the crying or moaning would start. I'd try to wake her a bit so her breathing would normalize and she could relax again, but it never failed, as soon as we dozed off, she was fussing again. Long night.

This morning I called to reschedule her allergist appointment and the first available is in January 2010. Next YEAR. There is a chance our pediatrician can get it bumped up a bit, but I could not believe the next available was so far away. We've really tried to hold off on the antihistamines, but it just wasn't possible last night. I guess the only comfort is knowing that with the fever she spiked early this morning, chances are we'd be canceling the appointment regardless, due to her fever. Anyway, I guess this is the part where I should heartily knock on wood, because that episode is still looming and with as tired as I am today, I'd definitely prefer for that to stay off the calendar. Here's hoping!

Summer fun!

We had a wonderful mini-vacation! No episodes, no illnesses, no nothing...just had a nice relaxing weekend. Our best friends (my best friend from junior high married Josh's best friend from high school, making them the perfect couple for this kind of thing) shared a cabin with us, which always makes for a good time. We spent a good deal of time at the water park, but I also found time to read half a novel. We stayed up late, talking, playing Mexican Train (dominoes), and having drinks after the kids were tucked into bed. The kids were just happy to be somewhere new and the water slides were a bonus. The weather was miserably hot midday, but the mornings and evenings were perfect for sitting on the screened in porch to have breakfast and dinner. It was a great little trip all around.

As for normalcy, well, if you think your kid might be approaching normal, spending a weekend surrounded by neuro-typical kids at a water park might weaken those illusions just a tad. KayTar was consistently outpaced and outmaneuvered by kids up to three years her junior, little 18 month old toddlers jaunting around far quicker and steadier on their feet than she. On our (oh so sloooow) way up the stairs to the water slides we were elbowed and pushed and passed by 3.7 million children. Of course, she doesn't notice, so it wasn't a big deal. The park was also VERY noisy, which means KayTar couldn't hear us at all. With her one functioning ear, she can't filter out ambient noise and hone in on the important sounds, she also can't discern which direction sounds are coming from. We'd have to run over and touch her to get her attention and then speak directly into her ear if she went too far or if we had to tell her anything. There was also the little issue of light sensitivity. Even so, she's light years ahead of where we thought she would be by now and we manage within our constraints QUITE well. We are a well-oiled, if slightly off-kilter, machine. We all had an amazing time together!



The cabin had a cool little loft sleeping area. Josh and BubTar slept there and KayTar and I shared a bedroom.

The sun was too bright for KayTar, so we'll just photoshop her in later.

All ready to go!



This big picnic basket filled up with water and then dumped every 10 minutes or so.

BubTar LOVED it.

He's a big fan of being drenched in general.









KayTar loved the slides!

She did a pretty good job of keeping her shades on while we played.

There was a little petting zoo, which was more like a feeding zoo. The animals were behind a fence, so there wasn't much actual petting.

Someone was worn out by all of that fun!

It was great fun all around and we're already looking forward to our next vacation in a little less than a month. Until then it is back to grind, tonight my new math session starts, the next two Saturdays are filled with swim meets for BubTar, then we have family coming to stay with us. It has been a busy summer, but I think it is passing at just the right pace, plenty of time for both work and relaxation.

Disclosure

I have a little confession, I've started thinking of KayTar as a normal-ish kid. Yeah, yeah, I know the list of medical issues. I know that she has physical and processing differences. I know we've completely rearranged our life to facilitate our current level of normalcy. In spite of all of that, I do think of her as normal-ish most of the time. Most days, good days, she appears normal to the outside world, to the people who don't have access to her medical files or are not trained in spotting developmental differences, because of that, we've started to see her in that light, too.

When BubTar started swim team at the YMCA, we let KayTar decide if she wanted to go to the daycare room or watch BubTar swim. She chose the playroom, so we allowed it. We didn't give them any special instructions outside of DO NOT FEED THE KAYTAR, which is non-negotiable due to her propensity for anaphylaxis. We didn't mention her asthma, poor balance and muscle tone, neurological episodes, hearing loss...none of it. We are always on site, available at a moment's notice if anything goes wrong, so we decided to let her try her hand at normalcy for a change and allow her to function in an environment without special considerations. So far, so good, minus the time they fed her a snack. They have noticed she is quite clumsy (walking into things, falling) and my mom mentioned to them that she is deaf in one ear, but she's done a pretty good job holding her own with the neurotypical kids.

KayTar started swimming lessons this week and I decided to take the same position, let her start out as a run of the mill kid and disclose what I had to, when I had to. On the first day, she wasn't responding to their commands, so I had to disclose that she is deaf in one ear and if she doesn't respond they'll need to speak up or move to her right side. Today, they walked to the other side of the pool and I was going to stay in my seat and let her do her own thing with her class. I watched from across the pool and noticed she wasn't opening her eyes and she was fussing. My stomach dropped and I immediately worried she was having an episode. I booked it over to the other side of the pool where she was definitely having a difficult time and I ran through the questions, "Are your eyes sick? Are you spinny?" She said no, but still couldn't open her eyes. I helped her sit down and she put the towel over her head like a tent. Of course, the swim instructors were eying us at this point, so I said, "She has neurological problems and sometimes the sunlight makes her sick." I sat with her while the other kids had their turns and eventually it passed enough that she could take another turn, with her eyes squeezed shut. Once they got back to the regular side of the pool, a more shaded area, she seemed fine, but I was shaken.

These things happen to her, frequently. There are many days she can't tolerate the sun. She has episodes. Asthma attacks. We tube feed her. She falls over. She can't always keep up with kids her age. She might be able to pass for normal frequently, but she isn't REALLY normal...our life isn't REALLY normal, though most days we forget that it isn't. My stomach turned flip-flops the rest of her class, I could not wait to get her out of the sun. I was so afraid an episode was dancing around the edges and by letting her continue her lesson, I was giving it a chance to take over. At the same time I wanted her to complete her lesson, to enjoy herself, to be with the other kids. I did let her finish, while I wondered if we would be headed to the ER today and if my math final could be rescheduled and I kicked myself for not picking up her Imitrex prescription yet. She was okay after the lesson, but when we stepped back outside to walk to the car, she couldn't open her eyes or walk and I scooped her up and carried her, her still body in my arms, her head lying limply on my shoulder. My stomach dropped again. Is it? Isn't it? This was how the episode at the butterfly museum started. It wasn't an episode this time. Once she was out of the sun, she was fine again, but I am still anxious, my stomach in knots worrying over our lake vacation this weekend, worrying about the episode that is due Monday, worrying when if and when it will happen, worrying about the new medication and the trip to the emergency room. I know that this anxiety won't pass until we are safely on the other side of it all, and I am reminded once again that as close as we might seem to it on a good day, none of this is truly normal.

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! ;)