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.