Thursday, July 30, 2009

This week.

Monday: KayTar had camp in town at 9:30. Taking her to camp takes about 30 minutes each way, which means taking her and picking her up takes roughly 2 hours of my day and close to a quarter of a tank of gas, so I let BubTar hang out with my mom and decided to spend the day on that side of town. I perused the bookstore, finished a book I've been reading there, then went to see My Sister's Keeper (short review: i wish they hadn't changed things, but it was good anyway. by good, I mean that I basically cried or fought back tears for 2 entire hours and I'm not a movie-crier.) After the movie, I grabbed lunch at Whole Foods and then picked KayTar up. By the time I got home, it was about 3pm. I started some laundry and started my math homework (which I was waaaaaay behind on, thanks to KayTar's hospital stay causing me to miss a class when they went over THREE sections, ugh), long story short, the kids were constantly needing things so I got no homework done and that load of laundry is still in the dryer (today is THURSDAY). Josh got home, I went to math class for 4 hours and got even MORE behind in my homework. Fun.

Tuesday:
KayTar had camp again. BubTar wanted to go to my mom's house instead of driving out to town with me. I dropped KayTar off and came home with big plans for a math-a-palooza, but instead ended up spending 3 hours registering KayTar with Head Start due to her dual-enrollment status next year. I came back home, cracked my math book, graphed two solutions and it was time to pick KayTar up! Once I got home, I sat down with my book again, worked through 3-4 problems in between interruptions, then Josh was home. I was freaking out by this time, something to the tune of, "I am NEVER going to get caught up in this class, tonight we are going to cover multiple sections and instead of being 5 sections behind, I will be 8 sections behind. Maybe I should skip class and get caught up instead, then teach myself the new material. I have a test on Monday and we have family coming in town this weekend. When am I going to do the review? OMG, waaaaaaah!" You know, something like that. For the record, this is the only time throughout this crazy summer schedule I've been even a little overwhelmed, so I do think I get points for that in spite of this little road bump. Josh, being the level-headed dude that he is, told me to go to class so I don't miss anything and commit to doing two sections a day and make it happen. I scoffed and said, "Oh yeah, that will happen. The clock will magically give me more hours if decide it should." I still went to class, we reviewed and only covered 1 new section! A miracle! When I got home, I finished two and a half sections of my homework! It only took until midnight. There IS something to that zen mind over matter crap. BubTar spent the night with his cousins at my mom's house that night.

Wednesday: I drove KayTar to camp and came home with one thing on my agenda, MATH. I spent several hours working and finally, FINALLY, got completely caught up. By that time, I had to go pick KayTar up. My mom had offered to let her spend the night (along with BubTar again), so I packed up her stuff and after camp I dropped her off at my mom's. I stayed and chatted for about an hour and came home to get ready for the hospital (my third trip into the city for the day). I left a little early so I could stop by the pediatrician's office to have her fill out a form for KayTar's registration. After that short detour, I was on my way to the hospital for my shift. I got home at about 9pm, and we decided to take advantage of our empty house by going to see a movie, the Hangover. I had already seen it by myself, but Josh hadn't and I really wanted to see it again (short review: first viewing, hilarious. second viewing, exponentially more hilarious. I cried I was laughing so hard!). It was a nice little impromptu date.

Thursday:
Picked KayTar up from my mom's and took her to camp, then picked BubTar up. My aunt and cousin (who is 6) have been there, as well as my sister's kids, so he's been having a ball with all of the kids. It is so nice to have him home again, though! I'm caught up in math, but will start my review in a little while. The house is a bit disorganized and I've got to finish a few loads of laundry today. The kids' rooms need to be cleaned, ditto for the bathrooms. I have three hours before we need to pick up KayTar, then two more hours between picking her up and leaving for class.

Friday, we have family (my cousin and her son) coming to stay with us for the weekend. Saturday is my BIRTHDAY! We're having lunch, swimming, and cake with my family, then in the evening our best friends are coming over for takeout and Mexican train when the kids go to bed. Sunday is family day, plus the day before my math exam which calls for more reviewing. It has been a really full week!

PS: In case you are wondering why I haven't been by your blog, please review the post above. I'll probably be playing catch up sometime next week (which is blissfully empty (except for math, volunteering, and swim team practices, of course)). Shhhh, don't tell anyone I have free time or I'm sure it will disappear!

PPS: Math keeps invading my thought life. It is frightening. You know that California Liar song, with the line, "I'll pay any cost."? When I hear it, I think, C(x)=! When the scene in Hangover with the Belagio fountains was playing, I was thinking of the water's domain and range! Domain, all real numbers. Range, [0<240]. I'm dreaming of nth roots, imaginary numbers, asymptotes! Is there medication to treat this condition? It can't be healthy.

Tuesday, July 28, 2009

Punk.

BubTar is VERY shy at times, so shy that upon meeting a cousin last night (for the first time in his recollection) he started crying when prompted to say hello. He often uses me as a mouthpiece in these situations, "Mom, say hello for me." or "Mom, ask what his name is." though I'm trying to wean him from this, to prove that he doesn't need to be so worried to say hello or ask an innocuous question.

At the swim meet this weekend, I was seated next to a boy his age who was drawing in a notebook. BubTar asked me, "What is he drawing?" and I said, "I don't know. Why don't you ask him?" After denying his request for ME to do the asking roughly 100 times I said, "If you want to know, you will have to do the asking. I'm not doing it." He mustered up all of his courage, stepped around me and said, "Hey, what are you drawing?"

The kid looked up and snarled, "None of your business!"

BubTar's shoulders slumped and he shuffled his wilted self back to my other side and gave me a look that said, "See? SEE? This is why I don't speak to people."

Thanks random pool kid, you just set us back months!

Saturday, July 25, 2009

Of course, THIS is the milestone she is early on.





That little tooth came out all on its own tonight! It has been wiggling something fierce lately, but we've told her to leave it alone. She's so YOUNG, she can't be losing teeth already! Tonight while brushing her teeth Josh said, "Uh oh, it's gone!" I made KayTar spit into my hand and there it was amongst the toothpaste bubbles. Her first baby tooth is out, just like that. Of course, I looked it up (because it seems so early!) and though 5 and 6 are the most common ages to lose baby teeth, as early as 4 or as late as 8 is still considered to be normal. I had no idea!

Now, if we could only get her potty trained, eh?

****

This is what the Tooth Fairy left her, along with a dollar!

(click to enlarge)

Thursday, July 23, 2009

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.

Tuesday, July 21, 2009

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.

Friday, July 17, 2009

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.

Tuesday, July 14, 2009

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!

Monday, July 13, 2009

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!

video

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.

Thursday, July 09, 2009

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.

Wednesday, July 08, 2009

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!

Friday, July 03, 2009

She can swim!

video

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!

Wednesday, July 01, 2009

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?