Ketchup.

I finished Trig last Thursday. I ended up getting a B in the course, boo. My first two tests were a little rough, because I didn't know what to expect from the professor's exam style and I had to figure out the most efficient way to study for them...but in a 5 week class, with tests every Monday and a final on that last Thursday, there isn't a lot of time to get your legs under you. So, I pulled it up to a high B. One more week and I'd have had my A, but I'll live.

On Friday, KayTar had PT as per the usual(she did really well!), and the boys were busy packing up to go camping for a few days. Josh begged us to come along, but I just wasn't into it. I'm no outdoor girl, plus it was a scout family event and I don't really know any of them yet, due to the fact I'm never at activities because of my school schedule. I wasn't quite ready to spend 3 days and nights in one big room with these people.

My friend, E, was coming to Galveston on Friday, so we made evening plans to get together. She, her husband and two boys, and Katie and I all went out for a yummy seafood dinner and then went to Rainforest Cafe, where we took the kids on the adventure ride and had the volcano dessert. The kids were SO hilarious and cute together. They haven't seen each other since they were about 3.5, so they didn't really remember each other, but they sure warmed up to each other quick! Some of the things they said were so hilarious. At one point, H coolly said this to KayTar, "So. You going to the Jungle Cafe later?" It was such a pick-up line moment. Later, KayTar complimented the sunglasses on his head, he replied, "Yeah. I wear them in the sun." The intonation was just HILARIOUS. Very mini-stud like. They were holding hands and KayTar was chasing him around trying to give him a smooch and at the end of the night she hugged AND kissed him. She asked E, "When I grow up, can I sleepover at your house? In H's room? You should get me a cot for that, so I can be so comfortable." Ha! They were fast friends!

(Like the way he has his arm around her and she's absentmindedly fiddling with his fingers? They're 5 going on 16, I swear.)



KayTar and I spent the night at my parents' house that night. She thought it was SUPER fun. She sleeps there on occasion, but I never do, so it was extra exciting for her. I got to sleep in in the morning, and then we went swimming first thing. After swimming, we headed home for a while to get ready to go see Despicable Me. It was hilarious!! I highly recommend it. We're taking the boys to see it this week sometime, because it is worth watching again...and I'm not big on kid movies. After the movie, we went to my parents' house again. My dad grilled some chicken thigh, stuffed with mozzarella and jalapenos, wrapped in bacon. YUM. We had corn on the cob and baked potatoes, too. We swam again and headed home for the night after that.

On Sunday, we drove up to the campgrounds to visit our boys! We had a fun day. Lunch, swimming in the river, dinner. It was great. My favorite part was the swimming, because I hate being outside unless I'm in water..it is ridiculously hot here during the summer. I hate it. I took a lot of photos while we were there, I'll post my favorites tomorrow.





Yesterday was KayTar's genetics appointment. He was so unprepared. I guess he read her early file and none of the recent material? He wanted to discuss her dystonia and paroxysmal torticollis...that was YEARS ago! I had to give him the rundown as he read through her labs and attending notes on the system. By the end, he agreed we should test for GSD 0 and he also wants to rule out growth hormone deficiencies. He said it is unlikely, because she is within the age-appropriate growth parameters, but he's seen at least one patient with these deficiencies that wasn't small for age. We'll have the labs run later this week, as well as a recheck of her AST/ALT due to the elevated AST on her last round, later this week. She's chosen a shopping trip to GameStop for her post-needle treat this time. Yes, we bribe her. Yes, we're okay with this. She's had so many tests, she deserves a little something extra for being such a sport about it. If a new Pillow Pet or a video game can ease her anxiety, so be it! BubTar gets rewards for all A's on report cards...it is the same principle. After all the labs are back, it looks like she will be doing an inpatient fast. Yikes, I'm sure that will be loads of fun. (No, it won't. Not. At. All.)

The boys got home around the same time as us and we just relaxed for the day and went swimming in the evening. We played Super Mario Bros Wii last night for the first time in over 5 weeks (we're trying to beat it), then I listened to KayTar read my some Junie B. before bed. It was the perfect long weekend!

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!