Rehearsals/Performances!

(I wrote this first part on the 23rd.)

Tonight at rehearsal, KayTar FINALLY sat still during "Consider Yourself". She has been wiggling and rolling and turning around to face the audience, but tonight she FINALLY sat still for the sitting part. I was so proud! Then everyone else in the young company left the stage on cue...except KayTar. She kept sitting there, like a well-behaved and slightly oblivious angel for the rest of the number. Then she looked around, realized everyone else was gone and DASHED across the stage (which was not the direction she was meant to exited). It was HILARIOUS. I wish I had been recording at that moment. It was priceless!

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Opening night orphans!

Since I've been absolutely terrible at updating the blog recently, we've finished the remainder of the rehearsals AND three shows since my last update! Rehearsals went mostly well, except for the night the kids had to stay for curtain call and all of the parents were totally unprepared to be there that late. Opening night was WONDERFUL! I expected to be proud of my kids and their little parts, but I did not expect to feel SO proud of those high school kids! It was amazing to see all their hard work come together and have a nearly perfect show opening night! The second night had a few technical difficulties, but the kids really covered well and if I hadn't seen the show so many times before, I probably wouldn't have noticed. They are really doing an amazing job up there.

After the show...

As for KayTar, all the go-go-going finally caught up to her. She threw up after we got home Friday night, so we took it super easy on Saturday until call time and she made it through the show (with the help of a last minute Walgreens stop by some of our friends who came to see the show), but she spiked a fever that night and had to miss Sunday's matinee. She was absent from school yesterday and today and I'm still not 100% sure if she will be back tomorrow. Her cough is sounding yuckier and I had to break out the nebulizer today...and the last time I checked her temp is was trending upward, but not a fever yet. We'll see. I hope she will be well enough for school tomorrow, so she has a day to get her legs under her before Thursday, which is a school day AND a performance night. I'd hate for her to miss anymore shows...Sunday, she watched Oliver! on Netflix and practiced her songs while she was missing the play. She is enjoying it! BubTar is, too, I think he has found his niche. He wants to do choir and theater as his electives! It has been a wonderful experience for both of them!

On to the photos! I've taken hundreds, but here are a few of my very favorites from the musical...

Ketchup.

1. I bought a new-to-me car on the 14th! The minivan was super nice, but it was guzzling an immense amount of gas with my commute into downtown for classes. If our calculations were correct, we were spending more on gas than the car payment! So, we traded it in the 2007 Dodge Grand Caravan for a 2008 Scion xD and I LOVE it! It is so fun to drive and the difference in fuel efficiency is insane.

2. KayTar is magic. Seriously! We went to lunch the other day and there was a display with a PacMan ghost in it. She says, "Aww, I wish I could have that." as we were explaining that it was part of the display, so she couldn't...the hostess said, "Sure! You can have it!" Then, as we were leaving, there were flower pens at the register and she said, "I wish I had one of those!" The next thing I know, the cashier pulled out two brand news ones and let KayTar have her pick!

3. Inspired by The Muppets, BubTar has learned to whistle!

4. I got some kind of nasty virus last week and was in bed from Friday night through Sunday morning basically. It was TERRIBLE! KayTar was so sweet, though, and when she checked on me, she told me, "You look GOOD! You're sooo beautiful!" Such a darling.

5. My semester is off to a good start. All of my classes seem interesting/not too taxing, and I think I'm going to love Sociology!

6. Words cannot express how much I love this photo of BubTar. He is the handsomest!

7. KayTar's stomach is a little better, but not 100% yet, or even back to 90% or whatever it was that she was functioning at prior to this little bump in the road. However, since we increased her meds, the pains seem less intense and more fleeting...but still there, which I don't like. She puked Friday night, too, no real reason. C'est la vie!

Seven is a lucky number, yes? Let's stop here.

I'll be back tomorrow (or thereabouts) with some theater rehearsal updates! :)

Wordless Wednesday: It was a good night.

She was pain-free last night!

GI Plan, take two.

KayTar has had abdominal pain every night since Thursday! We haven't gotten a normal volume of formula in her in several days. Yesterday we were only able to give her two feeds and then we tried a third (slow) feed after she was asleep and the pain had subsided, but when I went to check on her, she had unplugged it because it was making her uncomfortable and we had been feeding the carpet for who knows how long (long enough for there to be a visible puddle of formula if I pressed on the carpet!). Five nights of pain is MORE than enough, so I did some research and we are going to change some things in hopes of making this better for her.

I found this article last night, which has a LOT of good information in it about gastroparesis. It is a tough subject to get quality information on and many physicians are not familiar with it. There is also this article by the same people which is newer and has more specific information on the nutritional needs/deficiencies and how to treat them, but since KayTar's nutritional status is still good, the first article covered the specific information I was looking for more succinctly. The main tips they outline in the articles are:

1. Smaller, more frequent meals, which facilitates improved gastric emptying.
2. Use more liquid calories (solids in the morning, transitioning to liquids later in the day).
3. Glucose control (if hyperglycemia is a contributing factor, it isn't for KayTar).
4. Avoid medications that slow gastric emptying (the only one KayTar takes is Benadryl).
5. Limit fats (but only if you have tried the previous 4 steps without success)
6. Limit/avoid fiber which can form bezoars or ferment in the slow moving gut, making things worse.
7. Treat bacterial overgrowth, if suspect.
8. Monitor and replace iron, B12, vitamin D, and calcium.

We decided to start by reducing her feeds from 8 ounces to 6 ounces today. And we let her have solids during the school day, but have transitioned to liquids/purees since she has been home (and powdered parmesan cheese...not sure what that counts as!). We will give her system a couple of days to adjust to this, but if this doesn't help sufficiently, then we will further reduce the feeds to 4 ounces as at time. It is kind of a pain to maintain that sort of schedule, but figurative pain for us is better than literal pain for her, so we will do whatever she needs us to do to help her feel better. If none of that helps, we will cut out solids for a couple of days to see if that helps, and then slowly add things back in as she tolerates it. I would hate to have to go that far, because she does get enjoyment from eating the few foods she will eat and it goes against everything in me to tell her that she can't eat. Additionally, I just spoke with the GI nurse and she said that the doctor wants us to increase KayTar's Augmentin dose from 5ml of the 200mg strength (QID) to 6ml (still QID) for 2 days and if it doesn't cause diarrhea or any other negative symptoms, she wants us to increase it to 7ml after that period. (On a side note, the turnaround time at the satellite clinic is AWESOME, less than 12 hours!) She is also being referred to a motility specialist.

I'm hoping that one or two of these small changes will be enough to relieve her pain. I just hate that she is hurting every night and I can't fix it for her. I'm so thankful that otherwise she is doing well; she is able to go to school, she is healthy, and the pain is mostly limited to the evenings before bed...it could be worse in a multitude of ways. Hopefully we will get this under control for her soon!

Back here again...

KayTar is having motility issues again. :(

Last Wednesday and Thursday, she as nauseated at lunchtime. I thought it was probably just from getting back into the school routine, though. Then on Monday morning, as I was leaving the kids' school after helping out in the library for a bit, I was surprised to find KayTar in the clinic! She seemed okay, but was there with tummy pain complaints. She laid down with the warm tummy bunny and chatted with the nurse and me, and bounced off to class not long after feeling better.

That night, I heard her calling me over the monitor and went to check on her. She said, "My meds are leaking on me." (meaning her g-button was open and leaking a little) I felt her shirt and it was soaked! But her button was closed, so it hadn't leaked. I turned her lamp on and was surprised to find her covered in Pediasure! She was insistent that she didn't throw up, so I checked with Josh to be sure everything was plugged in properly when he unhooked her from her feed and turned to pump off, thinking maybe we had fed the bed, but he said everything was plugged in and she was dry when he turned her pump off. The Pediasure was partially processed upon closer inspection, so she clearly vomited, but she didn't wake up or even know it had happened! That makes me super nervous, because if you don't wake up when vomiting, you don't protect your airway! She used to do this, but we usually heard it when it happened (coughing or some signal it had happened) and we had hoped she had outgrown it. Boo.

She had tummy pain at bedtime on Thursday night and again Friday night. Shortly after saying her tummy hurt, she vomited. She threw up undigested food that she had eaten roughly 10.5 HOURS before vomiting. Almost half a day earlier. It was still recognizable; chewed and swallowed, but that was all!

I'm not super thrilled to be seeing the return of dysmotility symptoms so soon. We started her on Augmentin on October 18th and started seeing improvement around the 24th. Things got progressively better through November and by early December she was *almost* back to baseline, the pain had stopped and she was back to normal feed volumes (but not normal rates). We never quite got there, but we were close enough to be pleased with the progress. But here we are mid-January and those old symptoms are back. At her GI appointment, the doctor said that we can go up quite a bit on the Augmentin, which is good, but if it only takes a couple of months for her body to adjust to the medication and subsequently need a higher dose...this probably will not be a long term solution, especially if this is a progressive problem. Of course, without the benefit of a diagnosis, nobody can really tell us if it is disease progression or what to expect down the line. So, we'll just continue to take it a day at a time and try to make the best decisions we can for her, with the information we do have.

For now, I've slowed her feed rate back down, but not had to reduce the volume. I'm also making her take a break from meat, hoping that the effort her gut would need to process that might be better used to process her formula more efficiently. If she continues to struggle this week, I'll put a call into the GI about increasing her Augmentin dose, too.

Wordless Wednesday: Rehearsal #2

Friday/Saturday

On Friday, I had lunch with KayTar at school (and sat with BubTar for a few minutes, too, but he is too cool for me to hang out with him for the entire lunch period). Shortly after lunch, it was time for me to take KayTar to OT, so I swung by her classroom to get her. Before leaving, I asked if she needed to potty, which she did, so I stood outside of the bathroom while she went. It was taking a while, though, I poked my head in to see what the hold up was. There were 2 open stalls and she was just standing there, so I looked at her quizzically and said "What's up?" She whispered, "In a public bathroom, the first stall is always the cleanest. I read that. So I'm just gonna wait." It totally cracked me up! She is SIX! I'd say, "Where does she get this stuff?" but the answer is BOOKS evidently. ;)

When we got to OT, there was a grandma and baby in the waiting area and I saw KayTar's eyes lock on that baby, so I tried to redirect her, because once she locks on, it is pretty impossible to intervene. I said, "KayTar, leave the baby alone...why don't you come play with me?" But the grandma said, "Oh, she is fine! The baby loves to be played with." Once someone says that, I have no more cards to play. There is no way for me to explain that the person she is talking incessantly to kind of needs a break, because they JUST SAID, that it is fine for her to talk to them/play with them/whatever. If I think otherwise, clearly I am the misinformed one. ;) I don't mind if KayTar makes new friends when we are out and about, it clearly pleases her so much to do so, but I think sometimes people don't quite know what they've gotten themselves into. The girl can TALK. I find it adorable and hilarious, but strangers are not always prepared for the full weight of KayTar's attention and conversational skills. Anyway, so after the baby was called back, I thought KayTar would lose interest and come sit with me, but she didn't. The grandma said, "Oh, she is fine! I never have little girls to talk to!" So she and KayTar chatted about ALL kinds of things. From KayTar's deceased great-grandparents to television before somehow landing on the fact that the grandma was unmarried. KayTar then says, "Oh! You should find a husband!" The grandma said, "Well, it is hard to find a nice, good-looking, single man. There are none at my church." KayTar looked around the waiting area and spotted a young guy (probably a pharma rep) and loudly said, "There is one RIGHT THERE!" Oh my gosh, it was SO funny. She was on a roll Friday and there were another dozen or so little things that had me chuckling all day long. That kid is made of joy. 

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We had a great day on Saturday! Josh, KayTar, and I went to see the Muppets (the second viewing for K and I) while BubTar went to his cousin's basketball game with my mom. After that, KayTar and I went ice skating with a group of lovely folks at the park downtown. It was me and KayTar, R (my sister-in-law/best friend), J and L (Josh and I's best friends from high school and junior high, respectively), Nurse C (KayTar's school nurse, we seriously love her), M (one of KayTar's nurses from ER who has become a friend) and her husband D. Oh, and KayTar's school nurse has known M since M was a little girl herself! Interesting group, right? We invited a few other folks, too, but it was a big football night in town and most of them were busy watching that. It was a very fun night. KayTar especially loved it, because she got to pick whoever she wanted to skate with and she REALLY loves all of these wonderful people. I'm always so thankful for the people we've gotten to know through KayTar's circumstances, because we've had the blessing of getting to know some really amazing people on a personal level, that we wouldn't have encountered otherwise. Sometimes I joke that KayTar collects grown-ups, but it is kind of true. Most of her favorite people ARE adults and they take quite a shine to her, too. I'm not only thankful for the impact they have on KayTar's life, but on mine as well! Teachers, therapists, doctors,  and nurses have become friends over the years and some are more like family now. We are so lucky to be surrounded by such great people and I honestly can't imagine life without them!

Me, KayTar, Nurse C, and R.

Rehearsal #1.

Last night was the first rehearsal for the high school musical the kids are going to be in. Oh my gosh, it was a hoot. Sometimes (like last night) I seriously wonder how we ended up with a kid like KayTar, not in the medical sense which is also a mystery, but her personality, which may be an even bigger mystery! She is an extrovert that cannot be contained...though we try our best to at times. None of the rest of us are like that, we are a pretty reserved bunch! With the right audience of people we know and are comfortable with, we can all be cut-ups, but with KayTar THE WORLD is her audience. She is the sun, she has no dimmer switch. We are going to have to recruit a couple of high school student clouds to rein her in a little!

We talked A LOT before practice about appropriate behavior, such as, don't talk when you should be listening, don't raise your hand for silly questions or statements, be still and quiet when you aren't supposed to be practicing, ect. Yeaaah, it didn't stick. Within the first two minutes, she had raised her hand with a silly question. She talked non-stop to the high schoolers around her (who found her quite amusing). She wiggled and posed and danced on stage when they weren't actively practicing. But when it was time to actually do the singing and dancing, she was focused...so I think she'll do great in the actual play, but I think rehearsals will be a combination of "Oh my gosh, what will she do next?" anxiety and "Oh my gosh, she is hilarious." laughter. That is pretty much life with KayTar.

You guys remember that at the audition, she told the director that she should probably be on the floor near the middle so she didn't fall off stage (centerstage) and that she would probably need a spotlight so she doesn't trip, right? So KayTar's row is supposed to go and stand on risers, but KayTar pipes up and says, "I'm not comfortable with that!" to the director, so he says he doesn't want her to feel uncomfortable so she can stand next to them on the floor...which happens to be in a pool of light from the spotlight. Then she said, VERY loudly, "Yessss! I'm in a SPOTLIGHT!" There was laughter from all corners of the auditorium.

Later on, the director was giving instructions and said something to the effect of "I don't want you guys to hurt yourselves..." And KayTar pipes up, "Yeah, you wouldn't want us to get hurt like THIS!" and she proceeds to playact hitting herself in the head, falling over, and landing in a full sprawl on stage. There was a LOT of laughter and even light applause. I leaned over to Josh and said, "Uh oh, they are feeding the beast...she's never going to stop now!" LOL! Then the director says, "Hey, where is KayTar's brother?" So my poor shy BubTar holds up his hand in the Spock sign and says, "Greetings." which got a few chuckles and totally embarrassed him, then KayTar pipes up, "We call him BUBBA!" which is his babyhood/childhood nickname that he now finds to be QUITE embarrassing in public. His cheeks flared red and I saw him make a big fake yawn, which is what he does when he is trying to keep his eyes from watering. Poor guy. And that story illustrates the main difference between my two children. KayTar will do ANYTHING for a laugh and eats up attention with a spoon, and BubTar nearly dies of embarrassment when people notice him at all.

There were plenty of other times we heard her talking and saw people laughing, but she wasn't loud enough for us to hear what was happening. When the director was telling them about how hungry they were, I was sure she was going to say something like, "I'm never hungry!" or when he was telling them about the gruel, I was sure she was going to say, "Well, I don't HAVE to eat, because I get food in my tubey." But she didn't, thankfully. I'm not embarrassed in the least by her tube, but theatre rehearsal is not really the time to get into that. I was also sure she was going to be all atwitter about holding hands with a high school boy (he helps her off the stage), but nope. She is an unpredictable over-sharer (we like to say she was born without a social filter), so I pretty much stayed on the edge of my seat the whole time...but as far as I know, the conversation stayed mostly in the appropriate zone.  After they were done practicing, Josh went and thanked the high school student who stands next to KayTar for helping her out and told him, "If she ever needs to be quiet, don't be shy about telling her!"

After practice, we went through a list of things KayTar needed to work on...being quiet when they weren't signing, sitting or standing still when it wasn't dancing time, not interrupting the director, ect. But I have a sneaking suspicion that she will forget all about it as soon as we walk in and she sees her "audience" next week. Hopefully, by the time the show rolls around, the newness and excitement will have worn off some and she won't be in performance mode every time she sets foot in the auditorium...except when she is SUPPOSED to be performing, of course. ;) In the meantime, though, it is sure going to make these rehearsals exciting and entertaining!

KayTar is on the far left, she is the one with the ponytail flip towards the end of the video. BubTar is towards the right, more between the middle and the right end. He's behind someone kneeling in a reddish shirt.

GI Check-Up.

Yesterday was the last day of break and we spent a good chunk of it on KayTar's GI appointment. It was a good appointment overall. KayTar's gut has been behaving itself pretty well lately (knock on wood), so we mainly reviewed what the problems had been and what the next steps are if the pain returns. KayTar was bouncy, bubbly, and chatty, and the doctor said, "Well, she certainly doesn't LOOK like a kid with severe dysmotility today!"

She wrote me a new prescription in case the pharmacy still can't get things worked out...don't know if I've written about it here, but the previous two refills have been a disaster. We haven't been able to get it refilled on time, even though there are only enough doses for 10 days in the bottles, somehow the insurance thinks we are getting more than that or something, and the breaks in medication has caused the rest of her GI tract to get out of whack. So she is back in Underjams. Ugh. I have to get a refill tomorrow, so hopefully it will go through without issue.

She is also transferring KayTar's care out to one of the satellite clinics because of the issues we have had getting our calls returned when KayTar is having problems. At the satellite clinic, the doctor only has one nurse, so the person we talk to should have some familiarity with the case and be able to get back to us...unlike in the hospital clinic where messages get passed on to a pool of different nurses. Hopefully that will help with the frustrations we have been having with the clinic. It is also a closer location for us, so that is an added bonus. She also said that if the pain returns, we can increase KayTar's Augmentin dose quite a bit still, so that is reassuring.

Today is a big day; first day back to school for the kids, a dental appointment for BubTar right after school, and drama rehearsal from 5-7 for both of them. I hope KayTar can hang in there for all of it!


- Posted using BlogPress from my iPad

Happy New Year!

So, it is 2012. Sounds weird, right? We rang in the new year with good friends and game night. KayTar wanted to stay up until midnight, but gave up at 9:33 instead. I was going to do a big sum up of 2011 for the first post of the year, but I just didn't feel like it...so I'm not. 2011 was a mixed bag for us. KayTar was healthier (as far as infections go) than she has been in previous years, but she had a rough medical year on all other fronts. Headaches, GI problems, respiratory weirdness, ect. I spent a lot of the year worrying about her. It definitely wasn't all bad, though, there was plenty of love and laughter and time spent with friends and family, so I think it was a good year overall, because that is the most important stuff. Josh and I celebrated 10 years of marriage, went to Vegas, had a beach vacation, KayTar and I had a little weekend getaway to a downtown hotel...among all the other more run of the mill fun things we did. There were the less fun things, too; the gas leak and being without gas for 16 days, Calculus, my credit card being cloned, medical tests that weren't very fun. We started seeing KayTar's new specialist in 2011 and our hope is that in 2012, someone will finally be able to successfully diagnose her! I don't do resolutions, but that is my #1 wish for this year...and it is probably about as likely as most people sticking to their resolutions. ;)

There will be a couple of changes for me in 2012. I changed majors at the end of the semester, from Biological and Physical Sciences to Psychology. BPS was dragging on forEVER because of scheduling problems. Every semester, I've tried to fit in some of the science classes with labs, and every semester the classes have been scheduled at times I can't take them. It wasn't a huge deal in previous semesters, because I had enough basic requirements left to fill my schedule, but I'm done with that now and still couldn't make the labs work. They seem to only schedule them during the kids' dismissal time or at the time Josh gets home from work...meaning I'd have to leave before he was home since campus is an hour away. It just isn't workable. Nontraditional undergrads with two kids and one income can't afford medically savvy nannies to cover gaps like these. Sooo, I looked at my transcripts and reevaluated things and discovered that I'd actually be closer to graduation if I switched, so I did it. Also, the classes are at normal times and many are offered online, too, which is an added bonus.

The other big thing is that I'm almost certain that I'm switching tracks from premed to pre-PA. It has been of those long torturous decision-making processes, so I'm going to spare you all of that agonizing hemming and hawing...I've pretty much had my fill of it already. The bottom line is that this year, we saw possible disease progression in KayTar and that has made me reevaluate my priorities. I love medicine, that hasn't changed...but if there is ANY chance our time with KayTar could be limited in any way, I cannot/will not sacrifice 7 years of time with her. PA programs are shorter in duration and I could still work in a field I love. My end goal is primary peds anyway. I don't think I will ever look back and wish I had spent less time with the kids and more time in school/training (even if KayTar does go on to have a happy, mostly healthy, full life, which is our fervent hope)...but I can definitely imagine wishing the opposite. I don't want to set myself up for big regrets. While I never think we should live our lives in fear of what might be, I also think God sometimes uses circumstances in our lives to nudge us in the right direction...and this year has been one of those nudges. So this next semester, I'm not taking any prereqs for either program, I'm just going to sit on this decision (even though I'm pretty sure about it) for the semester and maybe through the summer too, and then move forward with a certain direction in the fall...so I'm not straddling the fence and wasting time by completing two sets of prereqs. For now, I'm just going to keep working towards finishing undergrad and keep taking things one day at a time with KayTar.

KayTar celebrating at 9:30. I love how she says, "It's midnight!"