Life with the 'Tars

I'd Do Anything

2012-02-13T19:33:00.000-06:00

Friday night, as KayTar was falling asleep, I brushed her hair off her forehead and started quietly singing "I'd Do Anything". When it got to the duet, she piped in, eyes still closed, "Would you climb a hill?" and we finished the verse together. Then she opened her eyes and said, "Mom? Seriously. I'm trying to fall asleep here." I ♥ that kid.

A little off-kilter.

2012-02-12T10:52:00.000-06:00

Wednesday was one of those busy kind of days; full day of classes for me, quick stop home for lunch, then off to get the kids...girl scouts for KayTar and musical theatre class for BubTar, at overlapping times, of course! KayTar was super fussy at scouts...she cried 3 times, which is very unlike her! We stayed long enough to complete one activity and then we left at the break to get BubTar to class and because I don't think she could have handled anymore. After we dropped BubTar at class, we came home (which wasn't the best plan, his class is an hour and it takes about 15-20 minutes each way depending on the lights) and KayTar did most of her homework. She was in an oddly cranky mood, just not her normal happy self for some reason. On the way back to get BubTar, she started to look pale and tired, so I suggested she close her eyes and rest. She dozed off a little, I think, but when we arrived she woke up. She said that she couldn't walk and I needed to carry her. She was very limp and let me tell you, it is no easy feat to carry a limp almost 7 year old! My stomach was up in my throat, too, because it was very reminiscent of the onset of her neuro episodes. She perked up a little after we got back to the car, though. It was just all very unsettling. As a side note, BubTar LOVED his class. Theatre is here to stay! We put KayTar to bed early to be safe, even though she seemed okay, and she woke up a couple of hours later, fussing about her eyes hurting. I don't know if the whole afternoon was just build up to a migraine or what, but she quieted down after some ibuprofen and seemed fine in the morning.

Thursday was a totally normal day, but when I picked KayTar up, she was crying. A friend had a Wish You Well letter (when the kids are out sick, their classmates fill a Wish You Well envelope with letters and stickers of well wishes for them to get when they get back) and KayTar thought it was one that she had lost after her absence. It wasn't, but she was sad because she remembered she had lost hers. Anyway, she cried so much that her nose got super snotty and I didn't have a tissue or napkin to give her, and she either forgot how to breathe using just her mouth or elected not to, because she stopped breathing and started turning colors! On top of that, I thought poor BubTar was going to have a heart attack in the backseat with her. We talked her through it and I had BubTar model panting with her mouth and she started breathing again. I know that the worst that would have happened was that she would have passed out and started breathing...but yikes! Where those self-preservation instincts when you need them?

Friday was mostly normal, but there was more uncharacteristic crying at OT, because as she was tracing and cutting out her handprints, they were turning out like "Voldemort fingers"! It was the worst thing to ever happen, evidently. The rest of the day was fine, the weather was nice and we played outside a bit before the boys left to go camping. In the evening right before we were going to leave to go get dinner, she started complaining of stomach pains, climbed into bed, requested her hot pack, and in less than 30 minutes she vomited up her entire last feed and a lot of bacon bits. It looked a little too much like chipped beef to me. Blech! Looks like it might be the return of her gastroparesis symptoms, unfortunately. We took it easy on the food and feeds yesterday and she didn't have any pain, but last night she told me that she was too full for any bedtime medicines or she might throw up. I hope that she hasn't entered back into that cycle of daily or near-daily stomach pain. The Augmentin seems like a stop gap at best and then I don't know what will come next...I'm a bit worried it will cause her quality of like to take a little hit (meds with unpleasant side effects, more time hooked up to feeds, ect), but hopefully not. My fingers will be crossed that she has a great week this week and the weirdness of this week was just a minor bump in the road!

Curtain Call.

2012-02-08T08:52:00.000-06:00

Well, the musical is over! The final show was last Saturday and I'm so glad KayTar was able to make it, despite surgery the previous day and a somewhat rocky morning/early afternoon on Saturday. Being a part of this musical, however SMALL the part may have been, was an amazing experience for both of the kids.

For KayTar, it was the first activity she has ever participated in like a "normal" kid. No accommodations. No on-site nurse. No complex medical plans. Just regular kid participation! Yes, it was harder for her than the other kids. Yes, she missed two out of 6 performances. But she DID IT! She performed just like all of the other kids and had a GREAT time doing it. One night after the show, the costume designer came up to us and said, "She is not shy AT ALL! You've sure got her in the right place for THAT!" So true! She fit right in with this crew. She made lots of friends in the young company during their hours backstage together, she made herself well-known among the high school kids, too. Often we would walk down the hall after a show and a high-schooler would say hello or goodbye to her by name. She ate that up, of course! She had the BIGGEST crush on Dodger and I could always find her in vocal warm-ups by spotting Dodger's top hat...I knew she wouldn't be far from him! After watching the movie version of Oliver!, she told me, "I like the Dodger in the play so much better. He's SO manly!" So before the next show, I told Dodger what she said and he laughed and said, "Oh my gosh, that is AWESOME." On the last night of the play, she was sitting one person away from him in warm-ups and she leaned over the girl between them (possibly his girlfriend?) and said, "Dodger. You are SO manly." It was hilarious. We made sure that he signed her poster and he even wrote her a little note...most of the big kids just signed their name, so she felt really special. Then he had her sign HIS poster, which she loved. After, as he was walking away, she shouted, "Thanks! I couldn't have done it without you!!" It was priceless! She also fawned over Nancy...all of the girls did, actually. She would walk by and they would all touch her or hug her or shout, "Nancy!!!" The stars of the ply might as well have been really Hollywood movie stars as far as the kids were concerned! During circle on the last night (everyone holds hands in a big circle, arms crossed right over left, and people take turns saying encouraging things or what the play has meant to them), KayTar got to hold hands with Nancy! She was in heaven. She also spoke that night and said something like, "I think we are doing a great job...and I think we can really do ANYTHING, with the power of helping." After the show, she got all of the stars' signatures, her friends' signatures, and even the signatures of the guests who came to see her that night! Now her poster is proudly displayed right by her bed and I am certain it will be an experience she will never forget! She is still listening to the CD and acting out ALL the parts on a daily basis.

As for BubTar, I was shocked by just how much he LOVED being a part of this production. He's a shy guy until you get to know him and I did not think he would take to being on the stage like he did. He listened to the CD every night, he lamented the fact that the high school kids got all the good parts, and he worked on a special bow for curtain call that he perfected over the course of the shows (a little bow with a special twirling of his cap). He never grumbled about practices or performances. He made friends backstage and he just felt at home! He has done a lot of different activities over the years; swim team, basketball, baseball, karate, scouts...but none of them made him light up like this did. On the last night, he said he almost cried when he changed out of his costume for the last time! Doesn't that just squish your heart a little? He's kind of the odd man out at school; smart, shy, well-behaved, but he finally found somewhere he "belongs" with this experience. It was wonderful him to see a group of kids, teenagers, and adults all working as a team, passionate about the same things. He's planning to do choir in middle school and start theater once he gets to junior high and high school. He enjoyed it so much that tonight he will be trialing a local musical theater class for kids. If he likes it, he has agreed for the lessons to be part of his upcoming birthday gift.

It was a wonderful experience for ALL of us, even Josh and I. Yes, the schedule was craziness for a month or so. Yes, it was craziness wrangling all those kids backstage. Yes, we are perpetually singing/humming/whistling the songs from the show. (One night I was walking through the house while singing a verse of "It's a Fine Life" and when it got to the part where the cast does an echo of the line, all three of the other people in the house, all in different rooms, sang back in unison, "It's a fine life!") But the benefits of the experience were huge for the kids and we genuinely enjoyed being a part of the show, too. I think we will all miss it a little!

That is a turkey, FYI.

Surprise! Surgery!

2012-02-06T15:22:00.000-06:00

Wednesday night: I noticed that the closure nub (seriously, there has to be a better name for it, but I can't think of one!) on KayTar's g-button was breaking. Except, I noticed it in the middle of the night and by morning, I thought it was a dream!

Thursday: After school, I remembered the dream, so I checked her button to reassure myself...except that didn't go to plan! It was breaking and almost completely broken off by then. Oops. I called the surgery clinic and left a message that her button was breaking and it wasn't urgent yet, but maybe they could get us on the schedule for Monday?? It felt a little too hopeful to me, but I REALLY did not want her to miss another performance. I bandaged her button up, so it wouldn't get tugged on during costume changes and off we went to the musical! I was the backstage parent that night so Josh would watch the play with his family, but evidently it was a PACKED house and the applause went on FOREVER! We could hear it from where we were! So cool.

A picture a cast mate drew for KayTar backstage.

Thursday night: When it was time to hook KayTar up for her last feed, I called Josh upstairs to show him what condition the button was in, except when I opened the button the closure nub was GONE. It had broken off and was lodged inside. Ack. Josh used the venting tube to push the nub through, then we fed her, then we hooked an extension to her tube, clamped it off, and secured it to her belly to keep stomach contents from leaking out. Normally it doesn't matter if the nub is broken, the internal anti-reflux valve should keep stomach contents in, but her valve has been blown since she got this button which complicated things a bit. I secured the tubing to her with hypoallergenic paper tape, BIG MISTAKE! I think that was the worst part of this whole ordeal. She broke out in hives in the morning and her skin is still damaged from it. Josh had the brilliant idea to use an ACE bandage instead and it worked like a charm!

With her new surgery buddy...

Friday morning: I called surgery again and left a message that the button was totally broken and we would need a replacement sooner than later and was told the nurse would call me around 8am. I gave KayTar Gatorade and cornstarch to keep her glucose up, but also get her closer to NPO status in case she was going to have surgery. Around 9, nobody had called me, so I called and left a message and marked it as urgent, only because I needed to know if I should keep KayTar NPO or not, it is a dangerous game with a kid who deals with hypoglycemia. Nobody returned my call, so around 10:30, I called again and was in the process of leaving a message when the nurse beeped in. She was SUPER rude at first, "Mrs. 'Tar! That tab breaking is NOT urgent! Unless stomach contents are shooting out of her tube, it is NOT urgent!!" To which I replied, "The internal valve has been been blown since she had this button placed, so YES, stomach contents WOULD be shooting out if I hadn't attached and clamped off an extension tube and secured it to her belly, but that is not the urgent part...the urgent part is that I've only given clears to a child with ketotic hypoglycemia in case she has to be NPO for surgery today." Then she was sweet as pie to me and very helpful. People should not mistake me for an imbecile, honestly. She said to keep KayTar NPO and she would call me back within an hour with more information. She called back and said that KayTar's surgeon couldn't do it, but she had called the on-call surgeon and would call me back as soon as she heard from her.

Friday afternoon: A bit after noon, the nurse called me and said the surgery load was light and we could come down and go to day surgery right away. We signed in, went through all the pre-op paperwork and interviews, talked with Child Life (which triggered a very sad little breakdown from KayTar about the gas mask they use), and all of that jazz. During her history, I mentioned to the NP that KayTar had had a possible bad reaction to LR during her sedated MRI (this is important later) and it caused persistent hypoglycemia/labile blood sugars for 24-48 hours. I guess she did not document this in her chart. (hint: foreshadowing )I spoke with the resident and asked him if they could start an IV for her and give her fluids, because her glucose was sitting at 70 which is the bottom of okay for her. He said that they would give her saline and D5, which is exactly what she needs in that scenario, so I thought that was that. (hint: more foreshadowing) In the holding area, KayTar decided that she would rather have an IV that be put to sleep with the gas, so the nurse anesthetist gave her one, complete with a "rainbow fist of power" as KayTar had requested. I got a call shortly after from the vice principal of the kids' school asking if BubTar could stay for detention to finish a delinquent assignment. AGH! For the record, this is not how I had imagined my Friday. Once they took KayTar back, I went back to the waiting area and updated Facebook and watched The Office via Netflix while I waited. She was in and out quick, as usual.

Friday night: When I went to see her in recovery, one of the first things I noticed was the bag of fluids she was connected to....LR! Agh! I told the nurse that she had had a previous possible adverse reaction to LR and he shut it off right away and called the anesthesiologist. Turns out the NP hadn't made a note of it and the resident who was supposed to be in her surgery and told me that he would start her on D5 and saline was not in her surgery, because she was moved to a different OR. The anesthesiologist was very apologetic and from now on I will tell EVERYONE on her case that she shouldn't have LR, so this won't happen again. Thank goodness it isn't a super serious life threatening thing, but crazy blood sugars are no picnic! Her glucose was 71 when she came out of surgery. I gave her 2 ounces of Pedialyte. Her glucose was 69 at the next check. Then I gave her some Sprite. Her glucose was 62 at the next check. WRONG DIRECTION. I gave her 2 ounces of apple juice and it finally came up to 90. I wanted to wait for one more check before we left, and it was down to 80 just 15 minutes later. 80 is a perfectly fine number, so we decided to book it, even though it wasn't looking incredibly stable. I didn't want to sit there all night because of the what ifs. By the time we got home, about 45 minutes later, her glucose was already 60! Unless something is wrong, her glucose stays well above 70. I was able to get it up to 90 again before she fell asleep with a melted popsicle/formula mixture and then I hooked her up to the pump and set it to give her 45ml every hour through the night, so her glucose wouldn't have time to drop. She tolerated it well and it was a perfect solution! Her glucose was 111 in the morning.

New button!

Saturday: We kept her on interval feeds for most of the day and she spent most of the day sleeping...until shortly before we went to the high school for the final run of Oliver! but more on that later... :)

Rehearsals/Performances!

2012-01-31T19:42:00.000-06:00

(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!

****

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.

2012-01-23T20:04:00.001-06:00

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.

2012-01-18T09:04:00.000-06:00

She was pain-free last night!

GI Plan, take two.

2012-01-17T17:37:00.000-06:00

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...

2012-01-15T14:43:00.000-06:00

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

2012-01-11T15:13:00.000-06:00

Friday/Saturday

2012-01-09T20:12:00.000-06:00

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.

****

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.

2012-01-05T08:50:00.000-06:00

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.

2012-01-04T09:52:00.001-06:00

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!

2012-01-02T22:59:00.001-06:00

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!"

KayTar's Car.

2011-12-27T13:04:00.000-06:00

It started months ago. KayTar got the idea in her head that she wanted a "pretend car" to drive around. From that point on, she mentioned it every day. Not in a whining or begging way, just in a "In case you forgot..." gentle reminder way. Every day. So Josh and I started entertaining the idea..but you guys, those cars are expensive! Like, more than the entire budgeted amount for KayTar's Christmas gifts kind of expensive. So we didn't really think it was going to happen, but for kicks, we started checking in on Craigslist to see what the secondhand ones were going for. It was kind of dismal, the affordable ones were in crap condition, having spent a lot of time outdoors in disuse. We even went to see one in our price range, but the battery was pretty much dead and the car was rough. Drat.

Then one day I got on Craigslist and refreshed the page and a new listing popped up. Reasonable price, like new condition. Pink, convertible-like...just like she wanted. I emailed the guy immediately. I had Josh call him and leave a voicemail about coming by to see it on his way home from hunting. He didn't get back to us until the next day, though. When he did, he said, "I've already gotten a lot of messages about the car, but you and your husband contacted me first, so you have dibs on it if you are interested." Josh drove out to see it and bought it on the spot! It was perfect! Sooo, we've been sitting on the car since OCTOBER! It has been killing me every time she asked about it...and she never stopped asking about it. She was sure Santa would bring her one. Well, he didn't...but only because we beat him to the punch! ;)

He's a good brother and agreed to ride with her, but was super embarrassed.

On Christmas Eve, I was so excited that I couldn't sleep. After months of waiting, she was finally going to get her wee little heart's desire! Amazing! :)

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She loved it at first sight and continue to love it. She drives it back and forth in the living room and loves to drive it up and down the block. It gives her the kind of freedom other kids her age can have on a bike or scooter or skateboard or roller-skates. She can't really do any of those things yet...but she sure can drive that car. And she loves it! I am so, so happy we could give her her dream for Christmas this year. Hooray for Craigslist!

Christmas Eve/Christmas Morning

2011-12-25T12:24:00.001-06:00

(In mobile photos)

Delivery of monkey pjs and Muppet Christmas Carol from the Elves.

Before church...

At church.

Me and my sweet little niece

Awwwww.

Ready for bed!

Santa brought new mongrammed stockings!

BubTar's goodies from Santa

KayTar's drums from my parents.

The car is from us, the monkey from Santa.

KayTar and her boyfriend, Socko.

Santa put 'staches in his stocking.

Playing Skylanders.

Drumming her little heart out!

Hugging her car!

In his Doctor Who outfit.

He got a fez to complete the outfit, he was WAY excited.

Short synopsis: I was too excited to sleep last night, went to bed a 12:30am and gave up at 3am and started watching Netflix on my iPad. Everyone else was up at 4am. Everyone is quite pleased with their gifts. KayTar has been driving her car back and forth in the living room all day/drumming in her room, while periodically exclaiming her joy and thankfulness. BubTar is in Doctor Who/video game heaven. Also? More coffee please! ;)

Merry Christmas from the 'Tars!

2011-12-23T19:43:00.000-06:00

No, finals week did NOT kill me...

2011-12-20T13:03:00.000-06:00

Yikes! I didn't mean to maintain Internet silence for so long! Here is what we've been up to...

On December 9th, the kids took photos at school with Santa in their fancy holiday-wear. BubTar wore a dress shirt, tie, and suit jacket (though he didn't wear it in the photo). He spent about 15 minutes admiring himself in the mirror that morning. The boy LOVES to look nice. KayTar told me, "I tried not to smell Santa, but if I was Buddy the Elf, I'd have ripped his beard off!"

Then that afternoon, I picked up TWO crying kids from school. KayTar was sad because someone else took the treasure box treasure she was eyeing. BubTar was crying because a large group of fourth graders got in trouble for running/being noisy after rehearsal and he had to miss outdoors time and write an apology letter even though he didn't actually run/shout. Sometimes life is like that and you just have to know that you did the right thing, do what is asked of you, and let it go...but he's not good with the letting it go part. That evening, we went to my niece and nephew's birthday party. It was fun until BubTar started losing at Wii baseball, then he pouted the rest of the evening. (sensing a theme yet?) Speaking of him not being a very good sport about losing...we were playing Wii Sports on Thursday night and he was losing to me every round. He told me, "I read a study that says if a kid can't beat their mom at any Wii Sports, they will never pass college and will be a stupid McDunderhead." Ha! What 9 year old tries to make up a scientific study to prove a point?! So funny. It was cracking us up!

Pre-pouting

The next day, we went ice skating with friends. KayTar had a great time, even though she fell a billion times and had to hold on to two people to stay upright...BubTar cried in the penalty box because he wasn't skating at a professional ice skating level yet. It was a very fussy weekend for BubTar. The funniest part of the outing was when this little girl told KayTar, "I'm gonna pass you!" and KayTar said, "Oh, it is ON!" Then seconds later, the other girl fell...and KayTar said, "Oooh, God PUNISHED her!" Ha!

After ice skating, we dropped him at a camp out birthday party with his friend who went skating with us. The rest of us came home to rest a little before having dinner with Josh's family and going to the Christmas house.

Sunday, KayTar and I made salt dough ornaments...a lot of salt dough ornaments! The boys started decorating outside (and it still isn't done, though).

Monday-Wednesday was spent mostly studying. Tuesday night was BubTar's Christmas play. He had a speaking part this year! Wednesday was my last two finals, I did great on my POLS exam, still not sure about Cal. Waiting impatiently on grades to be released! So far I have two A's and two unknowns. On Tuesday night, I took the wrong camera lens, so I didn't get any good photos. After my finals, I went to the kids' school to watch it again and get some decent photos!

After school, KayTar's girl scout troop went to a nursing home to sing carols. It was so cute and the residents appreciated it so much. One old guy with a Santa-esque beard, suspenders, and a Harley t-shirt, gave half dollars to all of the kids! It was a good day, but it sure was long after my late night of studying and early morning of finals!

Thursday was spent running a CRAZY amount of errands to prep for the kids' last day of school and holiday parties. I really could use more than one day between my last final and their last day of school. Somehow it all got finished, but it wasn't easy! KayTar had the bright idea that morning to make salt dough ornaments that say "IT" for her nurse and PE teacher (click here in case you missed the origin of this), so I ran around to find alphabet cookie cutters first, then spent most of the day making dough, rolling it out, cutting it out, and baking several sets of different ornaments so they would be ready for KayTar to decorate when she got home...but it was well worth it! Bed, Bath, and Beyond has a GREAT set of 100 cookie cutters for 9.99. It includes all the letters and numbers, animals, holiday sets for Easter and Christmas and Halloween, vehicles, and a lot of other shapes!

You're IT!

Friday was classroom holiday parties, followed by KayTar's girl scout party after school. It was another full day! After school, BubTar went to my parents' house and my dad taught him to tie a tie! He is SO proud. He came home and demonstrated his new skill about 5 times. My dad gave him a couple of ties, too, and now he wants to start a tie collection. So cute!

Both kids started to get sick on Friday, so we've mostly rested since then. Yesterday I went out alone and finished ALL my Christmas shopping! Everything is wrapped and under the tree except for two last minute gifts I ordered for KayTar from Amazon that won't arrive until the 24th! EEK! They aren't a big deal, so even if they don't make it in time it won't matter. Christmas cards are finally going out in the mail today...I'm a little late on that front! It feels good to have everything done, though! Now I just need these kids to get well so we can have some fun! Josh is on vacation this week and I hope we get to enjoy it some. Just 5 more sleeps until Christmas! I can't wait!! :)

Finals Week!

2011-12-13T11:30:00.000-06:00

While I'm busying studying, enjoy these photos of a sock monkey doing homework...

Sock Monkeys do their addition with their noggins.

Sock Monkeys recommend Hi-Write paper.

November Leftovers, part one.

2011-12-08T20:59:00.000-06:00

One night, we went to dinner with my parents and KayTar asked my mom if she was one of the pilgrims. The original pilgrims.

****

I heard from a friend that a local high school was looking for boys BubTar's age to be in a production of Oliver! so I took him in for an audition. KayTar was there, too, and seeing her interact with the directors was like watching someone find their tribe. They just ate her up! She ended up getting offered a role, too. She told the director, "I don't want to slip when I'm jumping, so you should probably put me at the top in the middle...with a spotlight, so I don't trip in the dark." He laughed so hard and said, "That is the best! I'm going to use that excuse the next time I'm going to be on stage, so I can be center stage with a spotlight, too!" The other director told her that her full name was very queenly and that it would be a great name to have if she ever married a prince. KayTar said, "Oh! I'm planning on that. But I'm going to go to school as plan B." It was hilarious. On the car ride home, she said to herself, "Oh my gosh! I can't believe I'm going to be in a high school musical...and then maybe, A MOVIE!" (On a serious note, I didn't go into any of her medical stuff with the directors, but I will when the practices get closer. I'm hoping she will have the energy to do this, because she wants it so much! She knows that we'll have to play it by ear, though.)

****

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BubTar wrote this description of us for his autobiography at school. I saw it posted in the hallway and had to snap a picture. It is the most awesome thing ever.

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The morning after Thanksgiving break, BubTar told me, "My body was being a jerk this morning. I kept telling it 'Get up! Get up!' but it wouldn't listen." We've all been there, haven't we?

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Love his little concentrated snarl.

KayTar and my mom.

KayTar and my dad.

More to come...mostly photos, though!

October Leftovers.

2011-12-06T16:37:00.000-06:00

He's making this face on purpose. I still love it.

Origami Yoda

I know I'm biased, but he really IS super handsome.

I love these of my dad helping BubTar with his tie on Halloween.

He was trying to take a bad picture. He can't, evidently.

Pointing to her little hippo that the lady at the joke shop gave her for free!


Trick or treat! You'd give her candy, right? Even though she won't eat it?

And a couple of short stories, too...

One day at lunch, KayTar pointed to one of her classmates and said, "He used to have the most handsome hair, but he got a haircut and now he's got nothing. It used to be handsome and wavy, wavy like the sea!"

***

KayTar has been working on her handwriting this semester in OT, using the Handwriting Without Tears program and Abilitations Hi-Write paper. One day (waaaay back in October), KayTar showed me one of the letters she had written and I said that it looked good enough to marry. She thought it was SO funny that she kept trying to make her other letters look good enough so I would divorce the letter Z and marry one of them instead. In fact, she still plays this game with me during handwriting time. It has been surprisingly good motivation!

Things to Remember.

2011-12-05T14:30:00.000-06:00

We decorated our tree last Sunday and I'm just now posting a couple of photos. Sheesh. I haven't really been on the ball lately, I'm pretty sure I still have a bunch of October and November photos I never got around to posting, so I'm putting that on my to do list!

While I'm bringing up things I'd like to do...I want to make sure more of the hilarious things KayTar says and does end up here, not just dumped onto Facebook (because they get really hard to locate after a week or so!). I've often enjoyed going back through my archives and reading about her former self (and BubTar's, like the time he jumped at kid in thep pick-up line for claiming to be Sharkboy without appropriately spikey hair...nowadays he scoffs at Sharkboy, because he grew up to be that shirtless werewolf kid in the Twilight movies) and I think a lot of her little stories are slipping through the cracks. I need to be better about that. For instance, this weekend we were watching Harry Potter and the Prisoner of Azkaban together and I mentioned that Sirius had been framed, which led to a conversation about what framing means in that context...being set up so it looks like you committed a crime that you did not actually commit. A few moments later, she tooted and said, "Excuse me! THAT was a crime I DID commit!" These are the little gems I don't want to forget!

This morning, when I snuck into KayTar's bedroom to give her her 5am dose of Nexium in her sleep as I do every morning, she sat up in bed, still mostly asleep, reached for me, gave me a big hug and kiss, and whispered, "I love you, Mom." and snuggled back down in bed. I don't want to forget these moments either! Later this morning when she was actually awake, I asked her if she remembered it and she said, "Yes, I remember. I was still asleep, but I just really wanted to do that, so I did." My sweet little sugar lump!

On a side note: KayTar seems to be doing well at the moment. I hate to even mention it, but she hasn't had stomach pain recently. Maybe the combination of Nexium twice a day, Augmentin four times a day, Miralax twice a day, and Culturelle twice a day is finally balancing out whatever wonkiness has been plaguing her. Regardless of why, I'm just happy she isn't having frequent pain right now. (KNOCK ON WOOD!!) I tried to increase the rate on her feeds a bit this weekend, but it didn't work out. She didn't know I had changed anything and she asked me to stop her feed early for the first time in a long time...so we just went back to her new-normal rate. Sooo, things aren't exactly getting BETTER, but we are maintaining currently...so I consider it a win!

You're It!

2011-11-30T20:55:00.002-06:00

Earlier in the school year, KayTar's nurse and her PE teacher started playing a little game of tag. The first time I heard about it, Ms. B had snuck into the Nurse C's office and stuck a bunch of balloons all over the clinic that said, "You're it!" Of course, KayTar saw the balloons and wanted to know what was going on, so the nurse filled her in...and then they started plotting to get Ms. B back. They hid a balloon in a bag that KayTar took to PE and she got Ms. B to look in it. She sure wasn't expecting to get "gotten" by one of the kids!

Since then I guess the game has continued, but I hadn't heard much about it. But this weekend, KayTar was reading through her old emails and came across one from Nurse C about their previous plotting against Ms. B, so on Monday she went to school ready to get back into the fray. She came up with her own scheme in which Nurse C would put a bandage on a pretend ouchie and write "IT!" on it, then KayTar would get Ms. B to look at it during PE. That is exactly what she did! She went to PE with her fake wound and said, "Ms. B, I can't play in PE today because I've got a bad bo-bo...do you want to see?" And then BAM! KayTar got her. Hahaha! Sneaky little lady.

Then today in PE, KayTar really fell and got hurt and Ms. B knew that if she sent KayTar to the nurse, she would think it was a rouse, so instead she iced KayTar's knee in the gym and then they doctored up a different fake wound (complete with and "IT!" note and fake blood!) and went to the nurse together. They told me that this plotting really cheered KayTar up from her actual ouchie. So as they got close to the clinic, KayTar started moaning and wailing about her injury (for dramatic effect), then she sat down in the clinic, pulled up her pants leg to show the nurse and said, "Gotcha!!!" and laughed herself silly! Then the nurse tended to her real injury before sending her on her way.

She is having such fun being in on this little game! She loves the scheming and playing her little parts. I enjoy hearing about the stories, both in emails from the nurse and from KayTar's retelling on the way home from school. Beyond that, I am so thankful that she is in a school where so many of the staff have really gotten to know and embrace KayTar's silly, joyful, happy-go-lucky personality. It can be tough and worrisome to send a kid with complex medical issues off to school everyday, but the truth is that when I send KayTar to school I know that she is in wonderful hands. Her nurse is truly an angel and she doesn't only make sure KayTar's medical needs are taken care of, she makes sure she is happy and well-loved every day, too. I could not ask for more!

Here she is "helping" me take photos of BubTar.

Thanksgiving break!

2011-11-27T14:06:00.000-06:00

We've had a really great week...too bad we're back to the real world tomorrow!

Saturday we went out for lunch at Cici's Pizza and then went by the animal shelter...just to look! I've been asking for a puppy for Christmas ever since our new neighbor puppy found her way into our backyard and spent a couple of afternoons with us until her family got home. There were so many cute animals at the shelter, so we chose a few dogs we were interested in, but as we stood in line, most of the dogs we had chosen were claimed by other folks. There was one left, the one BubTar was really interested in, so we asked to see him. They told us he was "snappish" when he came in and maybe not a good idea with the kids, but another worker said he was VERY sweet and had warmed to him quickly. So we went ahead and asked to visit with him. He was SO pitiful! He just cowered in the middle of the room...no sniffing, no licking, no wagging. Nothing. He just laid still, probably hoping no one would hit him. :( He definitely wasn't aggressive towards us, though. Not a growl or snarl or anything. He was too scared to move, I think. He wasn't available to be adopted yet, since he had only been in the shelter for a day, but we filled out a non-binding application so we would be first in line if we decided to get him. Since we already have a dog, they told us we needed to bring her up so they could meet before we could adopt him, so we made plans to do that on Monday.

I can't remember much of Sunday, which probably means it was a pretty lazy day! I think it was a grocery shop/do laundry/finish my history review kind of day.

I had class on Monday, but I skipped. I had tests in both classes the previous Wednesday and I knew we wouldn't really be doing much that day, so I stayed home with the family. We cleaned up the house; KayTar went to make cookies with my mom; Josh, BubTar, Penny, and I went to meet with Number Twelve at the shelter. The meeting went well enough. No aggression, just mutual avoidance. Fair enough. We housed a dog for a while this summer (a lost dog roaming our street, until we found the owner) and Penny was VERY aggressive, so avoidance was an improvement. They hadn't processed our application yet, so they said they would call when they had. That night we went to a birthday dinner for my father-in-law. The shelter called and left a message saying we were approved! I was still a little unsure...he hadn't been really warm towards us, because he was still so scared and submissive. I also still really wanted a puppy, and he was about a year and a half old. But things were moving along and everyone approved of him, even KayTar, who hates dogs and their jumpy, waggy, licky behavior. So I just let things unfold.

Tuesday morning, on my way to class, I went by the shelter to pay the adoption fees and they told me he had already been sent out to be neutered and we could pick him up that night. After my exam/class, we went out to Chuck E. Cheese to meet up with KayTar's little Kindergarten boyfriend from last year for an hour or so. Then KayTar spent the night with my parents that night and the rest of us went to pick up the doggy. He was so pitiful! He was all sad and drugged from surgery, awww! That is when I kind of started to fall in love with him. What a cutie! He was still a little aloof, so we just let him get used to the house and us and he started to warm up to me pretty quickly once we got him here. I went out and bought his kennel and he slept in it, no problems! He was housebroken, too, no accidents!

On Wednesday, we had one of BubTar's friends from school and her family over, they were picking up a big castle they were buying from us, and the kids ran around and played for an hour or two. As they were leaving, Josh opened the front door and the dog took off! I took off after him at full tilt (oh my gosh, you guys, I do NOT run, but I was booking it. I nearly died. LOL.) and evidently Josh and BubTar ran off after me, leaving KayTar in the yard with our guests. I chased him down the block and around the corner and then he just stopped and looked at me. Like, "Oh, I have home now." so I scooped him up and we went home. Now we are SUPER careful about opening the front door. Penny will NEVER run away, in fact if the back gate is open, she comes to the front door and scratches to let us know...so having a runner is a new thing for us. That night the kids and I played Clue and he napped in the Clue box. It was adorable. He also started coughing a lot...kennel cough. Oh, and we decided to call him Dobby (from Harry Potter). So far, it has stuck. He is such a little sweetie! He is exactly what I wanted; a small, sweet dog who loves to cuddle. Everyone in the family approves, though Penny is a little cranky about the change and Peanut (the cat) and Dobby are still figuring each other out.

Thursday was Thanksgiving, so we had lunch with my parents and dinner with Josh's parents. KayTar ate TURKEY at lunch! First year EVER! It was awesome. That night, Josh's littlest sister spent the night with BubTar.

My parents picked me up at 4:30 the next morning for our traditional Black Friday shopping. We went to Academy, Big Lots, Target, Kohls, Best Buy, and Barnes and Noble. I wasn't going for anything specific, but I did pretty well and got quite a bit crossed off my list. Between that and online shopping later in the day, I finished BubTar and got pretty close to being finished with KayTar, too! I took the best nap I've had in YEARS later in the day. It was glorious. KayTar started to get sick on Friday, too, probably thanks for Chuck E. Cheese...there is not enough Purell in the world to keep her well in that microbe convention.

Yesterday, we mostly hung out at home, letting KayTar get the rest she needs. She and Dobby are both on the same cough medicine (Triaminic), so I keep joking that she's got kennel cough, too. In the evening our friends came over to hang out and we played Mexican Train and had mudslides.

Today Josh is working on a literature review, I'm doing laundry to prepare for real life tomorrow, KayTar is resting, and BubTar is watching a lot of Doctor Who. Later in the day we are going to put up the tree and Josh is going to make Pioneer Woman's meatloaf tonight. Then it will be back to reality, bright and early tomorrow morning. AGH!!

Wordless Wednesday: Our new pound puppy!

2011-11-23T13:51:00.000-06:00

Sleep Study Results

2011-11-20T22:30:00.000-06:00

We saw the pulmonologist on Tuesday to get KayTar's sleep study results.

She was asleep for 86.9% of the study. (norm is greater than 90%)
She had 189 arousals or 20.9 per hour. (norm is less than 14 per hour)
Her O2 saturation was usually 97% with desats to 91%.
Her EtCO2 was as high as 52 mmHg, but usually 45-49 mmHg (norm is below 45)
She had 15 central apneas lasting between 8-16 seconds.
She had 3 obstructive hyponeas.
She had a slightly slow occipital rhythm on EEG.

So, she had some abnormalities...but nothing too dramatic, and nothing to current pulmonologist wants to treat. It is a little frustrating...on one hand, we are glad she had no major abnormalities...but on the other hand, we are tired of living in the gray area! It is also frustrating because I've talked with a few parents whose kiddos see the pulmonologist who specializes in these metabolic/mito kids (the one we were supposed to see) and she treats at lower thresholds, because these kids tend to be more affected by these subtle changes, so kids with more normal results than KayTar are being treated. I'm especially concerned about her EtCo2 being mildly, but consistently elevated all night. That, plus the fact that she holds her breath so much of the day, makes me worry a bit about hypercapnia. Seems like there is a chance that headaches and fatigue could be stemming from that and I'd like to rule it out for sure before we ignore it as a possibility. The truth is that if nobody truly knows what is going on inside KayTar's body, they really don't know if these slight changes are causing problems for her. Alas, getting a doctor to return a phone call or email these days evidently requires an act of God...so I'm not going to hold my breath that anyone will actually follow-up on this. Pun intended. ;)

****

In other news, KayTar has had a couple of good weeks, school-wise. She hasn't really needed to make any extra trips to the nurse during the day (with the exception of an odd earache complaint), so that is good. But she is still having issues at home...headaches a couple of nights this week and more abdominal pain tonight. I've been playing phone tag with the GI office since Friday before last...10 days now. I've spoken with a couple of nurses in the meantime, the one I mentioned in the previous post, and a different one who seemed at least familiar with KayTar's case and was reading comments that I could tell actually came from her GI. She basically asked what I felt was appropriate and I said that I just want to make sure we aren't overlooking a physical problem before writing this off as her new baseline. We decided to order a KUB and get a referral to a motility specialist. The last thing she said was, "Let me call [clinic location] to get that KUB scheduled. I'll call you right back." That as WEDNESDAY. Sooo, we're getting nowhere quick. I'm really hoping someone gets back to me this week, though, so we might have a shot of figuring this out for her.

Almost, but not quite.

2011-11-13T19:31:00.001-06:00

KayTar had a really great week this week. She is back on 8 ounce bolus feeds four times a day and she went all week without extra visits to the nurse for abdominal pain or headaches! Thursday night, I was contemplating writing an email to the pediatrician to tell her how well things had been going...then 20 minutes after I had this thought, KayTar called out that her tummy was hurting. Blurg! I cannot adequately explain how much I want to get her back to baseline. We are getting close, several months and two new meds later, and I'm glad we are getting close...but we just can't get her all the way there.

I called her GI on Friday and spoke to the nurse. Before we just accept that this recurring pain is just part of her new normal, I want to be sure we aren't missing anything we can fix. When she saw the doctor last, there was no pain, just decreased feed tolerance and increased reflux...so I wanted to make sure she had all the information. The nurse spoke to the doctor and called back, but I was out and she spoke to Josh instead. She said to take KayTar off her motility medication for the weekend and start her on probiotics and call to update on Monday. The problem is that KayTar's pain preceded starting the motility meds, and it actually the big reason we went ahead and started the medication, so I already know that isn't the cause of the pain. I'm not going to risk ruining the fact that she is finally on normal feeds again without them having all the information, so I called back, but no one returned my call before end of day Friday. So, I started her on probiotics, but didn't take her off the motility meds...not until I talked to them to clarify the order of events a bit better.

We have had a good weekend. Josh's birthday was Friday and he had the day off, so we spent it together. We spent half of it at the kids' school, eating lunch with the kids and helping out with Jump Rope for Heart, then had dinner with Josh's family in the evening. Yesterday, we went to Turkey Trot at the kids' school, my niece's birthday party, and then Josh and I went out to eat with our best friends for dinner. It was a fun night! We picked up the kids after and shortly after we got home, KayTar grabbed her eye and said she had a headache...and a tummy ache. I gave her Motrin and heated up her rice bag for her tummy. She fell asleep pretty easily spite of it. She said it had been hurting for a while, but she wanted to wait until she got home to tell someone. I reminded her that she needs to speak up as soon as she starts feeling bad, so we can help her feel better sooner.

I hate that she is still having pain for no discernible reason. I hate to think that we may really have lost her baseline for good...which makes the possibility that she has something progressive carry a bit more weight. In truth, I've spent a bit more time thinking about that lately than I'd like. I still have no idea what I'm going to do next semester yet, though registration for classes is open now. But, I'm glad her feeds are back to normal. I'm glad she had a great week at school and only had pain twice. I'm incredibly glad she is still happy, bubbly, bouncy KayTar and she takes these little bumps on stride. That is truly a gift.

Monday morning update: She didn't tolerate her 8 ounce feed this morning. She called down and asked me to turn it off because she was feeling pukey. She only got a little over half of it before feeling yucky. We're trying 8 ounces again for her midday feed at school, so we'll see how it goes. I really need to knock on wood when posting good news of any sort...when will I learn?!

Honor Roll Kids!

2011-11-09T14:24:00.000-06:00

The first grading period for the kids ended a couple of weeks ago and both of my little smarties made Honor Roll! BubTar has always been on Honor Roll, so that was not a surprise, but since KayTar has never made real numerical grades before this year, it was her first time!

BubTar was especially excited to see her first report card and had it out of her folder and was reading it aloud before we even left the school parking lot. He announced, "KayTar made the Honor Roll!" and I said, "Well, what about Math?" because of all of her subjects, she has the hardest time with that one because unlike reading and other verbal skills, she doesn't just KNOW the answer innately...it is tough to transition from automatically knowing-it-all to having to do actual figuring in your brain! But BubTar said, "She made a 90 in Math...almost a B!" He said it with just a hint of condescension in his voice, too. So it was QUITE funny to pull out his report card at home and discover they had identical grades in Math, 90, an almost B as BubTar called it. In fact, they had identical grades across the board (in the subject KayTar gets grades in), except for Spelling, where she beat him by 2 points. They were both pretty entertained by their matching grades! Which, for the record, were as follows:

Language Arts: 98
Reading: 99
Writing: 96
Math: 90
Social Studies: 98 for B/S for K
Science: 96 for B/S for K
Spelling: 97 for B/99 for K
Conduct: A

KayTar's report card said, "KayTar is such a smart and talented girl. She is a joy to have in class. Keep up the good work, KayTar!"

BubTar's said, "BubTar is a pleasure to have in my class this year. Honor Roll!"

KayTar missed 6 out of 36 days this 9 weeks, and BubTar missed 0.

And the best part was the KayTar FINALLY got a certificate during Pod Awards. Every 9 weeks for the past two years, she has cried on Awards Day, because prior to numerical grades the only certificate the kids could earn was Perfect Attendance...and that is an unattainable goal for our sweet girl. When she got her award, she said, “Oh my gosh! I’ve never received a certificate before!”

****

Speaking of school, KayTar had a homework assignment in which she had draw and label different kinds of nouns, ie. person, place, thing. This is the picture she drew for her things (glasses, blankey, vanity, and pump):


My favorite part is her, pushing her little IV/pump pole.

Thoughtful Sock Monkey.

2011-11-07T08:03:00.000-06:00

I am in love with this photo.

Third Tube-iversary!

2011-11-04T18:11:00.000-05:00

Today is KayTar's 3rd tube-iversary! She has now had a g-button for just as long as she ever lived without one. It is hard really remember what life was like pre-tube, but I do remember it was A LOT more stressful for all of us.

In the hospital, after placement...

Last night when I was tucking her in, I told her, "Tomorrow you'll have had a g-button for THREE YEARS! Half of your life!" And she looked very concerned and said, "Oh? Will that thing happen to it?" I said, "What thing?" She said, "Like with the milk, when you have to throw it away?" Then I realized what she meant, "You mean, is it going to expire?" She nodded seriously and I assured her that wasn't the case, "YAY!" she said in reply. She loves her tube, it has made her life so much easier, healthier, and more pleasant. We were SO worried about it before we she had it placed, but it has TRULY been the best decision we have ever made for her. This morning she walked out to the car singing her little tubey "Happy Birthday!" :)

Here is a video from right after she had it placed, explaining it...such an adorable, wee little thing she was!

Sleep Study!

2011-11-03T20:57:00.000-05:00

KayTar's sleep study was last night and it went better and worse than I expected. It went better in that she didn't have any major allergic reactions to the adhesives, so the no-Coban/limited adhesives plan worked. It was worse in that there wasn't much sleep happening during that sleep study. She slept enough for them to get the data they needed, but it was not a restful night and she moaned a lot and woke up confused a few times. She usually sleeps right through the night, even when we've been inpatient, but it is tough to get rest when you are hooked up like this! EEG, EKG, nasal cannulas, bands around the chest to measure expansions/contractions, sensors on her legs and chin, pulse oximeter...yowza!

That being said, I'm certain she got more sleep than I did. I was not feeling my best in the first place, but when you add in the freezing room, hard mattress and pillow, sleeping fully clothed with a hoodie on, and a kiddo who isn't sleeping...well, it was not a recipe for successful snoozing. We got through it, though, and it was definitely not the worst test we've ever been through!

The techs would not tell me anything, so we have to wait 3-4 days for the report from the doctor. I'll call on Monday to check on things, because I'm very curious about how it looked on their end. I know from watching the one monitor in the room that her ETCO2 stayed in the 45-49 range for the most part and I saw her RR drop below 10 a few times. Of course, I didn't watch the monitor all night...I did attempt to catch some Zzz's, though they proved to be quite elusive. KayTar and I spent the day here recuperating and I am SO looking forward to a good night's sleep in my own amazingly comfy bed tonight.

Wordless Wednesday: Halloween Aftermath...

2011-11-02T08:38:00.000-05:00

Happy Halloween from the 'Tars!

2011-10-31T15:11:00.000-05:00

This kid is so classy, he makes scratching a mosquito bite look like art.

This one is my ABSOLUTE favorite.

Decorations for the party on Saturday.

KayTar's pumpkin (Josh did the carving part)

BubTar's self-designed pumpkin.

Notes from the Wobble Board.

2011-10-27T10:01:00.000-05:00

KayTar is having a pretty good week. Monday and Wednesday she got through the entire school day without having to visit the nurse (except for her daily visit for meds and pump hook-up), and Tuesday there were some small bumps, but she made it through. She's flirting with a little respiratory infection, but doing well in spite of it.

In PT, KayTar had to stand on this thing called a wobble board, it was a wooden platform on top of a rounded rubber pillow of air that forced her to work VERY hard to maintain her balance. She would get up there and her legs would shake and her knees would buckle and she would grab onto her therapist for dear life. Lately, it seems like I'VE been on the wobble board. This semester has been stressful for me. I was chosen to be part of a STEM majors honor society at the end of last semester, which initially I thought was great. I was under the misconception that it was simply a scholarship program for impressive students (because that is all they tell you when applying!), but it turned out to be so much more than that. I had to sign up for an additional course, which was just one credit hour, and from there I found out that there were multiple mandatory events outside of class time. The society itself had something like 10 mandatory extracurricular events (the list just kept growing!) and the one hour course had several in addition to that. The class also required a lot of reading, online participation, and group work...it was my most demanding course and made Calculus look like a cakewalk. For a NORMAL undergraduate student, I can see the benefit of all of these things, but for me, especially THIS semester with the way things are with KayTar, it was impossible. A few weeks ago, I attempted to withdraw from the program, but my advisor said she was willing to compromise with me on certain things, so I tried to stick it out for the semester...but things just kept getting more complicated with KayTar and I just COULD NOT have that hanging over my head. So I finally officially withdrew last week and I feel so much better. I hate "quitting", but the truth is that if I had known about all of the hidden requirements when I applied, I NEVER would have applied. I am so careful about my schedule, because I know that there is a limit to what I can balance and I was even more careful this semester because this summer was rough for KayTar and we are seeing a lot of doctors and going through testing right now. This program tipped the scales in a dramatic way and withdrawing from it was the right call for me...and for us as a family. So, whew!

I'm not sure what I'm going to do about next semester. It has been a long time since Josh and I have really been hit by the uncertainty of raising a kiddo who has an undiagnosed, unpredictable disease, but this semester has really driven that point home once again. This summer was difficult, this semester has been difficult, and Josh and I are both concerned that next semester will be more of the same for her. We are thankful that her motility medication is helping and heartened by the good week she is having, but it seems like abdominal pain, headaches, dizziness, and other things are constantly lurking. We both hope this is just a flare up and we hope that she is on the upside of it now, but we can't say that with any certainty. Josh, who is extremely laid-back, brought up the possibility of home school last week, and he is NOT pro-home school. We're definitely not there yet, but the fact that he brought it up at all shows how uncertain things have been this year...how much our day to day with KayTar has shifted. As far as my school goes, if I had to decide right now, I'd say that it would probably be best for me to take next semester off or go back to evening classes for a while. When I decided to go to school full-time during the day, things were simpler with KayTar and it was an easier balance to maintain, but now everything is topsy-turvy again. School is important to me, but KayTar is my priority...she doesn't always need me, but I want to be there for her when she does. Luckily, I don't have to make any decisions right now...I just have to keep my head down and survive THIS semester (which in spite of all the extra stress, is going pretty well), because as my favorite Bible verse says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." And isn't that the truth!

I think we're getting there!

2011-10-24T17:24:00.000-05:00

Since starting KayTar on Augmentin, she hasn't had any abdominal pain! Her current GI med/feed schedule looks like this:

5am: Nexium

6am: Augmentin + 6 ounce Pediasure (over 45 minutes)

11am: Augmentin + 8 ounce Pediasure (over 1 hour)

3:30pm: Augmentin + 8 ounce Pediasure (over 1 hour)

7pm: Nexium

8pm: Augmenin + 6 ounce Pediasure (over 45 minutes)

Actually, last night Josh forgot to adjust the dose on the pump, so she got 8 ounces at bedtime and it went well! We're keeping at the 6, 8, 8, 6 schedule for a couple more days and then we'll move up to all 8s and see how it goes. She is also eating pretty well (for KayTar), even her beloved meats are not causing pain. Thus far, I would say the Augmentin is a success and I hope that it continues to be helpful to her!

****

On the respiratory front, KayTar might be having her sleep study done this week IF the pulmonologist's office can actually get the orders sent out. One of the most frustrating aspects of having a medically-complex kid (aside from the way the new Zevex bags stick to the bottom of the spout and make me spill formula once a week, at least) is all the calls to physician's offices and schedulers to make sure orders get sent, received, and to the people they are supposed to get to so tests can be scheduled (or to make sure referrals are made or that lab results are received or that the medical supply company sends/receives updates prescription forms on time and so on ad nauseum). If you don't have experience with this little game, you would be SHOCKED to know how many times the ball gets dropped during the process. It seems very straight-forward; doctor writes an order, staff member faxes an order, scheduler receives an order, calls parent/patient to schedule. But it usually goes more like this, doctor writes order, forgets to sign order, parent calls office to check on order after a week, doctor supposedly signs order, order is supposedly faxed to scheduler, parent calls scheduler (another week later) who has not received the order, parent calls clinic to check on order, staff tells parent that order was faxed already, parent asks if they would mind refaxing it, parent calls scheduler to notify her that orders are coming, asks for a call back....and waits. Repeat calls daily until orders are received by scheduler. So, that is where we are now, but the scheduler told me that they have an open slot on Wednesday, so if the office gets the orders to the scheduler soon, KayTar will likely be having her study done this week. Fingers crossed!

****

In other news, BubTar finally decided on his costume: Dr. Who (the 10th) Isn't he cute?!

Good and Bad

2011-10-20T09:35:00.002-05:00

Good:

We started KayTar on Augmentin for motility on Tuesday and since then, she hasn't complained of abdominal pain and she is back on 6 ounce bolus feeds. Yay! We are going to stay at 6 ounces for now and try to add in some meat (her favorite thing!) and see if she stays pain-free before trying to increase to 8 ounces.

Bad:

Yesterday, KayTar was complaining of being "spinny" at school. It was a persistent complaint and she didn't look quite right to the nurse at times, so she called me and I came up to observe her for a bit. She seemed okay for the most part, but once while we were talking she kind of crumpled in my lap and she grabbed her head and said, "Oh, it is worse!" Since spinny is a buzz-word for episodes, I erred on the side of caution, brought her home, medicated her, and tucked her in. She slept for a while and woke up feeling better.

This morning as I was leaving the kids' school, she was in the clinic again, complaining of being spinny. She tried to talk me into taking her home, but she seemed okay. I don't want to react prematurely and teach her that saying she is spinny will get her a ticket home. So I told her to put her head down at her desk if she feels spinny, or sit down if she is standing, and then check in with the nurse when it is her regular time to see her. Even though she seemed okay, I'm a little nervous about how the day will go. I'm about to head out to my history class...exam day...so hopefully everything will be smooth and we will both get through our respective school days.

- Posted using BlogPress from my iPad

A Halloween Joke from KayTar.

2011-10-17T19:46:00.000-05:00

KayTar picked her Halloween costume yesterday, a skeleton. She was wearing it around the house yesterday, trying out different skeleton jokes so she would have some good lines for Halloween. At one point, we were shooing her out of the room to go play and she said, "Or I could go BONE myself! Get it?! BONE MYSELF?!" then she started laughing and pointing at her costume.

We almost DIED! We certainly got it, but she sure didn't!

We told her not to use that one for Halloween...I can just imagine her telling someone, "Give me some candy...or I'll BONE you!" Oh Lord...that kid is a hoot.

PS: She doesn't have a UTI (the culture was clean). She is still having near daily abdominal pain and she is down to 4 ounce feeds. I don't know what is going on, but we're going to try the motility meds starting tomorrow. I don't know what else to do for her.

Overheard at bedtime...

2011-10-16T11:44:00.000-05:00

As KayTar and I cuddled in bed, the following conversation took place in whispered tones...

Me: Can I keep you forever?

KayTar: Yes.

(silence)

KayTar: But, I'm going to drive away someday.

(more silence)

KayTar: But, I'll come back...

(more silence)

KayTar: Because I don't plan on buying my own house.

Gosh, this kid makes me laugh.

I think this is what they refer to as "avoidance".

2011-10-14T08:20:00.001-05:00

I could tell you about how KayTar's tummy still isn't doing well, or about how she has had abdominal pains several days in a row, or about how she vomited last night and again this morning and is home with me now so we can try to get her to tolerate clears and then maybe some formula, or about how I snuck into her room last night to pray over her because I'm not just worried about the tummy woes but about what all this might indicate for the future, or about how BubTar asked me this morning if there are other kids who have problems like KayTar and why the doctors can't figure out how to help her better...but instead, I'm just going to post some cute photos. I think that would be more fun for everyone involved. ;)

Afternoon update: KayTar's morning urine was cloudy, so we ran to Walgreen's for some test strips. I tested her urine and it was VERY positive for leukocytes. We went to see the pediatrician and verified that she has a UTI...her very first (that we know of). If I hadn't seen her morning urine (if she had flushed like she should have, LOL), I never would have guessed. She didn't have any typical symptoms, but I hope that once this is cleared up, maybe some of her recent issues will resolve, too. Fingers crossed! I'm actually a little relieved to discover she has *just* an infection! Here's to another round of Suprax.

This weekend was sponsored by...

2011-10-10T20:10:00.000-05:00

Miralax and Underjams.

KayTar has been having some GI issues again. For a couple of weeks now, she's been going several days between bowel movements (which means her constipation is getting out of control) and we've toyed with her Miralax dose, but haven't been able to work things out easily. She has been waffling between liquidy stool and nothing...so this weekend we upped the Miralax and stayed close to the bathroom! KayTar enjoyed some movies and relaxation time in my bed and we got things moving. I think she is all cleaned out now, the tricky part will be finding a dose that keeps things moving from here on out. She actually had fewer accidents this weekend than she normally does, because things were running like clockwork. I'd send her to the toilet after a feed and she'd take care of business. However, we can't keep things THAT loose for long, because she would be losing too much fluid that way. So hopefully we find the right dose for her!

In other GI news, we increased KayTar's feeds last week and it started out well, but she had some post-feed tummy pain a few times and then she vomited up her entire feed Friday night. She said she was too full. It was the first time she has vomited in a good long while (for her anyway) and the increase in formula volume was the only real change. Saturday morning, we went back down to 6 ounces at a time and she's been okay, mostly. She also threw up last night (a few minutes prior to puking, she was crying because she wanted to sleep in my bed for a third night in a row). I couldn't figure out where her puke bowl was in the dark (it was hiding under the bed) so I had to run her to the bathroom and we didn't quite make it all the way. There was a bit of a trail left behind us. Yuck. She seems okay, though...just part of being KayTar, I guess!

I'm a little disappointed that the transition back to 8 ounce feeds was not a success. While 6 ounces at a time is totally workable and much better than 4 ounce feeds, I just don't like that we've lost ground or that we're looking at a new normal for her. Although KayTar has a history of new issues cropping up on her, this is the first time I feel like we're likely seeing a decline in organ function (well, other than her progressive hearing loss). Her reflux and constipation have gotten worse and her volume tolerance has decreased. It is SLIGHT, so slight, but it is still a step in the wrong direction. Her GI doctor did write a prescription for Augmentin to be used as a prokinetic agent (200mg, 4 times daily) to try to get her back up to normal feeds, but I'm torn about starting that at this point. IF this is progression, then we are likely to see more at some point, and if we pull out the big guns now, there won't be many next steps to take LATER when we might be looking at a more significant decline. We can live with five 6 ounce feeds every day. It is a little more inconvenient, but not too much of a change overall. But if in a year or two years or three years, she starts to tolerate less and less volume, I don't want to be out of options. I'm getting ahead of myself, I recognize that, but these long term concerns are a factor in what decisions we make right now. I think at this point, we're going to keep her at 6 ounce feeds for a couple more weeks and maybe attempt another transition. I'm not sure if time will make any difference, but it is the course of action that seems least risky for her right now.

Wordless Wednesday: Happiness is...

2011-10-05T19:45:00.000-05:00

A free nose clamp from the pulmonologist!

Double Header.

2011-10-04T18:12:00.000-05:00

KayTar is doing much better! She is still on Suprax, but she was doing well enough to attempt the day on Thursday. She made it through the day, although her glucose was a bit lower than usual (probably from the extra stress from the pneumonia). Friday was a in-service day, so she had extra time to rest/heal over the weekend. Monday was a totally normal day (right down to the daily headache)!

This zebra art car parked in front of us.

Since it has become clear that it will be months before we get the insurance issues sorted out so she can be seen at the facility that houses her mito doctor, and her soon-to-be geneticist and pulmonologist, we decided to see another pulmonologist in the meantime. Our pediatrician recommended someone (who happened to be the same doc that a friend recommended, too) so I called yesterday to get an appointment and they fit us in today, right after her already scheduled ophthalmology appointment. Perfect! It is so nice when we can take one trip out to the medical center and knock out more than one appointment...especially when we don't have to kill a chunk of time between them.

"Take a picture of how strong I am!"

First up was ophthalmology and the dreaded eye drops. Oh, how she HATES the eye drops! She did pretty well this time, though. Yes, there was screaming, but it was like 5% of her normal eye drop screaming level, so we're putting it in the wins column. Her prescription has changed some since last time, enough to justify new glasses, but not enough to be causing the daily headaches. Drat. He said it is RARELY vision that causes these recurrent headaches, but it is good to rule it out altogether. KayTar got some of those super cool post-dilation shades and we were off to our second stop.

Gloves! She was ecstatic they gave her some!

The pulmonologist seems great. He wasn't dismissive, which is what I was worried about. KayTar isn't a typical kid, even in terms of her systemic dysfunctions, so she needs doctors who can look a little beyond how normal kids function and how normal diseases progress. Those kind of doctors can be hard to come by! I told him about her weird breath-holding breathing pattern (and showed him a video) and told him about the transient desats. First, he started to say that those fingertip pulse oximeters are sometimes in accurate on little kiddos (which I agreed with) and that you really have to pay attention to things like the waveform and heart rate, too...and I politely interrupted to tell him that I had been paying attention to those factors, too, and it seems to be accurate. I had a video of it on my phone, so I showed it to him and he agreed that it seems accurate on all fronts. He doesn't think it is related to the weird breathing (so maybe that IS a tic?), but he thinks the desats are worth looking into. She had a pulmonary function test in the office today, which was good, and she is being scheduled for a sleep study in the near future. He said if it is happening when she is awake, it is probably happening as much or more while she sleeps, so hopefully that will give us some information. He's also going to look at her previous chest films to be sure nothing was missed. I think it is a solid plan and I'm glad we're looking into this a little more closely, it has been a nagging worry for months now.

When all was said and done, KayTar declared it the BEST DAY EVER (she's probably had a couple thousand best days ever by now) because she got disposable sunglasses from the ophthalmologist, and gloves and a nose clamp (from her PFT) from the pulmonologist. She's madly in love with that nose clamp because, "I can finally hold my nose without having to use my hands!" We're very lucky that she is so easy to please. :)

Some days I am too lazy to come up with a title.

2011-09-30T15:40:00.000-05:00

Let's see...where did I leave off? Hmmm...oh yeah, it was Tuesday, she was sick and we were going to see the pediatrician the next day. So that's what we did! Her lungs didn't sound stellar, but there were no obvious crackles yet. Yet being the key word, as this is KayTar's pneumonia pattern. URI that resolves, a couple of days later she has a new onset fever, wet cough...we go to the pediatrician and her lungs sound yucky, but not quite crackling, so we wait and see, and 1-2 days later, we are back in for full-blown pneumonia! So this time, the pediatrician just decided to call it and treat. Generally speaking, I'm not in favor of antibiotics in these iffy cases and prefer to wait it out, but we've been through this enough for me to be pretty sure of where she was heading if we didn't treat. She hasn't had antibiotics since her pneumonia last February, so I was okay with it, as was the pediatrician. So she is on a course of Suprax and using Pulmicort once daily until she's sounding better.

We got her prescriptions filled on Wednesday, we paid $50 for them. On the pamphlets, it said, "Your insurance saved you $303.99 and $603.99." Can you believe that? $908+50=$958...high enough to be rounded to A GRAND! This is why I have a series of small panic attacks every time we resubmit our CHIP paperwork. This was just one illness...a drop in the bucket compared to the overall costs of keeping our girl running!

Speaking of CHIP, our appeal to change health plans was denied. We have to wait until our yearly renewal period to change health plans. Ugh. I'm not happy about this...I really, really want her to be seen by pulmonology. I feel like we've already been sitting on these breathing problems for too long, several more months is not acceptable to me. Not to mention, we are supposed to see the new geneticist in two weeks...and not doing that will delay further testing and our next appointment with her mito doc. I'm not sure what we need to do here, but I'm not really okay with putting it all off for so long. At least we HAVE insurance, though.

At the pediatrician visit, she and I discussed how KayTar's gut issues have been since the last visit. She brought up something I mentioned to her in an email after the GI visit, which was that the GI suggested that it may be disease progression. She said that she thinks of KayTar as a kid who has some challenges and limitations, but she's made such great strides and is always moving upward, so she never thinks of her in those progressive disease terms. She said, "It kind of made me..." and she paused, looked at me with a bit of concern in her eyes, put her hand on her heart, and frowned a little..."to think of her like that." It was one of those moments where I thought, "Gosh, we're lucky to have a doctor so invested in our girl." and "That is the kind of doctor I want to be." all at the same time. A lot of things are uncertain in life with KayTar, but it is much easier to handle with wonderful people on her team.

- Posted using BlogPress from my iPad

Commencing Parade of Pathogens...

2011-09-27T17:41:00.000-05:00

Well, it happened. The first fever of the school year has arrived at Casa del 'Tars. I posted the following status update on Friday afternoon:

Katie has made it through a MONTH of school without missing any days due to illness (knock on wood! she's fighting a little viral thing right now, but no fever), we've got her up to 6 ounce tube feedings now, and she is still eating more overall! :)

So, OF COURSE, she spiked a fever less than 24 hours later. She ran a fever on and off all day Saturday and needed breathing treatments through the weekend. She got strangely spinny/wobbly on Saturday night with no obvious cause (glucose and ketones were fine, O2 sats seemed in her normal range), but on Sunday the fever was gone and she was making improvements. I kept her home Monday because she wasn't up to school yet, but she had been fever-free for 2 days. Then last night/this morning at 3am, she started shouting that she couldn't sleep, so I went to her room to give her the "It is the middle of the night, so you need to try to sleep a while longer." speech, but then she started coughing and it sounded terrible. I grabbed my stethoscope to give her a listen and when I touched her, I knew her fever was back. I verified that with the thermometer and then set her up with her nebulizer and cartoons. Needless to say, she stayed home today. Tomorrow, we have an appointment with the pediatrician to make sure her little URI hasn't made the leap to pneumonia.

****

It isn't all yucky sickness around here, though...here are a few KayTar gems from the past few days:

"If I'm ever President, I'm going to invite you to sleep in Lincoln's bedroom so you can find out if it is really haunted. I am NOT going in there."

"When you really think about it, the letter w looks like little butt cheeks."

And then today, she was arguing with herself in the mirror, "Stop copying everything I'm doing! AND your shirt is written BACKWARDS!"

You're welcome. ;)

Mitochondrial Awareness Week

2011-09-21T19:09:00.000-05:00

If we're Facebook friends, you probably already know it is Mitochondrial Disease Awareness Week! Although KayTar has not been diagnosed with this disease...she has many symptoms in common with this condition and may one day be diagnosed with it. Regardless of whether she does or does not have this particular disease, awareness still needs to be generated because all of the precious kiddos that do have mitochondrial disease need a cure (whether my girl is one of them or not!). Most people never hear about mitochondrial disease unless their child is being tested for it or is diagnosed with it!

Mitochondrial disease affects roughly 1 in 3000-4000 children, in comparison the incidence of childhood cancers is 1-2 in 10,000 and the incidence of cystic fibrosis is 1 in 3500. Although mito has a similar incidence of these two diseases, it is much less well-known!

Mitochondrial disease is caused by a defect in the mitochondria in cells. Mitochondria are the organelles that convert the nutrients in your body into ATP, which is the energy it uses to power your cells. As cells run out of energy or run on less than optimal amounts of energy, organs begin to show signs of damage. Mitochondria also have specialized functions in different cells in the body, so when they are not functioning properly, it affects some tissues in more profound ways.

Mitochondrial disease is incredibly hard to recognize even for physicians, not only because it is not as well-known as other conditions, but also because of the huge variation of symptoms. Even within the same family, with the same genetic defect, children present in very different ways. Click here to see a list of the possible symptoms of mitochondrial disease. They say to think mito when 3 or more different organ/systems are affected by an undiagnosed disease.

There is no single test that can diagnose or rule out mitochondrial disease with certainty across all cases. Laboratory tests, imaging studies, and even muscle biopsies often only give part of the answer. Diagnosing mitochondrial disease is like putting together a puzzle, but most physicians are not equipped to recognize that the pieces all belong to the same puzzle! Often pieces of the puzzle are parceled out to various specialists and no one looks at them all collectively. There are only a handful of mitochondrial specialists in the US and it takes most people years to be properly diagnosed.

For a first hand perspective on life with mitochondrial disease (and more great info!), visit some of our blog-friends:
Life with The Ferrells
Life with Jack
Bricen's Way
Our Exceptional Life
Mito Life Window

Weekend Update

2011-09-17T12:23:00.000-05:00

The Gas Fiasco
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)

KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!

Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in writing...now we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!

KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!

KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.

The GI Plan.

2011-09-14T16:09:00.000-05:00

KayTar had her follow-up appointment with her gastroenterologist yesterday. Dr. R is one of my favorite doctors and not JUST because she has let me shadow her service before! She is always interested in KayTar as a whole child, not just a GI tract. She talks with both of us and even allows KayTar to have a bit of stage time to tell jokes/do impressions or whatever she happens to think up. I have never felt rushed in one of these visits, which was especially appreciated this time as we had a bit more to discuss than usual, since KayTar's GI system has been the biggest troublemaker lately.

First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.

Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.

Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!

Completely unrelated photo ;)

Still no gas...

2011-09-13T09:55:00.002-05:00

I spent Friday at the house, waiting in vain for the city inspector and plumber to come by. We paid the plumber $300 on 9/1/11 to pull the permit and had absolutely nothing to show for it. On Tuesday, 9/6/11, the city inspector came by, but the plumber did not call us to notify us so someone could be here. The city inspector left a sticker to show that he had been there and that the plumbing company needed to reschedule. All week long, Josh had been placing calls to get someone to come back out and so the inspection so we could get work started. Friday was more of the same. I decided that if Josh's frequent calls were not enough, they needed to hear from me, too, so I started calling around noon. I was PROMISED someone would be out between 1 and 4pm. I told the customer service rep that I generally pick my kids up within that window and he told me to make other arrangements because someone would be coming by for sure. I left a note on the door when I left and picked the kids up in the office to save time. NO ONE CAME. I called the plumber back to complain and was promised a call back and never got one.

I had to cancel KayTar's pulmonology appointment yesterday (long story for another day), but since I had planned to miss class, I stayed home anyway. KayTar's feeding pump was in need of service, so I stayed here to get the pump taken care of and to wait for someone from the city/plumbing company to get the inspection done. I kept the pump at home with me, because I didn't know exactly when the tech would come by, so after I got an ETA from the company, I left the house for 30 minutes to bring it to KayTar's school so she could get her feed and I could then bring it home to be serviced. I left a note on the door saying, "HHCName/PlumberName/City of CityName, if no one is home call CellNumber. Will be right back!" When I got home, there was a sticker from the city on the note...but no one had called me. AGH! So Josh got on the phone again with the plumbing company and raised some hell. They assured him someone would come back out after 12:30, so I made plans to stay home for the rest of the day.

At 2pm, a city inspector arrived and said, "Yes, I'm here to do an annual foster home inspection..." I didn't even realize what he said at first, I was just so happy to see him! I brought him to the backyard and he said, "Is this a foster home?" I said, "No? This is a residential home with a broken gas line." He said, "I am here to do an annual inspection for a foster home." WHAT?! The stupid plumbing company had pulled the wrong permit, in fact, NO INSPECTION NEEDED TO BE DONE until after the work was completed. This was maddening, because we asked the plumbing company how the city was going to inspect/test a clearly broken gas line, but they kept telling us it had to be done. So absolutely nothing has been done because we have been waiting on this supposedly mandatory inspection. The city inspector was nice and helpful and pretty disgusted by the apparent idiocy of the plumbing company. He went ahead and looked at our in-house gas apparatus to be sure it was up to code so we wouldn't face another delay after the work is completed...and it wasn't up to code. Of course. We need all new valves, too. At least we know on the front side, though, I can only imagine how long it would have taken if we found out about it after the rest of the work was done. He left a business card, as well as detailed notes on what needed to be done and told me how to get the permit switched, in case we wanted to choose another more competent plumber to do the work. He was the first competent person we have spoken to about this whole mess in the 12 days we have been without gas.

Yesterday evening, the plumbing company sent someone new out to look at what needed to be done. They blamed the error with the permit and delay on the person they sent out to do the original quote. Whatever. You would THINK that in the 12 days we have been calling and asking for assistance and complaining about the lack of work, someone would have actually bothered to read the notes on our order and realize it was a broken gas line and an error had been made! The new guy gave us a new quote...SIX GRAND to replace the line. The first guy they sent out said it would be $300 for the permit and $200 for the work. First, they pull the WRONG permit and now we were being told SIX GRAND for the work?! The other option was basically a patch job with no warranty for $2300. They needed half of the payment up front, too. We are not the type of people to have thousands of dollars lying around waiting for something like this...we are the type of people who have two kids at home...who have had to take a pay cut to qualify for the ONLY insurance that will cover our child with complex medical needs...who are both university students...and who have one job between the two of them. We do fine, I'm definitely not complaining, but we don't have piles of money lying around, unfortunately. I suggested to Josh that it wouldn't hurt to look around a little, because it isn't like anything was happening QUICKLY to resolve this. We were both a little dumbfounded about it all and I griped on Facebook, as I am prone to do, and a friend saw it and put us in contact with a plumber they know from church. He told them to have Josh call last night (even though it was 9pm) and he seemed intelligent, helpful, competent, and told us he could come out this morning between 8:30-8:45am (a fifteen minute window!) to look at what needed to be done. He came by this morning, inside the time window he gave us, and quoted us a price for a total line replacement and new valves that was less than the patch job we were quoted last night. He will have diggers out here tomorrow morning to get this going and we will not need to be here until he is doing the indoor work and the inspector needs to come back. He will keep us posted so we can plan on when we need to be here, and we can reach him personally via cell phone, if needed. It still isn't going to be a cheap fix, but I feel a million times better paying this guy for the work than I would have paying the original company. We may actually have a stove, oven, and hot water by the end of the week...fingers crossed!

The moral of the story is that the John Moore jingle did ring true in our experience. If you call John...you do get Moore...more headaches, more waiting, more debt, and more incompetence. Learn from our mistakes...even when there is a seemingly emergent situation, do not just go with the first name/company you know in the field. Shop around. If we had gotten multiple quotes when this first happened, we'd probably have gas by now.

Disclaimer: This post is meant to relate my personal experiences and opinion, it is not intended to malign any organization, company, or individual.

Edited to add: John Moore did release the permit like we asked, so we didn't have to file paperwork with city hall. They also refunded us the $300 we paid for the permit to be pulled originally. So we lost 12 days to this fiasco, but at least we didn't lose any additional money!

To Do:

2011-09-09T08:50:00.001-05:00

Cal I -> 1.1-1.4 (by Wednesday)

Medical Writing -> Read chapters 1 and 2 in The Complete Guide to Medical Writing (quiz 9/15)

HIST -> Review chapters 17-21 for exam (either 9/15 or 9/20)

POLS -> Read pgs. 354-62, 367-86, 401-16; make cheat sheets (exam 9/14)

CSP -> Call zoo RE: group volunteering; read pgs. 7-122 in Service Learning; read pgs. 219-245 in Navigating Research; post to discussion threads for chapters

Personal -> Call pulmonologist RE: visit cost as self-pay; call insurance RE: reimbursement policy; do income verification check for insurance; call HHC RE: pump servicing and coverage under possible new plan, call HHS RE: switching plans; call possible new plan RE: coverage of therapies and DME

Drudgery -> Laundry; waiting for the city to come inspect the gas line so the plumber can start work on it (yes, STILL NO GAS HERE!)

What are you up to today?

Following Up.

2011-09-07T08:03:00.000-05:00

Today was KayTar's follow up with her mitochondrial specialist. It wouldn't be a visit to that particular clinic without a little insurance drama, so at check in they told me AGAIN that they don't take our insurance and I explained AGAIN that the doctor is in network for our insurance and we have seen her successfully before and our insurance has paid for it. She called billing and said that we would have to pay for the visit out of pocket and then file for reimbursement...it is never awesome to hear you are going to have to pay 300-400 dollars our of pocket as a surprise, but we didn't want to back out of the visit at that point, so I agreed. I have no doubt my insurance will pay as I've called them about 15 times about this situation and they always, always insist the doctor is IN NETWORK and needs no further authorization. It is a very frustrating situation, but hey...a few years ago we didn't even have insurance to get frustrated about, so I know it could be much worse than this. And the truth is that insurance is more than willing to pay, the clinic just doesn't seem to want to do the legwork.

On to the actual follow-up part of the appointment...R came with us again, in case KayTar needed a little attention while I was talking to the doctor, but it was unnecessary (but fun to have her company, as always) as KayTar was completely entertained with the two brain models that were in our room, along with a clear plexiglass head to put them in. She pretended to do brain transplants for most of the visit. At one point she changed from a brain surgeon into a zombie and cut the brain into "brain pie" and served it up to us from the head/bowl. So many fun things to do with brains! She really, really wants her own model brains (and tuning fork) now. As for the medical part of the visit, KayTar's labs came back within normal limits and her MRI was read as normal, too. I'm somewhat confused about the MRI as she has had 2 previous MRIs that were abnormal. I'm not complaining about a normal brain, but I'm not really sure how it went from abnormal to normal. She hadn't looked over her previous films (she didn't realize she had them), so she couldn't really explain it to me. She did say that certain metabolic diseases can present with brain abnormalities that later normalize. Also, two vials of KayTar's blood from last time was lost, so we had to re-draw labs for the acyl-carnitine panel and glycosylated tranferrin panels. KayTar was not a fan of the lab work, BUT the tech got it in one stick, so I was pretty pleased. The doctor said she is not going to diagnose her with mitochondrial disease because in looking through KayTar's medical files, she thinks that KayTar may have a treatable metabolic disease and she isn't ready to stop looking at this point. After mitochondrial disease is diagnosed, the search is off and we're not there yet. I nodded my head and said, "Yeah, okay." and she said, "Wow, you took that better than I thought." I guess some people come in there really looking for a diagnosis and take it hard when it isn't there right away....or maybe she is secretly reading my blog (yeah, right) and knows how much I want an answer for all of this. Yes, I'm looking for a diagnosis, I practically dream about it...BUT I want the right diagnosis when all is said and done. We started seeing this doctor because we were told she is the kind of doctor who cares about finding the right answer, whether it is mito or something else, and thinks a diagnosis is important. In our experience, many doctors don't feel this way, so I'm glad that she is committed to helping us figure it out, regardless of what the ultimate outcome is. She is referring us to a metabolic geneticist that she works with regularly and after we see her, the two of them will formulate a plan together...it will likely include another fasting study which is my absolute least favorite test of all time. I wonder if *I* can be sedated for this one. ;)

After the appointment, M (who is my savior in this clinic, she has been so patient and helpful through all of this which allowed me to keep my sanity!) came in and said we didn't have to pay up front, because she told billing they had to bill my insurance, because we already have proof they will pay. She told them that they either need to get their doctors pulled out of our plan so we can apply for out-of-network care or just agree to bill the insurance. Yay! But then I came home to a message about KayTar's pulmonology visit next week at the same facility...they said if we don't self-pay up front for the visit, they won't see us. The same goes for further appointments with the doctor we saw today. Since the metabolic geneticist we are being referred to also works out of this office, I'm sure the same goes for her. AGH! It took over an hour to get KayTar's pulmonology visit scheduled because the schedulers were insistent that they do not take our insurance...so I know the same will happen when I call to get her in with the geneticist. All of these doctors are in our provider directory, but that office just doesn't want to deal with our insurance because the clinic is not contracted with our plan. So now we are looking at possibly switching plans to see if we can get both our hospitals and all of KayTar's medical team covered, which span the two different hospitals and affiliations with two different medical schools...but I'm a little scared to switch based on a provider directory, as I've learned just how WRONG they can be! All of KayTar's doctors are listed in our current directory, but we are still having major issues with it. It doesn't really seem right that if insurance is willing to pay, the clinic can still keep us from being seen, but it seems there is little that I can do about it. I guess I should look at it as a learning experience, because by the time I am on the provider side of the medical billing process, I'm going to know more than I ever wanted to know about things like this!

It must be Community Helpers week.

2011-09-02T10:24:00.000-05:00

On Monday, I found out my credit card had been cloned. Awesome, right? Last week, I tried to buy something in the school bookstore and my card was declined. No big deal...our credit union card is notoriously bad at not scanning correctly. Later in the day, I tried to get lunch at Smoothie King and the card was declined again. I called Josh to be sure there was money in the account and there was plenty. The next day, I tried to get gas and the pump gave me attitude about going in to see the cashier. I was alone, so I did...and the charge went through just fine from inside. I chalked it up to another bad scan. I bought groceries this weekend without issue. Then on the way to the GES on Monday, I stopped for gas. It didn't take my card again, but I had KayTar with me so I just paid with a different card. Then in the parking garage it didn't take my card, but that one only takes my card once out of every 15 scans...so it wasn't odd. Then we stopped at McD's for breakfast on the way home and my card didn't work. I had them try a second time...no dice. So I called Josh, who called the bank, who told him my card had been used in Ohio last week and was shut down due to suspicious activity. Oy. How did I not notice it?! Because I usually use debit and that was working fine, only the credit section had been locked down. So places that auto-run it as credit were the places that it was being declined. When I went into the gas station, I paid with debit. When I bought groceries, it was debit....and so forth. Monday night we had to go to the police department and file a report so the bank will give us our money back. Thankfully, they didn't go wild with it, because our financial aid had just been deposited and they sure could have done some damage. Instead they spent $70-something at a feed store and $6-something at Walgreens. Big spenders!

Yesterday, on the heels of an already rough afternoon involving my asthma/traffic/nearly running out of gas/being late to pick up the kids, we walked into the house after school and I thought I smelled gas. I called Josh, who is out of town and couldn't be of much assistance, and then called my dad. He came right over and said he didn't really smell anything, but he checked the gas outlets in the house and then headed to the backyard. He came back in and said, "Grab the kids and their stuff and get outside." YIKES. We had a major leak back there, the drought has caused the ground to shift and it pulled the gas line completely away from the pipe that goes into the house and gas was just pouring out. My dad backed his truck out of the driveway and took the kids to sit in it while I frantically grabbed important KayTar things like her pump bag, feeding bags, and formula. I went to sit with him while my dad unhooked my garage door from the automatic opener and backed my van out. I tried called our gas company while my dad called the fire department. It took me forever to get a REAL PERSON on the phone and then they kept passing me around. Finally, in a loud and exasperated voice said, "I HAVE A MAJOR GAS LEAK AT MY HOUSE AND NO ONE WILL TALK TO ME!" She apologized and took my information, but by that time the fire department was already pulling up. My dad told me the fire department had reported it already. I guess the gas company will actually take calls from the fire department! I begged my dad to run in for KayTar's blankey as she was getting hysterical about it being in the house. As we were sitting in the car, our cat Peanut ran in the house and poor BubTar started crying. I went and brought the cat out, but our guinea pig, dog, and snake were still inside and BubTar was so worried about them. I tried to reassure him that the firemen were taking care of the problem and the animals should be fine, but I was going through a few list of things that I desperately wanted out of the house in case it was all going to go KA-BOOM at any moment, so my reassurances were probably a little strained. Evidently my internal list of priorities is: the kids, KayTar's feeding pump and formula, KayTar's blankey, the animals, alllllll of our photos from my hard drive, KayTar's meds, and my camera. The fire department shut off the gas and checked the house for gas levels and we got the all clear. WHEW. The gas guy arrived and took our meter away. We have to have new piping laid from the fence where the meter is to the back wall of the house where the pipe comes out of the ground and enters the house. The plumber said that they have to pull a permit before starting work, so hopefully it will get done later today and we will have gas restored in a day or two. It was frustrating and a little frightening, but it could have been worse. KayTar flipped the lights on before I smelled the gas (which is a no no) and I just cringe to think what could have happened! We are all safe and sound, though, and very thankful things played out the way they did.

But seriously, if we could get through the rest of the week without any additional run-ins with community helpers, I'd be pretty pleased.

Gastric Emptying Scan

2011-08-29T20:55:00.000-05:00

KayTar had her gastric emptying scan today, or as she describes it, "I was taped to a table and shoved in a machine FOR HOURS!"

She was NOT a fan of being restrained. She let out a few peals of her patented, eardrum-rupturing KayTar screams as they taped her down, but she calmed pretty quickly with some help from Spongebob on the monitor. She couldn't use her hands, though, so I had to do things like rub her eyes or scratch her nose or wipe her tears. :( We rigged up her Gee so she could rub her lips on it as needed for comfort. Once she resigned herself to her fate, which happened fairly quick, it was an easy enough test.

We didn't get any results at the appointment, but our fabulous pediatrician called me with them this afternoon. A normal result is half-emptying in 60 minutes, KayTar half-emptied in 73 minutes, which is only slightly longer than normal. However, she was only given 3 ounces...so it took 73 minutes to empty out 1.5 ounces, which seems like a long time to move such a little amount. We've never done one of these before and the pediatrician doesn't have much experience interpreting the results, so she can't say if the rate of emptying is volume specific or stable across the board...so I don't know what to make of it until we see her GI on the 13th. These tests are the sort you take with a grain of salt anyway, so we'll see what her thoughts are before changing things up. For the time being, her 4 ounce feeds every 2 hours seem to be well-tolerated so we're sticking with it. Oh, and they saw her refluxing again in this scan, too. We may need to add in another medication to help control that. I'm on pins and needles for her appointments the next few weeks; we follow up with her mito doc next Tuesday, have our first visit with pulmonary the following Monday, and follow up with GI the day after that. Here's hoping we learn something new and useful from all of this testing!

Making Play-Dough!

2011-08-28T17:09:00.000-05:00

Last Sunday, KayTar and I made some pink play-dough with an online recipe a friend shared with me. I'm not a crafty-type, but it seemed simple enough. The hardest part of the whole thing was finding cream of tartar! I seriously couldn't find it in the store, so I just stole/borrowed a little from my mom's pantry. Making it was so simple (we made some purple today!), and the play-dough was so soft and fun, I thought I would share the recipe here! You get a pretty good yield from just one batch (it fills two of these little tupperware containers).

1 cup flour
1 cup water
1/4 cup salt
1 tbsp vegetable oil
2 tsp. cream of tartar
And the food coloring of your choice!

Put it all into a pot and stir it together, then cook it over medium heat until it globs together.

Once it congeals, drop it out onto wax paper to cool, then knead it a few times as it cools.

Once it cools, it is ready to be stored or played with!

I hope you enjoy it as much as we have! :)

Letter to the Teacher, 2011 edition

2011-08-26T08:16:00.000-05:00

Hi! My name is KayTar. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.

I am an excellent reader. I usually read 1 chapter book every 2 days, so I will be taking a lot of AR tests and checking out a lot of library books this year. I learn very well from written word, especially because I don't always hear verbal words or instructions as well. When I watch TV at home, I like the captions to be on, so I can follow what is happening. I think it would help me a lot if my reading skills were used in class to help me keep up with what is happening in our room! Sometimes I get distracted or forget what I am supposed to be doing, so my other teachers have provided written instructions for classroom tasks and schedules and it helps me a lot.

****

I can't hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don't hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy. This is another reason it helps me to have written instructions.

****

I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.

****

I am a little slower than my friends and I get tired easily if we are walking long distances so I might need extra help. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I often have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens. My doctors think I have a disease that causes me to be weaker than my friends and causes me to run out energy much quicker than they do. It may seem like I am being lazy at times, but my body just cannot always keep up. Because the muscles in my hands get fatigued and weaken easily, I am supposed to trial a word processor to help me with writing work. If I get very run down or tired, I may need to rest in the nurse's office or have my glucose checked. The nurse is very familiar with my medical needs. I get tired much quicker when I'm even a little bit sick and there may be times I need to sit out of PE during the year. If I ever complain of being dizzy or wobbly or say my legs aren't working, I need to see the nurse right away.

****

I am very sensitive to heat and cannot be outside for very long in the heat of the summer months. While it is so hot out, I may not do so well during recess if it is in the afternoon. Sometimes being out in the heat causes me to run a fever, even if I'm not sick. If I am having trouble with the heat at recess, I may need a quiet indoor activity while my class is outdoors.

****

Some days throughout the year, I am very light sensitive and can't bear to be out in the sunlight. I have magic lenses in my glasses to help, but some days they don't help enough. If my friends are going outside and the sunlight is bothering me a lot, I might need to go sit in the nurse's office or with another class while my friends play outside. Other days it doesn't bother me as much and I enjoy playing outside with my friends very much!

****

I get migraine headaches and if I ever complain of head or eye pains, or changes to my vision, send me to the nurse immediately for medication, even if it doesn't seem to be keeping me from participating. It is important I get my medicine at the beginning, so they do not get much worse.

****

I have asthma and if you notice me coughing a lot or coughing so hard that I gag/vomit, I need to be given 4 puffs from my Albuterol inhaler with my yellow spacer mask.

****

I don't like to eat much, so at lunch or snack time I might choose not to eat. My mom will send something that I like every day, just in case. The textures of some foods might make me gag, either by sight or touch. I try my best not to touch these foods or get too close, so if I ball up my hands or say "No!" it means it is probably the kind of texture that will make me gag. If it gets too close to me I might push it away from me to protect myself. Sometimes just thinking about these things might make me feel sick. I have a g-button and a special feeding backpack that give me all the things I need to be strong and healthy. I also need the nurse to check my glucose to be sure my body is getting enough of what it needs. There are times when my tummy just doesn't work right and I vomit even when I'm not sick. The nurse knows how to help me and will call my mom if she thinks I may need to go home, but many times I finish the school day even if my tummy is acting funny.

****

My lips and tongue have gotten VERY big a few times and my doctors aren't sure why this happens, if you notice my lips swelling, or if I say, "My tongue hurts." it means I'm having an allergic reaction. Take me to see the nurse immediately. I need to have 1.5 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.

****

My colon doesn't work quite right and I have to take medicine to help it out, because of this, sometimes I have potty accidents. The nurse will have supplies to handle this if it is an issue. At bathroom breaks, it might help if you reminded me to try to use the bathroom even when I say I don't need to. I may need to wear pull-ups some days when I am having some trouble with this.

****

I'm so excited to be in school this year and I know I will have lots of fun in your class!

Your new student,

KayTar

****

If you've read the previous years of her Letter to the Teacher (2008, 2009, 2010), you may notice that we took her neurological episodes off altogether this year. It has been over TWO YEARS since she has had one. Whoa. The letter may be growing a little every year, but it still feels good to cross that one off.

First day of school...

2011-08-23T22:03:00.001-05:00

FOR THEM!

Today was a very good day, but I'm exhausted, so I'm going to do this list style.

1. They both liked their teachers. BubTar is in class with a few kids from last year and/or the year before and KayTar has a handful of her Kindergarten pals in her class.

2. KayTar wore her pump backpack from 9:30 to 1:30ish and did really well with it. Though, when the nurse came to take it off, she said "It's KILLING ME." Such drama.

3. Her energy was really great today. She woke up on her own this morning, she was perky when I had lunch with her, and she had enough energy this evening to go visit her "teenage friends". That was a great first day of school treat for her (and for me!).

4. She told the "hot intern" that he is hot. I said, "KayTar! I told you not to flirt!" and she said, "It isn't flirting. It's TRUE!" I don't know what I'm going to do with that girlie! To be fair, last year she noticed that the female librarian was wearing a new lip gloss and told me "She looked like a HOT LADY today!"...so she isn't entirely boy crazy, she just likes to take note of attractiveness. LOL. She is a *little* boy crazy, though.

5. BubTar is officially too cool to have lunch with me in the cafeteria. He did let me kiss him on the cheek, though, before I left after eating with KayTar.

6. Our school nurse is super amazing. KayTar left her glucometer in the office and the nurse drove it by our house this evening! There are a lot of reasons she is amazing, but that is one example. She really takes exceptional care of KayTar at school!

So, one (good!) day down....a whole lot more to go!

Goobers.

This speaks volumes about their personalities.

My beautiful FIRST grader!

My handsome FOURTH grader!

This is his "Mom, please stop embarrassing me." face

My cute little lady settled at her desk!

First day of school...

2011-08-22T22:48:00.001-05:00

FOR ME!

Here is the big takeaway message from today. It is HOT in Houston, like miserable, sweltering, entertain-the-idea-of-jumping-in-front-of-a-car-on-the-walk-from-the-parking-lot-because-the-ambulance-that-came-to-get-me-would-have-air-conditioning HOT. 22 record-breaking consecutive days of 100+ weather (that is without adding the heat index), with a forecast of the same for the rest of the week. BLURG. Unfortunately, this semester I did not get a spot in the parking garage, so I had to park in the lot...which is farther away. Walking from the garage last year was far enough for me, because it involved an uphill walk with a bag full of books. The lot is farther, and the walk is even LONGER because they are doing gobs of construction on the streets near the campus. So, the walk over the river (bayou) and through the woods (other parking lots and construction sites) up to the bookstore was long/hot enough. Then I got to walk back down the hill/through the maze with 6 college textbooks in hand, all the way back to the parking lot, before heading back out to the building my class was in. It was miserable. The humidity was oppressive and the wind was non-existent. I think I live in the wrong state! I was born in Alaska and I think my biological thermostat was meant to run a little bit cooler than this.

My first class was Calculus, taught by Dr. Pepper. No joke! My professor's name is Dr. Pepper. He seemed like a nice, even tempered guy with realistic expectations. The homework will NOT be online (hallelujah, I really, really hated the interface for the online PreCal homework last semester) and it will not be graded/mandatory unless we really do badly on the first test, then he'll start taking completion grades. 2-3 exams, 1 final, 5-10 quizzes with the easier questions from the sections. Sounds doable. We took a Algebra review pretest, which I do not think I did awesome on...but it isn't for a grade, so that is okay. After Cal, I walked waaaay up the hill again to the other building for Govt II. The professor reminded me just a wee bit of a leprechaun, and he is definitely a talker. We spent the entire class period going over the syllabus!

After that was over (and after the looong, sweltering walk back to my hot-enough-to-melt-crayons* car), I picked up the kids and headed to Meet the Teacher. We bought their supplies from the PTA, because it is a million times easier than tracking the items down, and dropped them by the classes. BubTar's teacher seems great (and I've heard great things about her), the kids met their new SLP and librarian (who gave the kids books, I think she knows the way to their hearts), talked with the nurse, and visited KayTar's classroom, although her teacher wasn't there due to a family matter. I think we are ALL ready for tomorrow! The good news is that I have no classes tomorrow, so I'll be around to help with any issues that might come up as we work out the first day kinks. I was supposed to be in class tomorrow, but I was taking that section for a specific professor and she emailed me tonight to say she got switched to a different section...so I searched for an online class at Josh's suggestion and found one! Now I'm only in classes 3 days a week. :) I was going to be missing a lot of that class due to KayTar's already scheduled appointments, so it really worked out well in the end. I just hope the professor isn't too demanding, that is always the risk with online classes. Honestly, I'm pretty thrilled not to have to walk to campus in the heat again tomorrow!

*Not just a figure of speech.

Tune in tomorrow for the rest of the 'Tars first day stories...theirs will include cute pictures, too!

Doing Better!

2011-08-20T17:20:00.000-05:00

Yesterday was rough, at least at the start. In spite of me getting up at 2am to re-dose her with Zofran and again at 3am to give her fluids...she woke up with a glucose of 55. That is NOT what we want to see! Her glucose was very sluggish to respond, but she was tolerating clears by g-tube, so we kept at it and it started to come up. She needed Zofran through the day, but in the afternoon we were able to get her back on formula rather than just clears. In the evening, we trialed her off of Zofran. It started well, but about an hour and a half after her dose would have been due, she started complaining of a "hurricane in [her] belly", so we gave her a dose and went back to clears for a bit. She only urinated once yesterday, but we got in 30 ounces of fluid...so by bedtime, things were looking up. This morning she woke up with a glucose of 84, MUCH better! She's off Zofran and back to normal (well, her new level of normal) feeds. Yay! Oh, and I was pleasantly surprised to get an email last night from someone in her mito doc's office to check on how things went with the MRI. I'm sure she wasn't expecting anything to be amiss and got more of an answer than she was expecting, but it was nice for her to think of KayTar, especially when she wasn't even in the office! Note to self: If I can't be the kind of doctor who has gobs of time to communicate with all my patients personally, at least be the kind of doctor who has a super awesome staff. It makes a HUGE difference in how cared for a patient/family feels.

I'm still not sure what happened. She's been under anesthesia many times prior to this test and she has never reacted this way. Our pediatrician is going to request the list of medications and fluids that she was given, so we can figure it out. The only thing I know she was given was lactated ringer, which is contraindicated in mito/metabolic disease patients due to the risk of metabolic/lactic acidosis. She isn't diagnosed with anything specific, soooo I didn't speak up when I saw them hook her up...maybe I should have. Hindsight and all of that. It may not be related to that at all, though. Hopefully we can determine what the cause was an avoid this in the future. The other issue is that she has been in a bit of a decline right now anyway, so perhaps that fasting was just too much for her at this time. Not knowing what exactly happened makes me a wee bit nervous about the fasting for her gastric emptying scan on the 29th!

I'm also a little nervous about school starting this week (has summer flown by or what?!). Classes start for Josh and I on Monday (Calculus, agh!) and the kids start on Tuesday. First and fourth grades! My BubTar is in his last year of elementary. How does this happen?! I know KayTar will be in great hands at school; I met with the nurse, new librarian, her teacher and intern (a male intern, and KayTar's first question about him was "Is he HOT?" He is young and handsome, so I told her yes, but followed it with "No flirting with teachers!" and she said, "Well, I can flirt in my mind." Oh Lordy.) , on Wednesday to go over the plan...which is less of a plan and more of playing it by ear. She will be trying to wear her pump backpack all day now, because of her frequent feeds and I have no idea how it will go. I hope she transitions back to school well, but if we do hit any bumps that need to be ironed out, I know that she has a very capable team to help figure it all out.

Can you believe this tiny little thing has grown up into a big first grader?!
She was about 3.5 here.

She saw me looking through these old photos and said,
"Oh my gosh! That's my first jumper! And my first hearing aid! You took pictures?"
LOL. Of course I did, kiddo!

One of those days!

2011-08-18T16:00:00.002-05:00

It is 3:30 in the afternoon and I've been awake for 12 hours already. Yeah, it has been quite a day!

Yesterday, the hospital called me and told me that KayTar's MRI slot was 5:30am. With the hospital about an hour away, and KayTar having to be totally NPO at 4am, I had to be up by 3:30am. I *almost* overslept as my alarm didn't go off, but KayTar slept with me last night and started talking in her sleep at exactly the right time to get us out the door on time. When we arrived, there was no one in the surgery area except for another mom/daughter duo. Someone came in around 5:45 and told us that they open LATE on Thursdays, so nobody would be there for a while. Uhh? Why did we both get a 5:30 time slot if nobody was going to be there that early?! They took us back to the PACU pretty quickly, but it was between 9:30 and 10:00 before she ever went to imaging. She was pretty anxious and teared up a few times during the wait, she was scared they would use the mask to sedate her and even though everyone promised her they wouldn't, she couldn't quite get over it. The saddest one was when she said, "But why do I need this test? What is wrong with me?!" I think she is getting to the age where she wants a reason for these things and we can't always provide them, being in the dark as we are. Luckily there is wifi in the hospital and we were able to stream some Phineas and Ferb from Netflix via the iPad to keep her distracted for most of it.

A girl and her (MY) iPad.

The light fixture in her PACU room.
She said they chose butterflies just for her.

We got to be bracelet buddies.

Lidocaine patches are AMAZING!
Our normal hospital doesn't use them, but wow, did they work!

She was in the scanner for about an hour, during which I obtained coffee and a pastry and entertained myself by watching The Office on my iPad. 3 episodes later and I was called back to recovery! She was already awake when I got there, but she was feeling super loopy. At one point she started slapping herself in the face and when I asked her what she was doing, she said, "I'm feeling too woozy!" I convinced her that resting a little would be more effective than slapping herself to attention. She drank a little water and fell back to sleep for a while. The entire time she was in recovery, her monitors were alarming. It was almost continual bradycardia/low HR. She came around and said she felt like she was going to puke, so they ordered some IV zofran. We waited a while and they had me tube her 2 ounces of Pedialyte. Everything seemed fairly okay, so we were discharged around noon.

Shortly after getting home, she vomited up 150cc's of fluid. 60cc's of Pedialyte and the rest was the water she drank for me. UH OH. Puking with zofran on board after fasting for so many hours is bad news for our girl! Her glucose was okay then, 77, but I emailed the pediatrician to be safe. She told us to give her 15ml of Gatorade every 30 minutes. I did that successfully 3 times, but after the last time, she got gaggy and said she was going to throw up. She didn't, but we're walking a fine line here. We're going to wait an hour between fluids this time to try to avoid more vomiting. Her glucose is down to 71, which is still fine...but trending the wrong direction. Hopefully, she will turn a corner soon and we'll be able to give her the fluids she needs! After waking up at 3:30, a trip back to the hospital sounds like even less fun than usual!

PS: Things were touch and go for a while today, her glucose was dropping (61) and she started feeling queasy ever with the tiny amount of Gatorade we were giving. She hadn't peed since 6am or so. However, she ate an entire Popsicle--first time ever--and her glucose started responding (114) and she peed (high ketones). She had another dose of Zofran shortly after, and I ran in 2 ounces just a few minutes ago. I really hope she's on the other side of this now and we make it through the night and morning just fine. It looks like I'll be short on sleep again tonight, making sure she gets her fluids!

My kind of camping trip!

2011-08-14T22:09:00.000-05:00

This weekend the boys had a camping trip with BubTar's cub scout pack at a water park we vacationed at a couple of summers ago. The scouts were tent camping, but originally KayTar and I planned to go along and stay in a delightful air-conditioned cabin with electricity, water, and CABLE TV. She doesn't do well in heat and let's be honest, neither do I. I was born in Alaska and my biological thermostat was calibrated to a much cooler set of temperatures. Well, by the time the boys set the dates for their trip, all the cabins were booked up. I knew KayTar would be pretty disappointed to miss out on the water park if she had nothing else to look forward to, so we made plans for our own camping trip, Troop Beverly Hills style...at a nice hotel downtown near a very fun park! ;) We got a great rate on Expedia and only spent one night there, but we packed in plenty of fun. Last night before bed, KayTar said, "We're such a good mom and daughter!" and rated the night "1000 out of 1 to 100."

KayTar and her crazy eyes on the elevator.

Her lunchlady impression. Free shower caps are fun.

Being goofy in the hall mirror.

KayTar's favorite part of any hotel room, the telephone!

KayTar, her rock Cece, and me.

The ballpark right out our window.

The super fun park, also outside our window.

KayTar's TV chair.

KayTar's aunt/my best friend R came out to visit and spend the evening with us. We had dinner in the room, then went to the park for a while.

After the park, we went to the indoor pool.

KayTar said, "I know indoor pools are very rare, because I've never seen one before!"

The 3 B's of bedtime...bear, blankey, and bolus feeds.

I love this one of her and her bear.

The fountains were off when we went to the park last night, so we went back the morning.

She looks pretty thrilled here.

I love her little lifted foot.

Classic.

It was less than 24 hours, and 30 minutes out of every 2 hours between 8am-10pm was spent hooked up to her pump, but we sure had a good time together! It was a wonderful way to start wrapping up our summers. I can't believe we just have a week left, and part of that will be spent at the hospital for diagnostic testing. KayTar is already trying to plan another camping trip for December...we just have to survive this semester first! :)

Speaking of school, I recently found out that I made the Dean's List AND got into Scholars Academy (like honor society for STEM majors, comes with scholarship money and such) and my presentation on Retinoblastoma is going to be up on the GEOSET website any day now. I'm too chicken to actually watch it, but it'll look good on applications, right? ;)

Making it Rain

2011-08-13T13:46:00.000-05:00

(Click to enlarge the last two, wish I had space to make them a bit larger here!)

G-button Check, Check!

2011-08-11T20:29:00.001-05:00

KayTar had her g-button check this morning. It was an easy and interesting test, the best kind! I wasn't exactly sure what to expect, since this was our first go at this and there isn't much information about there about g-button checks under fluoroscopy on Dr. Google. Here's how it went. First, KayTar gowned up and laid on the table and they took a plain old x-ray. Then, the radiologist came in and they pushed in barium via her g-button and we watched it on screen. KayTar thought it was so cool to see her spine at first and then her stomach and a bit of her intestines. We even saw her esophagus as she refluxed the barium. I found that part impressive! Her own little barium geyser. She has been diagnosed with and treated for reflux for a while, but it has definitely gotten worse lately...so it was good to get internal conformation of what we are externally observing in her. She recently went from being on Prevacid once daily, sometimes not even that was needed, to complaining often of throwing up in her mouth and tasting her per g-button meds frequently, even after upping her Prevacid to twice daily.

The other interesting tidbit was that the radiologist pushed in 3 ounces of barium in and he told me that was about all her stomach could hold and he wouldn't recommend giving her much more than that at a time in a feed. I told him what we were feeding her previously, 8 ounces over 30 minutes, and he looked a little skeptical and said that wouldn't be tolerable for her. She has never had a study like this before, so I have nothing to compare it to...but we do know she WAS tolerating that feeding regiment for a long time. For now, we're continuing the small feeds and (mostly) no meat, because it seems to be working thus far. It was sad at dinner tonight, though, because we had sausage and she wanted it SO bad. She licked the spatula like a lollipop and then did the same to a little piece of sausage. I finally caved and let her eat one little piece of it (one small round sliced pieced from a smoked chicken sausage). She was just dying for it and I'm a softy!

The next step is the gastric emptying scan to hopefully find out why she is only tolerating a small volume, probably next week if the pediatrician can get us a slot. Her MRI is next week, too. It will be our last week of summer and I think the clock might just run out on us before we get this latest puzzle figured out and put together!

KayTar took this shot of her guts during the test and told me she was going to tell

BubTar that the black (barium) was blood to "freak him out".

She took this shot of me in the little x-ray machine mirror.

She asked me to take this one of her from the point of view of the x-ray.

PS: Her basic metabolic labs are back and are perfect! Glad to hear her nutritonal status is on track so we can rule that out. Looks like we are looking at mechanical issues.

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What's Next...

2011-08-10T17:46:00.001-05:00

We saw the pediatrician this morning. She's sort of stumped, too, but it feels good to have someone else stumped alongside me. She consulted KayTar's GI this afternoon and told her she didn't really know what was going on with all of this and the GI doctor replied, "Yeah, that is because nobody EVER knows what is going on with KayTar." We all got a laugh from that. The initial thoughts are these:

1. The fatigue may be due to nutritional deficits or anemia.

2. The breathing weirdness may be a tic. Or it may be caused by diaphragmatic pain from whatever is causing her GI troubles. She doesn't want to write it off, though.

3. The gut trouble might be caused by her g-button intermittently obstructing her gastric outlet. Or she is having some other sort of gastric motility issue.

So today she had metabolic labs drawn to check her nutrition status (she was not a fan, she told me "No, you don't need to do that, I'll let you give me a whole feed, even if I throw it up!" Awww, poor sweetie. She is not a fan of blood draws.), tomorrow morning she has a g-button check under fluoroscopy, and if that is normal (I suspect it will be) she will have a gastric emptying study done. We will also follow up with GI. In the meantime, we're keeping her on the smaller, more frequent feeds and steering clear of meat, as it seems to be working thus far...except for that belly burn. She told the pediatrician that it was "like a volcano about to explode". We recently upped her Prevacid to twice a day, but she is still "throwing up in her mouth" some and having this pain which may be reflux related, so we may look at adding in an additional medication. So that is the plan, hopefully we learn something from all of this testing!

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It's a Start.

2011-08-08T19:50:00.000-05:00

KayTar's gut still isn't behaving itself. She didn't tolerate her full feed volumes the night before last, yesterday morning, or last night. She only got about 50% of what she needed yesterday. It is happening more and more often, so something has to change.

First, I made her a pediatrician's appointment for Wednesday to be sure there isn't anything fixable happening that we're missing...and I figure we'll discuss the breathing and fatigue issues while we are there, too.

Second, I changed her feeding schedule today to half-sized feeds every 2 hours, instead of full-sized feeds every 4 hours. So far, so good, with the exception of her "belly burning" for a while midday. It is a pain, though. Hooking her up every two hours is a lot more disruptive than every 4 hours, and it takes longer overall. She got feeds at 9am, 11am, 1pm, 3pm, 5:30pm, 7:30pm, and she will get one at 9:30pm, and 11:30pm to get it all in. Of course, she'll be asleep for the last two.

Third, we're not letting her eat any meat. This one is a bit of a long shot and going to be the hardest to implement if we have to continue it. KayTar is *almost* a total carnivore when it comes to what she is willing to eat by mouth. She doesn't eat A LOT, but a huge percentage of what she does eat is fatty meat. If her gut is indeed having trouble processing things, then meat, especially meat high in fat like bacon, is probably just compounding the problem, as it is tougher to break down than a lot of other foods. If she is chowing down on meat and it isn't breaking down and moving through in a timely manner, it may be gumming up the works for other things (like her Pediasure), causing an upset stomach and vomiting. I haaaate telling her she can't eat something when she wants to, but we have to figure this out, so for the next few days, meat is a no-no. If everything goes well with the half-sized feeding schedule, then we will add meat back in and see if things go awry again. The pediatrician may have additional suggestions, so we'll see what she thinks and go from there. Hopefully this little belly starts behaving itself!

RocketMan.

2011-08-07T10:39:00.000-05:00

Brain Dump.

2011-08-05T10:28:00.000-05:00

Last night I had insomnia. Actually, I've been having it a lot this summer. Not sure if it because I'm used to a much more busy and exhausting schedule during the year or if it is because I have some worries bouncing around in my head. Several years ago, my boss told me that she kept a notebook by her bed and when she couldn't sleep because she was thinking too much about something, she would write it down and then she could sleep. I tried it and it worked, but I got out of the habit of keeping a notebook by my bed since then. Last night I promised myself I would write this post in the morning as a mental compromise of sorts. Then I turned over, because when I was a kid who had bad dreams, my dad told me that there was a bookshelf in my head and if I didn't like the book that was open, I could turn over and the books would shift and a new book would open. Since then, I always turn over if I have a bad dream or need to think about something else. It usually works. Anyway, on to the list!

1. KayTar's breathing. Yup, she is still breathing strangely. Yup, it is still bothering me. We're having the same issues with getting in to see the pulmonologist as we did trying to see her mito doc. Insurance says she is in network, the facility says she can't be. Blurg. The other thing that is bothering me is that we won't see the pulmonologist until after school has started. I won't how we need to handle this while she is at school, if she needs accommodations in PE, ect. It might not be a significant issue at all, but we don't really know that yet and I don't like not having a clear idea of how to proceed.

2. KayTar's gut. We just upped her Prevacid because she was almost daily complaining of "throwing up in her mouth a little" or tasting her per g-tube meds. It seems like the increase is helping, as she's only complained of the throw up thing once since then. However, she had another off day with her tummy on Wednesday, not tolerating her normal feeds, vomiting for no apparent reason. I don't know why this is happening. Usually in the past, she has trouble with feeds when she is sick or very congested from allergies, but neither of those are the case right now. Then on Wednesday night, she woke up from sleep, crying, wrenching, and shaking a lot. Her glucose was fine, but the nausea was persistent and she wanted Zofran. No idea what that was about either. She is still having fecal incontinence issues, too.

3. KayTar's nutrition/formula. The gut issues led me to recalculate KayTar's nutrition requirements, because it has been a while since we evaluated that and I wanted to see how far from the mark she is on her bad days. Unfortunately, I discovered that she isn't getting her caloric DRI on days when she gets her full feeds. Thus far, it doesn't seem to be affecting her growth, but it doesn't give her much give for these low days or for when school and the Parade of Pathogens starts up again. I discussed it with the pediatrician via email yesterday and we decided to try Pediasure 1.5 Cal for her. She can get her DRI in less volume than she is currently getting, and on bad days, she won't be as far from the mark. Perfect, right? Then I did a little digging and found that it is generally less tolerated and kids often drink even less when on it. If her gut is already having some issues with tolerating her normal formula, I'm a little worried the switch might make things worse. Or it could be perfect. I don't know. I guess we will find out, though. The other underlying concern is that KayTar's neurological episodes are currently a thing of the past (we just passed the 2 year mark in July! YAY!), but the last time we switched formulas, from Pediasure to the generic kind, they reemerged. Anytime we mess with her formula, that always comes to mind. We hope that staying within the Pediasure brand will prevent that, but there is really no way to know. The truth is, the formula switch and the reemergence of her episodes might have been coincidental...but there is no real way to know. It is something that we think about, though.

4. KayTar's energy. We have had a great summer; two little vacations, swimming many days, some time with friends, and so on. However, KayTar has spent most of the summer in my bed. Literally. And on vacation, she spent most of the time in her vacation bed or mine. Not all of it, but a lot. It started at the end of last school year, she would come home, climb in my bed, do her homework, and rest until bedtime. This summer, she has spent progressively more time resting. If we go swimming or to the movies, she is fine, but gets back in bed when we get home usually. If we do something with walking, like the mall, she becomes fatigued pretty quickly. Most days she crawls into my bed when Josh leaves for work and is still there when he gets home in the evening. It is fine right now, we are all home and can accommodate her, but in a couple of weeks, school is going to start and I don't know how she is going to handle the transition and increased demands.

5. School. As I mentioned before, school generally means the Parade of Pathogens for KayTar. She's had a VERY healthy summer (knock on wood) with only ONE febrile illness, but school means exposure to a lot of adorable germ-infested small people. I'm worried about how increased infections and increased energy demands are going to affect all of these other issues. We are not going to have her breathing issues or her gut and nutrition issues worked out by then. I do hope it goes smoothly, I mean, she did well enough last year in Kindergarten...but it seems like a lot of these issues just started cropping up at the tail end of the year and have progressed a bit over the summer, so I'm still a little nervous about how she will handle it this year.

So that's that...hopefully with all of this written out, I can get a good night's sleep tonight!

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Birthday Wish

2011-08-01T20:16:00.000-05:00

Today is my birthday, I'm 28. Tonight when I blew out the candle on my pretend birthday cake at the Olive Garden while being embarrassed in public for the SECOND time today, I wished that KayTar will be diagnosed this year...before I turn 29. I know, I know...you aren't supposed to tell people what you are wishing for or it won't come true. I've been secretly (and not so secretly) wishing for this for YEARS and no luck, so I'll take my chances either way.

It seems like it might just be possible this year. I feel like she is finally seeing the RIGHT doctor, one who thinks this is solvable and who feels it is important that we figure it out. At the end of all of this testing and retesting, we might just learn something new.

In some ways, a diagnosis won't change anything. KayTar's ever-present medical issues will still be ever-present. In all reality, we will still just be treating symptoms and putting out fires as necessary. In other ways, a diagnosis will change everything. We can explain KayTar to the people involved in her care by building on the foundation of knowledge that comes from having a named condition. It is so difficult to explain the ins and outs of KayTar without having anything to build upon. She LOOKS normal and SEEMS normal most of the time, so it is hard for people, even people who know her well, to truly understand why she needs to rest more often than others...why she gets sick so easily...why she is going to need a wheelchair for relatively short distances soon...why she can't be out in the sun for long...why she needs a g-button...why she needs therapies...why she needs assistive devices in school...and so on. A diagnosis would give an provide us with a way to explain why for her body behaves differently than other children's bodies. A diagnosis would provide a community and understanding. It would provide a course of action.

A diagnosis probably will not provide a cure. I know that. A diagnosis may provide knowledge that is unpleasant. A diagnosis may be hard to hear. In spite of that, I can't imagine that we will ever wish to go back to this time of trying to find our way down an unknown path in the darkness, unsure what is around us or where we are heading. Not knowing what is ultimately causing her difficulties makes it hard to know if we are treating it appropriately at times. Whatever is going on inside her body has been happening for years and will probably continue to happen, a name doesn't change what it is or where we're headed...but gosh, it sure would be nice to FINALLY know! And hey, if it doesn't happen in the next 365 days...I can always reuse this wish next year. ;)

Medical Miscellany.

2011-07-29T22:03:00.000-05:00

KayTar is still doing the weird breathing thing and I'm still not sure if there is anything to it. The desats on our portable pulse oximeter may or may not be accurate. We're getting a referral to a pulmonologist, though, so hopefully that will be a step in the right direction. I'd love to get a tabletop pulse ox, even temporarily, to check this out, so maybe the pulmonologist can write her a script for one and we can figure out if the breath-holding from "being too tired to breathe all the time" is actually causing any issues for her.

*****

A couple of days ago, KayTar and I went to the mall. She said she didn't need her stroller, so we left it in the car. We just walked down one corridor (our mall is basically a square) to a store, but on the way out she stopped once we got outside and said, "I can't. We have to stop." I had to carry her out to the car and she said, "My legs and body need to go to bed for a while." So that's what she did when we got home. Looks like we'll be using the stroller next time whether she thinks she'll need it or not!

****

This morning I started her usual feed and less than halfway in, she said, "I'm too full! Stop it or I'll puke!" so I stopped it, waited an hour and restarted it. A couple more ounces went in and she said the same thing, so I stopped it. Once her stomach settled, we went to the store to pick up Gatorade. We waited a while longer and ran in some Gatorade. That went well. She just had another feed, 4 ounces of formula and 2 ounces of Gatorade, and that went well, too. We tried a full formula feed just a bit ago and she tolerated it, but then she said, "Oh, you better not give me anything else until tomorrow! My belly is achey." so I'm hoping it stays down. She's fine otherwise, seemingly healthy and happy...her tummy just isn't quite on the same page at the moment.

****

We finally got KayTar's MRI situation figured out. It was quite a headache, what with the scheduling service being told that the hospital we were supposed to go to was out of network and scheduling us at a hospital where the ordering physician didn't have rights. When I talked to insurance and the correct hospital, both said it was in-network, but every time the schedulers called, they got a different story. We've been trying to schedule it since her appointment with Dr. K in June...it will only be a couple of weeks shy of her 3 month follow-up appointment when it finally gets done. We won't know what time she is scheduled for until the day before, but the scheduler said she would need to be NPO after midnight, which could be an issue for our hypoglycemic girl! Hopefully, the nurse will have a solution for that when she calls with the official orders.

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Gonna Eat A Lot of Peaches...

2011-07-28T10:31:00.000-05:00

On Saturday morning, we went bowling with the cub scouts. About 3 frames into the game, it was BubTar's turn to bowl and we couldn't find him. The alley was mostly empty, us, the workers, and maybe 3 other people. We thought he was in the bathroom, but one of his scout friends checked and he wasn't. So I checked the ladies' room, and he wasn't in there. Then I checked the arcade...and restaurant...and other 4 bathrooms. NOTHING. By this time, me, Josh, the scouts, their parents, and the workers are looking for him. My heart was about fall out my butt, as we speed walked around the building, calling his name...people headed out to the parking lot to look for him. We were probably 10 seconds away from calling the police when one of the moms says, "FOUND HIM!" My darling son was pouting in the corner by the lockers, obscured from view, because his game was not going well. HOLY COW. Josh had a talk with him and I don't think he'll be doing that again...but I'm pretty sure I sprouted some new gray hairs after that. Yikes.

After THAT excitement, we finished our games and then headed out to the country for a little vacation with my parents and niece and nephew. My parents recently got a little house in the country, so that's where we went for our vacation with them this year. It was very relaxing, I finished a book and started a new one, watched some TV shows on DVD, played a LOT of Yahtzee, and generally loafed around. The kids had fun with their cousins and Josh had fun fishing every morning and evening. We could only stay for Saturday-Monday, because Josh was out of vacation days, but BubTar is staying the rest of the week, securing this summer's label as BubTar's Summer of Independence. I swear, that kid has been gone as much as he's been home...if not more. He's loving it, though, so we're okay with it. He's been with his friends, my family, Josh's family...he's been at VBS and camp and birthdays...he's a busy guy these days!

On the ride up.

First fish.

Painting in the library, with bedhead.

My dad.

Yahtzee!

My niece's THIRD Yahtzee in one game!

Fishing across the pond.

My dad, using KayTar as a human water balloon shield.

Yes, she actually ATE the pizza that is missing!

As for the title of this post, KayTar and I sing that Presidents of the United States of America song every time we mention going out to the country house. Moving to the country, gonna eat a lot of peaches...

Mischief Managed.

2011-07-20T12:27:00.000-05:00

Last Thursday night, we took BubTar to see Harry Potter and the Deathly Hallows Part Two at the midnight showing. He thought it was amazing, well, we all did, really. Up until about a week prior to that, he had only seen Sorcerer's Stone through Goblet of Fire, because I felt that they stopped being KIDS movies at that point and became considerably darker, however, I told him that he could watch the rest as he finished reading them, because if he was mature enough to finish the books, he was mature enough to see the movies. The Thursday before the movie, though, Josh said, "Wouldn't he just love it if we took him with us?" We discussed it a bit and I decided to discard my lofty parenting ideals about appropriate subject matter and book reading in favor of one really awesome, memorable night. It was the VERY LAST chance he'd get to see one in the theater, and he'd never been before...so morals, schmorals. As soon as we decided he was going to come along, we set to work watching the rest of the movies. He was pretty pleased with the sudden turn of events, too.

I picked up the first Harry Potter on a whim, almost 10 years ago. It was already in paperback, and if I remember correctly, it was also on sale at the time. I was newly pregnant with BubTar and miserable, largely sofa-bound when I wasn't in the bathroom revisiting my breakfast, lunch, or dinner. A kid's book seemed like an entertaining distraction...and thus, a love affair was born. I read through Sorcerer's Stone, Chamber of Secrets, and Prisoner of Azkaban during my pregnancy, and the first time I ever really remember being kicked by BubTar, I was playing the Sorcerer's Stone video game on the computer. I read Goblet of Fire while I nursed him, as a baby. When he was old enough to start reading the books, I was thrilled...it is one of those magical things you want other people, especially your children to experience. It seemed fitting to have him there for the very last of the magic, as we left one era...the era of Harry Potter...and entered another era, the era of having a child old enough for midnight movies!

It was a fun experience, though I was still definitely not feeling my best from that stomach virus. BubTar was enthralled with the folks in costume, we saw Hagrid, Umbridge, Luna, Dobby, Dumbledore, Voldemort, Fleur, and a dozen or so Hogwarts students. Being the shy guy that he is, BubTar wouldn't agree to take a photo with any of them...but he thought it was cool, anyway. I hope it is one of the memories that sticks with him as he grows up. As for the movie itself? I thought it was a wonderful, fitting ending to such a beloved story..not my favorite movie of all, I don't think...but definitely a solid ending. I can't quite believe it is over...and so I'm reading Sorcerer's Stone to KayTar every day, just trying to hold on to the magic for just a bit longer.