Wednesday, June 29, 2011

Wordless Wednesday: So handsome!


This guy was gone from Thursday-Monday and we're sure glad to have him back!


Sunday, June 26, 2011

The Patient Prankster.

Last Saturday (and this Saturday, too, actually), KayTar, Josh, R (SIL/BF, or as KayTar introduced her to the doctor, "My dad's sister.") went out to dinner at Chili's (BubTar has been out of pocket every weekend since summer started, lots of sleepovers for that popular guy).

We were sitting in the booth, and Josh pulls a little sock out of his pocket and says, "I don't know what is going on with the dryer, but this is the THIRD sock I have pulled out of these shorts' pockets."

I said, "I don't really think the dryer could have done that...maybe it was a certain little someone who got bored while watching TV in our bed (which is where I lay out laundry, before putting it away)."

So Josh said, "KayTar, do you know anything about socks in my pockets?"

She started cracking up! "Yes! I did it! I was laying in your bed and I opened up your pockets and stuck me and BubTar's socks in there!" She mimed how she sneakily opened each pocket and put the socks in, which may have been the best/funniest part of the whole thing, then laughed some more.

A while later, Josh went to the bathroom and came back...with another sock in his hand! It was so funny and she played it just right, planting the socks and then waiting for the reaction, instead of prompting him to check his pockets or something obvious like that. It was so funny and she was so pleased with herself.

****

Last night at Chili's, we had a waiter in his late teens/early twenties with bleached blonde hair sort of swooped over to the side, and when he came to take our drink orders, KayTar shouted, "OH MY GOSH, YOU ARE SOOOO..." And then everyone at the table collectively shushed her, because seriously, we never know what is going to come out of her mouth. We all laughed, including the waiter, who said something like, "Now that we've gotten that awkwardness out of the way, I guess don't have to be professional with you guys and we can all relax." As soon as he left, KayTar was sighing with dramatic swooniness over his handsomeness and suggested that R could date him. Haha! At least she knows he's out of her age-range. ;) At the end of the night, we asked her if she wanted to leave him a note on the back of the receipt, since we had kept her from shouting  about how cute he was. Here is the note....

"You are so cute!" 
Hopefully she outgrows this by the teen years!

Friday, June 24, 2011

The Appointment.


Overall, the appointment went well. KayTar was in TRUE FORM, so it was good that we invited my sister-in-law/best friend along. When the doctors needed to get a word or two in, or I needed to answer a question, she occupied KayTar perfectly...but when they wanted to talk to KayTar, oooh boy, did they get the full experience. She was hilarious. She made everyone who came in the exam room laugh, then Dr. K took her out to the nurse's station to entertain everyone. After we left and went over to the lab, my SIL went back to ask a question for me and they were still chuckling and talking about KayTar. I can't even remember exactly what was so funny...I know there was a line of jokes that came from the resident mis-hearing her describe her lunch as "chicken and flies", another line of jokes with KayTar insinuating the resident was trying to steal KayTar's pretend cell phone for her own daughter, and the hilarious way she lifted up her shirt and said "Wa-BAM!" when they asked to see her g-button. Oh, the doctor also tried to set KayTar up to marry one of her other (cute and funny) patients and even showed her his picture, but she still insists she is going to grow up to marry M, her Kindergarten boyfriend. If you have to be at a specialist's appointment, I recommend going with KayTar, because she brings the funny.

On to the business portion of the visit! First, there were insurance issues. The doctor is covered, but the facility is not...or something, so we've been dealing with since we made our appointment. I *think* it is worked out now, but we'll see if we get a big bill in a few weeks. Second, our hospital (where KayTar has seen nearly all of her specialists and had nearly all of her testing done) JUST sent their records over TODAY. GAH! I sent requests over a month and a half ago and it was only supposed to take 2 weeks to get them sent out. She did have time to go over them before the appointment, but they failed to send some important stuff like her LP results and imaging studies. Ugh. I have to go fetch those by hand and deliver them so it doesn't take 100 years for them to release them. Other than those blips, it went smoothly. She feels like KayTar has a classic presentation of a metabolic disorder (due to the systems that are affected and her history/symptoms) and that the abnormal pathology on her muscle biopsy was such that mitochondrial disease is a possibility. She said there have been a lot of testing advances since her biopsy 2-3 years ago and they can diagnose a lot of conditions more easily now, and in 6 months or 12 months it will be even easier...so she thinks we'll figure it out. She thinks it is important to figure it out, which was a relief to me, because most doctors are content with the "she's doing well, so let's not worry about it" mentality (with the exception of her awesome pediatrician). She IS doing pretty well and we are thrilled, but in 6 months or a year, she might not be doing so hot...so I think we should do what we can while we aren't in the pressure cooker of some sort of crisis, so we know what to do if we get into one.

During the exam, she noted two new things, bilateral ptosis and upgaze paresis. That is fancy talk for droopy eyelids and her eyes turning inward when she looks up. It actually made her feel sick to track the object upward, because her eyes were doing this. Her eyes always seem to be causing her one kind of trouble or another (tonight she got another head/eye-ache...too much excitement today, perhaps)!

So, the plan is this: today KayTar had metabolic labs drawn (lactate, pyruvate, acyl-carnitine profile, plasma amino acids, ammonia,) along with some blood for genetic testing for glycosylation disorder, mtDNA, CMA, POLG1, and urine organic/amino acids. They are ordering a new MRI. Then we will follow-up in September to go over the results and decide where to go next. She said they may want to reorder an EEG, inpatient fast (nooooo!), and maybe even a new muscle biopsy, depending on how things go. Part of me hates that we're going to put her through this testing rigmarole again (especially testing that has been done before), but part of me is hopeful that maybe it won't be a total waste this time, with the right doctor reviewing the results. She was definitely displeased about getting labs done today, and did give a pretty loud scream for both her pokes (first one started to blow and stopped giving blood), but at the end of the day she rated the talking part a 100, the lab part a 0, and said it all averaged out to a 100 for her anyway (I'm sure the post-labs bribe helped somewhat). So yeah, it sucks to put her through this stuff again...but if SHE can look at things with such a good attitude, then so can I. Maybe this time when it is all said and done, we can look back and say it was worth the trouble!

Funny Flashbacks.

We have our big Dr. K (neurometabolic/mito specialist) appointment today and I'm a ball of nervous/excited energy! Instead of talking about that, I'm going to repost a couple of gems I came across when reading through this WHOLE blog this week to write up a KayTar Timeline. 

1. The problem with a two year old who can read is...
(she was 29 months old when I wrote this, just about 2.5

When you pull up the list of DVR recordings, she immediately starts demanding the shows she sees on the list.

KayTar: *scanning the list* How 'bout Owwald?

Me: No.

KayTar: How 'bout BobBob BobPants?

Me: No.

KayTar: How 'bout A-Doo-doo? (Pinky Dinky Doo)

Me: No.

KayTar: How 'bout A-Doo-doo?

Me: No.

KayTar: *walks to the TV, points directly at Pinky Dinky Doo listing* What does 'at say?

Me: Pinky Dinky Doo.

KayTar: OKAY!

Drat, she got me again.

****

2.  I'm outsmarted, daily.
(she was 4 and a couple of months old here, and hadn't been talking without the use of scripting for very long)

Me: KayTar, do you have a dirty diaper?

KayTar: Yeah. Are you happy I told you I pooped? (she has a habit of lying about it)

Me: Yes, but I would be happier if you just pooped in the potty.

KayTar: But, you are still happy. That's a COMPROMISE.

****

3. TBS would rate this as "Very funny."
(this was last February, right before she turned 5)

For cub scouts on Monday, Josh asked his pack to bring in a collection to show the rest of the group. KayTar goes to scouts with the boys, because I have class, so she is part of the pack, too. She brought her Disney Princess doll collection to show.

Josh wanted the kids to talk about their collections, so he prompted them with questions during their presentation. He asked KayTar, "What do you like about your dolls, KayTar?"

She replied, "Well, I like their hair and the color of their dresses...and that they have B00BS..."

Josh nearly DIED when she said that in front of that room full of 7 year old boys and their parents!

There is never a dull moment when KayTar is around!

****

Wish us luck today! I'm sure I'll post an update on the appointment tonight or tomorrow.

Wednesday, June 22, 2011

Wordless Wednesday: Snapshots of Summer

 Handstands in the pool.

 BubTar at the ice cream shop (after a MUCH needed haircut).

 My handsome dates at dinner last night.

BubTar insists on being the last one out of the pool, even if only by one foot.

KayTar, thinking deep thoughts by the pool.

Silly man at dinner last night.

 KayTar's splashdown in the pool.

Summer relaxation.

(all these photos came from the camera on my new phone...it does a pretty good job for a camera phone!)

Wednesday, June 15, 2011

Headache Clinic Appointment

KayTar is doing much better! She's back to tolerating her full feeds and eating a bit by mouth, too. Judging by her performance at the neurologist yesterday, she's back at 150%. However, I'm sick now! I'm on day 3 of this yucky head cold. Day 2 my ear started hurting and this morning it feels like it is starting to settle in my lungs, as is my ritual.

Speaking of the neurologist, she saw a new one yesterday. Her previous neuro referred us to this new doctor at the headache clinic. She was nice and quite thorough, we went back over 5 years or so of KayTar's neuro records...but I was having a difficult time maintaining my stream of thought for more than .38 seconds because KayTar was ON! She was talking and hopping and talking and talking and talking. I tried to entertain her by offering her my iPad while the doctor and I talked, but that work for about 2/5th of a minute. The doctor sent her to the nurse's station to get crayons and a coloring book, which worked initially for about 2.15 minutes, and roughly .47 minutes with each redirection. I'm glad it was a low acuity visit, because I didn't have a lot of questions to remember and most of the important facts were accessible in the hospital records. I also brought my iPad which has a list and description of all of her recent headaches in it. Though, I'm pretty nervous about her BIG appointment with the mito specialist next week, because I'll definitely need to focus then. I may have to bring along a friend to play with KayTar during the boring talking parts. She just LOVES new people and wants to tell them every little bit about her life...she is also a performer at heart, so to her physician=captive audience. The best kind of audience!

Anyway, the doctor didn't have any theories as to why the headaches started and were so frequent in April (she's had 1 or 2 otherwise, but a ton in April), but we are supposed to keep a headache diary between now and her next visit, in November, so she can see a couple of months without school and a couple of months with school to see if there is any difference in the frequency. We are also supposed to up her Motrin dose now that she is at 20kg and give her a 4-8oz bolus of Gatorade when she has a headache. She said sometimes that will kick it more effectively. Worth a try! She also said KayTar was the most proportionate kid she has seen in a long time, as her height, weight, and head circumference are all right in that 25-50 percentile. Hooray for Pediasure! She also complimented her on being such good sleeper, as she usually get 11-12 hours a night. For being a not so healthy kid, she is pretty healthy. ;) So that is the latest, hopefully we won't have too much to document in the headache diary...I'd be totally happy if we didn't see anymore of those little buggers.

Speaking of her growth...look at how much she's changed this year! Yesterday she told the doctor that she "had exited Kindergarten and turned the corner into first grade!" My little big girl.

Sunday, June 12, 2011

Summer-itis

I told myself I was going to be a better blogger this summer, post more frequently and such. I was off to a good start, but then KayTar got sick and I didn't want to write 7 days worth of "Still Sick" posts, so I didn't. Instead, you get to read ONE post about 7 days worth of sickness! Fun, right? ;)

Monday: KayTar had her manometry testing in the morning, then we played at the school library for a couple of hours. Towards the end of library time, she wanted me to pick her up and as she snuggled into my neck I thought she felt a little warm. Once she got out of the car at home, she felt even warmer, so I took her temp and it was 102. She promptly fell asleep for a few hours. She temp went up to 103 later, but Motrin did the trick.

Tuesday: More fever, some slight congestion. At one point she was laying in my bed, telling me it felt like it was moving around like a car. Weird.

Wednesday: More fever, congestion, nebs (her sats were a little dippy and her cough got worse), and a MAJOR nosebleed. Holy cow, she was bleeding like a stuck pig, passing clots, the whole bit. It looked like she was involved in a homicide in our bathroom. YIKES. It resolved just as I was starting to get worried. She was a little freaked out, too, as the taste and sensation of the blood in her throat was pretty offensive to her sensory issues.

Thursday: More fever, congestion, nebs. She puked up her first feed of the day, so for the second I went with Pedialyte and cornstarch. She tolerated that, so we moved to half and half (Pediasure/Pedialyte) for the 3rd feed, and full Pediasure for the 4th.

Friday: NO FEVER! :) She went up to her bed around 9am and took a nap...odd for her. She tolerated her feeds, but still needed nebs and Benadryl for congestion. One minor nosebleed. Finally on the upswing!

Saturday: After 5 days of being cooped up, we went to my parents' house to take care of their animals and swim. We tried to keep it low-key for KayTar, but eventually she started coughing too much and we had to get out. At home, she didn't tolerate her next feed, so we went down to half and half and a 3/4-sized feed for the next one, and back up to all Pediasure and a 3/4-sized feed for the next.

Sunday: We started a 3/4-sized feed this morning and I'm about to try a full feed and see how it goes. I think we probably just over-did it yesterday with the swimming, so hopefully her tummy will be amicable to regular feeds today. She curled up in bed with me for a while this morning and nearly went back to sleep, so I think she is still just a tiny bit rundown from the virus. She never really got all that sick, her glucose and ketones were normal and she didn't have any major symptoms...but any little virus just upsets the normal balance of things for her. Her cough is sounding a little junky, but her lungs are mostly clear...just some intermittent wheezes that resolve with her breathing treatments, so that's good. Hopefully she'll be firing on all cylinders soon...it is summer and we're ready to enjoy it!


Friday morning...


Saturday afternoon...looking better already! :)

Wednesday, June 08, 2011

Wordless Wednesday: Self-Modifications



At the beginning of the year, I asked KayTar's PE teachers how she was doing in class. They told me she always enjoyed participating and if she couldn't do what the other kids were doing, she would modify it for herself. This photo was in the book her teacher made for her at the end of the year and is a perfect example of one her self-modifications. Can she hang upside-down like her peers? Nope! No problem, she'll just find her own way to hang with them.

Monday, June 06, 2011

Enema of The State

That is both my favorite Blink182 album and the phrase that has been stuck in my head since we purchased a children's Fleet enema for KayTar's manometry testing prep. I was dreading the enema, as the last time KayTar got constipated, we had to use a liquid glycerin suppository and she haaaated it. It actually made her vomit. Needless to say, I wasn't stoked about having to go one step above that to prep for her test. It went really well, though, she didn't mind at all! She also had to be NPO (except for clears) as of 3am, so I set an alarm for 2:30 so I could give her a feed with cornstarch at the last minute and another for 3am so I would go turn it off. She had a sip of water around 6 when she was technically supposed to be 100% NPO, but she had a scratchy throat, so I made a judgment call.


The test itself went well. At one point KayTar said, "THIS is what I was nervous about?!" It appears that her muscles and nerves are communicating appropriately, but we discovered that she didn't know how to squeeze her sphincter shut. She was pushing/bearing down whether they asked her to push or squeeze, no matter how they tried to explain it. They taught her how to do it in about 5 minutes and verified that she was doing it properly with the sensors and she said, "Wow! I've never done that before!" so I'm thinking that might be a big part of her fecal incontinence issues. Knowing how to hold it in is an important skill if you ever want to make it to the toilet! She was so pleased and she practiced her new skill all the way home!



After the testing, we went to the kids' school library for summer library time! The kids had a great time, checking out books, playing in the sand table, and listening to stories. Towards the end of our time there, KayTar wanted to be held, so I picked her up and she laid her head on my shoulder. I thought she was just tired from our early morning, but when we got home she felt warm (even warmer than a car trip in the Texas summer should make someone), so I took her temp. 102. Dang. She laid down in my bed to read while she got her tube feed, but she was out in a few minutes. It is the second day of summer and she's already sick! Oh well, at least we don't have to worry about absences! The pool will still be there when she's better.


- Posted using BlogPress from my iPad

Saturday, June 04, 2011

Swimming!

video

KayTar is now swimming all on her own (as of May 30th)!

Friday, June 03, 2011

Just in time for summer reading!

Since my last set of book reviews, I have read several more novels, I just haven't gotten around to writing about it! In fact, it has been so long I had to consult my Goodreads account to figure out exactly what I've read since then!

The Book Thief:
I bought this book because I liked the title and the cover caught my eye. It was interesting, set in Nazi Germany following the story of a girl, Liesel, who was sent to live with a foster family who ended up being good people who quietly dissented with the overwhelming political/social climate of the time. The story is narrated by Death, which was unique, but I think it also made it more difficult for me to really get into the story. It was a book that I was slow to warm up to, but the end had me quietly crying in the kids' after school pick-up line. I was glad I read it, but I'd say it was good, not great, overall.

The Maze Runner/The Scorch Trials:
I loved these books. LOVED THEM. They are YA, so they were very easy reads, but I loved the characters and the story really pulled me in. The main character, Thomas, wakes up in an elevator unable to remember anything other than his name. When the elevator opens, he discovers he is in a self-contained world with about 60 other boys who have created their own system of life. Everyone has an assigned job, there is a system of government set-up, there are no adults, and as far as they know...no way to get out of this strange world. There is a maze, though, and they believe solving the maze will lead to the exit. Thomas' arrival sparks change in their world and the story really hits the ground running. I don't want to give anything away about the first book by outlining the second, but suffice it to say it delved into a genre I don't usually like AT ALL, but in this instance I did. I read The Scorch Trials in one day when I was sick and dozing in and out with a fever. I can't wait for The Death Cure to be released!

Incarceron/Sapphique:
I wanted to love these books, I did. But...I didn't. I'd give them a rating of "Meh." It was an interesting storyline, I like the worlds they built...but I never really clicked with any of the characters. Incarceron is a prison world, created to contain the chaos and problems in the world by locking away criminals and the less fortunate, and is self-contained and self-sustaining. The story follows both characters on the inside of the prison and those on the outside, who find themselves in a different sort of prison. Incarceron moved at a decent pace for me, but since I didn't click with the characters, I didn't love it. Again, I won't comment on the plot of the second book, but it was harder to get through. I forced myself to finish because I did have some curiosity about how it would all end up. If you are looking for a mediocre book that you can sort of like, but not be compelled to finish in a day or two, this might be what you are looking for.

The Books of Ember:
There are 4 books in this series, The City of Ember, The People of Sparks, The Prophet of Yonwood, and The Diamond of Darkhold. I like YA fiction, but this was more like upper elementary fiction. It is probably on par with the earlier Harry Potter books, reading level-wise. That being said, I LOVED them. Yes, they were easy and took me about a day to read while I was in full time classes...so VERY quick and easy. I'm sure either KayTar or BubTar could read them with ease. However, they were just wonderful stories. They follow two kids, Lina and Doon, who live in the city of Ember, a town that is surrounded completely by darkness. There is no natural light in their world. In the morning, the lights of the city come on, at night, they go off. They don't farm, everything they need is in the store rooms of the city, rationed out as needed. Extras can be purchased from various shops in town. However, the store rooms are beginning to get bare and the city is beginning to experience periodic blackouts. The city seems to be dying and the only people to notice and take action are Lina and Doon. Each of the books has a really wonderful take home message built in, which is executed well. The third book makes a departure from the main story (and follows different characters altogether), which I didn't care for, but it too had a good message, so I was glad to have read it (at a somewhat slower pace). These books are wonderful.

Across the Universe:
This book follows Amy, a teenage girl who is frozen with her parents (who are both important military/scientific professionals) and transported on board a ship called the Godspeed which will travel across the universe and land on a new planet which is habitable for humans. The journey will take several lifetimes, so the ship is large and equipped for generations of people to survive in, while keeping it on it course. Something goes wrong and Amy is awakened prematurely. Elder, the future leader of the ship, takes an instant liking to Amy and takes her under his wing. As others are defrosted before their time, Amy and Elder try to solve the mystery of who is unplugging the frozen passengers and why. It was an enjoyable read for me. I liked it the characters, I liked the setting, I liked the overall storyline. It held my attention, though I wasn't always surprised by the plot twists. I didn't LOVE it, but it was a good solid read.

Divergent:
This book tells the story of Beatrice, a teenage girl who lives in a dystopian world which is divided into factions, Candor (the honest), Abnegation (the selfless), Dauntless (the brave), Amity (the peaceful), and Erudite (the intelligent). In this world you are born into a faction, but at age 16 you undergo an aptitude test which tells you what you are best suited for and then you must choose where you will belong...the motto is faction before blood, so if you choose another faction, you basically lose your birth family. Beatrice finds herself torn between Dauntless and Abnegation and her choice leads her down a path she never could have predicted. It was an action packed book and I really loved the characters. I don't want to give ANYTHING away, so I won't say more...but I highly recommend it. It will be a trilogy, I think.

Birthmarked: 
Gaia is a sixteen year old midwife-in-training who lives outside the wall of the Enclave. Life inside the wall is a life of beauty and privilege and outside the wall, life is a bit more difficult and primitive. Midwives in this world have a very important job, they must advance the first three babies born each month to the Enclave, where they will be adopted by wealthy parents and be given a wonderful life. Gaia is proud to serve the Enclave in this way, as was her mother before her, but when the Enclave intrudes into her life and begins to tear is apart, Gaia begins to wonder if everything is as wonderful as it seems within the wall and it sets her on a journey of rebellion and discovery that will change her life in unimaginable ways. This was a good read. I did warm to the characters, I was drawn in by the story. I think I might have liked it more if I hadn't read it right after reading Divergent, because in comparison, it wasn't as strong of a novel. I'd say it is worth a read, if you like dystopian fiction, and I look forward to the next book in the series coming out!

BossyPants:
Tina Fey's autobiography was well-written and hilarious. If you like intelligent/funny women, even if you don't watch 30 Rock or SNL, definitely give this one a read! 

PS: The 'Tars are now on Tumblr, so check out our mini-blog Life With The 'Tars: Snaps&Snippets over there for lots of good photos and little everyday moments from our life! 

Thursday, June 02, 2011

Unrequited Kindergarten Love

When KayTar started Kindergarten, she knew one person in class. His name was M, and KayTar knew him because his mom was BubTar's second grade teacher. Much to her delight, they were seated next to each other on the first day.

Note KayTar's excitement and M's lack of response in the photo above,
this may be a recurring theme. 

KayTar loved M instantly it seems. In fact, last night I found this entry in her school journal from the first nine weeks of school...

It says, "Dear M (it had his full first AND last name), I love you."

M spent many afternoons at our house this year, as we would bring him home with us when his mom had staff meetings or other work events. They play great together. They are both smart, well-mannered kids, and adorable to boot. I *think* KayTar might have made that journal entry after his first visit to our house, because it look like two kids in a van parking in a garage. She has been smitten for a very long time and a few weeks ago when it was Best Friends Photo day at school, she just HAD to have her picture made with M. Here it is...


I heard through the school grapevine (photographer/principal/M's mom) that they had an impossible time getting the picture because KayTar just wanted to stare longingly at M across the table. She told me that "It was like a ROMANTIC dinner for two!" M told me, "I didn't want to do it, but she MADE me!" Haha! 

Yesterday, they were playing Mom and Dad and they were having the FUNNIEST conversations.

M (repeatedly, as he walked around sighing): Being a mom and dad sure is hard work!  
***

KayTar: Why are you giving ME the baby?

M: YOU are the one who wanted to HAVE it! 
***

KayTar: Okay, it is bedtime...if one of the babies cry--

M (cut her off mid-sentence): I'll just wake YOU up.
 Do they have this parenting gig down or what?! ;)

Then today for the last day of school, KayTar's teacher gave each of the kids a photo book with various photos of them and their friends from this year. KayTar and M are in probably 50% of each others' photos, but these two really take the cake...


When I got to their class today, 
M ran up to me and showed me these and said, "Look what she did to me!" 
Though, he doesn't seem especially distressed to me. ;)

They are such good little friends, but KayTar is just ALWAYS trying to edge it over towards romance. It not only cracks US up, but it seems like the entire school staff is onto it and chuckling about it, too. M plays it like he's embarrassed that she's so in loooove with him, but he's always grinning when she's around. I usually don't post much about kids that are not mine, but I thought that KayTar's first official crush should be immortalized here, just like all of her other important milestones.



PS: Today was the last day of school! We survived Kindergarten, KayTar's first year of full day school! :) I can't believe I have a 1st and 4th grader now. Whoa. As BubTar said in the car on the way home, "I'm just growing up so fast."

Wednesday, June 01, 2011

(Mostly) Wordless Wednesday: Medal Man




Not only is my BubTar ridiculously handsome, as well as gifted and talented, but he also made 100% on both his math and reading state standardized exams and received a medal for it!