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.


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Saturday, June 04, 2011

Swimming!


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!

Monday, May 30, 2011

Miscellaneous May

There is a lot of leftover randomness in my May photo file and a few tiny untold stories and May is nearly done, so I'm taking care of it all at once! :)

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I got my grades for this semester. Straight A's! :) It was a challenging semester for me, not so much because of the course content, but because I really had to stretch myself in certain classes because they were outside of my personal comfort zone. Storytelling was difficult for me, but I did well in it and my professor wrote on my final exam, "It is extremely (double underline) rare for someone to get a 100 on this type of exam! Beautiful work!" I'm also very proud of my work in Cancer Biology. I loved the content, did well in it, was commended by my professor, AND my semester project was chosen to be uploaded to GEOSET! That was waaaay out of my comfort zone, too, giving a presentation in a TV studio while being recorded...but I did it, and well enough evidently. :) Government was easy peasy for me. PreCal was a bit of a challenge because math isn't my strongest, but I think Storytelling was the most difficult for me overall. Finishing well in EVERYTHING feels really good.

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We are officially on snake #3. Snake #2 didn't do so well. He refused to eat the first 2 times we offered him food, and when he finally did eat, we found a regurgitated pinkie in his cage not long after. He died on day 13 of our 14 day warranty, so that was thoughtful of him. Anyway, seeing how ACTIVE Snake #3 is makes me wonder if Snake #2 was sick from the beginning. Snake #3 is a crazy guy and super fun to watch. We haven't handled him yet, because we want to let him settle in and not stress him, in case that was a factor in Snake #2 not eating well.

See? Snake #3 is a crazy man. Here he is almost ALL the way at the top of the cage, hanging out on the thermometer and hygrometer. Shortly after we took this, he slithered up to the top of the cage and found a lip at the very top and slithered around the edges...MUCH more active than Snake #2, who mostly hid under the bark 100% of the time. We're going to feed him tomorrow, hopefully he'll be a good eater! His name is currently Mars, named for the red planet.

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Look at my adorable little graduate!


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BubTar had his district GT Symposium last week. Here he is prepping his presentation on number patterns in nature...


All of the presenters had a bag for people to put comments in, I put one in BubTar's that said, "Most handsome presenter here! Great work on your project, too." On the way home, he was reading them out loud in the car and when he got to mine, he said, "Moooom!" Oops, I got busted. ;) Seriously, though, he WAS the most handsome...

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BubTar also graduated from Bears to Webelos at scouts this week. Last time he'll wear his blue kerchief! 


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I love this next photo of KayTar...it is just SO KayTar. Josh snapped it at BubTar's presentation the other night.


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Josh painted our shed recently. He's got a whole mini-farm out there now...between his little garden and barn! He wants to start raising chickens now, too. 



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We got the kids' spring school pictures back recently...



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May means swimming time in Texas (actually, they've been swimming since April)!!




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KayTar had another eye/headache yesterday afternoon. It came on suddenly and she thought it was over in a couple minutes, but it came back worse just moments later and she had to go lay in my dark room for a while. I gave her ibuprofen and she slept it off and woke up better a couple hours later. We're definitely looking forward to her headache clinic appointment in a few weeks!

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I think that about does it for May catch-ups! We're off to celebrate Memorial Day with more swimming and barbecue and then the kids' have their last full day of school tomorrow (followed by 2 half-days)...then May is DONE! Summer is right around the corner.

Friday, May 27, 2011

Field Day!

Today was KayTar's first field day! She's been in school for 3 years now, but she has only participated at the indoor Special Olympics athletic events. Josh and I were both nervous about it. KayTar fatigues easily when she is active AND/OR when she is in the heat. Since Field Day is active AND the heat here is actual 90's and 100's with the heat index, we were doubly worried. But I don't like to keep her from fun opportunities if I don't have to...so we decided to give it a shot, especially since I was able to be with her all day.

We packed her chilly pad, umbrella, a cold water spritzer bottle, and plenty of drinking water...and it went well! The part in the morning was totally fine, she just sat out of the sack race because it is beyond her physical abilities, and the afternoon was mostly okay, though she had to come in a bit earlier than her class because she was feeling too hot (she picked a chapter book from the library to read while we waited), and we opted out of going back outside for popsicles later. She didn't feel like she missed anything, so I'm glad we let her try and allowed her to set her own limits. On to the photos!













  

These next two are part of a series of KayTar and her best buddy from Kindergarten cracking up during one of the relays. They were passing a sponge down the line and after KayTar passed it to M, she would wipe her hands on his shirt and get it soaking wet. They were both being SO silly. I just LOVE these!




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