Tuesday, February 21, 2012

On the last day you were six...

I woke up at 5am, stumbled to the kitchen to mix your Nexium, and gave it to you while you slept. I gave you your first dose of Augmentin and started your first formula (6 ounces of Pediasure at a rate of 240 ml/hr) feed at 6am.

Dad dressed you in your sleep, as always. You wore a light blue polo, size 6, and a pair of elastic waist khakis, size 6X. You wore a pair of pink Disney Princess socks (Aurora, I think) and your camouflage, brown, and pink boots. You wore your pink hoodie, too. You gave me a six year old hug and kiss before school.

You asked for salami slices and Doritos Cool Ranch chips in your lunch, along with your Star Wars Thermos of water you bring every day. Dad packed your lunch, like he does every day, and I packed your feeds for school. You got two more 6 ounce feeds while you were at school, at 9:30 and 1:30, and a glucose check at 11:30...just like every day. I surprised you with a Happy Meal from McDonald's for lunch. I can't be there for lunch time on your birthday because of my classes, so we celebrated early. You ate 1 nugget (with LOTS of prodding) and 1 bite of a second nugget (also with LOTS of prodding). Your classmates were very talkative and we discussed all sort of important things, like loose/missing teeth and the Tooth Fairy, Christmas gifts, math problems, and so forth. You gave me another six year old hug and kiss before I left.

I picked you up after school, like I always do and we came home. You told me you gave your school nurse, who is one of our favorite people, THREE of your last six year old hugs...I'm sure she cherished every one. You worked on your homework (telling time and writing your spelling words 3x's each...you were VERY proud that you remembered to put spaces between your words! Great work!!). After homework, you got your Augmentin and fourth tube feed while you played some computer, then played in your room. The boys left to go to a Cub Scouts meeting and we went outside so you could drive your car around some. Your tushie got sore, so we decided to come in. You put on your pjs (blue and green stripey pants and your Tooth Doctor For Kids t-shirt) and we played Wii Party for about an hour. Your favorite games were the one where the barrel gets dropped on you and the one where you swing from a rope. You let go at the wrong time every time and ended up flying backwards...you thought it was SO funny. You don't care if you win or not, as long as you are having fun playing! At one point you told me, giggling, "If there was a biggest loser tonight...I'd have to say it would be YOU, Mom."

You went upstairs for reading time at 7, like every night. You read Katie Kazoo Switcheroo Get Lost. You needed Benadryl before bed because you were stuffy. I went up to tuck you in at 7:30, like every night, and got some more six year old hugs, kisses, and butterflies...then we did a little video interview about the last day you were six and what your plans are for the first day you will be seven. I didn't catch it on camera, but you told me "I'm so lucky to be born in the month of looooooove." Then I tucked you in, got some more six year old hugs, kisses, and butterflies and you fell asleep pretty soon after I turned off the lights.

Six, one last time!

Seven years ago, I was watching American Idol and timing contractions. I knew I'd get to meet you soon and  I was excited and anxious about my second baby arriving, A GIRL, but I could never have imagined how completely you would change my life. Sometimes the entire 7 years seems like it has zoomed by in the blink of an eye, but it has been the fullest 7 years of my life. There have been challenges, struggles, and frustrations along the way and many worries, too...but I have learned more, and experienced more joy, and witnessed more triumphs than I ever could have imagined before meeting you. You are such a joy and blessing, every day, no matter how you feel or what is going on in your life. You can always pick out any speck of good that might be hidden in any situation. I am so lucky that I get to call you MINE and I cherish every day we have had together and all the days yet to come. Happy almost birthday, baby girl...I love you more than words will ever be able to express!

Thursday, February 16, 2012

KayTar's Timeline

KayTar had to make a timeline of her life for a Social Studies project. It is kind of nice timing, what with her 7th birthday just under a week away! These were the important events/photos that she chose for her timeline and the sentences she wrote about them.

I was born!

I turned 1 years old.

I went to DisneyLand!

I have my hearing aid!
I got glasses.
I went to NYC for a photo shoot!

I started school.

I had surgery.
I lost my first tooth.

I had a surprise party!

I have my car!

I graduated!
I was in Oliver!
This whole blog in 13 pictures. She makes it look so easy! ;)

Monday, February 13, 2012

I'd Do Anything

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.

Sunday, February 12, 2012

A little off-kilter.

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!

Wednesday, February 08, 2012

Curtain Call.

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.

Monday, February 06, 2012

Surprise! Surgery!

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... :)