Memorial Day weekend update...

We have had a DELIGHTFUL weekend!

On Friday, my parents hosted a sleepover for my kiddos and their cousins. Josh and I took the opportunity to have an impromptu date night. It was nothing fancy, just dinner at Fuddruckers (I love their cheese sauce an unholy amount) and then we went to see MacGruber. It was a fun evening.

On Saturday, KayTar spent most of the day in the pool with her cousins, but BubTar came home early in the day and wanted to invite his friend C over. C spent most of the day with us and we all went swimming at my parents' house in the evening.

This morning, Josh made cinnamon rolls and shortly after breakfast we headed back to my parents' house for more swimming. We were in the pool nearly all day, with a short break for a lunch of chicken kabobs and chicken nuggets. It was so much fun. This evening we had our best friends over for pizza and game night (Mexican Train, WOOT!), and BubTar's friend is spending another night with us so his parents can go celebrate their anniversary. He's such a good kid, we definitely don't mind keeping him for another evening. Having an extra kid around is almost easier, they are all much happier and nobody ever complains of boredom!

Tomorrow we have more swimming and grilling plans, and I cannot imagine a more relaxing and fun weekend! It is finally starting to feel like summer, even though the kids have three days left in their school year.

Disclosure.

BubTar is my shy guy. He is such a smart kid, but he doesn't fit in easily at school. He makes straight A's (and many of the kids in his class are in second grade for the second time), he always has his nose in a book (he is the only kid in his class reading chapter books...and his are on a 5th grade level on average), and our family is quite strict compared to the other children in his class (he watches Disney and Nick while his peers are talking about movies like Orphan and TV shows like Family Guy). He is awesome...funny, intelligent, and sensitive...but he feels like he's on the outside at school. He has one best friend from his previous school, they've been friends since Pre-K, but hasn't made any good friends at school this year. He is friends with the boys he is in scouts with, but hasn't made any close connections. Although he has had a good year, it has been a sore spot for him.

At the district Pinewood Derby meet, he met another wolf cub from a local pack, C. It was so easy and they were instant friends. Turns out, C lives on our very street! They are so similar, both shy, intelligent, funny, bibliophiles who read well above grade level. They play the same games, read the same books, have the same temperament. The second time they saw each other, C said, "BubTar, I'm so glad you are my friend. I don't have many." It was SUCH a BubTar thing to say. Not only are the boys VERY similar, C has a little sister, E, who is FIVE. E is outgoing, bubbly, hilarious, and JUST LIKE KAYTAR. The night before BubTar's birthday party we took the kids to movie night at C and E's church, and KayTar and E were instant friends. It was quite amazing...like someone took our kids, made a copy, tweaked one or two details, and TA DA! C and E were created. Every time we see them, we discover a new similarity. It was exactly what BubTar needed.

A couple of weekends ago, we invited C and E over for the evening. We had dinner and the kids played, the boys played Wii with Josh and the girls played dress up and threw a ball upstairs. The next day, BubTar and KayTar were invited to C and E's house. This is a huge deal, because KayTar has never, NEVER been anywhere without a family member or a trained medical professional (she goes to school and camp in the summer, but both those places have her medical history and are trained to handle her emergencies). To be honest, I didn't want to let her go. I was nervous, but she wanted to go so much and I couldn't tell her no. BubTar was going to be with her and he knows how to take care of her, so we decided she could go. We tube fed her, checked her glucose and ketones, gave her Albuterol, and dropped her off. The only instructions I gave were to make sure that IF she ate (and she probably wouldn't) the label needed to be checked to be sure that it did not contain tree nuts, and of course to call us if they needed anything. That was it. No mention of episodes. No mention of asthma or feeding disorders or tube feedings or unilateral hearing loss or light sensitivity or gross motor delays or sensory issues. I didn't give her whole history, all the worries, all the things that could possibly go wrong. I could have said all of that...maybe I should have...but I didn't. KayTar has really grown into her own this year and many days, MOST days, none of that is a major issue. I decided that for one day, for 3 hours, she could be a normal kid. KayTar knows her own limits, if she needs help doing something because of her motor delays, she will ask. If she doesn't want to eat something, she won't. If something triggers her sensory problems, she will withdraw from it. If she starts to feel sick, she will tell an adult. If she can't hear you, she will tell you to talk into the ear that works. If the sun hurts her eyes, she will ask to go inside. So I stepped back and let her take the lead. And it worked. She went, she played, she had a great time without a single issue.

It is difficult to know what to do in these situations, do you share too much and risk setting of alarm bells that don't need to ring? Do you stay quiet and not provide information that might be pertinent? Where is the line drawn? For us, in this situation, this worked. It was only a couple of hours. We were down the block and if anything out of the ordinary had occurred, we'd have been there in seconds. BubTar was there and he knows all about KayTar. She had been medicated and tube fed before going, the odds of anything happening were incredibly slim. I still worried, my baby was in a new environment without me, but I think we made the right call. As KayTar continues to grow, it will be a situation we find ourselves in more and more. How much do we share? When is appropriate to explain everything, when should we hold back? When do we let her take the lead, when do we step in? When is sharing everything a necessity and when is it a disservice to her? I don't know that we'll ever have the right answers to these questions, but I think it will be something we're having to ask ourselves more and more as KayTar enters her grade school years.

Whew, that is better!

Last week was terrible. The last time I can remember being that sick was probably when I was 16, ten years ago! Quick recap: I had a chest cold for a week, started to feel better Sunday morning before getting much worse on Sunday night. On Monday I saw the doctor, got a steroid shot, started antibiotics and mucinex dm along with my albuterol. Tuesday, I started to feel a tiny bit better. Wednesday, I got worse and the doctor started me on oral steroids. Thursday, I started to feel better. Friday, I got much worse...I had the scariest asthma attack in a very long time. I thought was going to end up in the hospital. Once I finally got it mostly under control, I called the PA because I was maxed out on albuterol and my chest was still as tight as a drum. She called out Symbicort for me and once I started that, I finally, FINALLY started to actually get better. I made steady improvement over the weekend and it is such a relief. The bad news is that KayTar seems to be coming down with it now. She has been congested and coughing since Saturday, so far nothing beyond some mild upper respiratory symptoms, but I'm still a little worried about her. If it hit me this hard, I'm a bit anxious about how it might affect her.

Here's a few snippets to catch you up on what we've been up to recently. I have two weeks left of my break between semesters, I'm taking Trig and Pre-Cal over the summer. Josh graduated from junior college the Friday before last...we're both transferring to university in the fall. We FINALLY have an endocrine appointment for KayTar coming up next Friday...we're currently testing her glucose prior to every meal/bolus feeding, even at school. She's such a champ...doesn't mind at all. Sometimes she pretends I'm a Medical Fairy and my wand (lancet) is filled with fairy dust in lieu of a needle. She's a hoot. BubTar got into the GT program for next year and he's quite excited about that. We've been having lots of fun playing old school Nintendo games together lately. The Wii was ABSOLUTELY the best family purchase we've made in a very long time. The kids have a week and a half of school left and I can hardly believe summer is right around the corner! That is all the news for now, and I just have one very, very important question for you all...

What did YOU think of the LOST finale???

In sickness...

Yesterday was our 9 year anniversary, we were definitely living out the IN SICKNESS part of our vows. After taking a sick day on Saturday, I felt a bit better on Sunday until evening hit and my asthma (which hasn't acted up in years) went berserk. I went to the doctor on Monday spent $273 on an office visit, got a steroid shot and a prescription for antibiotics. I felt a little better that afternoon and the next morning and managed to gear myself up to go on BubTar's field trip with him. By the time I got home I was starting to feel much worse and have just been getting sicker since then. I'm dizzy, coughing, wheezing...I can barely talk or walk without getting incredibly winded. I can't even drive the kids to and from school because I'm afraid I'll pass out at the wheel because I'm so light-headed. I've been coughing with such force that I pulled some chest muscles and I think I've been coughing up a bit of blood, too. In short, I'm quite miserable and I haven't been sick like this in ages. I haven't even needed my inhaler for years prior to this! I called the PA back this morning and she called out a prescription for a course of oral steroids, so hopefully this will do the trick. I do not like being sick like this!

Last night, Josh brought home Pei Wei for our anniversary dinner since I was obviously too sick to go anywhere. It was a far cry from date night...Josh sat at the table while I half-sat, half-laid on the couch while KayTar INSISTED on feeding me several bites of my food. She told me, "I'm the second mommy in this house, so when you are sick, I'll take care of you like you take care of me." Later on, BubTar cuddled up with me for a while and watched Charlie and the Chocolate Factory on TV (which is the play we went to see for his field trip, actually!). Once the kids went to bed, Josh played Wii while I laid on the sofa, alternately resting/trying to expel my lungs from my body with the force of my coughing. Josh took note of my declining condition and brought me VapoRub and my inhaler, then sat with me and rubbed my feet while we watched our Wednesday night TV shows until I finally felt calm enough that sleep might be possible. It certainly was not the most romantic anniversary on record, but I did feel extremely loved regardless of how sick I feel. Nine years ago, we were just two crazy kids in love and over the years we've taken that love, invested it in each other and in our children and it has paid out in the richest of dividends, and we intended for it to continue to do so...For better or for worse, for richer or poorer, in sickness and in health, as long as we both shall live.

Taking a sick day...

While I'm sick, hop on over to Good Mom/Bad Mom and read the story that Jenny, The Bloggess, wrote for our KayTar (who lamented the lack of princesses with glasses and hearing aids)!

Well, that was unexpected.

Yesterday, my big plan involved buying myself new socks and resting a bit to fight off a cold. Instead, I spent the day at the Children's Hospital because KayTar needed urgent surgery!

Yesterday morning when Josh tried to give KayTar her usual morning feed, he couldn't get the Pediasure to run in. He tried flushing the tube with a syringe of water, thinking maybe there was some build-up in the tube, but it ran back out. He called me to look at it and I discovered that the stopper on the closing latch was missing...probably stuck in the tube, causing the blockage. DANDY! I emailed our pediatrician who told me to call our surgeon. I left a message with the answering service and started getting ready. While waiting for a call back, KayTar woke up and started coughing and vomited some. The coughing was causing fluid to leak out of her tube (the stopper seemed to have lodged itself in the valve, causing her stomach contents to spill out. Yummy, right?) I got a call from the pediatrician who had texted the surgeon who told her that he could squeeze us in between cases and to call the clinic and tell them that. So I did. While I was on hold with them (they had to page him to verify what I told them), the pediatrician called back and told me that the surgeon said to just show up at the clinic and they'd get us in, so I hung up on the clinic and started packing up for a day at the hospital. The clinic called back and said they could see us as fast as I could get there, so off we went, with everyone on the same page, finally.

KayTar has a Bard button, so it has to be switched out by the surgeons. It doesn't have an internal balloon to deflate, it has a hard mushroom that is difficult to remove and requires some force for both removal and insertion, so the surgeon has always told us that it is best done under anesthesia in the OR, so when we arrived at the clinic I made it clear that I did not want it done while she was conscious. The second consideration was her hypoglycemia and the fact that she had been NPO for a while, and the longer she was NPO, the more she was at risk for becoming hypoglycemic. That left us with two possibilities, going down to the ER, get an IV set-up, get admitted to surgery and wait for a surgery time to be scheduled or try to get her into day surgery as soon as possible, sidestepping the ER and admission, but possibly facing too long of a wait without any sort of carbohydrates or fluid. The surgeon we saw said that it could go either way, depending on the day and the case load in the OR and ER, but after talking to his colleague who was in the OR that day, he felt that our best bet was going over to day surgery and getting to prevent hypoglycemia.

We discovered the clog about 7am. We left home at about 9am. We arrived at the clinic at 10am. We were in the day surgery waiting room by noon. They took her back at 3pm. She was in recovery by 3:20. We gave her a test feed of Pedialyte at 4, and we were released at 5, after she kept it down for an hour. We were home a little after 6pm. It was a crazy day, definitely not what I expected when my alarm went off yesterday morning, but I'm glad it went as smoothly as it did. KayTar came through surgery like a champ, her biggest complaints yesterday were discomfort from her tummy leakage and the removal of her chest electrodes (she's actually still wearing one today). My little cold took the opportunity to morph in to bronchitis, it seems, but all in all, everything went really well. If it had to happen, at least it happened yesterday when my major finals were already over!

ARD time!

I know most people hate ARD meetings (Admission/Review/Dismissal meetings for Special Education), but as I've said before I really enjoy them. KayTar is such a hoot, both at home and in class, that about 50% of the meeting is trading hilarious stories about her. The other 50% is the actual meeting part and to date, I've never been in disagreement with the staff's plan for KayTar. Today was no different!

My baby will be a MAINSTREAMED Kindergartner in the fall! :) Cognitively, she is far above a Kindergarten level, she reads/comprehends at least as at 3rd grade level (though, she DOES read from our college textbooks just fine), can do simple math, and just this week she taught on of her teachers what phlanges are and held an impromptu session on hypoglycemia in a neighboring PreK classroom. Kindergarten is below her intelligence level and I would think about requesting a grade level advance at this point except for the fact that she really needs to learn how to behave properly in a structured classroom environment first. KayTar knows A LOT, and because of this, she has a hard time sitting back and letting the teacher do the teaching and letting her peers answer questions. Most, if not all, of her goals for next year are social speech related.

As far as accommodations at school, she will get preferential seating in class so that the teacher is on her right side (due to her profound left-sided hearing loss) and she will have a medical plan in place for her various maladies. She's require more meds at school meds next year because it will be a FULL DAY, and she'll need at least 1 tube feeding while she is there, too. We are also going to get a PT screener (not as in-depth as an eval) to see if she will be functional in PE without adaptations because of her lagging gross motor development. She is still labeled as "speech impaired" because of her initial evaluation at age 3, but that is CLEARLY not the case any longer, so in the fall she will get her speech eval earlier than required to fix that. All in all, it is a good plan for her!

Wordless Wednesday: School Portraits!

His turn...

A couple of hours after our guests left on Sunday, BubTar walked into our bedroom with pink cheeks. I felt him and he was warm to the touch. A quick oral temp confirmed what I already suspected, a fever. Looks like we sent our guests home with more than party favors! Yikes!

Today is Wednesday and he is still sick. Fever, cough, some mild wheezing (I can hear it with my ear to his chest, but not audibly most of the time), headache, and some vomiting yesterday only. If he is still sick tomorrow, we'll head to the pediatrician's office on Friday. It is such a radically different experience when BubTar is the sick one. I daresay it must be what parents of normal children everywhere experience! With KayTar, it feels like warfare...round the clock meds, tube feeds, glucose checks, urine dips...I have to keep notes on all her ins and outs, I have to set alarms for meds/feeds so I don't get busy with something else and forget. I have to wake up at 2:30am and give her a feed so her glucose doesn't bottom out while we sleep. With BubTar, sickness requires much less action on my part, a little quality time and cuddling, a little video game playing, some saltines, Gatorade, a cup of soup...maybe some Motrin if his fever climbs too high or Sudafed if he is feeling too stuffy. We've actually had a nice week together during his up times; we've played a lot of Super Mario 3 on the Wii and today we watched The Neverending Story. It is nice to have my little man mostly to myself with life at a slower pace. Of course, I've been studying and keeping up with things here at the house, and he's been resting a lot, but we've had a lot of relaxing quality time which isn't always the case with him being in school all day and me being in school 2 nights and on Saturdays. That being said, I'm ready for him to start feeling better and so is he! At least once per day he starts feeling very badly and I just hate it for him. I have a feeling that he's going to end up missing this entire week because as of tonight, he doesn't seem to be improving at all.

And as fate would have it, KayTar is not even off her antibiotics from the pneumonia and her incessant cough is back. No fever yet, thankfully, but she was only off round the clock albuterol for a day or two before this hit her. AGH! Josh is under the weather and I'm feeling a bit sick too, but faring MUCH better than everyone else in the house, hopefully it stays that way!


Thursday Update: KayTar yakked up her morning feed today and has a fever now, too. Geeeeeez.

Weekend Update!

We had a great time at movie night on Friday, and I studied before and after. My mom saw my SOS on Facebook and came by and offered to help with cupcakes, but we told her was had it under control. (I'm lucky to have great family support nearby.) After movie night, Josh baked the cupcakes while I was studying...we made it to bed about midnight.

On Saturday morning, I went to class (and stayed for the whole thing for the first time in weeks! it was actually pretty nice to just sit and write copious notes for a few hours! i also answered a couple of questions during lecture that the professor couldn't answer...one about the surgical treatment for GERD and one about congenital hearing loss from rubella/TORCH infections, nice!). After the lunch break, we had our lab exam, which I ROCKED in spite of not being in lab for any of this material.

After class, I swung by Starbuck for a frappaccino, then I headed to home where I busted my butt prepping for the party. The boys stopped by the store on their way home and I picked up KayTar from my mom's house (see? family support.) We finished up the last few preparations and it was party time! It went really well, the boys had a blast. Video games, playing in the yard, jumping on the trampoline...all kinds of fun. It was the first sleepover for all of the boys except for BubTar's best friend, who has stayed here about a million times and surprisingly, they all made it through the night without incident. We had two Wiis set up in the living room and they played and played. Then at about 10pm we had them get their jammies on and rented a movie. It went better than we could have expected. We didn't go to bed until after midnight and we were up at 5:20, but everyone slept through the night. Josh made a donut run earlier this morning and 3/5 of them are still here at 9 this morning, playing happily. KayTar just got home from her sleepover at my parents' house, too. The only thing left to take care of this weekend is my project for class, and I predict it will be pretty easy to knock out!

Here's a few of the photographic highlights...

This weekend...

Friday:
* We are going to a church movie night with BubTar's new little friend's family. They want to get to know us before letting him sleepover for the party, which we think is awesome!
* Clean the house.
* Bake and ice cupcakes until we drop!
* Study for my Bio II exam tomorrow.

Saturday:
* Class bright and early, 8-2ish. Exam (the first of 4 in a row for the next 4 Saturdays).
* The rest of the family will be going to Scout Fair.
* Get home around 2ish, start prepping for the party!
* Around 3-4 the rest of the family will get home, so it'll be time to make the kids presentable and finish last minute party stuff.
* 5pm the party starts! Everyone will be here for pizza, cake, ice cream, and presents...then around 7, they'll head out and 5 of BubTar's friends are spending the night.
*Later, if the boys settle well, I may sneak out to grab a drink with my oldest friend at her bachelorette party...this TOTALLY depends on the level of CRAZY at our house with all those boys!

Sunday:
* Entertain the boys until their parents arrive, sometime between 12-2 ideally.
* Recuperate. Caffeinate.
* Work on/complete a project for my Human Sexuality course that is due by midnight.
* Eat? Shower? Maybe if there is time. Ha! Sleep is going to have to wait until post-midnight, which technically falls onto the MONDAY to do list. ;)

I was feeling a little overbooked earlier today, but then in the waiting area at therapy, KayTar announced loudly, to EVERYONE, "That is my mom over there...she's going to be a DOCTOR! Isn't that awesome?!" It was exactly the reminder I needed going into a weekend like this. It may not be easy to "do it all" all the time, but it will be worth it in the end. One day, in the distant future that seems lifetimes away from where I am today, I hope that I WILL be a doctor and that I will have taught my children that it doesn't matter where you are in life at any given moment, with dedication and hard work (and sacrifice and sleep deprivation), you can achieve whatever it is you set out to do. Now I'm going to go repeat that to myself while I toss back another cup of coffee and hit the books. ;)

Happy birthday, BubTar!

Eight years went by in a flash!

Happy birthday to my smart, funny, shy, argumentative, book-a-holic, video game maniac, derby-winning, cub scout loving little man.

Pneumonia!

Yesterday I took KayTar back to the doctor and TA DA! there were crackles in the base of her left lung. Pneumonia, of course. To think, I almost didn't bring her in because she was looking so much better! She's on a round of antibiotics and steroids, plus her regular regiment of inhalers. Hopefully we caught it early and she'll be over it in no time. BubTar turns 8 on Thursday and we've got a houseful of little guys spending the night here on Saturday, so we need her to heal up quick!

The rest of the week includes a GI check-up for KayTar (today), her return to school (tomorrow, hopefully), a project I have to complete for one of my classes, the first of FOUR Saturday exams I have coming up, dinner with the parents of BubTar's new friend, party prep, scout fair...and other things I'm probably forgetting at the moment!

Still sick...

As KayTar said when her fever spiked again last night, "I thought we were past this, Mom!"

All In A Day's Work: Wednesday

12:00am Alarm goes off. Time to give KayTar Albuterol and Benadryl. It takes me a while to fall back asleep.

2:30am Alarm goes off, again. Time to tube feed KayTar 4oz of Pedialyte. She then decides she can't sleep unless she is ON ME. I doze a bit, but saying I slept might be a stretch.

4:00am Alarm goes off, a third time. Time for another dose of Albuterol and Benadryl. I roll her off of me and try to get a bit of actual sleep.

7:30am I wake up for the day, start the coffee.

7:45am KayTar wakes up. Test her glucose, 62. A little low for her, but not hypoglycemic low.

8:00am Give Benadryl, Qvar, Albuterol.

8:10am Test her urine. Moderate level of ketones.

8:15am Straighten my hair, pull on my clothes.

8:20am BubTar calls from school, saying Josh forgot to send him with a lunch. I call my mom and ask if maybe she can bring the poor kid something, since KayTar and I have to drive to the doctor and won't be back before his lunch. She says she'll get McDonald's and eat with him. Perfect!

8:30am Tube feed KayTar, 2oz Pediasure/2oz Pedialyte.

8:45am Make-up. Brush teeth. Dress KayTar. Pack up her meds. Gather things to entertain us at the pediatrician's office.

9:10am Leave for the doctor.

10:30am See the doctor. If she isn't better by Thursday, we'll start antibiotics. We get a referral to endocrinology for the ketotic hypoglycemia.

11:45am Get home. Test KayTar's urine, still moderate levels of ketones.

12:00pm More Benadryl, Albuterol.

12:30pm Tube feed, 3oz Pediasure/2oz Pedialyte. She eats 1 chicken nugget and a small amount of soda. Food and drink, by mouth! Hooray!

2:20pm Test her urine. Finally clear of ketones!

2:45pm Pick BubTar up from school. No conduct marks, no homework.

3:20pm KayTar has 4 oz of Pediasure...BY MOUTH!

4:00pm Benadryl, Albuterol. I'm feeling sick and/or tired and decide to skip class.

4:15pm BubTar's best friend is being mean to him over the phone. BubTar is very upset. I step in and tell his friend that my kids can't talk anymore today. This is becoming a pattern lately. We have a talk about standing up for ourselves...again.

4:30pm I have a major fall while sprinting into the next room to get to KayTar. She was coughing a ton and I thought she was going to vomit. I am seriously hurting and just lay on the floor for a while before figuring out if I can actually move.

4:45pm Josh calls from the store, asking what we want for dinner. He picks up a few necessary things plus dinner items.

5:30pm Josh is home!

6:00pm KayTar has 4 oz of Pediasure...BY MOUTH!

6:15pm Dinner. We have french dips, KayTar has a few spoons of powdered parmesean cheese. I force BubTar to answer THREE questions about his day. Getting the kid to talk about school is like pulling teeth. Isn't this supposed to start in the teen years?

6:30pm The boys go to the park with a new friend of BubTar's from the neighborhood while KayTar takes a play bath.

7:15pm The boys get home. Then it is pajama time, reading time, bedtime for BubTar. BubTar is too hyped up from the park fun to fall asleep on time.

8:00pm Benadryl, Qvar, Albuterol for KayTar. Try to get her to drink, but she is done for the day.

8:40pm Tube feed, 3oz Pediasure/2oz Pedialyte.

9:00pm Urine negative for ketones!

9:45pm Check her glucose, 91.

9:50pm LIGHTS OUT!

1, 2, 3.

1. KayTar is still sick...actually she is sickER. Yesterday she really seemed to be making great strides, her fever had been gone for a whole day, we were working back up to Pediasure feeds, and then the bottom just fell out. I had a Chem exam, so Josh took the kids to scouts as usual. KayTar seemed like she could handle it, we were even thinking about her returning to school today. I finished my test quite early and called Josh to see if I needed to get her, but he said she was okay. I stopped by Subway to order a sandwich and as I pulled into our garage, Josh called back and said she was coughing non-stop and asked me to come get her. As soon as we turned back onto our street, KayTar said, "I'm going to throw up!" I said, "Not yet! Think about something out. Hey, what about BUTTERFLIES?" It actually bought a minute or so, but by the time I unbuckled her, she puked all over the garage floor. Then in a bucket in the garage. Then in the bowl we RAN to as soon as we entered the house. There was A LOT of puke. Her cough is just terrible now and her fever spiked up past 102, higher than it ever was on the front end of this. Tomorrow we're going to the pediatrician, in case she needs a round of steroids to kick this, after 5 days we want her getting better not worse! The good news is that we're staying on top of her ketosis and hypoglycemia and giving her that 2:30am feed is really helping.

2. BubTar won the ENTIRE district Pinewood Derby for scouts! He came in first place for the Wolves, but he also beat EVERYONE in the whole Derby, all levels! He was beyond excited. Now he gets to compete at Scout Fair! KayTar was at home sick again, but they raced for her and she won 3rd place in the non-scout race! The 'Tars make some awesone racing machines!



3. BubTar's surgical consult went well last week. He doesn't need surgery at this time and the belly tenderness was non-existent at that check. Hopefully, whatever is was will NOT happen again!

Maybe we're on to something...

KayTar got sick on Friday evening. It started with a little cough and then she woke in the middle of the with a low grade fever and that croupy cough.

Yesterday morning, I tested her urine for ketones and it was only at trace amounts (normal for the morning). A couple of hours later and I tested it again and it was clearly in the LARGE range. I was speechless when the stick turned dark purple. I know I theorized that this is what was happening when she was sick, but to see supporting evidence in my hand was CRAZINESS. We spent the day giving her carbohydrate-rich fluids and even then, she still lapsed back into ketosis more than once, in spite of being well-hydrated and having good, normal glucose levels.

This morning, though, she woke up with hypoglycemic symptoms and I checked her glucose. It was 46, too low, so I gave her Pedialyte through her g-tube. She vomited not long after, probably because of the hypoglycemia, so I gave her Zofran...and retried the Pedialyte a little later. Her glucose levels normalized soon enough. Her morning urine was STRONGLY positive for ketones and it stayed positive until just a short while ago. She's still sick, so we'll be at this for another day at least. I'll probably give her a feed tonight around 2am in hopes that she doesn't bottom out so drastically while she sleeps.

It looks like we just might be on the right track now!

ETA: It worked...I fed her at 2:30 am and this morning her glucose was 72 and her urine only had a small amount of ketones in it. Woohoo!

Poor BubTar!

My poor HEALTHY guy is falling apart lately! He's had some urogenital issues (which I won't be expounding on for respect for his privacy) in the past couple of months, which we're seeing a surgeon for on Friday and a urologist for in July (earliest available appointment, GEEZ!)...and on top of that he's recently started having very severe, intermittent abdominal pain over the past couple of weeks.

The night before last, as I walked in from my hospital shift at 1:15am, I heard moaning from upstairs. (As a side note: for some reason, there is a HIGH incidence of illness and discomfort in this house on Monday nights. I walk in the door and one of the kids is almost ALWAYS in need of something...the worst is when I come in, get all ready for bed and my head hits the pillow--then BAM! crying over the monitor. If someone is getting sick and is going to barf for spike a fever, it will be between 1-2am on a Monday night.) I went upstairs to check on the moaner and was surprised to find the noise coming from BubTar's room. I sent him to the potty, as that is usually the cause for his nighttime discomfort, but it didn't help. I gave him a Tums, in case he had a sour tummy, but that didn't help either. It QUICKLY progressed to writhing and crying, fast breathing, and him trying not to scream. At one point he whisper shouted, "I'M GOING TO SCREAM!" It got so bad that he asked to go to the hospital...which OF COURSE, is just what I wanted to hear after walking in the door from my shift there. I was going to run to the store for gas drops in case that was contributing to the pain, but he vomited some and the pain subsided. I dosed him with Zofran, just in case, and he went to sleep after a bit. The whole thing lasted for about an hour, from mild pain to the vomiting and subsequent relief.

It is actually the second time this has happened to our boy. The weekend before last, he was jumping on the trampoline and suddenly he had abdominal pains. He went to lay down and pretty soon it was severe pain, we thought we might need to take him to the hospital in case it was appendicitis! It was baaaad, just like the other night. The severe pain lasted 10-15 minutes and then he was okay. We thought, crisis averted! Hooray! But when it happened again, it made us think something really is going on with him. He's also been to the school nurse a few times recently for stomach pain.

We saw the pediatrician yesterday. His exam was a little abnormal, tenderness in his abdomen on palpation, but he didn't have rebound tenderness or guarding and his white count was good (I think that might actually have been the first time he's had blood drawn!). She said it could be swollen lymph nodes in his abdomen or something else, like an appy or intussusception, but she didn't think we needed to be sent for imaging immediately, because his white count was okay and his exam wasn't too terrible. If he has another bout of pain, then we'll get some imaging done. This morning he said he had mild pain in the night, but nothing like the previous night. He is back at school today and the nurse and his teacher know to call me if he has any pain. I don't know what is going on with him, but I hope we figure it out soon!

Happy Easter from the 'Tars!

The Theory.

Tell me who this sounds like:

The typical patient with ketotic hypoglycemia is a "toddler", a young child between the ages of 10 months and 4 years. Episodes nearly always occur in the morning after an overnight fast, often longer than usual. Symptoms include those of neuroglycopenia, ketosis, or both. The neuroglycopenic symptoms usually include lethargy and malaise, but may include unresponsiveness or seizures. The principal symptoms of ketosis are anorexia, abdominal discomfort, and nausea, sometimes progressing to vomiting.

If severe, parents usually take the child to a local emergency department, where blood is drawn. The glucose is usually found to be between 35 and 60 mg/dl (1.8-3.1 mMol/L). The total CO2 is usually somewhat low as well, (14-19 mMol/L is typical), and if urine is obtained, high levels of ketones are discovered. Ketones can also be measured in the blood at the bedside (Medisense glucometer). Other routine tests are normal. If given intravenous fluids with saline and dextrose, the child improves dramatically and is usually restored to normal health within a few hours.

A first episode is usually attributed to a "viral infection" or acute gastroenteritis. However, in most of these children one or more additional episodes recur over next few years and become immediately recognizable to the parents. In mild cases, carbohydrates and a few hours of sleep will be enough to end the symptoms.

Precipitating factors, conditions that trigger an episode, may include extended fasting (e.g., missing supper the night before), a low carbohydrate intake the previous day (e.g., a hot dog without a bun), or a stress such as a viral infection. Most children affected by ketotic hypoglycemia have a slender build, many with a weight percentile below height percentile, though without other evidence of malnutrition. Overweight children are rarely affected.

I think that the above information fits KayTar pretty well. Her episodes started in toddlerhood, they frequently occur when she goes too long between feedings or during illness, she is extremely lethargic and unresponsive during them. She has landed in the ER many times with very low glucose numbers even though she isn't clinically dry or dehydrated. I think the underlying mechanism of her episodes might just be ketotic hypoglycemia, which triggers migraine activity causing the light sensitivity and pain that sometimes coincides with them. I think this has been overlooked because we have always focused intensely on the neurological symptoms. The hypoglycemia has often been excused because she has been vomiting from the episodes or from the illness she is sick with, but lately it has become obvious that her numbers are plummeting faster and more dramatically than they should with only a minor disturbance.

To my knowledge, we've never tested her urine for ketones during an episode or at times when she has been hypoglycemic, so that remains to be seen, but I do know that her CO2 has been low during some of her hypoglycemic episodes, too. The treatment for this condition is frequent small high carbohydrate, high protein meals...basically what we have been doing for her since getting the g-tube, and surprise! The episodes have all but disappeared. Her recent "energy crises" are often fixed with Pediasure and sleep, but when she gets sick or starts vomiting, things get a little dicier and sometimes she needs IV fluids. Anyway, it is a THEORY...and nothing more at this point. However if this isn't it, I really feel like it is at least in the right zip code now. The two really great things about this diagnosis, if it were the correct one, are that we could test her urine for ketones during illnesses and correct the errors before it ever progressed to hypoglycemia AND children outgrow it by age 10 usually.

I emailed her pediatrician about it, of course. We'll see what she thinks of it and go from there!

(Not Quite) Wordless Wednesday: The Champ!

I actually have a LOT to talk about right now; healthcare reform passed, I have a new theory about KayTar's episodes, KayTar restarted therapies this week, I'm getting sick...but I am working on exams and everything else will have to wait until I come up for air!

For now, I leave you with a picture of the kid who won the Pinewood Derby last Friday evening! (Josh came in first and KayTar came in second in the non-scouts derby, too!) Josh was out of town, KayTar was very sick, and my dad had to take BubTar to the derby and race for Josh and KayTar. I don't know how we would manage sometimes without family nearby! Sweet little BubTar was just OVER THE MOON when he got home, telling me all about the big win. Josh was pretty adorable too, even though he was out of town, he called SEVERAL times that evening to see if I had results yet. He was so bummed he had to miss the race and I think he was almost as excited as BubTar that his boy had won first place. KayTar was thrilled to find out her little pink hot rod had won her very FIRST trophy, too. The 'Tars swept the derby! Next stop, district finals! :)

All better!

Well, it certainly seems that we aren't totally immune from the Drama of KayTar. She was just in the hospital last month and we NARROWLY (very narrowly) escaped a repeat performance this weekend. I spent most of Friday, pacing around with a churning stomach and elevated heart rate. I knew exactly how close we were to going to the hospital...how close we might be to an episode...and it took my breath away. That anxiety hasn't changed, and it likely never will. However, LIFE is different now. I used to feel like our life was NEVER normal and every time something like this happened, which was incredibly often when she was vomiting nightly from the reflux, having frequent asthma attacks, didn't have the tube and was always borderline for nutrition, couldn't go outside in the sun most days, and was having an episode every two weeks...not to mention the fact she was developmentally delayed across the board; it just reinforced how weird and stressful our life was. It felt like we never got a break. Now, we've gained so much ground, so much NORMALCY, that these setbacks don't drag us down in the same manner. Life used to be 85% abnormal and now I feel like we're functioning at a 75% normalcy rating at the very least. Maybe we're not totally normal, she takes regular medications, gets sick a little more often and gets hit harder than a normal kid, doesn't have the same gross motor skills as her peers, and has a feeding tube, among other things...but the little oddities don't totally consume our lives.

That being said, I think one of these little oddities is the rapid speed at which she decompensates from these little viruses. BubTar has NEVER landed in the hospital following any sort of illness, vomiting or not, without the benefit of a g-tube...and KayTar, geez, it seems like I blink and she's hypoglycemic and we're teetering on the razor's edge of a hospital trip for IV fluids. She vomited ONCE on Thursday, granted it was quite a bit...some of the previous night's dinner and all of the Pediasure she had ingested since...then I started Zofran and Pedialyte. There was never a major gap in fluids that should have triggered such a rapid descent. By Saturday morning her glucose was down to 53 and she was very lethargic. She woke up speaking nonsense, in fact her first words in the morning were, "Why am I on land? It is so hot...get me in the water!" She complained of dizziness, shaky legs, waves of heat...symptoms of hypoglycemia, just like last month when we went to the hospital. She was awake for about an hour, during which I gave her 4 ounces of Pedialyte, before lapsing back to deep and largely unresponsive sleep, poor thing didn't even wake up for a finger stick. Her hand barely twitched when I poked her, that was it. When she woke later, her glucose was rising a bit and I fed her 4 ounces, half Pedialyte/half Pediasure and that seemed to really help. Her behavior normalized and she was on the upswing. I continued the half/half feeds and her numbers rose and she finally peed. Her glucose was up to 85 by the late afternoon. This isn't normal, right? Do your kids tank like this with a little vomiting? We have the added benefit of Zofran and the g-tube...we can stop the vomiting (if/when the Zofran stays down, like it did this time) AND replenish fluids and yet, it isn't enough to skate through a little tummy bug. I'm not exactly sure why she bottoms out so rapidly, but I think it may be connected to the underlying mechanism that causes the neurological episodes.

Enough of that, though, she is much better now. Yesterday, she kept down 3 Pediasures delivered via the tube, and although she gave me a scare yesterday by refusing the Pediasure by mouth and saying it was "yucky", this morning she asked for a cup and has drank a bit...not enough to negate the need for tube feeding today, but enough to let us know she isn't giving up the Pediasure altogether. Good enough for me!

Sick, sick, sick.

KayTar is quite sick. Yesterday she was playing in her room and shouted to me, "Mom! I'm having energy problems! I need my Pediasure!" so I sprinted up the stairs with her cup in hand, laid her in her bed and told her to drink and listen to the radio. I came back down stairs and listened over the monitor. It was silent. I ran back up to check on her and said, "Are you okay? Do you feel weird? Spinny? Are your eyes okay?" I'm thinking "Oh shit, I jinxed her into an episode. Perfect." She said, "I feel weird. Throw up weird." UH-OH. I sprinted to the kitchen for a pan and said, "Please, PLEASE, don't throw up until I get back!" When I got back, she wanted to come downstairs to rest in her baby chair and as soon as we got to the living room, she puked a ton...into the pot, thankfully. I gave Zofran pretty soon after and she had a decent day of intake for being sick. 12 ounces of Pedialyte after the Zofran and a handful of Saltines. She peed twice.

This morning, though, she was feeling worse, shaky and hot, dizzy, unable to stand or walk. I checked her glucose, because the last time we were in the hospital, she had these same symptoms. It was 53, which isn't normal, but it isn't crazy low...like when it has been in the 30's at the hospital. I gave her a 4 ounce bolus of Pedialyte to try and bring it up, but she wouldn't let me give her any more. She said it was making her feel sick, and I figure that keeping 4 ounces IN is better than more than 4 ounces coming right back OUT. She is still so lethargic, though, I rechecked her glucose (64) not long ago and she didn't even wake for the poke. Poor babe. I hope we avoid the hospital, but even MORE than that, I really hope we avoid an episode. When she gets like this it makes me so nervous that one is lurking right around the corner, waiting to pounce on our sick and vulnerable girl.



ETA: Her glucose is up to 85, she finally peed, and I've gotten in three 4 ounce Pedialyte/Pediasure feeds into her over the course of the day. Looks like we have narrowly escaped a trip to the ER! Here's hoping she is on the upside of this thing!

Then/Now

We went to Space Center this week and when I got home and looked through the photos, I realized I had similar shots of BubTar from 2 years ago, almost to the day. I can't believe how much he has grown!

8 months! (knock on wood)

Today marks EIGHT MONTHS since KayTar's last episode.

EIGHT!MONTHS!
(knock on wood)

It is amazing, miraculous, wonderful. They used to torment her every TWO WEEKS. She would have had 16 in this time frame, instead she has had zero. We never thought they would stop.

I still think that the trigger is nutritional/metabolic in nature, that something isn't functioning quite right in the intricate processes of catabolism and anabolism, and that her steady intake of Pediasure is responsible for many of the positive changes we've seen in her health and development, including the decrease in episodes. The last time she was very sick, we took her to the hospital to correct her hypoglycemia and fluid imbalance sooner than we have in the past and I think that kept her from having an episode in a situation when she typically would have. Regardless of the reasons, I'm just glad they have been absent for so long and hope they continue to stay far away from our girl.

This year it is easy to get all of her Pediasures in. Every morning she gets 4 ounces of Pediasure via her g-tube before school, then we send her to school with 8 ounces in a sippy cup. She drinks it during breakfast and snack time at school and when she gets home, she finishes whatever is left and I make her a second cup. We try to get in one more in the evening. Usually by bedtime she has had 2.5-3.5 cans of Pediasure each day, along with food. Next year, in full day Kinder, we aren't sure how we will accomplish the same level of intake. It takes MANY, MANY reminders to get her to drink her Pediasure. If things are busy, she gets distracted. We tube feed her when she doesn't feel like drinking it by mouth. Next year in Kindergarten, she will be busy all the time and be in school full day and it will be a different ballgame. We don't know if she will need to go to the nurse for a full tube feeding at midday or if we need to invest in a pump for her to wear during the day to give her steady amounts of Pediasure throughout the day. We'll figure it out, I'm sure.

We're just glad to know exactly how important it is to her overall well-being, and thankful for her g-tube and the ability it gives us to ensure that she gets what she needs every day. Most of all, we're thankful for EIGHT whole months of peace for our sweet girl...she sure deserves it.

Look! We made it outdoors!

After my previous post, I realized just how frantic life had been lately and made a conscious decision to force a little more LIVING into our days.

Wednesday, KayTar returned to school, I studied while she was gone, then took her out to lunch after school and then we went on a walk together. I also made it a point to spend an entire hour on the sofa with my novel. The weather has been amazing this week, so after school the kids spent some time on the trampoline.

Thursday was very low key, I had been nursing a headache all week and it nearly took me out of commission on Thursday. I managed to do laundry, clean the house, and go through my index cards several times, though. We went outside after school to play with the MoonSand that KayTar got for Christmas. I finally cured my headache with a glass of orange juice of all things! I gave up sodas over a week ago and I guess my body did not agree with the sudden lack of sugars. After fighting that headache for a week in spite of a variety of medications, it was gone with a single glass of orange juice!

Today (Friday), I spent the morning studying, but when KayTar got out of school we went to pick up lunch and ate with BubTar at school, now I'm blogging while KayTar plays Club Penguin, and after BubTar gets out of school we're going to Barnes and Noble for new books and BubTar might be having his best buddy sleepover, too. I'll study while they entertain each other. Saturday night, we are thinking of having friends over for a game night.

So yes, I had a double length Chem class on Wednesday night. Yes, I have a lecture exam in Bio II tomorrow and then a full day's worth of class. Yes, I have a study session for Chem on Sunday. Yes, Chem will be double length again on Monday, followed by an exam on Wednesday. But it doesn't matter how busy life gets...there is always time to fit in some of the fun stuff, too, sometimes it just takes more of a conscious effort to squeeze it in!

Life? What life?

Here's a peek at what I've been up to for the past couple of weeks...

Monday, February 15th:
KayTar has her first sick visit at the pediatrician's office in months AND ends up in the ER.
Miss Chem II.
Miss volunteer shift.

Tuesday-Thursday, February 16-18th:
KayTar is home sick, preempting all studying and party planning goals.

Friday-Saturday, February 19-20th:
Insane party prep!

Sunday, February 21st:
The party!
Collapse into heap.

Monday, February 22nd:
Cram for a Chem II exam.
Cupcake delivery to KayTar's school.
KayTar's birthday lunch.
More cramming.
Chem II exam.
Blue and Gold Party for Cub Scouts (BubTar got a TON of awards!).
Volunteer at the hospital from 10pm-12am.

Tuesday, February 23rd:
Nap.
Mourn over my Chem exam.
Read a novel.
Laundry.
Lazy.

Wednesday, February 24th:
Special Olympics Young Athletes' Day with KayTar.
Pediatrician appointment for BubTar.
Meet up with Josh briefly to pass off BubTar.
Eat in car.
Chem II.
Get Chem II grade, a miraculous 84.
Kick myself for DUMB mistake that cost me my A.

Thursday, February 25th:
Somehow I can't remember a THING about this day. Perhaps I was in a coma? I think there might have been grocery shopping...not entirely sure.

Friday, February 26th:
KayTar spikes a fever that rapidly progressed to a HIGH fever.
Biology II SI session.
Cram for Bio II lab exam.
Sleepless night with sick and HOT KayTar, fever got up to 103.9.

Saturday, February 27th:
Skip Bio II lecture to take KayTar to the pediatrician.
Drop KayTar at my mom's. (the boys were at a scout class)
Barely make it to Bio II in time for the lab exam.
Nurse a sick KayTar.

Sunday, February 28th:
Sick KayTar.
Laundry.
Trip to Target for boxers for BubTar and a bathmat. Sadly exciting as I hadn't been out of the house except for school or the pediatrician for quite sometime.
Relax.
Dinner with my parents.

Monday, March 1st:
Sick KayTar.
Make brightly colored index cards for Bio II.
Chem II.
Volunteer at the hospital from 10pm-12am.

Tuesday, March 2nd:
Sick KayTar.
Study.
Sort clothes for Spring.

Over the next week or so, I have a two DOUBLE-LENGTH Chem II classes, Bio II SI, Bio II lecture exam, Chem II study session, Chem II lecture exam, and the start of another course...just to hit a few of the highlights. Thankfully, Spring Break is just around the corner. I'm going to need it!