Wordless Wednesday: Doodles!

A lot of letters...

KayTar's recent ACTH stimulation test got me thinking about exactly how many procedures/tests/trips to the hospital she has been through in her wee little life! So here we go, in reverse order...

June 2010
* ACTH stimulation test and corresponding labs (IV, labs)

May 2010
* Surgery to replace her g-button (IV, general anesthesia)

February 2010
* ER visit for respiratory illness/vomiting/hypoglycemia (IV fluids, labs, chest x-ray)

December 2009:
* Surgery for g-button replacement (IV, general anesthesia)

November 2009:
* Peanut challenge (IV)

October 2009:
* Scratch test for allergies

July 2009:
* ER visit and overnight stay for a neurological episode (IV fluids, labs, EEG)
* Outpatient labs (just for AJ, I'll specify that part of it was an acylcarnitine panel)

May 2009:
* Outpatient labs

April 2009:
* Outpatient labs

February 2009:
*Scratch test for allergies

January 2009:
* Outpatient labs

November 2008:
* Surgery: g-button placement, musclue biopsy, removal of tonsils and adenoids (IV, general anesthesia)
* ABR (under general, during surgery)

September 2008:
* ABR (failed oral sedation with chloral hydrate)
* ABR (oral sedation with chloral hydrate)
* Outpatient labs

August 2008:
* ER trip and overnight stay for dehydration and hypoglycemia (IV fluids, labs)

November 2007:
* ABR (oral sedation with chloral hydrate)
* KUB (x-ray)

October 2007:
* LP ( with an IV under anesthesia)
* Outpatient labs

September 2007:
* ABR (failed oral sedation)

August 2007:
* 48-hour inpatient EEG
* LP (sedated with ketamine)
* Inpatient labs

July 2007:
* KUB

May 2007:
* CT (IV and sedation)
* ER trip (dermabond for her split nose)

March 2007:
* ABR (oral sedation with chloral hydrate)
* MRI (IV sedation)
* EEG

January 2007:
* ER trip and overnight stay for strep, episode, dehydration, hypoglycemia (IV fluids, labs)
* Outpatient labs

October 2006:
* MRI (IV sedation)
* Outpatient labs
* Outpatient labs

August 2006:
* ER trip for episode (IV fluids, Zofran, labs, CT scan)
* CT scan
* ER trip for episode (IV fluids, EEG, labs)

May 2006:
* Outpatient labs

January 2006:
* ER trip for RSV/tachypnea

December 2005:
* ER trip for pneumonia (chest x-rays, labs)

I *think* that is it...but there are probably a few rounds of testing that I didn't document on the blog (which is mostly how I compiled this list). I didn't include any specialist visits, therapies, or evals on the list...only medical test/procedures. Her medical file at the pediatrician's office is probably 2 inches thick. At checkout I just point and say, "It's the behemoth." ;)

I should be studying for trig...

But planning for school is always more fun than the reality of it, right?

I finally have my schedule set for fall:

Organic Chem + Lab
US History (before 1877)
Music Appreciation
Biological Psych

I registered this morning with only one issue, which was surprising because my advisor is on vacation and I had a hold on my account until I met with someone in person...which is a nightmare with my current schedule (see previous post). Magically, the hold was gone last night! The only issue was that the system told me that I needed approval to take the HISTORY course, the only freshman course in the bunch. I'd think approval would be necessary for the upper level psych class, but nope! Weird. I'll be in class from 8:30am-12:15 on MW and from 11:30-2:15 on TR, and my mom has agreed to keep the kids for me when they get sick so I can still go to school. I am SO GLAD that evening classes will be a thing of the past in two more weeks. We'll get to be a normal FAMILY again, having dinner together and attending activities as a group. Woohoo!

In setting up my schedule, I spent a lot of time on RateMyProfessor. How did people choose classes before this existed? Let me tell you, there are A LOT of frowny face ratings out there, so if someone was to register without knowing anything about the professors, they would be pretty likely to get stuck with a frowny face instructor. I don't go by the faces alone, though, because there are also A LOT of idiot students out there who rate professors poorly because they require them to come to class or read the text or take an exam once in a while. According to the reviews, I chose some decent professors...we'll see if the reality agrees!

I also tentatively chose the courses to round out my degree. I'm a Biological and Physical Sciences major. I'm super excited about my upper level courses. I'm planning to take Human Anatomy, Human Physiology, General Genetics, Human Genetics, Immunology, and Pathogenic Microbiology. Organic Chem I and II are count for this portion of my degree plan, too, but I'm slightly less enthused about those. For the upper level non-science courses that are required, I'm planning to take Biological Psych, Child Psych, Adolescent Psych, and Health Psych. I enjoy biological sciences and psychology, if you couldn't tell. I still have quite a few lower level classes to knock out, but I can't wait to get to the GOOD stuff!

Our week...

Monday
Morning VBS for BubTar
Midday ACTH stimulation test for KayTar
Evening Trig exam for me
Evening Cub Scout crossing over ceremony for BubTar

Tuesday
Morning VBS for KayTar and BubTar
Morning search for a Pillow Pet unicorn for me (promised KayTar one for the NEEDLING on Monday)
Midday pick-up from VBS
Afternoon OT for KayTar
Evening Trig class for me
Evening VBS for the rest of the family

Wednesday
Morning VBS for KayTar and BubTar
Morning shopping for me (shirts and swimsuit)
Midday pick-up from VBS
Afternoon swim (for 10 minutes before the thunder started)
Evening dinner with my parents, followed by my volunteer shift at the hospital
Evening VBS for the rest of the family

Thursday
Morning VBS for KayTar and BubTar
Morning house cleaning for me
Midday pick-up from VBS
Afternoon trig homework for me
Afternoon playtime at home for the kids
Evening Trig class for me
Evening VBS for the rest of the family
Nighttime basketball practice for BubTar

Friday
Morning VBS for KayTar and BubTar
Morning attempt at getting the oil changed and car inspected (I got a ticket last week)...but the inspection machine was broken
Morning delivery and training on KayTar's new portable feeding pump! YAY!
Midday pick-up from VBS
Afternoon PT for KayTar
Late afternoon relaxation and trial run of portable pump
Evening VBS for all of us!
Evening headache for KayTar on the way home from VBS. (I panicked and thought EPISODE, NOOOOO!)
Nighttime fever of 100.8 for KayTar (at least she made it through the week!)
Nighttime snack of chili cheese fries and sundaes from DQ. Mmmm.

She's eating right now! No hands, no mouth, no sitting still for a bolus! Very exciting!

Things'll be great when you're downtown...

Today BubTar and I dropped KayTar at her camp and then drove to the university I will be attending in the fall. It is right in the heart of downtown, which is pretty cool for us suburbanites! Although we frequent the medical center on a near weekly basis, we don't really go downtown very often. I think BubTar has been there twice (now 3 times) in his life, all this year. Driving and parking in downtown is always an adventure, those damn one way streets and no turn streets and illusive public parking garages...but we survived it. I found a garage not too far from campus and although I had no cash (note to self: start carrying cash), the guy let me park and then use the ATM to bring him the money. Once we were parked and I figured out where we had ended up, we started the trek to the campus. SON OF A BISCUIT, it was hot today. It was 96, but with the heat index it was above 100. BubTar and I are not outdoor people, we don't like walking and we don't like sweating...today we did both. I'm definitely dreading hauling my backpack around in the heat of August to and from campus.

We dropped off my transcripts and met briefly with my advisor. I like him. He chatted with BubTar and tried to recruit him for a future geology degree. I'd never been to the campus before, so we had to do some wandering around to find our way, but it was nice to look around and let BubTar see where I'll be taking my classes. After we finished up, we trekked back to the garage, but we decided to have lunch before leaving. The nice thing about downtown is that everything is right there. You can just walk down the block and choose from a dozen restaurants. With all of those options, we chose Subway, of course. We sat there, enjoying the air conditioning and watching people out the window while we ate. Downtown is good for people watching. Then we headed on our way.

I'm excited about school in the fall. I think that once I get used to the driving/parking/walking aspects of it, being downtown for school will be pretty cool...especially once fall and winter hit. Now I know that I need to familiarize myself with that part of town a bit better, learn where various points of interest are, and maybe learn the Metro schedule, too. I definitely need to buy my parking pass so I can start parking in the student garages. I also should learn where those are. Heh. It will be an adjustment from my cozy little suburban community college, but I think it will be a lot of fun, too.


When I told BubTar we would be going to my university today, he said, "Can you get me a business suit to wear for it?" Ha! He wanted to look professional for our meeting. Clearly, we opted for a more casual look...I think being in a business suit today might have caused heat stroke!

10 things I HAVE done...

1. Been flown to NYC for a photo shoot.

2. Was in a SELF magazine article.

3. Gave speeches in both my state and our nation's capitols.

4. Met Jessica Alba, Keri Russell, and Regina King...among others.

5. Had a driver chauffeur me around both NYC and DC.

6. Graduated high school at 16.

7. Had a lake named after me in my birth-state of Alaska.

8. Spent the night in an airport in Atlanta.

9. Was in the newspaper here in my city and in all the other major cities in our state.

10. Had a television crew in my living room, and was subsequently on local TV news.

10 things I've never done...

1. Lived alone.

2. Bought furniture.

3. Had a pedicure.

4. Danced in public.

5. Been to a strip club.

6. Had a sip of beer that I didn't HATE.

7. Been on a date with anyone other than my husband.

8. Read the Twilight series.

9. Had sex in a vehicle.

10. Had a cavity.

Songs and Memories

Everyone has songs that they can't hear without immediately thinking of a specific person, place, or time in their life, for whatever reason. These are a few mine...

Somewhere Over The Rainbow (Judy Garland) and Mr. Sandman (The Chordettes) both remind me of my mother.

The River of Dreams (Billy Joel) reminds me of my dad.

Bulls on Parade (Rage Against the Machine) reminds me of my sister.

Zero (Smashing Pumpkins) reminds me of Josh.

Your Song (Elton John) reminds me of BubTar.

Hey There Delilah (Plain White T's) reminds me of KayTar.

There are a million more that remind me of these people or others, and even more still that remind me of a certain place or an important day or a certain summer or a specific year of my life, but these are the ones that are probably ingrained the deepest. What about you?

Back to school!

My summer semester started last night. 3.5 hours of Trig per night, 3 nights a week...with roughly 2 hours of homework each day. Are you jealous? Last night I was the person in class with the ANNOYING cough. I hate being that person. At the first break, I even went and took my puffer a little bit early and while it relieved the tightness, it didn't kick the cough. I had an asthma attack on Saturday night and since then I've been requiring my albuterol around the clock again, along with the Symbicort...I'm still not symptom-free, though. This morning I woke up and I'm pretty congested, so I guess all of this is just a precursor for another chest cold. BOO! What has happened to my lungs?! They used to be terrible, but I kind of outgrew all of it over the years, then this last cold/bronchitis set me back all those year. I'm not thrilled with this development. Anyway, I digress...back to school...

The plan for this summer was to take Trig for the 1st 5 weeks, then follow it with PreCal for the 2nd 5 weeks, but I changed my mind. We need a little bit of a break this summer after our Spring semester (I was in class M/W nights. Josh was in class T/Th nights. I volunteered at the hospital after class on Monday nights and didn't get home until about 1:30am. I had class on Saturdays from 7:30am-3:30pm. It was intense.) so I decided to drop PreCal and take an 8-week online Lit and Film class with Josh instead. It will mean that I don't have to go to class for FIVE GLORIOUS WEEKS this summer. I'll get to go to BubTar's basketball practices and games, we'll get to plan a vacation, we'll get to eat dinner together. It will be lovely!

In other news, we bought the boy a basketball goal this weekend. This will be his first experience playing a team sport, and he has little to no experience with it, so we thought it would be nice to have somewhere for him to practice at home. I'm excited because I LOVE basketball...if only it weren't so hot that we can only stand to play for 10 minutes at a time! We are SO not sports people in this house. We watch ZERO sports at home, we played ZERO sports ourselves...but we want BubTar to have the opportunity to try a lot of things and find his own niche. I have to say that after swim team last summer and the heat stroke we risked by attending practices and meets, we were really, really, really hoping that he would pick and INDOOR sport this summer, and he did! Success! Or should I say "Swish!"?

More where that came from...

I finally got around to posting new photos on my photo blog! One of my goals for the summer is to spend more time behind the camera, as I've barely touched it this year outside of the mandatory parental documentation type photos. The whole first page is full of new photos that I absolutely love. It was difficult to narrow it down (the ones you see above aren't posted over there)! Feel free to head over there and check it out!

Post-Endocrine Update!

Today was our much anticipated endocrinology consultation!

KayTar was looking fabulous, as usual.


When we got on the elevator up from the parking garage, we walked into a cloud of men's cologne. Very stinky cologne, according to KayTar. She grabbed her nose and exclaimed, "Ooooh, something STINKY is in HERE!" I tried to shush her, but she continued to lament the odor until the man left the elevator on the ground floor. We continued upwards, exited that elevator, and walked down the hall to the next elevators we needed. While we walked, I told KayTar that the smell was probably someone's cologne and instead of shouting about it, she should just try not to sniff it, quietly. The doors opened and Stinky Man was standing there. Uh oh! We got on the elevator and KayTar exclaimed, "Ugh! This elevator stinks, too!!" Whoops, so much for that conversation we just had! I wonder if Stinky Man took the not-so-subtle hint. ;)

The actual appointment went great. KayTar is such an old pro at specialist visit, I never have a rough time with her. She's well behaved, patient, and loves the opportunity to talk to the doctor. The only time she gets a little bored is when I'm talking and she doesn't get a turn for a while. The girl looooves an audience. Her height is 41.89 inches, and she weighs 38.36 pounds, according to their scale. The endocrinologist agrees that we're on to something. She was impressed by my record keeping (they asked us to check KayTar's glucose each morning and prior to every meal, and I've been tracking that and her intake religiously for a few weeks) and now we get to give it a rest. Hooray! We'll continue to check her glucose when her she gets sick or shows hypoglycemic symptoms, but we don't have to follow it quite so closely.

The plan is this:

First, they have to rule out adrenal insufficiency. They don't expect it to BE adrenal insufficiency, but it is the first thing they need to rule out. On the 21st, she has to have an adrenal stimulation test. Also, until then we have to treat her like she has it, so I had to be trained to give her an IM injection of Solu-Cortef, which we have to keep on hand in case she becomes unresponsive. It is all precautionary and they feel like it is a non-issue. She did say that KayTar's long term use of Qvar (inhaled corticosteroid for asthma prevention) is a risk factor, though, but it only causes adrenal insuffiency very, VERY rarely.

Second, I have to make KayTar an appointment with a new geneticist (at our same clinic) who specializes in hypoglycemia, so she can be worked up for genetic causes, such as the glycogen storage diseases (especially type 0).

Third, it looks like she'll need to do an inpatient fast, which sounds like LOADS of fun. No food or drink (other than water) for as long as it takes for her to become hypoglycemic, so they can take blood for all the labs they need from her when she is symptomatic. It could be 12, 18, as many as 24-36 hours in some cases. I'm pretty sure KayTar will be on the early end of that scale, but when she starts to feel hypoglycemic, she gets panicky and DEMANDS Pediasure or another form of energy. She gets shaky and shouts, "I need energy! Get me energy now!" Of course, this doesn't happen when she is sick and slips into hypoglycemia...but when she's healthy she recognizes that sensation. I don't look forward to denying her that when she is in a panic, but we do want to diagnose this and treat her appropriately.

After all of that, if it is all normal, we'll come out when a diagnosis of ketotic hypoglycemia, if nothing else. It is a diagnosis of exclusion, so first we have to do the excluding. If we find an answer along the way, that would be mighty fine, too.

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.