Wednesday, June 30, 2010

Monday, June 28, 2010

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:

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

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

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." ;)

Sunday, June 27, 2010

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!

Saturday, June 26, 2010

Our week...

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

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

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


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

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!

Wednesday, June 16, 2010

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 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!

Saturday, June 12, 2010

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.

Friday, June 11, 2010

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.

Wednesday, June 09, 2010

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?

Tuesday, June 08, 2010

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!"?

Sunday, June 06, 2010

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!

Friday, June 04, 2010

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.