Tuesday, July 31, 2007


Josh and I pulled into our driveway well past one in the morning on Saturday night. I just couldn't resist the magnetic pull of my children's sleeping bodies, even as Josh advised against it as we were both beyond exhausted. I crept into KayTar's room, stepping on every creaky floorboard in my haste to reach her. I stroked her blonde curls, placed my hand on her chest to feel it rise and fall with each breath she took, and slipped my other hand into her small fists. "Mommy is home, love. I couldn't wait to see you in the morning." I signed "I love you." and pressed it onto her forehead, as is our little ritual. I moved upstairs to BubTar's bedroom and scooped him into my arms to feel his warmth and breath in the sleepy scent of him. I jostled him just a bit, secretly hoping he would wake enough to register my arrival, but he continued to doze peacefully, smacking his rosebud lips. I brushed his hair back, kissed his rosy cheeks, and tucked him back into his covers. My heart ached to have them so close and still not fully be with them.

In the morning, BubTar climbed into our bed to watch cartoons just like every other morning. I don't think he even registered that I was gone and had returned. I was just there, as expected, like the sofa. You expect it to be there when it is time to sit down, so seeing it there isn't much of a shock. Every thing has its place, moms included. I asked him to snuggle up next to me, but he said, "But Mom, I can't see the TV from there!" When asked if he missed me, he replied, "Well, I don't know. What do you think?" He is so polite and careful not to offend that he could never bring himself to outright say that he did not, in fact, miss me...but his answer was telling in its own way. I am glad that he had too much fun to waste any time missing me, I think I would have felt worse to come home and hear he had really, truly missed me. KayTar's reaction was much the same. I was just home, life was as it should be. I was able to draw a better reaction out of her by playing using one of our special games, once it was done, she exclaimed "My mom!" and snuggled into my chest. Perhaps she thought I was a mirage at first. I was able to procure some excellent cuddle time after revealing myself as the True Mom. And life continued as if I'd never left.

KayTar's nervous system behaved itself for the duration, there was an increase in the involuntary eye movements, but that was the only noteworthy happening. It makes me feel good that I was able to go and nothing went awry. She's learned new things of course, she now says "Want (insert object of desire here)." instead of just naming the object repeatedly. She's added the CK sound onto "Duck." finally completing the word. She's got new dance moves (think of shaking invisible maracas). And she can finally push her baby dolls in the stroller. She never had enough balance to do so before. BubTar is BubTar. I brought him home a WebKinz from the trip and now I am "The best mom ever." but I don't really care for that title being earned through gifts, which we have discussed. He is thoroughly enjoying my swag as well. He's such a character, who knew glow-in-the-dark martini glasses would be perfect for morning milk?

It's good to be home.

Thursday, July 26, 2007


Since I can't hold these two precious things in my arms for the next few days, if you all could help me hold them in thoughts and prayers, that'd be wonderful.


Tuesday, July 24, 2007


Things left to pack:


Things KayTar has learned or achieved in the past two weeks:

How to say "No."

How to suck from a straw. Of course she can't figure out how to swallow it from that point, but it is a start.

She touched Playdoh, voluntarily and without gagging!

Things I've dreamed about recently:

Harry Potter

KayTar's episodes

Harry Potter

KayTar's episodes

Harry Potter

That someone had taken an interested in KayTar's medical history and went through the trouble of acquiring her medical files to investigate. This unknown agent was mailing us specific test results, with certain items highlighted to give us more clarity on the important parts of her case. He or she would scribble notes in the margins of various papers and send them on to us, each one giving us a new piece of the puzzle. We had just received one more, what I thought to be the final piece, and we were about to open it, when Josh woke me up for breakfast. *sigh* Now I'll never know.

That Grawp was now one of KayTar's medical specialists...except no one could understand his notes in her file and he kept breaking all of his pencils. Poor Grawpy.

KayTar's episodes.

I awoke with a start a few nights ago, because I had heard a loud noise and I was convinced SOMEONE had apparated into my bedroom. Sadly, the realization swept over me that I am a lowly Muggle, and surely no one would be apparating into my bedroom.

Getting lost in an airport. Great.

Things to do today:




Better go get started.


I wrote a different post earlier, but meh. I didn't feel like posting it. Here is the short version: WAH! I'm so nervous about leaving KayTar and acid might be eating right through the lining of my stomach as we speak, but YAY! I'm still excited about my trip. Now, let's move along.

My lovely little anxiety issues coupled with the fact that I just found out I lost my part time job has made me feel a bit disjointed today. Oh, you didn't know I had a part time job, did you? Its one of those off-blog things, but today I'm so pissed it is now on-blog, what are they going to do? Dooce me? Oops, too late! So the story goes that I've been doing part time after hours and work from home assignments for a local private school for a year. We've had several meetings and phone calls in which no one has ever mentioned the fact that would no longer be needing me. In fact, I spent at least 8 hours on-site this weekend, when I would have rather been with Harry Potter. Well, last night I was on-site again and I noticed the in-boxes had been changed, and I no longer had one. Oh, and my job description? It was next to someone else's name. Hmmm, interesting right? So I emailed my boss and she replied in a tone that relayed that I should have known. Riiiiight. So when I was in the office for a meeting last week and I was asking questions about the start date for the next term and about projects to be done, and they answered without mentioning the whole "You won't be working here then." side note, they just assumed I knew I wasn't returning and had a personal curiosity in the matter. What the hell? There is more, but I don't want to get into it. Damn good thing I happened to look at the boxes, or I'd think I still had a job! I shouldn't be surprised. These are the same people who disclosed KayTar's medical information without my permission as a reason why other relatives were leaving this particular establishment, when she had nothing to do with it. A letter to this effect was sent out to the parents of students, school-wide, without my permission. Okay, I'm backing away slowly from this topic, because the rage threatens to consume. It is less about the "You don't have a job." and more about the way it was handled...that is to say, NOT HANDLED, but rather left for me to determine on my own, once they had worked me sufficiently. Stepping away now...

On cheerier subjects, we took the kids to the park this weekend. When loading the kids into the car, I set my camera on top the roof and we drove away. At the first turn, we heard "Clunk, clunk, clunk." And Josh turned to me and said "Your camera was up there." And I almost died. We stopped the car and Josh went to look for the remnants and instead he found my camera, just fine, still on top the car. Wow. It was amazing.

See what I would have missed without it?

Wouldn't you be SO sad if the camera had broken?

Monday, July 23, 2007

Did I ever show you this?

The video is about a year old, but classic nonetheless.

I can never decided if my favorite part is the fact that she just rolls over and grabs her bottle like nothing happened or the fact that BubTar is oblivious to the whole thing. What say you?

ETA: I hope everyone knows that if KayTar had shown the SLIGHTEST distress, the camera would have been abandoned to rescue her...however, she didn't and we've all gotten a kick out of the result. I just happened to be trying to secretly film her standing in her crib, which at the time was a brand new trick, and got this instead.

Saturday, July 21, 2007

This Important Hiatus Brought to You By...

See you in a couple of days.

Finished about 1pm today. Wow. Just wow. Can't say more, because I don't want to spoil it for anyone...but if you want to chat about it, feel free to email me. Because, WOW.

Thursday, July 19, 2007

Where was I?

Oh yes, I was about to post photos of my Incredibly cute children, when I was so rudely interrupted by the malfunctioning of KayTar's nervous system. The nerve of it! Heh. Bad joke. But still, heh.

Are you okay?

Maybe you need a hug.

And a kiss.

Hey you! Mamarazzi! Those photos are private! We shall get you for this!

Fleeing the crime scene, after brutally attacking the Mamarazzi with hugs and kisses.

Wednesday, July 18, 2007

All bey-yah.

Alternately entitled, "Fervently Knocking on Wood".

Lil' Miss KayTar woke at 10:30 this morning, in a wonderfully playful mood. I took the opportunity to snap some fun photos of the sweet girl.

I'd say we are hoping things are back to normal...but I'm starting to question exactly what normal means for us. Really, wasn't this past week normal? Par for the KayTar course? I could search the archives and find more than a dozen similar scenarios. So instead of wishing for normal, I am wishing for uneventful. No episodes, no vomiting, no illness, no pain, for a while here...nothing more than carefree days and playfulness, which is what every childhood should be filled with and what I wish KayTar could have a bit more of.


It is 12:13 as I begin this post. We tucked the children in at bedtime and all was well. BubTar went to sleep without a peep, and KayTar spent a good amount of time talking with herself in her crib about many important things. She talked to so long, in fact, that I decided to go in and check on her...give her an extra kiss, remind her she should sleep soon. The first thing to hit me was the smell. It was that grotesquely dirty diaper smell, the kind that burns your nostrils. I reached in to scoop her up and my hand touched something slimy. "Surely she does not have poop in her armpits!" I thought. And I was correct. I flipped the light on and saw she was covered in vomit. I called Josh, "Josh! Help!", which KayTar repeatedly adorably. When he came in we did the usual divide and conquer, he strips and wipes her down, I run her bath. He drops her off with me in the bathroom, then strips her sheets. Once she is bathed, I hand her off to him for her pajamas and I put fresh sheets in the crib. Unfortunately, although we have many spare crib sheets, we do not have many Gees (pronounced like key), KayTar's beloved blankey. We do have two, though, but on a fluke, she had them BOTH in bed with her tonight. So here I am at 12:21, just moving Gee from the washer to the dryer, while KayTar waits for it to accompany her to Dreamland. There is no sleep without Gee, so here we wait. In the morning, KayTar is supposed to have a sedated ABR. She isn't to drink anything other than clear liquids from 2am-6am, and then nothing at all after that. These sedations are the type she doesn't handle so well, and I am reluctant to put her body through that when it is already struggling so hard this week. I hate to reschedule, because it will take us 1-2 months for another appointment, but it is the decision I am leaning towards. A toddler who is still awake at 12:25, will not be pleasant or well rested when I wake her at 6:45am and refuse to give her anything to drink. A toddler whose body is already staging a mini-rebellion to the week's events, should not be awakened prematurely. A toddler who hasn't quite been intaking enough fluids probably shouldn't fast for a half-day. So difficult to reschedule or not, I think we will skip it. Her body needs to recuperate and I think this isn't going to help achieve that. Any new information we would glean tomorrow will still be there in a month or two waiting to be discovered. And hopefully, by then, KayTar's body will feel up to letting us in on those secrets.

Oh Gee, how I wish you were dry already.

Tuesday, July 17, 2007

Still home.

Thankfully. She slept through the night and seems fine this morning, albeit a bit lethargic. She hasn't wet a diaper since yesterday evening, so I'm trying to push fluids this morning, but she isn't too excited about it. It isn't critical yet, we won't have to go dashing off to the hospital as long as she does start drinking and we get her to wet a diaper. Since she isn't vomiting any longer, whatever goes in should stay in at this point and it can only get better. We canceled therapy for the day. We are just taking it easy today, hoping for a touch of normalcy and a few wet diapers.

That's right, baby girl, drink. No seriously, stop biting on the nipple and ACTUALLY drink. Please? For mommy? Pretty please?

ETA: She's been eating and drinking today! She's also had 3 wet diapers. We're good. Off to an ABR bright and early tomorrow AM, so I'll post once that is all taken care of.

Monday, July 16, 2007

Vomit Vixen it is.

Sorry for the repeated cryptic updates on the last post. We have not gone to the hospital yet. She seems to be doing better, except for a oh-so-slight head tilt that has presented itself along with a touch of disorientation and dizziness and some definite misbehavior of the eyeballs; misalignment, rolling, and so forth. She is up and around, has had a bit to drink, and even eaten some without incident. It still doesn't feel quite right though, and until those eyeballs (and various other things) start behaving themselves, I'm not going to truly feel like we are out of the woods this time. It has been so strange, this inability for her to fully escape it. I'm nervous and on edge and calling out, "KayTar are you okay? Look at Mommy, please." every 127 seconds worried I'm losing her to it again. I hope all the worrying is for naught, and that we will stay here, safely at home tonight with a KayTar who continues to be in possession of herself. But at the first sign of her slipping away, we will scoop her up and off to the ER we will go.

The Big E

This post was supposed to be different. I sat down last night to do a lighthearted, photo-heavy post. I uploaded the first photo and heard KayTar scream. Josh and I both went in to check on her and she was screaming and grabbing her eyes. Josh scooped her up and I stroked her head. At first we just thought maybe her eyes had been moving and she was upset about it, but she continued to scream. And then they moved. And then they moved again. And again. And she was still screaming and clawing her eyes. It was clear that something was happening. Episode. We turned off all the lights and put her in her chair. Josh went to put BubTar to bed and I sat with KayTar. We gave her a suppository. She was vomiting and the pain was coming in intense waves. She could quiet herself for a few moments before another wave would rip through her. It was definitely originating in or behind the eyes, because she kept grabbing them. No head tilt. I don't know what her eyes were doing, because we were in a darkened room and couldn't see them. Josh and I laid on the living room floor next to her chair in the dark while she was quiet, not daring to move or make a sound. It lasted for about 2 hours, and then we moved her into her bed where she slept through the night. She's actually sleeping while I write this.

17 days. They're moving closer again. We had that break, but it seems to be over. I'm going to BlogHer in 10 days and will be gone for 3 days. It is going to kill me if she has one while I am away...to not be with her while she's going through something like that would just be unbearable. Yesterday we had the most run of the mill day, I can't think of a single trigger. She ate well, slept well, her schedule was normal. I don't think she left the house all day, so no car trips either. She was just playing in her bedroom with BubTar when it started.

Last night, when I took my turn to tuck BubTar in, he told me an "Adventure Story". These are stories we take turns making up for each other at bedtime. This was his story:

"One day BubTar and Mommy were walking in the woods. Daddy was exploring a spooky castle. KayTar wasn't there, because she was too sick. Daddy got trapped by the evil villian in the spooky castle and then he got you, too. I had to ride my boogie board across the Lake of Pools (this is a lot of swimming pools put together to make a lake) and save you all. So I did. And then we went home. Oh, and KayTar WAS there. She threw up everywhere on the way home. She threw up on every trail where there was not grass, so every time the evil villian tried to follow us, he slipped and fell in it. The End."

Nice to know that episodes are now making their way into our make-believe story land. And evidently, they are also a handy super power. Truly, it was a bit like a stab in the heart when KayTar was sidelined from the story due to illness...I mean, can't she even escape from it in the pretend realm? But then when he brought her back and she ended up saving the day through her, ahem, special ability, it was very entertaining. I thought it was quite clever of BubTar to find a way to include her all on his own, in spite of her illness.

The Boogie Boarder and the Puking Princess (or Vomit Vixen? Gagging Girl?)

ETA: She's having another today. Right now she's quiet (for a moment) so I snuck on to update. Two days in a row. Damn. This is too much.

ETA (again): I think it is over. It started about 11:15 this morning and she seemed to come out of it about 1pm. She is in her crib resting right now...I hope she stays better. At least it wasn't 8 hours long.

ETA (again, again): Something isn't right. She still isn't back at baseline. I picked her up a little while ago and she went totally limp and wouldn't respond or move at all for 1-2 minutes (which seemed like eternity). She is still having problems with her eyes. But she isn't in pain (thankfully), she just isn't herself yet. If she isn't back to normal by the time Josh gets home (in about 30-45 minutes) then the neuro and pediatrician think it is a good idea to bring her in. They can give her fluids and the neurologist said they might need to give her medication to help her come out of it. I'll keep you posted as best I can.

Thursday, July 12, 2007

Shut up already...

Let me preface this by saying this week has made me tired. It is Friday morning, and this week I have talked to the pediatrician on the phone twice, and emailed her four times. I am so tired of it, I can't help but think she is probably a bit tired of it, too. I feel like I talk about these things ad nauseum and I really wish I was writing about something else, anything else. But I I have too much grumbling around inside me and I have to put words to it, so I can put it away.

Tuesday we had a private speech therapy evaluation. It went really well. The therapist was really nice and is excited to start working with KayTar. She wants her twice a week, whereas through the state she only qualifies for once a month. She was able to get KayTar to close her lips around a straw! First time ever! The private OT and ST are going to work together to really work intensively on her oromotor skills, maybe one day we will be able to give up the bottle!

But, while we were in the one hour evaluation, a couple of odd things happened.

First, she noticed KayTar doing a strange blinking thing. Now, we've noticed it for about a week. It just looks like excessive blinking, and the blinks last longer than a typical blink, kind of like a squeeze...but we hadn't seen it enough to know if it was weird or not, if that even makes sense. Well, during the one hour we were there, it probably happened upwards of 20 times. And if it caused the ST to ask me about it, it is probably out of the ordinary.

Second, the ST noticed her tensing her shoulders, like a shrug, in a way that seemed involuntary. She kept count of the times it happened, because it struck her as odd. She also said when it happened she went a little pale. During the hour, it happened about five times. I've never seen KayTar do this one before. I'm assuming both of these things were triggered by stress. We've seen the blinking before, as I said, but to give you an idea I only saw it four times throughout the entire day outside of the evaluation. For it to happen upwards of 20 times within an hour is excessive. We were with a new therapist in a new room and stress is the only reason I can think of behind it.

I don't know what the hell is going on, really. All these things, even outside of the episodes, the drop attacks, the eye deviations, now the blinking and the shrugging...what is going on? Is it seizure? At this point, I really do feel like the Girl Who Cried Seizure. I just want to shut up about it. But even assuming none of it is seizure, what is it? Why is it happening? Is it muscle spasms brought on by stress? Motor tics? Does it even matter what it is? Is it doing any good to keep documenting it all? Or am I just making it harder on myself? Does it do any good to keep updating the pediatrician when these new things happen? Or am I just pestering her? They can only do so much, and they are probably doing most of it already.

Things are good. So good. She is thriving! I just want be able to focus on that and leave everything else behind. But I can't. Because several times a day when I'm looking at her beautiful face, her eyes dart away of their own accord and I can't not notice it. Or like yesterday, when I asked her for a high five she raised her hand and started moving it towards mine and her eyes danced away. She froze, her hand suspended, still halfway between us. Then her eyes came back a few seconds later and she completed the motion she had already begun. I can't not see something like that. Or when she noticed her brother wasn't here yesterday and she got upset her eyes began to blink and squeeze, blink and squeeze. I notice. I can't pretend I don't. Or when she goes into one of those horrid episodes and she just isn't there anymore, she just isn't fully herself for such a long period of time. I can't just let it go like it isn't happening. I want to know why it is happening, all of it.

I know others notice. They ask me about it, just like the therapist did. My parents and in-laws do the same. After I've noticed a quirk for a few days, I'll casually mention it to Josh, and he always reaffirms what I've noticed. But it FEELS like I'm the only one who notices, and I can't explain that feeling. I feel like if I just shut my eyes, it would go away. Or if I stopped talking about it, there would be nothing more that needed to be said. But that isn't the truth and I know it. It just feels so true right now, and all I want is to close my eyes for a little while...but I just can't take my eyes off this face.

Wednesday, July 11, 2007

He's a kid.

This week, BubTar was invited out with not one, but TWO friends. This has never happened before. He's been to birthday parties (with Josh and/or I present) or to his grandparent's homes unaccompanied, but never spent the day on his own with friends. Today he was invited to go have lunch at McDonald's, then to a showing of Ratatouille, and then possibly over to his friend's home, depending on the time. Friday we are going to meet his friend at McDonald's to breakfast (I know! So much trans/saturated/oogy fat in one week! But it is the price of a 5 year old social life, I suppose.) and then he is going to go play with them for a while.

With these influx of social invitations, I am struck once again by the fact I now have a KID. A KID! Who would've known? I know he is starting Kinder in the fall, but I think this emerging life outside of our home and family is what has really made it sink in. He is growing up! You just don't notice it. After the first invitation, I called Josh and said "Is it time for this? Is he old enough? Already? You're sure then? Really? He can go OUT WITH FRIENDS, without us? You're positive?" (Josh's answers were: I guess. Sure. Yeah. Yes. I said yes. YES, KYLA. Seriously, Kyla, YES.) Then I asked the same question on a forum I frequent. It just doesn't seem like he is that old. I remember when I started visiting friends without my parents...but can he really be that old?

This guy?



While we are on the subject of BubTar, I need some assistance from the wise Internets.

Can someone PLEASE come up with a plausible explanation for why the Autobots look like this:

As he describes it: "They look so mad and sad and have a frown and tears on their cheeks. Bad guys!"

While the Decepticons look like this:

As he describes it: "So happy! Look at the big smile! HAVE to be good guys!"

Because I? Am so tired of arguing about it 2,563,954,871 times per day.

Monday, July 09, 2007

The problem with a two year old who can read is...

When you pull up the list of DVR recordings, she immediately starts demanding the shows she sees on the list.

KayTar: *scanning the list* How 'bout Owwald?

Me: No.

KayTar: How 'bout BobBob BobPants?

Me: No.

KayTar: How 'bout A-Doo-doo? (Pinky Dinky Doo)

Me: No.

KayTar: How 'bout A-Doo-doo?

Me: No.

KayTar: *walks to the TV, points directly at Pinky Dinky Doo listing* What does 'at say?

Me: Pinky Dinky Doo.

KayTar: OKAY!

Drat, she got me again.

This day in Herstory

Two years ago on this day, KayTar looked like this:

And she ate:
Breakfast: Formula
Lunch: Formula
Dinner: Formula
Drinks: Formula

Last year on this day, KayTar looked like this:

Fierce, eh?

And she ate:
Breakfast: Slept through
Lunch: 2 YoBaby fruit and cereal yogurts
Dinner: Vegetable beef and banana apple dessert
Drinks: 2 Pediasures

Today, KayTar looks like this:

And she has eaten:
Breakfast: Refused
Lunch: Sweet potatoes and Corn; green beans
Dinner: To be decided
Drinks: Jugo con Miralax (juice with Miralax)

Doesn't seem like the amount of food that powered that lazy bald baby body should be able to power this active curly-headed toddler body, and yet, here we are.

PS: Yes, we're back to food tracking. *sigh* It is 3pm and she has had exactly 170 calories.

Sunday, July 08, 2007

Scenes from a Sunday

The scene: BubTar is opening and closing an umbrella, much to KayTar's delight. Each time he opens it, she shrieks with laughter.

BubTar exclaims, "She always likes it when I can get it up."

Oh, BubTar, what a choice of words. You are funny beyond your years.

Josh and I giggled about this one for quite a while.


The scene: BubTar and KayTar are sitting with me.

I say, "Who smells like poop?"

KayTar grabs my nose and says "I smelly. Ooo-wee!"

Not only was this funny, it also shows understanding of an unusual question and a very clever retort. Go KayTar!


The scene: BubTar and KayTar are sitting on their respective potties. (we aren't working on potty training, just letting her "practice" being like BubTar)

BubTar points at KayTar and shouts, "You'll have to be potty trained!"

KayTar shouts, "Choo! Choo!" in reply.

Everyone loves to ride the Potty Train.

Friday, July 06, 2007

Short and Sweet, unlike the past two days.

Because my brain is very tired, I'm going to do this post a bit differently. I am leaving out all manner of medical gobbledygook, because it all boils down to the running theme of "We don't really know what it going on." and I don't have the energy to type out all the various Theories of Could-Be.

The appointment went wonderfully. I walked away with good information and a greater understanding of her mutation and what it might and might not mean, also I have learned a few more Theories of Could-Be. The geneticist believes that her mutation is inconsequential. He said that while it is not within the range of what can be considered normal, it is not affecting the amino acids, which means it should be benign. He wants Josh and I to be tested for the mutation, just to rule it out definitively as a cause. He wants to run further tests, but I'll get to that later.


Again, the appointment went well, much better than the previous visit. He sent us for x-rays of her colon, which extended our day a bit. We got the results today. No structural abnormalities, but it was quite full. We'll up her Miralax for a couple days to try and move it all along in a timely manner. No Theories of Could-Be...just lots of poo.

Once again, it went very well. Now that KayTar is no longer terrified of doctors, our appointments go much smoother. We discussed quite a few things (more Theories of Could-Be) and it was informative and reassuring. We scheduled a 48 hour EEG for October 10th. That was the soonest WITH string pulling. The first available was not until February 2008. The nurse said they have frequent cancellations, so they will call if a slot opens earlier than October. The EEG will be 48 hours, unless they do not capture anything in that window, in which case it will be extended for up to a week, I believe. If we have enough advanced notice, we will take her out of town right before the hospital stay, to possibly prime her for a big event. I know it sounds awful, but it is the only possible trigger we know of, and we'd really like to map one of these episodes. While she is inpatient, they will do an LP. The geneticist and neurologist are coordinating their efforts to determine what other tests should be run while she is already in the hospital, so I'm not entirely sure what else will be in the works.

We were at the hospital from 9 am to a bit past 5 yesterday, with a brief jaunt to the Children's Museum thrown in for good measure. I felt like I had been placed beaten with reeds when I laid down for bed last night. My whole body ached. I went to bed at midnight, per the usual, and woke at 6:30 to get ready for our morning appointment. I am not a morning person. Really, really not. I'm generally up by 8 in the morning...but 6:30 is a stretch for me. I am wiped out.

KayTar was amazingly well-behaved. She cried only once all day. We were driving back from the museum and she could not reach her bottle and she cried for it. Those was the only tears she shed all day, even though she missed her nap. There was no fussing when the nurses or doctors looked at her, she was compliant in every way. The doctor did not even need a tongue depressor because she opened so widely for him of her own volition. She did not even struggle when her blood pressure was taken or while being held still for the x-rays. She understood that the big camera was taking a picture of her belly button, and she kept saying "Cheese! Bai button! Cheese!" She was really better than I could have imagined. Poor thing was so tired that she fell asleep by the time we left the parking garage on our way home.


The next few are on the amazing slide on the GI floor in the hospital.

Yeah. Totally lied. This is definitely not short and sweet, but I'm too tired to change the title.

Thursday, July 05, 2007

Wednesday, July 04, 2007

Happy Fourth!

The rest of our week will be fairly busy. As I mentioned, tomorrow morning we revisit genetics. I'm less than enthusiastic about this, because we feel a bit like they've dropped the ball on us. And also because KayTar acts like a spidermonkey on crack during these endlessly long visits. The pediatrician is going to call them to "refresh their memories" before our appointment, so I hope it will be more productive.

Then tomorrow afternoon we have a gastro appointment with a doctor we were displeased with the previous time. I had planned on switching from his service and consolidate both her feeding disorder and GI needs to the feeding disorders doctor, but I forgot about the appointment altogether until this week. I hadn't even written it down on the calendars! When I saw genetics on the calendar, something wiggled in the back of my brain and only then did I remember the double appointment day. The wait to get a rescheduled appointment with our feeding doctor is 3 months, so we will keep tomorrow's appointment with this doctor and then make the switch in time for our next follow up. Double appointments means we will be at the hospital from our first appointment at 10AM, until our last appointments end. It begins at 3:15, so I don't expect to be home much before 6PM with the rush hour traffic we will encounter on our way home.

Then Friday we have neurology bright and early. The appointment is at 9:15, which means I'll need to leave around 7:45. Morning traffic is killer and doubles our normal 45 minutes jaunt to the hospital. So this is me saying I probably will not be around much seeing as today is the Fourth, then the next two days are rather full. I'm sure I'll be back with an update of the medical persuasion Friday afternoon.

But I leave you with a few photos...

KayTar and Dolly. We cut through the doll aisle while shopping, and KayTar really wanted a doll. She chose Dolly out of the cheapie doll box herself. She picked up several different dolls, hugged them to her shoulder and handed them back, dissatisfied, until she hugged Dolly. She had made her choice. They are fast friends, and Dolly is almost as important as Gee (her blankey) these days.

I can't keep BubTar from using the fingers in every photo I take. The second shot, I took with a double flash. His hands were down nicely when I pushed the button...but he had drawn the fingers by the time the second time it flashed. He is quick on the draw.

Oh right, I forgot. He makes this face, too.

KayTar learned to play cards this weekend. Well, she learned to identify cards. You can say "Where is the 4 of spades?" for example, and she will fish it out for you.

She thought she would monopolize on her newfound skillz, and has started an illegal gambling ring. She is calling her contacts in this photo.

"Last call for bets."

But she abandoned her life of crime in favor of a career in medicine.

Have a happy Fourth, everyone. Be back Friday.