7 days in...

Sunday, BubTar came home from camping sounding a bit husky. As the day wore on, his eyes got glassy and he felt the tiniest bit warm. Then yesterday, on the way out to the car, I noticed a rash on BubTar's neck and then peeked down his shirt and it was also on his shoulders. Later, at home, I saw it on his chest and stomach as well.

Yesterday.

(click to enlarge, if you care to hazard a guess at what it is)

Today.


Yesterday and today, he has been whiny and lethargic, although not feverish. We've given Benadryl, but it hasn't fazed the rash. He doesn't seem to have many other symptoms; low energy, and the rash, which is raised, sandpapery, and itchy. It doesn't photograph well, but it consists of tiny pinprick raised red dots...like I said, it is rough to the touch. He had a bit of congestion Sunday, but it cleared yesterday. I think that was more from being outdoors and camping than being tied to the rash. Any ideas?

In case you are wondering, he has not been exposed to poison ivy, oak, sumac, or anything else while camping. He has not eaten anything new, or bathed in anything new. Our detergents are the same as always. He has not been in the heat, either, so as to cause prickly heat. Because it did not respond to Benadryl, I don't think it is any sort of reaction, environmental or otherwise. I think it started on his neck and then traveled to his shoulders, back and then to his chest and stomach. It doesn't seem to be spreading outward, but the dots are becoming more concentrated on his torso.

Does that just leave viral rashes? Because, well, dammit! KayTar is still sick. I've been under sick-kid house arrest for roughly 3 weeks, excluding obligatory hospital, physician, and therapist appointments. And I was hoping we'd get through maybe TWO weeks of school before BubTar started bringing us home lovely little gifts from his school chums.

Here we are, 7 days into the school year and he is be absent for the first time. I won't send my kids to school when they are clearly ill and I don't know if they are contagious or not, even if only with a rash of unknown origins. I'd want another parent to do the same. But 7 days? Really? That's all the buffer I'm getting this year?

Time to restock the Lysol and hand sanitizer. Welcome back to school!





****
And the verdict is: STREP NEGATIVE! Probably viral, slight chance of poison ivy. We got a lovely low dose steroid gel to help the itchies.

Viral or not, I'm counting it as a win, because it could have been STREP and it wasn't! REJOICE!

My [mostly] well-child.

Monday morning, KayTar had her nutrition evaluation for the quarter. The nutritionist was mildly concerned that she hadn't gained an ounce in three months, but she said we could give it three more before starting Pediasure again. Today, we had a well-child check with the pediatrician and discovered she hasn't gained an ounce in 6 months. Although six months ago she was weighed in the minus clothes and today she was clothed, so she might have even lost just a tad. According to the pediatrician's measurements, she did gain a bit of height in the past six months (once they stop growing taller it becomes a real problem) but according to the nutritionist, she hasn't grown at all in three months. And so, either way, we begin Pediasure again. She will be going in for weight checks every two months for a while to keep a closer eye on things.

To make things more complicated, her eating has taken a hit recently. Yesterday it was only three stage 2 jars. 12 ounces of food, all day long. She's been making a habit of refusing all day, and finally accepting food around dinner. Some nights she will still take in her 5 jars for the day, but split between 4 evening hours. A few days ago, Josh called me from work and thought KayTar was having an episode because of the level of distress she was in when I answered his call. She wasn't having an episode. I had asked her if she wanted lunch. Only asked. I didn't pull out a jar of food and show it to her. I didn't make her sit in her eating spot. I didn't even have a spoon in my hand. I only mentioned it and she was in hysterics. I know she is two, and two year olds are nothing if not impetuous and predisposed to dramatic emotional outbursts, but methinks a simple "No." would have sufficed. Today, though, she has eaten two jars already, which is a relief. Two jars isn't much, only 8 ounces. But she took it and did so willingly, which is a nice change of pace.

I asked the pediatrician about switching from bottles to cups or straws, since KayTar is slowly becoming competent in drinking with them. She still struggles a good bit, but the skills are emerging. She said to leave things as they are. We all know KayTar is quite capable of going on strike from food and drink, and because she gains most of her calories through the bottle a switch could be detrimental, especially with her weight already a bit spotty. The "She will drink/eat when she is thirsty/hungry. She won't starve herself." line of thinking does not hold true with KayTar. She will indeed refuse to the point of weight loss and nutritional deficits.

She received four immunizations. We postponed her two year set in February, because she was ill at the time. Strep, I think it was. Today she finally received them. When we go back in two months for her weight check, she will also get her flu shot. The pediatrician doesn't want to risk her catching it this year, and neither do I. We already dance in that limbo between healthy and ill too often. With her nutrition and weight concerns, a little flu could seriously set us back. Or send us in for a little stay at Chez Hospital. We can live without that for a good while.

She's pooping well for a change. [poo talk, on a mommy blog, who would've thought] We were in a scary place a few weeks ago, involving the purchase of an child-sized enema. Thankfully with a few well-placed Miralax adjustments, we were able to work out the kinks and get things moving again without said-enema. When we go back in two months, we will also go in for GI x-rays, just to be sure things are really clearing out. The pediatrician said it takes a few months of good motility to clean out a clogged bowel. Hopefully, things will be nice and sparkly when we get it checked out.

We got the results from her spinal fluid tests. Normal. Everything is normal. Dr. H came in and said, "It's all normal, don't you hate that?" Because we DO hate it. We'd never wish for something to be wrong, but something IS wrong and we'd all like to know why. All these inconclusive tests are frustrating. There is a cause somewhere in her little body, we just can't seem to find it. Jury is still out on the EEG. I called the neurologist's secretary, but she said the report isn't in yet. So we wait.

In other news, the croup she had a few weeks ago never really went away, although it doesn't sound anything like croup anymore. She's been hacking and gagging at night for two weeks now, although her lungs sound clear. We've had quite a few late nights. We've discovered that the more tired she is when we tuck her in, the less coughing she does. The less coughing she does, the lower the odds are of her vomiting all over herself and her bed. KayTar seems to know this as well and is reluctant to go to sleep at anything resembling a normal bedtime. She's been up past midnight more than once this week. Things will go back to normal soon, we've done this enough times to know that for sure. A few late nights of partying with mom and dad don't do any long term bedtime damage, at least not in our house. Once she is feeling better, we'll go back to tucking her in at 9:30 and she will drift peacefully off to dreamland. But in the meantime my evening Me Time has taken a hit. She's been up until 12 and 1am, so I've been up until 1 and 2am to make up for it. I have to have a bit of concentrated adult time, even if I have to sacrifice sleep in order to get it. Life will return to normal soon enough, so we just have to wait it out and make due in the meantime. And waiting is what we do best, evidently.








PS: If you make it through this, you get a gold star. I didn't realize how long it was until I previewed it. Eeek.

Technical question

Can you see my banner? I know of at least one reader who is unable to see it. Anyone else having issues with it?

I'll be back with a KayTar update this afternoon. Until then...

Transference.

I am a procrastinator by nature. This began in school, of course. I've never completed a project more than 24 hours before a deadline, at least not once my parents began leaving it to me to get things done. Homework was often done in my car before school or inside my desk in another class. Though, I was always an excellent student, even half-assed work generally garnered an A. This has transferred to life, to the workplace. I need my employers to give me, what have been called "drop dead dates" or I can't organize my workload. I need to know the final moment something must be completed, and then I organize accordingly. Instead of working towards a goal from the beginning, I try to time it from the end. This has now transferred into blogging, evidently, because today is the day after Hump Day, and here I am with a Hmmm.

School. It's a timely topic. My son just started Kinder this week! He is attending private school, a half-day program. There are a few possible topics built in right there. But that isn't what I'm going to discuss. My other child, my baby KayTar, will be, most likely, starting school herself in February.

My baby! In public school!

It sounds distant, doesn't it? February. But in October, we have our first meeting with the district. Next month, she has her very last ECI evaluation. Services will continue, but only until the switch in February.

We never intended to deal with the public school system. We decided to put the children into private school before there were any children in existence. It was a given for us. Financially, it is a stretch, but it is worth it for us. Then came KayTar, and not only will we have to enroll her in public school to allow her to get the assistance she needs, we have to do so when she is 3. On her third birthday, specifically. In six months. And I am wholly unprepared. It was difficult for me to send my capable, social, five year old to school this week, and it is only a half-day program at the same school he attended last year. I can't imagine dropping my three year old KayTar at public elementary.

First, the school district will review her paperwork that is transferred from ECI. Then they will do their own evaluation of KayTar's development. This will stand alone, not affected by reports from ECI or from her current private therapists. It will only be what they observe during the session. Her team leader/developmental therapist said, that with her hearing loss, motor function and speech delays, along with the feeding disorder, she will likely qualify for the classroom setting, half-days, 5 days a week. As she said that, KayTar read a word out of the book they were looking at together. Her therapist looked at me and said, "But don't let her do that in the evaluation. I don't know if they'll buy it if they realize she is reading." I think she was half-joking, but it concerns me for two reasons. First, I can't control when she reads. We were driving down the road two days ago, and passed a Work Boot store, and she pointed and exclaimed, "Work!". The list of things she reads it still growing, and it cannot be controlled. Second, I don't want to ever have to downplay her strengths in order to have her weaknesses addressed. Yes, I am fully aware of her capabilities and incapabilities. I have a realistic view of what she can and cannot do, and I know that she needs services to fulfill her educational needs, whether she is reading or not. I want the school and the teachers who are working with her to accept this as well. I don't want her to be disqualified from receiving assistance for her deficits, because she is ahead in certain areas, and I don't want her strengths to be ignored in favor of her weaknesses. I feel that this will be a difficult balance to achieve, and that is worrisome. It cannot be remedied by private education, at least not in our area, because even the best schools are not equipped to handle children with any sort of substantial differences.

In February, as I've mentioned, we lose her amazing insurance. All other plans that we've looked into do not cover private therapies for children with developmental delays or disabilities past the age of three. No coverage. If she does not qualify for services through the district, she will fall through the cracks. I am so thankful for the Birth to Three initiatives that have provided such excellent services for us and others like us, but age three is not when these issues end. Private therapies cost a pretty penny, and right now, she receives (from both ECI and private therapists):

Developmental therapy once per week, 30-45 minutes
Physical therapy once per week, 30-45 minutes
Occupational therapy, once per week, 1 hour
Speech therapy, twice per week, 1 hour each session
Nutrition evaluations, once per quarter, 45 minutes

There will be no way to continue a load like that without assistance. And none of these therapies are frivolous, they are all necessary for her to continue. So, I hope that when the time comes, the district will decide she qualifies for their programs. Our fate is in their hands, essentially.

For those of you with older children, who have navigated the murky waters of the therapy to district transition, how did you manage it? Is there anything I should know? Wisdom about the IEP process? I have many books to read, but I know that in the end, personal experiences are much more valuable that anything that I can read in a book. If you've got it, lay it on me.

Leaps and Bounds

This time, last year:









375 days, one pants size, one shirt size, and three shoe sizes later.









Happy first day, my big kindergartener.

Yesterday, Today, Tomorrow

Yesterday, I took BubTar for his start of school haircut. As I watched him sit in the chair, I realized I had scarcely had to remind him to be still. I didn't have to hold his head steady for the delicate parts, as I had in the past, either. He almost doesn't need me hovering nearby, unless he has an unfortunate itch on his face. Soon enough, he won't need me to stand with him at all, I'll be able to sit in the waiting area with the other parents of big kids. Watching him sitting there so calmly, I thought of his first haircut full of wiggles and wobbles, when my chubby baby became a toddler boy. Just then he giggled as the buzzer tickled his neck and I saw that toddler's gleam in his eyes.






Today, BubTar when to his first major league baseball game. One of our hometown heroes had his number retired. It was a nice ceremony, and I couldn't help note that this player's conclusion in the game was my son's introduction to it.



Tomorrow, he starts kindergarten. He'll be attending the same private school he attended for Pre-K and he will still be in a half-day program, so it doesn't feel quite as monumental as if we were jumping out of our small pond or starting full day classes, but it is still a milestone. Last year was huge; it was the first time he attended school without me on the premises, but this year, I'll have a kindergartener. Wasn't he just this big?



I swear it was only yesterday.

It's my blogday...

One whole year. Amazing how that happens, isn't it? A year ago, I sat down in front of my computer and wrote The Waiting Continues...and still it does. I could easily have titled today's post the same and it would be no less true today than it was a year ago. Sometimes it seems like nothing has changed.

I know that I've changed, though. I started this blog at a point of helplessness. I had lost control over everything. I had recently discovered that things weren't right with KayTar and had dropped everything to pursue answers. We knew little to nothing. Those first posts make me laugh a bit now...with my rosy cheeks and optimism, so sure answers were right around the bend. At the same time I'm sad for that girl...the one who had her hopes raised so many times, just to watch them fall again. She just didn't know. I know more now; much, much more than I'd ever thought possible. I have enough experience to know things don't always go how you'd like and answers are elusive. Questions sometimes are not answered. Hopes are sometimes dashed. But I've also how to navigate these situations, how to persevere, how to keep myself from drowning in it all. This blog has given me the space to honestly process my reactions and feelings through this tumultuous time in our lives. It has taught me to work through my emotions and continue on. It has become a record of our journey. It has been key in making this new life of ours something I can enjoy and find beauty in, every day. It has given me a community of beautiful, smart, intelligent, caring, supportive women (and men, Hi Bennie!) that have carried me though even the toughest times. I can't imagine not having you all with me, even if we are reduced to words on a screen. Words can be powerful, and you all know how to wield them with skill. You have been my friends, confidants, sounding boards, and cheerleaders. I've needed that this year.

One year later, we might still be waiting on those same answers, but it is so much easier waiting in such good company.

Thanks, from the bottom of my sole(s).

High/Low

Highs:

*KayTar was an angel. Really. A complete angel. I could not dream of a more well behaved two year old.

*Julie and the little P's visited. They braved driving into town and getting lost just to visit us! Patience made KayTar a book, although she was too shy to tell her the story. KayTar loves it all the same. She's dragged it around quite a bit.

*My sister and her family came up, KayTar had a great time playing with her cousin.

*My parents and Josh and BubTar visited last night. KayTar loved it. It made me a bit crazy, though. Hard to pay attention and control the environment when so much is going on. But it was nice all the same.

*Tons of one on one time with KayTar. Cuddles included. It was a bit exhausting at times, feeling like I was on all the time, but it was also really nice to be shut in with her for a bit. And the cuddles...oh, the cuddles.

*She won the art project contest last night! It isn't a contest, so much as a name drawing of participants, but she won! She got a Ty Beanie Bear, which she loves and hates. She likes to give it a bit hug and then wants me to take it far, far away for a while.

*BubTar got to go up to the radio station and sit in the DJ booth and request a song! His studio guest name tag said "Bling BubTar". Heh.

*The staff was brilliant. Everyone was so kind and helpful.

*KayTar was really friendly with the nurses and doctors. She taught one of her nurses to say "I'm the nurse" in sign language! They all thought she was adorable, especially because she knows all about their equipment and was pretty willing to assist them. She even told the doctor, "Bye doctor. Thanks." after her LP. What a sweetie.

*They brought dogs around to visit with her. Pet therapy, it is called. Pretty nifty.

*She didn't have to stay in the bed full time, she was hooked up to a backpack that was plugged into the wall and gave her range of the room, thankfully.

*The LP went well. She cried more when getting her electrodes removed that when she had her LP. They gave her Ketamine, though, so she wasn't completely lucid. I was totally nervous about it...I almost cried whenever they would discuss it with me...and it turned out to be smooth sailing. Not exactly pleasant, but none of the tests are, honestly.


Lows:

*Our sleep schedule:
Night one: She went to sleep at 10pm, I went to sleep at midnight. She woke up at 1:30 and was awake until 4:30am. Rounds starts at 6am.
Night two: She went to sleep at 9:30, I went to sleep at 10. She woke at 1am, and was up until 3am...rounds start at 6am.

*Discovering that KayTar is allergic to all adhesives. The first night, she woke up because her ear was 3-4 times the normal size. I couldn't even feel cartilage anymore, just hot gooey flesh. It was a bit like this:



But just the ear portion. It was starting to spread around her neck and to her other ear as well. The nurses and techs came in, the floor peds resident had to come by, they had to get Benadryl approved for her and then it took the pharmacy ages to actually deliver it. They wrapped her head in something different the second day, but last night she still woke up with some redness and swelling. We fell asleep before the Benadryl arrived, though. Today one she was unhooked and I bathed her, we discovered she had a rash all over her torso and swelling every place that she had tape or glue touching, even the mild kind. She was all red and puffy. They noted her chart. No more sticky for her.

*Being sprayed with vomit in the middle of the night with no hope of showering.

*Having to change KayTar's sheets twice in the middle of the night because of the vomiting.

*She didn't have an episode. Or a drop attack. And she only had a couple eye movements. I feel like it was a huge missed opportunity. A huge, expensive missed opportunity. But they did at least get a couple eye movements (and they didn't see EEG changes during them, we have to wait for the final report, though) and I know it wasn't a total waste. But still. Ya know.

*Hearing that if need be, they'll call us back for a repeat. Ack.

*The wait for results

Neither high nor low:

We were on live video 100% of the time. Its an interesting feeling when someone comes in and says, "Oh hey, when _______ happened, that was hilarious!" and you realize they really are watching all the time. Like the Real World, with electrodes.













And again...thanks to you all for your wonderful support. I'll be by your blogs shortly. We are still in recuperation mode, though. KayTar napped for 4 hours today. Its going to take a while to get back to normal. See you soon.

ETA: We're home, they released her at 11 this morning. I forgot to say that. ;) I had it up in an earlier post, but I replaced it with this one.

KayTar's Stages of Hospitalization

Scary


Calm


Scared...not to be confused with scary.


Silly


Mad. Or so she says, but the poor kid can't be mad even when she tries.


Hilarity.


Surprise.

Now I need one for: allergic reactions, vomiting, and being awake from 1:30-4:30am.

Stories to come. We're holding up. I intended to write a real-ish post while she napped, but she woke up after 20 minutes and is sitting next to me eating chips. I'm estimating she's going to need me right about---oh crap...now I need a photo for diarrhea. Gotta run! No pun intended...well, maybe a little. ;)

PDC (post diaper change): The LP (lumbar puncture) is tomorrow morning..thoughts and prayers would be most appreciated, as always. Have I told you lately you guys are amazing?

I'm a nerd.

As I sit here, half my brain power is being used to obsess about the number/size of bags I am bringing to the hospital.

First round:

Small suitcase
Airplane carry-on
AOL laptop bag
Purse (which no longer fits in my big green bag)

Second round:

Medium sized duffle
Airplane carry-on
AOL laptop bag with purse inside

Third round:

Medium sized duffle (with purse inside)
Airplane carry-on

Is that excessive? This is when the not knowing what to expect eats away at me. I imagine people's reactions to my freaking luggage. I have no clue what normal people bring to the hospital. I've never known we were going in, so I've never had to prepare before.

Yes, I do know that this is called "avoidance" and that I'm "fixating on the bags to distract myself from the anxiety caused by the impending hospitalization". But thanks for checking. ;)

So the goodies list for KayTar includes:

Mr. Potato Head and lots of spare parts
ABC wooden block set
Playdoh (3 colors) and cookie cutters
Crayons
Pens
Scissors
Construction Paper
Little People animals (she isn't much for the people)
Coloring sheets with her favorite characters
Foam stickers, tons of them.
Flashcards, a few different sets
Cars (I figure we can draw roads on the paper and drive 'em around, or make ramps with books and watch glide)
Playing cards
Books:
Goodnight Moon
Guess How Much I Love You
Is Your Mama a Llama?
Five Little Monkeys
Barnyard Dance
(I think I'm forgetting one or two)
Photo album of her favorite people
small magnadoodle
ABC puzzle

Then the laptop, of which we have joint custody, and a few choice DVDs.

So, preschool room in a bag, really. And evidently, preschool rooms are heavy. Just ask Josh, since he'll be the one carrying it. ;)

Thanks for the thoughts and prayers, I'm sure it will make all the difference for us. To show our appreciation, KayTar will now preform a trick for you all.



She likes to watch TV that way. My little contortionist.

I'm hoping I'll be able to update, at least at night once she is asleep. Be back soon, I hope.

So this is happening...

Dean keeps getting farther and farther every time I hit refresh on the National Hurricane Center website. It appears Tuesday will go as planned. This weekend, I bought a few little things for KayTar...two Chinese food sized boxes of foam stickers, construction paper, bubbles. I looked all over for a good sticker book, like the one Beck has mentioned, but I came up empty handed. We already have two drawers full of art supplies, including playdoh. This evening I'm going to make one last trip for goodies and trashy celeb magazines. I like to read pure mindless crap while in high stress situations. I don't have the mind power for anything with substance. I've washed many loads of laundry, so the boys have plenty of clothes to wear while I'm gone. No, we do not live in a 1950's home where men cannot do laundry, it just so happens that with our chore division, I chose laundry, while Josh cooks, cleans the kitchen, and does the dishes. BubTar's school supplies have been purchased, labeled, and packed into his new school bag for next Monday, just in case we stay through Sunday. I'm going to go clean the bathrooms in a bit, fold towels, put away socks, just so things are all set while I'm gone. I'm calling the hospital in a bit to see what is and is not allowed in her room. I have to cancel therapies for the week, including her inaugural private speech therapy appointment. Bummer. I have to call and notify the specialists that the appointment has been moved up. I've got lists and lists of things to do, things to pack, things to ask, things to organize.

I still feel very nervous, because I have no idea what to expect. When the appointment was hypothetical and months away, it was easy to accept...but now, with it right here, tomorrow, it is a bit more worrisome. I feel like I have a good list of ways to entertain her, thanks in large part to you all; but I've never been through this before and therefore, I have no valid model to use to prepare myself. We've been hospitalized before, but she was sick and in a different part of the hospital, experiencing different things altogether. She's had EEGs [side note, I love the hopeful tone of this post...I totally misunderstood the difference between she wasn't having an active seizure during the EEG and not having them at all, poor little Kyla ;)] before, but never long term, so again, I can't really use that to prepare. The thought of trying to help her through an episode, in a hospital environment while hooked up to a machine doesn't seem too pleasant, but at the same time I know it is necessary. We don't take her to the ER when she has them, because we know it would just make them worse with the lights and noise of the hospital. It is workable, though, and the results it could yield would be priceless in understanding these events. She will have other tests, including the dreaded LP, which I'd rather not discuss. I'm hoping this doesn't reawaken her fear of doctors. It is so nice to have her cooperate through her exams these days. She even hugged the pediatrician last week. The previous appointment, she had screamed and said, "I cry!" repeatedly and the closest physical comfort the pediatrician could offer was a head pat. Our pediatrician cares a great deal for KayTar, and it was so nice to have KayTar reciprocate instead of working herself in to hysterics. It makes all of her various appointments run much smoother when she isn't screaming the entire time I try and speak with the doctors. I'd rather not revert to those days.

I am prepared for this, I think, but the anxiety comes from not know exactly what this stay holds and therefore I can't truly be prepared. I suppose I am a scout at heart, being prepared is a must, especially in situations where so much is uncontrollable. And so I make lists and organize, because it is the only way to still my anxious, fluttering heart.


Hospital stay, version 1.0.

PS: If you have anything else to add of the Great Toddler Entertainment Smörgåsbord 2007, please feel free to add it.

A little help?

Two weeks ago, the pediatrician and I were discussing the October EEG and I decided to call and be the squeaky wheel, just check for cancellations. When I called, the nurse said, "I'm sorry, ma'am, we don't have any right now, but since you're on the--Oh, you're NOT on the cancellation list. Would you like me to add you?" Of course I said yes, because the day we scheduled the October appointment I was told I would be added to the cancellation list. I wasn't upset, these things happen. I was just relieved I had called and we were now actually on the list.

This Monday, while Dr. H and I were on the phone discussing a certain small person's bowel habits (we had a close call and almost had to give an enema), and the talk turned to the EEG. She said, "It never hurts to call once a week...eventually they'll get tired of the calls and try and get you in a quickly as possible." I never had a chance to try out her advice, because yesterday we got the call. An opening, next Tuesday at 1:30.

I'm thrilled and nervous. Maybe I'm slightly panicked now, too. I'm thrilled because we don't have to wait until October! Also, I know perhaps I'm tempting fate here, but she hasn't had an episode in a month. If she can hold out, I'm sure with the stress of the hospital environment, we can get one of these on record and that would be priceless. [side note to Fate, I'm not asking for a pass here or being "hopeful" that one might not happen...I'm hoping one will happen, but at the right time. If you could indulge me this one time and not let the Jinx loose on my sorry arse, I'd be much obliged] I'm nervous because this is a 48 hour to 5 day EEG study. I will be entertaining a healthy, active two year old in the hospital for 2-5 days. Oh, and she'll be hooked up to one of these:



I'm panicked because effing Dean is headed this way. We won't know for sure if the hurricane will grace us with his presence until Sunday, but the guesses for now it that he will, to some extent. Josh is on an emergency data recovery team at work. That means that if there is going to be an evacuation, we are flown out with his team to a hot site. That means we don't need to go through another round of hellish Rita flashbacks. But it also means that if we have to evacuate, I'm going to have to choose between keeping the appointment and riding things out in the hospital while Josh flies across the country and my parents take BubTar with them wherever they go....and giving up this most perfectly timed of appointments. I don't think I could bear to have us parceled out like that in case of an evacuation, so if Josh gets the call, I think we'll cancel and fly away...but I can't express how much I don't want that to happen. We need this appointment. When we accepted the closer appointment, our October date was canceled, and if we have to reschedule, I'm sure it will not be before December. Our wonderful insurance runs out in February, so we're always mindful of that when rescheduling. If they are full up until February, then we're in trouble. Initially, they told us that the first available was February, but they pulled strings to get us the October date. I don't know how a reschedule at this point would go. If you lovelies could collectively send some thoughts, vibes, prayers...whatever you can manage that this can play out and we can get the information we need, I would be infinitely appreciative.

Now on to the practical bit of what I need; I know a good portion of my readers are also parents of two year olds, and even if you aren't the parent of a two year old right now, you probably have been in the past. I need ideas of things to keep my KayTar happy in the hospital. For 2-5 days. Hooked up to an EEG machine. I'm good at this stuff, I can keep KayTar entertained so she will stay in her stroller for two hours in the pediatrician's waiting area, but 2-5 days seems like a tall order. So give me your best tricks. Also, if you've been in the hospital with a young child, let me know necessities to be packed, both for her and I. I'll be solo parenting this one. BubTar will be with my parents while Josh works, then with Josh in the evenings. I need a big bag of tricks to get through this.

I am so nervous about this actually happening, but I am excited as well. Answers. Maybe, just maybe, we'll learn something through this. She will be undergoing other tests as well. The geneticist and neurologist will be ordering things, including a lumbar puncture, which I am dreading; but I hope when our stay is over we know a little bit more than when we were admitted.


Last week, one year ago. Our very first hospital trip for an episode.

On (my) Life

I was sixteen when I graduated high school.

I was seventeen when I got married.

I was eighteen when I had my first child.

I was twenty when we purchased our first home.

I was twenty-one when I had my second child.

My life hasn't unfolded in typical fashion, but each one of these events was a definite choice. Most who share the path I've traveled, don't necessarily do so by choice. A surprise pregnancy or a multitude of other events prods them onto this path. Outsiders frequently do the math (BubTar is 5, we had our 6th wedding anniversary in May) and look at us knowingly, except they don't really know. We chose to get married, then we chose to start a family. And I wouldn't change one of these decisions.

I started college at sixteen, on the heels of graduation. I was at least a full two years younger than everyone. I wasn't exactly sure what I wanted to do, but I was studying child development. My first semester went great. My second semester started well, but then I received a job offer that required me to drop about half my course load and I did it. Towards the end of the semester, I had to have knee surgery. I missed finals because of it. My professors were all understanding and gave me modified assignments I could just drop off at their offices. Well, I didn't. I had surgery, and three weeks later I got married. I was distracted and let's face it, I was little more than a child in many ways. Josh was a given. We knew that we could spend the rest of our lives together. It was an easy decision. Of all the things I didn't know at that age, that was one of the few I did know. He and I, we could walk through this life together. In other areas of life, there were still so many unknowns; mistakes to be made, things to be learned about both the world and myself. I had growing up to do.

We got married and took a semester off to be together, the adjust to this new life. Oh, and get pregnant. So I took off the next semester as well. And the next. Now that I had this small person in my full time care, I realized that I didn't want to be in charge of other people's children as my source of employment. I didn't know what I ultimately wanted to do, so I put off school a bit longer.

I went back while pregnant with KayTar, I finished a semester, but it was difficult because her pregnancy wasn't really low key. I had preterm labor starting at 22 weeks and missed classes here and there on days when I struggled with contractions. Luckily, the classes I was taking were subjects that came naturally to me and even missing on occassion didn't set me back too much. The next semester held child birth and life with a newborn and so again, I didn't return. And I haven't since. Our life hasn't had much flex-time. We both worked full time, until things with KayTar became my full time job. Without knowing exactly what you are pursuing, adding stress to an already busy family life isn't worthwhile. At least it wasn't for me.

But I think that has changed. Having KayTar, with all the challenges and questions, has opened up a new world for me. The world of medicine, and it fascinates me. The fascination isn't limited to conditions that are linked to KayTar, medicine in general interests me a great deal. Not in the passing interest of youth, but really and truly engages me. Medical school is but a pipe dream, too many hours, too many dollars, too much stress on the family. But I have an interest. I know my direction. I feel competent and capable of starting out on a new path.

And so, in the babiest of baby steps, in October I'll be going back to school to be certified in an area that will allow me to gain experience in the field while concurrently helping to fund my foray back into school. The plan is certification, nursing school, and beyond. It is a bit overwhelming, suddenly making these decisions after staying up nights light-heartedly discussing them with Josh. Stepping on the path I've been eying for a while now seems monumental.

Our lives are packed already. KayTar is a full time job, I mean that in the best possible way, but it is true. It seems impossible to think we have any wiggle room in our schedules, but I know it is there. I'll be taking classes in the evenings once Josh is home with the kids. It will be a bit like shift parenting for a while. I'll miss dinner and return home once the kids are tucked into bed four nights a week, but there will still be a couple hours to spend with Josh before we head to bed ourselves. Spending the day with the kids will make it easier to miss out on the bedtime tuck in. It is doable, but it seems daunting all the same. Thinking of it as a far off goal is easy, the act of moving towards it is not quite as simple.

BubTar goes back to school half days this month, and KayTar will most likely be in a half-day in-district preschool program for kiddos like her come February. Next year, BubTar will be in a full day classroom. The following year, KayTar will be entering full day Kindergarten. Slowly but surely time will be coming back to me. Time away from the kids, time that can be spent working or in school. It may takes several years to walk down this path and reach the goals at the end, but being on the path, taking the first tiny step, it feels good. But I'm left with one very important question:


When will I find time for blogging? ;)

Disjointed

Do you know that feeling when you have a post coming, you even know the subject matter and the stories you want to tell, but the words just refuse to gel properly? They come out forced and jumbled and refuse to work with one another? And so until they can learn to work as a team they are all going to sit in edits for a time out? I'm having one of those days. Perhaps all the thinky I did yesterday zapped my brain.

KayTar has croup. She started sounding a bit husky while we were camping, but we thought it was just her being allergic to nature, like her mum. Once we got home, the huskiness morphed into coughing spells, but nothing too serious. It was the "a-hem, a-hem" type coughing so no worries. Tuesday night it evolved into the "BARK! wheeze. BARK! wheeze. BARK! VOMIT!" type cough, so I took her to the pediatrician. Croup it is. She wasn't feverish yesterday, but she is today. I had a busy weekend of playdates planned, one for BubTar on Friday, then over the weekend I was supposed to have one with Amy, and one with Julie and Jenny, too. Jenny's Hailey is very ill, moreso than KayTar, so I think between the two of them, we'll be canceling the playdate. Amy has a little baby, so we are keeping our croupiness to ourselves for sure. Does she HAVE to get sick when I have so much promising adult conversation on the horizon? It can be rescheduled, but this weekend was going to be pretty amazing. Imagine, children entertaining each other, grown ups discussing things other than the WonderPets latest rescue. Instead it will be spent steaming KayTar's lungs in the bathroom for 30 minutes at a time, cuddling on the sofa, and pushing fluids. Not too bad...especially the cuddles.



Speaking of the WonderPets, BubTar would like to know why they "always end so happy? Why can't they have a sad ending, just one time? I'm so BORED of happy endings." Boredom is the disease of being five, I think.

I made some important life-type decisions last night, but I don't feel like blogging them yet...especially because my words refuse to work as a team. I will soon, though.

Oh, and it is raining here. Just a bit.


My street, already flooding.

I'll be back tomorrow, hopefully with more to say and the ability to actually express it. For now, I need to turn off my machine before a power surge does it for me. ;)

Plus, a couple little cuddlers are waiting for me.


Who can resist that? Not I.

Nature Kicked My Butt

The trip was amazing. It was so nice to get away for a weekend with friends. We were all a bit apprehensive about the cabin because we reserved it sight unseen, but it turned out to be wonderful!










When we picked up the keys, the woman at the desk said, "There are nice group showers right down the road!" and Josh wondered why she would mention that at all. When we got to the cabin, we understood. No shower! We would, in fact, have to brave the group showers.

That evening, the men made a fire in our fire pit. Josh had brought his fire sticks and realized the reason the pack he had purchased was one dollar cheaper was that it did not come with matches. In fact, no one had brought matches or a lighter...so the boys were forced to improvise. The result of the improvisation is that we now have a Jeep cigarette lighter stuck in our Honda Civic power connector. The fire was finally started by heated a fire stick on the element of the electric stove in the cabin.



We ate a late dinner, put the kids to bed, and played board games and drank. It was so relaxing. No TV, just good conversation and company. Oh, and the drinks were classy.



Yeah, that is cheap tequila and the Big Bucket-O-Margarita mix in one of KayTar's leftover 1st Birthday party cups. Class to the max.

The next day, the boys (and KayTar) enjoyed some networked gaming. Yes, we did not have a shower, lighter, or matches...but we did have a hub and network cables. This is what happens when you camp with techies.



The women folk went to town for magazines and coloring books (and spinach dip) in the morning, and then we had a yummy lunch before naptime. While the kids napped, the men went and scouted the hike to the swimming hole and the women laid on the sofas and read magazines. The guys came back an hour later, drenched in sweat, but claiming it was totally doable. They said they were only that sweaty because they had walked there and back with no stops. So after naptime, we put on our swimming suits, got sunscreened and bug sprayed (natural, by the way, and it WORKED) and set out.



See the hopeful spring in his step? If only he knew.

Now would be a good time to tell you that we had a heat advisory in effect this weekend and that you lose a gallon of water an hour in this time of heat. Oh, and it had been raining for a few week prior to our visit. The swimming area had been closed because of the water, until Josh whined a little. I think they opened it prematurely.

So, on we blindly stumble.



This was the last photo I took for a while.



Because of the misery.

The trail was covered in sand and mud alternately. We were all wearing Crocs or flip-flops. We had to cross three stream. Josh nearly fell down and embankment with KayTar on his shoulders. BubTar was covered in sweat and getting tired fast. My shoes were full of sand. BubTar fell on the way down and embankment. We were sweating. A lot. BubTar was saying, "How much longer?" Josh was answering, "There is still a little bit to go." I knew he was lying. We passed a sign that said, ".9 miles to go." We had only been walking for .1 mile. We kept walking. By the time we got to the first rest bench, we looked like this.



We discussed turning back. Josh claimed, "We have a bit more to go." Our friend, J, fessed up, I think it is more than a bit. We are maybe 1/3 of the way there. Maybe." KayTar looked sunburned from the heat. Josh said, "If we are talking about turning around already, we need to. It doesn't get any easier. The next FOUR crossings are more difficult." So around we turned. On the way back, we ALL fell on the embankments. Except J, he was the lucky one. L fell first.



Then I fell. On large protruding tree roots. On my bum. It was inches away from being REALLY intimate with me, if you get my drift. I have a deep red and purple bruise on my bum and my tailbone hurts like hell. This is me shortly after...I was not having my bathing suit clad bum immortalized in photography, but I heard it looked spectacularly bad.


Hi! I'm Kyla! I have no idea have bad my ass will be hurting in a few hours! Or for the next three days at least.

While snapping this photo of me, L fell again.



Amazing. I can't tell you how much I wish I had video clips of everyone's falls. It would be amazing. And it would possibly soothe the pain in my butt.

We were still hot. And sweaty. And now covered in mud. Awesome.





When we got back, L, KayTar, and I headed to the group showers. We realized that this was all Josh's master plan to make communal showers seem like the best thing ever. Because it was the best thing ever. And ice cold shower after that was akin to heaven itself. Even though I had to wear shoes. And keep KayTar from falling and splitting her head open. It was still heavenly. Funny how traipsing through hell lowers your ideal of heaven. But it sure did. The boys could not stop apologizing for their unrealistic expectations, and what those expectations did to my butt.

Later, once the kids were in bed, we returned to our busy drinking and playing schedule. Alcohol numbs the pain in my arse. For sure.



Mimosas in a plastic cups. Can we get more classy? No. Not possible.

Anyway, that was our trip.



KayTar says "Thanks for looking. My mom's butt hurts really badly, so she is going to ice it now. All this sitting and typing has been a bit much for her. She'll be back tomorrow with more photos of me and my brother."

KayTar isn't kidding. I fell asleep last night with an ice pack on my rear. Best souvenir ever, right? You know you are jealous. Okay, seriously, I must go ice my tush now. See you guys later, possibly after I buy one of those lovely O-ring pillows.



Me, before being assaulted by the stick. This is now the expression I have while imagining the comfort of an o-shaped pillow.